VOLUNTARY CONFLNEMENT: MOTHERS' DESCRIPTIONS OF PROTECTIVE ISOLATION WITH INFANTS HOSPITALIZED DUE TO SEVERE COMBINED IMMUNE DEFICIENCY

Sarah Yates O'Neill

A thesis submitted in conformity with the requirements for the degree of Master's of Science Graduate Department of Nwsing University of Toronto

O Copyright by Sarah Yates O'Neill (1999) National Library Bibliothbque nationale 1*1 of Canada du Canada Acquisitions and Acquisitions et Bibliographie Services services bibliographiques 395 Wellington Street 395, nie Wellington OttawaON K1A ON4 ôttawa ON K1A ON4 Canada Canada

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The author retains ownership of the L'auteur conserve la propriété du copyright in this thesis. Neither the droit d'auteur qui protège cette thèse. thesis nor substantial extracts fiorn it Ni la thèse ni des extraits substantiels may be printed or othewise de celle-ci ne doivent être imprimés reproduced without the author's ou autrement reproduits sans son permission. autorisation. VOLUNTARY CONFINEMENT: MOTHERS' DESCRIPTIONS OF PROTECTIVE ISOLATION WITH INFANTS HOSPITALIZED DUE TO SEVERE COMBINED IMMUNE DEFICIENCY Master's of Science, 1999 Sarah Yates O'Neill Graduate Department of Nursing University of Toronto

Abs tract Central teneta of human geographical theory were used in a qualitative study to analyze mothers' recollections of spending prolonged periods of time in a laminar air flow (W)room in protective isolation with infants diagnosed with severe combined immune deficiency. Five mothers whose infmts had been successfully treated for SCID were interviewed. During hospitaiizations averaging 10.5 months, mothers spent an average of 10 hours in the LAF room each day dressed in fidl surgical garb. Infants' treatment trajectories became linear fi-ames of time reference within which mothers felt suspended in daily cyclical LAF room routines. Mothers' ascribed complex and paradoxical meanings to the LAF room. They saw it as a place of protection and salvation and as a place of confinement and isolation. Cornmitment, love and concern motivated the mothers to keep returning to a place that otherwise may have ben unbearable. F'indings yielded numerous concrete implications for nursing practice. Acknowledgments 1 wouid iike to tbank the foliowing people for their involvement in my thesis endeavour: my thesis advisor and mentor, Dr. Patricia McKeever, whose high expectations and sincere belief in the importance of the project kept me motivated to do my best work; my cornmittee members, Drs. Ruth Gallop, Francine Wynn and Jean Wittenberg for their ongoing support and astute comments and, finally and most particularly, Peter and my family who had endless patience and who knew when to push, encourage or sympathize. TABLE OF CONTENTS .. Abstmct ...... u ... Acknowiedgrnenta ...... m Table of Contents ...... iv .. ListofFigures...... vu ... ListofAppendices...... m Chapter 1: Background...... 1 The Research hb1em...... 6 Review of the Librature ...... ? IsolationResearch ...... 7 Mothers of Hospitaiized Children...... 9 Summary...... 16 Conceptual Orientation...... 18 Spœ...... 19 Place...... *...... 20 Time...... 21 ResearchQuestions ...... 23 Chapter 2: Design and Method...... Samphg Strategy...... 24 DataCoUection...... 25 DataAndysis ...... 27 MethodologicaIRipur...... 28 Ethical Considerations...... 30 Limitations ...... 31 Chapter 3: Findings ...... 32 The Characteristics of the Mothers and Inf'ts...... 32 Thehtewiews ...... 35 Substantive Findings ...... 37 iv Chapter 4: Putthg Weon Hold ...... 39 Entering the EAF Room ...... 39 Leaving Famiiiar Places...... 42 Chapter 5: Mothers' Ddy Experiences in the LAF Room ...... 46 DailyRmtines...... 46 Motherîng Activities-Protection...... Guardiag...... 54 Controlüng Space...... *...... In the LAF hm...... 59 ConsbuctingMeanllig...... 60 A Protective Place ...... M An Isolating and Confinuig Place ...... 61 Escape Interludes ...... Relationships...... 73

Relationship With the Mant = Consuming Closeness...... 73

Relationships With Other Children = Tom Between Places...... 78 Relationships With Partners - So Close and Yet So Far Away ...... 80 Relationships With ûther Parents . A Short Journey in the Same Boat ...... 82 Relationships With Hospital Staff - Insiders or Outsiders...... 84 Mdem...... 84 Outsiders...... - Chapter 6: Enduring Ilifficuit Times...... -92 The ILlness Trajectory...... m....92 Chapter 7: Reentering the World ...... Leaving the LAF Room ...... RetumingHome...... 103 v LmkingBack ...... 106 . . Missmg a Year of Life ...... 106 Putthg Thmgs In Perspective...... 107 Chapter 8: Discussion and Implications...... 114 Paradox of Place and Space...... 114 Maintaining Materd Mvities...... 117 Exprienees ofTime...... 119 Implications for Nursiag Practiœ...... 122 FutureResearch ...... 127 Conclusion...... t...... 130 References...... A31 LIST OF FIGURES Figure 1: LAF mmand ~oiningantemm ...... 3 Figure 2: Tirne as experienced by mothers...... 38 LIST OF APPENDICES Appendices ...... 137 k Letter to the Immunology Coordinator...... 137 B . Explanation of Research By Telephone...... 138 C. Information Form ...... 139 D. Consent Fom...... -141 E . Consent for Audio-taping ...... -142 E Demographic Form ...... 143 G. Sample Questions ...... A44 H.Mothers'Pmfiles...... 146 CWTER 1 Background Severe combined immune deficiency (SCID) is a group of rare genetic diseases, some autosomal recessive and others X-linked recessive. They are characterized by a profound defect of both B-and T-lymphocyte function (Fischer, 1996). Although the tnie incidence of SCID is unknown, the number of infants diagnosed is growing because diagnostic practices have improved and awareness of the disease has increased (Winkelstein, 1992). The estimated frequency of SCID is 1in 50,000 to 75,000 live births (Fischer, 1996)or 30 to 50 infants per year in the United States (Winkelstein, 1992) and 3-5 infants pet- year in Canada. Without treatment SCID is fatal within the first year of life (Fischer, 1996). Infants with SCID appear nomal at birth but because they have grossly inadequate immune systems they are extremely vulnerable to infections. Diagnosis usually occurs at approximately 4 months of age (Fischer, 1996; Laubser, Meydan & Roihan, 1994). Typically, parents seek medical treatment because the infant is not thriving due to recurrent and/or chronic respira-, gastrointestinal and/or skin infections, severe diaper rash, poor weight gain and/or generalized weakness. When materna1 T-ceils have been introduced to the infant through breast mi& infants may exhibit symptoms of gr&-versus-host disease (GVHD) such as skin rashes, diarrhea and hepatitis (Fischer, 1996). Some infants are brought to an emergency department with severe and extensive infections (Fischer, 1996; Fonger, Hart, Kam, Shiflett, 1987;Winkelstein, 1992). At diagnosis these infants are extremely ill and they are admitted immediately to an isolated room in a specialized pediatric hospital. A bone marrow transplant @MT) is the only known cure for SCXD. Ninety per cent of infants who receive a transplant fiom an HLA-identical sibling donor are cured and 50.70% of infants receiving a haploid or nonidentical BMT are cured. As 90% of infants do not have an HLA-identical sibling, most must wait months until a suitable donor is found. If the transplant is successful the new bone marrow wili 1 2 fuaction Mywithin 5 pars. Studies of infants who have received successful HM- identical BMTs from a sibling donor since 1968 have indicated that the immune deficiency does not recur (Fischer, 1996). In order to protect iafants who have SCID as much as possible, they spend their entire hospitalization in a laminar air flow (LAF) mmwith strict protective isolation. fnfmts continue to be very prone to infections until their immune systems are fully fiinctioning aRer a successful bone marrow transplant @MT). In Canada, the average le@ of hospitalization is 10 months with a range of 4 to 23 months (B. Reid, personal communication, November 14, 1996). It is widely agreed that parental presence has positive effects on hospitalized infmts and children (Cleary et al, 1986; Jones, 1994; Sainsbury et al, 1986). Children with a resident mother have been found to sleep less, are more active, spend less time crying and are more cooperative with procedures (Cleary et al, 1986; Jones, 1994; Zetterstrom, 1984). Case studies of infânts with SCID in reverse isolation have concluded that consistent caregiving, preferably by mothers, benefits infants' development and reduces the incidence of feeding probiems (Dalton, 1981; Freedman, Montgomery, Wilson, Bealmear & South, 1976; Kutsanellou-Meyer & Christ, 1978; Simons, &Me, Genscher & Dietrich, 1973; Tamaroff,Yehuda & Straker, 1986). For these reasons, parents are urged to spend as much thne as possible in the hospital with their infants. At the pediatric centre where the present study was conducted, parents, usually the mothers, spend 10 to 18 hours per day in the LAF room for most of the hospitalization (J. Gammon, personal communication, October 8,1996). Eight to ten LAF rooms are located dong two hallways on the heamatologyloncology unit on the top floor of the large pediatric hospital. These rmms are reserved for al1 children receiving bone marrow transplants including those with SCID. To rninimize the risk of contagion, the unit door is kept closed at al1 times. Up to 4 SCID patients occupy the LAF rooms at any time and older oncology patients occupy the remaining LAF rmms including those connected by anterooms. The layout of two LAF rooms is illustrated in Figure 1. They are painted beige, are 3 Myenclosed, brightly lit with fluorescent iighting and about eleven feet square. Clean air is filterd and pushed into the mmscausing a small amount of turbulence, a constant low hum and a alight eooiing effect (Marshall, 1985). Each mmhas a smdwindow through which very busy city streets cmbe seen and an anteroom and hospital corridor are visible through a large sliàing glas8 door. Naaval light may be varied by acÿusting blinds on the window and glass door. Small cartoon figures are painteà on the wails and personal pictures and car& may be postai on a smd bulletin board. The infant's crib must be placed dong the filtering wall. ûther funiiture in the mmincludes a small table, a rocking chair, an upright chair, a waii- mounted television, vide0 cassette recorder (VCR) and television games, a telephone and some baby paraphernalia. The ankroom, into which two LAF rmms enter, contains nursing and medical equipment. The mother may use one cupboard in the antemm to store her infant's toys. -

ROOM LAF ROOM Bulletin Board

Filtering Wall

I

With Window ta Window

Scrub Sink

Figure 1: LAF room and adjoining anterwm. When infants are admitted to the LAF mm, parents receive a manual describing services in the hospital and its surroundings. Multiple pages outline the desof the unit and reverse isolation, several particular to parents of infants with SCID. These are described below. In addition tn hospital staff, only parents may enter the LAF room. If a parent is not able to visit, another adult may be delegated to do so. Visitars, including parents, with any symptoms of illness are not even allowed on the larger BMT unit. A two minute hand and arm scmb is required of anyone entering the LAF room before the first visit of each day adaRer eating or using the bathroom. Public bathrooms are available on the unit outside the LAF room. Sterile latex gloves and a heavy cotton, calf length, long sleeved green gown and a clean mask, hat and boots must be worn in the room at ail times. No skin to skin contact or kissing is allowed with the infant. Ovemight stays in the LAF rmm are not permitted because they increase the risk of contamination. Mothers who cannot go home for reasons of distance rent a mmat a parent residence situated three blocks away from the hospital. Mothers are discouraged from bringing too many items into the LAF room because they interfere with the air flow and collect dust creating a media for bacterial growth. Al1 items must be extremely clean and if the infant will be in contact with them they are wiped with antiseptic. Newspapers cannot be brought into the room, although new books, magazines or knitting may be taken in if they remain in the room. Parents' personal belongings are kept in a small locker in the BMT unit parent lounge. Only food for the infant is aliowed in the room. Mothers have access to a fridge and microwave on the unit or they may eat in a varie@ of facilities in or outside the hospital. Medical and nwsing staff, an occupational therapist, child life specialist, janiturial staff and sometimes a longterm volunteer may enter the LAF room. A core of 3-5 nurses share the care of each infant with one nurse responsible for care through each 12 hour shiR. Treatment for SCID is dramatic and occurs over several phases. During each phase and for the duration of hospitalization there is a high and unpredictable risk 5 that the infant will die. One staff member made the anaiogy that the constant uncertain prognosis was as if the infant was standing with one fmt on land and the other over a clin. The mothers and staff never knew when or if the infiant would tupple over (B. Reid, personal communication, October 1,1998). Initially, treatment involves eRorts to eliminate overwhelmuig infections with protective isolation and antibiotic therapy. Once infections are eradicated some infants appear well whüe others have residual, chronic gastrointestinal symptoms. Attempts to increase the infmt's weight and strength in preparation for a bone marrow transplant are often fnistrateà by chronic vomiting and diarrhea while severe diaper rashes are a primary route for infkxtion. Adequate nutritional intake is crucial and an ongoing concern for staff and mothers. Dietitians review Ilifmts' dieu daily and meet with mothers at least weekly. For some infants total parenteral nutrition is required (B.Reid, personal communication, October 1,1998). During this time siblings and family are tested in an attempt to identify an HLA-identical donor. If this is not found, a 2 to 3 month process of searching for an non-identical donor through the international blmd donor system is initiated. While undergoing a search for a donor, the infant is kept as fkee fkom contagion as possible because even minor infections continue ta be life-threatening. When a donor has been identified, a 1-2 week course of chemotherapy is given in order to destroy al1 immunological cells in the infant's bone marrow and to suppress the immune system prior to BMT. While increasing the rate of successful engraftment to 95% (Fischer, 1996) chemotherapy causes painful and uncornfortable short brm effects such as nausea, vomiting, lethargy, diarrhea, fluid retention and skin and mouth ulcerations, and probable infertiüty and an increased risk of fiiture malignancies. The transplanted mmwis infuseci at the bedside over 1-4 hours during which tirne a burning sensation is felt at the infusion site. ARer the transplant, supportive care is given and the effect of the new bone marrow on the infant's immune system is monitored. During this phase, the risk of infection remains very high and blood transfusions are necessary to maintain levels of red 6 blood cells and platelets (Kronenburger et al, 1998). The infiant is given a preventive andlor therapeutic àrug regimen which usually causes severe side effects including hypertension, and Liver and kidney bxicities. Finaliy, some infants develop GVHD which can be mild or severe and life-threatening. When symptoms last longer that 3 months, GVHD is considered to be chronic (Winkelstein, 1992). The transplanted cells begin to regenerate in the infant's bone marrow within 2-5 weeks, resulting in an increase in blood ceil counts. Full engrahnent of both T- and B-lymphocytes occurs about one year atter transplant (Fischer, 1996). When an adequate level is reached, the infiant is dischargeci fimm the hospital and mo~tored frequently on an outpatient basis. ARer discharge hmhospital, the children are restricted to the home environment for 3 months to reduce exposure to contagion. Gradually, over 3 ta 5 years the infmts are reexposed to the physical and social environments and are considered cured (Kronenberger et ai, 1998;B. Reid, persona1 communication, December 4,1996). The Research Problem When infants are hospitalized with SCID, their mothers typicaüy leave their physical and social environments and relinquish most of their daily activities, routines and responsibilities to accompany their infimts in the LAF room. Mothers' plans are altered or abandoned for the indefinitely long hospitalization during which the infants will die or be cured. Touchmg, caressing and kissing the infant is prohibiteci by the unusual protective clothing and strict isolation des. In addition to this dramatic and extraordinary conte, the phenornenon is unique in that physically healthy adults spend their days in isolation with extremely physiologically vulnerable infants as their only constant companions. This pilot study was conducted to elicit retrospective accounts fiom mothers whose infimts survived SCID aRer prolonged treatment in a LAF room. The ultimate purpose was to devise ways to increase the repertoire of interventions available to make hospitaüzations in the LAF room as positive as possible for these mothers and infants. Review of the Literature Virtually nothing is known about parents' experiences of prolonged hospitaiizations with infmts with SCID in reverse isolation. In one anecdotal report published 20 years ago, Kutsanellou-Meyer and Christ (1978) noted that mothers found the lack of privacy and constrained movement in the LAF room made caring for their infants difficult. A review of studies in relatai research areas generakd a broad picture of what is known about the effects on adults of protective isolation and about mothers of hospitalized children. Isolation Research Adult oncology patients' experiences in reverse isolation have been described in four investigations. The purpose of the first study was to monitor the psychological impact of reverse isolation on 55 oncology patients during a stay of about 30 days in a LA.room (Holland et al, 1977). A bias in the sampling existed because a high proportion of patients (1in 5) refused to receive treatment in the LAF room or were judged by a physician as unable to tolerate isolation. Nurses rated patients' psychological symptoms after each shiR on a questionnaire developed by the researcher. Patients completed a questionnaire, aiso designed by the researcher, twice during the period of isolation. Aithough Wied responses were not reported, findings indicated that the possible benefits of isolation outweighed the negative aspects for these patients. Some experienced loneliness but feared leaving the environment and al missed being touched by others. In a Canadian qualitative study, 6 oncology patients were intetviewed on 4 separate occasions over their 21 to 25 day hospital stays in order to explore their perceptions of reverse isolation (Collins,Upright & Aleksich, 1989). In a semi- structured interview, patients were asked about the impact of reverse isolation, their medical treatment, maintaining contact with the outside world, the passage of time, their personal interactions and their coping methods. A method based on a Parse framework was used to analyze the data for consistently repeated themes. Patients found the items in the rmm more important than the size of the room itself. The 8 televieion, VCR, radio and outside window were considered 'links ta the outside worldw, while the window to the hospital corridor provided connections tn visitors. Structuring the day, being with visitors, sleeping and the effects of medications made time pass more quickly. For 3 participants, hows seemed longer than usual, especiaily when their physical conditions were poor. In contrast, as 2 began to feel weU enough for more activity than the room allowed, time passed frustratingly slowly. More recentiy, Thain and Gibbon (1996) explored how 6 adults described the process of receiving a BMT for a malignancy in a qualitative, exploratory study. Although not stated, it may be assumed that the single unstructured interview took place aRer discharge as the patients were "well and in remission" (p. 528). The patients had stayed in reverse isolation for a mean of 38 days. Five themes emerged through the data analysis process. Patients' thoughts during isolation ofkn focused on their own uncertain fiitureg related to the possibility of death. By comparing their experiences to those of other sicker patients, they were able to view their own circumstances positively. Similar to participants in the study by Holland et al (1977), isolation was perceived as a temporary inconvenience which ultimately led to recovery. Nevertheless, the reverse isolation room was viewed as a 'claustrophobie prisonwand only accepted because of its protective purpose. Supportive relationships with family and nurses were important to the patients. Patients' perspectives of their day-to-day experience in reverse isolation were explored in another recent phenomenological study (Gaskill, Henderson & Fraser, 1997). Seven adult patients were interviewed while in isolation for a BMT 2 to 3 weeks after it was initiated. Analysis of abbreviated transcripts, field notes and patient observations revealed several themes. Initially, when the patients had been very ill, the impact of diagnosis and the physical side effects of aggressive, chemotherapeutic treatment were more significant to the patients than reverse isolation. However, as theîr recovery progressed, the patients found isolation to be more confining. The patients used the external window and a picture of a scene in their room to escape the isolation and boredom in the room. Al1 were angered by 9 stans' consistent lack of respect for requests for privacy. Routine was described by one patient as boring while another found that routine helped pass time and get through the day. Relationships with family, fiends and nurses were supportive and helped the patients remain in contact with the world outside the isolation room. Mothers of Hos~itaiizedChildren Only two studies were found which related to mothers' experiences while a child was in protective isolation. In one study, the levels of detyand depression in mothers of children with cancer (n=57)in a standard reverse isolation room with access to the room for 9 hours per day were compared to mothers who could only view their children through a window and communicate by intercom (n=66)(Powazek, Goff, Schyving & Paulson, 1978). The average duration of stay was 7 days and the children were 3 to 16 years old. The results, as measured by the State-Trait Anxiety Inventory and the Zung Self-Rating Depression scale, indicated that mothers of children in the more restrictive environment, whose children were under 7-years-old andlor whose chüdren's conditions were perceived as severe exhibited more dous and depressive behaviours. Another study by Kronenberger et al (1998) measured maternal stress of 24 mothers whose children, aged 3 to 20 pars old, were preparing to undergo BMT within 1week to 4 months. All the children had an oncological diagnosis and were hospitalized at the time of the study. However, they were not isolated on the BMT unit. Six dflerent scales with good psychometric properties (Hassles Scale, Life Experiences Scale, Chronic Illness Parental Stress questionnaire, Coping Strategies Inventory, Family Environmental Scale and Symptom Checklist-90-R) were used to measure the effects of the mothers' appraisal of stress, coping resources and coping methods on their psychological adjustment. Multiple statistical analyses were used in an attempt to counterbalance the problems of small sample. The results indicated that, in addition to their children's illness, maor life stresses and social stresses were strongly associated with maternal depression and niminative worry measured on separate scales. The score on the SCIrSO-R indicated that one quarter of the mothers were clinically depressed. It was concluded that identification of and intervention with mothers at risk for poor adjustment may prevent psychological problems. Many researchers have described high levels of anxiety, uncertainty and stress in mothers in a variety of hospital contexts (Cofnnan, Levitt & Guacci-Franco, 1993; Karschbaum, 1990; Miles & Carter, 1985; Miles, Carter, Riddle, Hennessey & Eberley, 1989; Proctor, 1987; Schepp, 1992; Turner, Tomlinson & Harbaugh, 1990). In a qualitative study entitled The Captive Mother", the experiences of 130 mothers living 23 hourslday with hospitalized children were described by Meadow (1969). Their children were surgical, medical and emergency patients The duration of hospitalization was not stated. Data from informai interviews with the mothers during the children's hospitalization were recorded as field notes. The method of data analysis was not reported. Mothers stated that they were bored because the il1 children were their sole source of company. They felt out of place within the hospital environment and judged by the staff. La second inte~ewsafter their children's discharge, 60 mothers îrom the original sample described feeling proud because they had tolerated something unpleasant for the sake of their children. In another more recent study, informal interviews of 29 resident mothers were conducted to investigate their reactions to participating in their preschoolers' supportive care during 2-7 day hospitalizations for simple medical or surgical procedures. Mothers reported a reluctance to leave the children's bedsides, even for nourishment. Two mothers found the added responsibility of care womisome and 2 reported that king %ed to the ward" was irksome. However, all mothers expressed feeling gratitude for being given the opportunity to care for their children and more confident about caring for them during future illnesses (Cleary et al, 1986). In a Canadian qualitative study, 33 mothers' and 6 fathers' in-hospital descriptions of stress reactions were elicited when their children with long-term disabilities @=Il) or cancer (n=24)were hospitalized (Hayes & Knox, 1984). The ages of the children and duration of hospitalizations were not reported. Although 11 specific examples were not recorded, parents stated that the experience of parenting a hospitalized child had changed their lives. Mothers spoke of a special understanding and a strong bond they had developed with their hospitaiized children and said the children had become the primary focus of their lives. Parents of chüdren who had longer hospital stays became more cornfortable with their roles. However, because the process of adaptation to hospitalization was iduenced by the dynamic nature of the illness, hospital environment and different health care professionals, the needs identified by parents were also in flux. Parents desired continuous upùatjng of information related to their children, wanted to be appreciated as an important part of the health care team, needed to believe in the cornpetence of the health care providers and wanted indications that staffcared about their children and families. Parents described their roles as nurhirers, cornforters and pmtectors of their children. Because of the large number of staff involved with the children, parents okn felt that they must cooràinate the care, making sure information reached relevant provîders. The parents perceived themselves to be the expert interpreters of their children's behaviours and responses (Hayes & Knox, 1984). In another qualitative study, the experiences of 30 parents (26 mothers and 4 fathers) who spent most of their days with their chiidren over 1 to 2 week and 2 to 3 month hospitalizations for a variety of mild to severe medical and surgical problems were studied (Darbyshire, 1994). Informa1 discussion, focus groups and semi- stmctured interviews with phenomenological analysis of the data revealed that nurses' expectations that parents would actively participate in the children's care caused tension. Parents were uncertain about what they could or could not do and were fearful of interferhg with nursing or medical activities. Parents participated less as the severity of their children's condition heightened and appreciated king able to decide their own level of participation. Active participation included using play as a diversionary tactic for the children. However, because of their illnesses and limited mobility, playing with the children all day was onerous for most of the parents. Darbyshire also described parents' hyperattentiveness and hyperreceptivity to the 12 chüdren's ne& which was so intense that parents felt unable to relax or take a break hmcaregiving. Parents reported that the public nature of the hospital environment made them feel self-conscious about the adequacy of their parenting. Stressors and coping strategies reported by 13 mothers and 5 fathers related to prolongeci (1 to 7 month duration) hospitalizations of 1to Il-par-old chronicaily ill children were explored (Horn, Feldman & Ploof, 1995). Although not stated, it appears that this qualitative study was retrospective with the children at home at the time of the interview. Information regarding the length of time each parent stayed at the hoapital each day was not reported although it is impiied that at least some 4ivedmat the hospital. Al1 parents describeci their own negative emotional reactions to their chüdren's hospitalizations as their primary stressor followed by communication problems with health professionals. The need to alter their personal routines and roles to accommodate the hospital was the third most stressful category identified. Coping strategies to deal with these stressors included reprioritizing their persona1 responsibilities to meet the demands of their il1 children and changing their concept of time. In a quantitative study measuring the degree of control384 mothers preferred to have over the care of hospitalized children aged 1month to 18 years, mothers of younger children preferred more control. Mothers who spent the most time visiting (17 to 18 hourdday) also preferred to have more control over the care of the children (Schepp, 1992). In a similar quantitative study, Schepp (1991)designed an instrument to examine the relationship between predictability of events, maternal control of the situation and maternal anxiety with the mothers' reported effort to cope. The 16 item questionnaire was administered with an interview to 45 mothers of acutely il1 children one month to 24 months of age. The results indicated that mothers who knew what to expect during their chiidren's hospitalizations were less Mousand expendeci less effort coping. However, having control over the course of hospitalization was not explained as a factor related to the effort required to cope. A semi-structured interview within 2-4 days of children's admission to a 13 pediatric intensive care unit (PICU)was used to examine the nature of unceitainty for 13 parents of 8 children aged 3 months to 16 years old (Turner,Tomlinson & Harbough, 1990). Four realms of uncertainty were identified including uncertalnty about the environment, the characteristics of the child's illness, the quality of care, and the family system. Environmental uncertainty related ta the physical layout of the hospitai and unit and its rules, routines and staffing hierarchy. Parents reported that they needed information about the children's iliness, treatment and prognosis. Similar to the findings of three studies previously reviewed (Darbyshire, 1994; Hayes & Knox, 1984; Horn, Feldman & Ploof, 1995), parents felt ambiguity about their parental roles and how well they were performing within them. They also described feelings of contlict between their role as parent to the critically ili children and their other life roles and needs for personal sustenance. Two quantitative studies (Kirschbaum, 1990; Teny, 1987) and one other qualitative study (Kasper & Nyarnathi, 1988) corroborate the finding that parents need information regarding their children's condition and assurance that they are receiving the best possible care. However, in these studies parents rated their own personal needs as unimportant, wanting the focus of concern to be on the needs of their children. Kasper and Nyamathi (1988) did find that 7 of 15 parents identified the need to be away from their il1 children some of the time. To determine what aspects of a PICU environment were perceived by parents as sources of stress, a scale (PSS1:PICU) of possible environmental stress sources was developed ahr;observing parents with their children, intewiewing parents whose children had recently been discharged, and interviewing PICU nurse experts (Miles & Carter; 1982). The environment was defined as the physical and psychosocial surroundings of parents in the PICU. Seventy-nine possible environmental stress sources were identified and categorized into eight dimensions. These included: unusuai sights and sounds; child's appearance; child's behaviour; child's emotions; stafYcommunîcation; staffbehaviour; and parentai role deprivation. Situational and personal stressors were included in the conceptual fkamework but excludeci nom the investigation. Therefore, other than the sights and sounds of the PEU, the stressors did not include any other physical environmental factors or faetors related to a parent's personal status. ln two studies using the PSSkPICU, (Miles & Carter, 1985; Miles, Carter, Ridde, Hennessey, Eberly 1989), one of which sampled 510 parents of 350 children, parent role alteration was considered to be the most stressful dimension. It included such aspects of the parent role as separation fkom the child for long periods, not being able to care for the child, not being able to hold the child and not being able to protect the chiid. Children's behaviour, emotions aad appearance were also sources of parental stress. Proctor's (1987)study of visitation policies of 2- to 17-year-old children in a PICU over a 24 to 72 hour period supported these sources of stress as important in that 20 mothers who were allowed to Msit their children according to their own and their children's needs were less anxious and more likely to perceive their children's condition as less severe than 20 mothers whose visits were limited and stmctured. Additional variables were examined in these studies. Parenta experienced a greater level of anxiety, as measured by the State-Trait Anxiety Scale, if admissions of their children were unplanned and/or if the children's condition was perceived as more serious (Carter, Miles, Buford & Hassanein, 1985). Further, mothers of Wmts experienced higher levels of anxiety than mothers of older children (Miles, Carter, Hennessey, Eberley & Riddle, 1989). Miles, Funk & Carlson (1993) adjusted the PSSkPICU scale to develop an instrument to measure parental perception of stressors in the neonatal intensive care unit (NICU). As in the PICU studies, the concern of the researchers was the immediate intensive care environment. Three dimensions of sources of stress were identified including, alterations in parental role, sighta and sounds, and infant behaviour and appearance. The same parental role alterations as in the PICU studies created the greatest stress for parents (Miles, Funk & Kasper, 1992). The study also examined the level of uncertainty experienced by parents, finding that unpredictability of the infant's illness course caused the greatest amount of 15 uncertainty. Stress responses (measured as level of anxiety) decreased over 1week between the 1st and 2nd interviews within 2 weeks of admission. Similar dimensions of stress but of different relative intensities were identified in a qualitative study of 32 mothers and 25 fathers of premature infmts in an NICU (Hughes, McCollum, SheRel & Sanchez, 1993). The parents described the infants' appearance and course of hospitaîization as their primary stressor followed by 'hot feeling like a parentwand lack of control over the situation. Thirty-one per cent of the mothers identified focusing their attention and care on the infant as one of their coping strategies. Other identified strategies included social support, avoidancdescape, crying and trying to see the situation in a positive wny. The exploration of maternai health changes in response to stress experienced during chiidren's life-threatening hospitalizations, was the purpose of a recent longitudinal study of 20 mothers of chüdren 2 to 17years old by Tomlinson, Harbaugh, Kotchevar & Swanson (1995). The Medical Outcornes Study Short-Form General Health Survey and self-reports of newly identified hedth problems and family health patterns were used to measure the mothers' health perceptions, pain, physical functioning, social and role fiinctioning and mental health at admission and at 9 weeks post admission whether or not the child was still hospitalized. Maternal mental health showed a significant decrease from adequate at the admission measure to borderline at 9 weeks post admission as indicated by the instrument. This was particularly true if the child was still hospitdized at the nine week measure. The other health parameters did not change significantly, although nonsignificant changes in nutrition and sleep patterns were noted. In a recent effort to assist mothers to cope with the hospitalization of preschool children in a PICU, Melnyk, Alpert-Gillis, Hensel, Cable-Beiling, and Rubenstien (1997) developed and tested a theoretically-driven intervention program called Creating Opportunities for Parent Empowerment (COPE).COPE was designed to strengthen mothers' understandhg of the eEects of hospitalization on children's behaviour and increase their confîdence in their mothering role. Hence, 16 they hypothesized that by participaüng in their children's care, the experience of negative mood States, anxiety and post traumatic stress symptoms after discharge would be limited. Thllty mothers were randomly assigned to an experimental or control goup. Findings supported the hypotheses. Mothers who had received the COPE intervention experienced fewer matemal role changes, gave their children more physical and emotionai support in the PICU and experienced fewer post traumatic stress symptoms ahrdischarge. Summar~ Taken together, the findings of qualitative shidies exploring adult patients' perceptions of protective isolation indicate that initially patients were often more concerneci with the medical side effects of treatment and their catastrophic diagnoses than with the experience of isolation. Isolation was accepted as a necessary part of treatment. However, as patients recovered, confinement in the room became more problematic. Various psychological strategies were used to escape the limitations of the room and to maintain control over restrictions. Relationships with family, friends and nurses were considered supportive and represented connections to the world outside the isolation room. Routines were used as a method to allow time to pass more quickiy. Otherwise, the experience of the passage of time varied according to the patient's condition. Qualitative and quantitative studies have focused on the assumption that the hospitalization of children is stressfial for attending parents, the mejority of whom are mothers. The review of the litmature indicates that most mothers report needing or wanting to be with their hospitalized children and appreciating the opportunity to actively participate in their care. However, the added responsibility of nursing care was stressful and sometimes considered onerous. In several studies parents also reported a reluctance to leave children's bedsides. They also felt self-conscious about their parenting and judged by SMin the public hospital environment. Parental role changes and deprivation were identified as causing significant stress to parents of children in the PICU/NICU. Hospitalizations seem to be highly stressful when 17 children are very youag, have serious or unpredictable conàitions, and when hospital admissions are unplanned. Parents repeatedly have reported the need for information about their children's conditions, clarity about their own roles and reassurance that their children are receiving adequate care. When hospitalizations are prolongeci, mothers become more cornfortable but continue to identify needs related to their children's care. The hdings are conflicting with respect to how important parents perceive their own needs. However, in two qualitative studies parents identified a need to alter their personal routines and roles to accommodate the demands of the hospitai as important. Materna1 mental health was found to be negatively affected especially if prolongecl hospitalization was required. Restrictive isolation such that the mother was not ailowed direct access to her child also negatively aected materna1 mental health. Scales measuring parental stress in the PICU and NICU environment list potential stressors. Hence, parents have not identified or defined aspects of their experiences they perceive as stressful. The literature focuses on negative stressors of the environment as experienced by parents. Furthemore, although the PICU and MCU environments are analyzed in the iiterature, the definition of environment is limited. It does not refer to broader social aspects, to the experience of theor to the meanings of the physicaYsocia1 environment to parents. The PICU and NICU literature is relevant to the parents of SCID with respect to the acute and severe nature of the illness and the vulnerability of the infants/children. However, the average duration of stay in the PICU is very short in cornparison to the ten months average stay of the infant with SCID. The age range of the children in the PICU is usudy infmcy to adolescence instead of infmcy as in SCID. ORen scheduled surgery means that admission to the PICU is planned. With SCID, young infants are admitted ahptlyupon diagnosis. Also, the NICU and PICU are highly stimulating technological environments, compared to the LAF room which could be perceived to be lacking in sensory stimulation. The NICU literature 18 deals with prematuie infants or with infants born with severe illness, requlling admission at birth. In contrast, the mother of the infant with SCID gives birth to a seemingly healthy newborn with whom she develops a relationship for approximately 4 months. The review of relatai Literature describes many aspecta of mothers' experiences of children hospitalized with a variety of conditions and in variety of hospital settings. Because the hospital environment, age of the child, duration of hospitalization, and prognosis and treatment described in the literature differs hm those of SCXD patients, it may not be possible to generalize these results to the mothers of inf'ts with SCID. The literature clearly indicates that hospitalization of chüdren is stressful to the mother. Therefore, it may be assumed that mothers of infmts with SCID also experience stress. With respect to ail other aspects of a mother's experience king with her infant with SClD in reverse isolation, no adequate research literature exista. Knowledge about a mother's experience of dislocation from her familiar daily activities, roles and social relationships and relocation to a confined, unknown and isolated space with a catastrophically il1 infant for a prolonged period is missing. Concephid Orientation Usudy when infants are diagnosed with SCID, their mothers leave their homes, families and friends, employment and domestic activities to spend several months in the LA.room in protective isolation. Their previously private maternai activities suddenly and dramatically becomes visible to professionals and visitors to the unit. Paradoxically, this visibility occurs in the isolated, restricted, impersonal and barren LAF room space which is disconnected hmthe unit and larger hospital by virtue of its enclosed boundaries. When I visualized the LAF room and realized the mothers' circumstances, 1 was struck by the atypical characteristics of the room and 1wondered how mothers endured being enclosed within it over such a prolonged time. 1 postulated that the characteristics of the LAI' room would affect mothers experiences of staying with their Mmts during hospitalization in important ways. It 19 was my contention that a comprehension of how mothers experience the LAF room itself would enable nurses to provide comprehensive, empathic and high quaiity fdy-centered care. The conceptual orientation used for this study was based on human geography. Human geographers argue that space, place and time fundamentaily and powerfully influence how people ascribe meaning ta their experiences. This orientation brings together aspects of traditional geography which focuses on the nature of places and links them with sociology which focuses on human social behaviour and activities Wear & Wolch, 1989). The objective of human geography is to understand how people experience life in everyday places and spaces at multiple levels of geographical dimensions and time (Seamon, 1980). in this study mothers' experiences of space, place and time were explored at the micro level of the LAF room. 1was interested specifically in what it was like to spend a year of one's life in the LAF' room with an infant being treated for SCID. Spaçe Human geographers' understanding of space is not merely as a fixed physical container. Instead, space is viewed as a locale or setting which affects social interaction and people's sense of themselves. The experiences of everyday life are said to be shaped by the constraints and resources that the attributes of the space offer. In order to understand people's daily lives, one needs to explore the associations between and among activities, routines and relationships which consume time and energy and the attributes of the social and physical space they occupy (MOSS,1997). Hence, to a large extent, the physical and social attributes of the LAF room space and the limitations imposed by reverse isolation are said to determine and guide the activities and routines the mothers are able to pursue. As well, routine daily social interactions reflect how they renegotiate their ongoing relationships and experience new relationships within the space constraints. 1 hypothesized that mothers' relationships with family and friends, parents of other ill children and hospital staff 20 would be experienced in a unique way because of their prolonged location in the LAF room. However, 1also hypothesized that just as the charach of the LA.room would affect and direct the mothers relationships and activities, the LAF mmwould be affecteci by the mothers. Mothers were conceptualized as active agents, capable of influencing the space around them and reinforcing their deswithin the constraints imposed by the space and by the circumstances related to their infmts' severe illness. Exploring everyday activities within the LAF room would reveal their needs as they reshaped and reordered theù lives. Finally, the significance of the LAF room to mothers' experiences was assumed to extend to other related spaces including their homes, nightly place of rest, the hospitaI building and unit on which the LAF room was situated. The experience of the mothers in these other locales would be intluenced by and, therefore, constitutive of their perceptions of the LAF mmspace. The incorporation of activities and social interactions within related and contiguous spaces extends a comprehension of mothers' experiences as influenced by the constraints and resources of the LAF room. Place Place is the second geographical concept that was important for this study. Individuais construct a 'sense of place" hmthe activities and relationships that a space contains. A sense of place is the meaning attributed to a particular physical locale with its own distinct combination of social characteristics derived through unique relational links to other spaces (Women and Geography Study Group, 1997). It reflects the experience of living in a space and is the product of human values, emotions, mernories and habits. Sense of place is taken-for-granted by individuals as part of their everyday Me. However, because personal identity is bond to one's sense of place, being dislocated and feeling out of place may trigger distress or even an identity crisis (Buttimer, 1980) Emotional and social meanings are given to and arise fkom the places people inhabit. For example, 'home'has multiple social meanings in almost al1 cultures. It is conceptuaiized ideally as a private, secure and comforting haven or shelter and it is also commoniy viewed as the workplace where mothering ~xurs.The symbolic and social meanings given to patients' rooms in a hospital are generaily of impersonal treatment and relative lack of privacy. An outsider's view of a space may substantidy differ hmthe insider's way of experiencing a place by virtue of Yiving" in it. Thus, mothers who spend pmionged periods in the LAF mmwith their il1 inf'ts may attribute different meanings to the mmthan would an outsider or an observer. Time Neither space nor place are conceptualized as static. Instead, they are seen as dynamic, changing with events and social interactions and, thus, inextricably bound to time. Setting a routine is an example of the simultaneous interaction of time and space. Routines are activities or behaviours which extend over time and are ohnparticular to place. People become accustomed to the regularity, continuity and familiarity of routines. Interference with the control of time and space that routine allows can generate stress because life becomes less predictable (Seamon, 1980). A second example of the dynamic nature of place is referred to by Morgan (1996)as social turning points. These points occur over the life course when the character and meaning of a place changes in a symbolic way. For example, the meaning of 'home' may change for a mother when a young adult leaves. Time is also a significant dimension of the particular way place is experienced. Individuals experience time uniquely, dependent on their history, on activities and relationships directed by spacial resources and constraints, on physical characteristics and aspects of the locale, and on the influences of the larger social structure (Glucksman, 1998; Morgan, 1996). Time is complex with multiple forms and levels of expression experienced simultaneously. For example, within a specific context, time may be experienced as a measure, a sense, a boundary, a resource and/or a commodity (Adam, 1990). People measure hear time as defined by the clock and calendar and 22 experienced as past, present and fiiture. In addition cyclical time, for example, day and night, passing seasons and the body's biological rhythms al1 mark time's progression. The extent to which these dimensions are experienced is particular to and influenced by the character of place and space. Spaces become relative frames of reference to measwe rates of change as compared to past experiences of sense of time passing in other spaces. For instance, time perceiveci as dragging or endless passes slowly compared to how it was experienced in the past. Time itself may offer individuals a basic frame of reference to mark events and changes. For instance, a personal event may punctuate a series of events occurring over time. As well, the offers a fkamework in which daiiy activities and social interactions are planned and regulated (Adam, 1990). Time may be managed and negotiated as a commodity (Adam, 1990). It may be a scarce resource, valued differently by individuals and hence leading to conflict over how it is controlled and used. People may difier in their ability to control how time is spent so that some people's time may be exploited by those in a position to determine what is done with it (Glucksman, 1998). For instance, physicians' time is generally seen as more valuable than that of patients'. Mothers experiences of space, place and time in the LAF mmwere explored in this study. Through this shidy, insight is gained as to how they responded to dramatic changes in space, place and the. Human or lived spaces are characterized by regularity and variety, and by order and change. They are dynamic and in constant evolution. Mothers' experiences in hospitd with infants with SCID is an excellent example of evolving yet steady space. Over the prolonged hospitalization, inf'ts and mothers remain in one LAF rmm with the same rules and regdations regarding reverse isolation. However, because of the phases of treatment, the unpredictability of the infmts conditions and responses to treatment, the infants growth and development and the changes in staffing, many aspects of mothers' lives are in flux. The experiences of the mothers are, therefore, complex and representative of a process which was heretofore undescribed. 23 Research Questions The purpose of this study was to describe dimensions of mothers' experiences of suddenly leaving theu everyday lives to spend a prolonged period in reverse isolation with extremely iU infmts. The following research questions were posed:

1)How do mothers describe the experience of being displaced hmtheir routine activities and social worlds while in the LA.room? How do mothers maintain connections and relationships with the outside world? 2) How do mothers describe the routines and adivities of a typical day in the LAF room? How do the attributes of the LAF rom affect these everyday experiences? 3) How do mothers describe their experience of time during the inf'ts' hospitalizations in the LAF room? 4) How do mothers describe their relationships with their infants, other children, partners and hospitai staff while in the LAF room? 5) How do mothers describe the experience of leaving the LA.room and returning to their homes at discharge? CHAPTER 2 Design and Method A qualitative research method was considered most appropriate for this study because it dowed a depth of description which best adhssed mothers' accounts of their experiences in the LA.room. Buttimer (1980) argues that ta understand an individual's sense of space at a deep level one must be inforneci by the individual's subjectivity. As an outsider to mothering a child with SCID in the LAF room, 1could only describe the physical setup of the room and my observations of the social interactions that take place. However, mothers described their experiences of entering the mm,dweiling in it for a prolonged time and leaving it when their infhnts were discharged. Through an interpretatim of their accounts, the meanings expresseci openly and implicitiy were derived (Rose, 1980). The mothers' verbal accounts of their everyday activities and feelings in their social and physical spaces yielded an understanding of their experience. The design of the study was retrospective. This decision was taken for ethical reasons because mothers whose infants were hospitalized at the tirne of data collection were coping with the unpredictable proposes of their children and the duration of hospitalization. Simiiarly, mothers whose infmts had died during hospitalization for SClD were excluded because an interview about this very sensitive topic may have been very painful for mothers.

After obtaining approval fkom the Nursing Review Cornmittee and Research Ethics Board at the study hospital, the Immunology Coordinator identified potential participants using the following inclusion criteria: 1) The biological, foster or adoptive mother was fluent in the English language. 2) The child had undergone successfbl treatment for SCID. 3) The child had been discharged fkom hospital within the preceding 4 years. 24 4) The mother estimated that she had spent an average of at least 8 hourslday with her Ilifant in the LAF room. 5) The mother could be interviewed withùi a 200 kilometre radius of the study hospi tal. Due to the fact that mothers whose infants were hospitalized at the time of data collection and that those mothers whose infants died were excluded and because the disease is rare, the total number of mothers available was small (N=5). ARer identifjhg potential participants, the Immunology Coordinator briefly explaineci the study to the appropriate mothers usùig an outline (see Appendix A). She obtained mothers' permission to release their names and telephone numbers to me. I then contacted the potential participants by telephone, informed them more fidly of the study (see Appendix B) and obtained verbal consent or refusa1 to meet. I arranged to meet the mothers at a location of their choice at a mutually convenient the. Because the children's immumlogical systems were not fully developed, 1went to the meeting only if I had no signs of infection. The mother's home was the preferred interview site both for the mother's convenience and because of the possibility that memorabilia from the hospitalization (photographs, diary excerpts, cards etc) would provide a richer, and more complete and vivid description of the mother's experience. I provided verbal and written explmations of the study to the mothers (see Appendix C). The mothers received two consent foms related to the study and to the taping of the interview (see Appendices D & E). Once consent was obtained the interview began. Data Collection Two audio-taped interviews with each mother were used as the data collection strategy. The goal of the interviews was to achieve a description of the mothers' experiences from their point of view and in their own terrns (Eyles & Smith, 1988; Kvale, 1996). Open-ended focused interviews were used because they allowed me to elicit the mothers' perceptions and interpretations of their own experiences and yet remain focused on the conceptual concerns of the study. Kvde (1996) and Eyles and 26 Smith (1988) argue that the interview can remain open and flexible yet focused on themes or topics. Questions were related to or focused on the theoretical concepts of the study but were not strictly structurecl, sequenced or worded. Instead they were asked at suitable points in each mother's story, to fill in gaps, clarify points or to foilow-up on descriptions. This strategy was meant to indicate to the mother that 1 was actively listening and interested in the unique story she told. The interviews took place 5 days to 3 weeks apart at the mother's convenience. The purpose of the second interview was to clampoints, build on first interview responses and fiil in gaps identifieci hmpreliminary analysis of the fist interview. Themes and patterns identified hmthe transcripts of the first interview were checked by sharing them with the mother, encouraging comrnents and staternents about verification or rejection of my interpretations of the meaning she had intended to give or facts she had reported. This decreased the likelihood of researcher bias. The second interview also provided the mother with an opportunity to describe aspects of the inte~ewshe had reflected on over the intenrening period. The first inte~ewbegan with the completion of a demographic form (see Appendix F)which included information important to the study. Before beginning the inte~ewprocess, 1reiterated the intent of the interview. An open, general question was then asked which allowed the mother to respond in her own terms (see Appendix G). ARer the mother had completed her story without interruption, 1 directed the interview by asking questions in areas which she had not yet addressed, which needed clarification or further description (see Appendix G). These questions were based on the concepts of space, place and time. Prior to the interviews mothers were encouraged to share any photographs or other memorabilia with me if they felt they would help describe their experiences. ARer each interview, I made notes about memorabilia, recording the content, the mother's emotional reaction and my own emotional response, insights and interpretations. Field notes also included my reflection on the setking, the bodily and facial expressions of the mother and any others who were present, the interpersonal 27 interaction during the intmview, my immediate impressions of what was lemed and any doubts about data quality. Data Analvsis Data analysis began immediately aRer the first interview with the first participant. The data were analyzed for codes and themes while transcription and subsequent interviews took place. Therefore, as is often the case in qualitative studies (Berner 1994), data collection, inquiry and analysis were not discrete processes. Initially, each interview transcript was read and reread to understand the overall meaning, tone and use of language. Throughout the analysis process transcripts and segments of text were compared and contrasted. Each transcript was coded by hand using coloured markers so that individual mothers rernained identifiable. Sections of quotations were then cut, coded and pasted into categories organized to answer the research questions. Data within each code were rearranged further according to thematic content, moving from the general to the more specific as far as the data would allow. If more than one theme could be identifieci within a segment or text, multiple copies were made and each was categorized separately. Alternatively, a colour code identified more than one code in each cut section. Early in the analysis, code names remained close to the original text of the transcripts. As analysis continued, codes were based on concepts that I generateci. The process was recorded systematically on flow charts or diagrams. As codes were reconsidered and changed, abandoned or renarned at various times in the data analysis process, the flowcharts were revised or discarded. New insights and anaîytical hunches emerged and were recorded on new charts or diagrams following procedures outiined by Eyles & Smith. (1988). An initial report was written including dldata . My advisor (McKeever) agreed with the basic themes 1had identifieci and further thematic analysis was discussed. During the process and while writing the succeeding dr&s of the report, codes and data were continuaüy interpreted to identify themes, patterns, regdarities, contrasts and metaphors by counting within and across cases. 28 Data analysis did not end until the final report was completed. According to Kasper (1994), perspectives and understanding of experiences are revealed in the meanings of the words chosen as well as the content of the stories told. Therefore, the structure of the transcripts were also analyzed. Language and rhetorical devices used by the mothers were important additions to thematic and metaphor analysis. Descriptive words and phrases used by the mnthers which connoted particular rneaning were copied onto categorized cards. The cards were used separately in the anaiysis and b check the transcript codes. Methodoloizical Rigour This study was based on the assumption that the stories told were specific to the interactions with me and the context in which the interview took place. Hence, the context and dynamics of the interviews were recorded. The site, the participants, the experience of coilecting the data and my own reflections were summarized in field notes afbr each interview. Important aspects are included in this report. As a community health nurse, 1 have done a significant amount of work with mothers in the community as a counselor and group facilitator. In addition, 1 am a mother of two young children. For these reasons, 1believe 1was a skilled and ernpathic interviewer. My experience as a mother or working with mothers does not involve chüdren's hospitalization so 1was relatively naive about the focus of the study and had no vested interest in partrcular outcomes. 1tried to be aware of my own biases, values and beliefs about mothers and motherhood. Any influence that these biases had on the interview or on my reactions to the interview were recorded as field notes. Following Berner's (1994)recommendations, 1tried to remain open so that my own views and preconceptions could be challenged and tumed around. For example, 1had assumed that the mothers would resent having to give up many of their roles prior to hospitalization to spend time in a space that offered them very little. Through the mothers' stories, this preconception proved false. Even though each mother's story was influenced by the context in which it was given and was only one description at a given moment, comprehensive data enhanced 29 the credibility of each account. Enmuraging the mother ta tell her own story, in her own terms and at her own Pace ensured that she was not lead by rny preconceptions of what was important. The nature of the interview design, the limited use of memorabilia and comprehensive field notes ensured the collection of rich data. Auditability of the study ras achieved by mcording a decision trail. Al1 decisions and steps of the research process were noted, including false starts, changes in categories, and consideration of rival descriptions and negative evidence particular to the data analysis (Burns,1988; Sandelowski, 1986). Keeping track of movement in understanding allowed the data anaiysis to be criticized and it's relevame, coherence, consistency and persuasiveness evaluated (Benner, 1994). Review of the emerging data analysis by my thesis advisor contributed to my reflection on various alternative views. By spending prolonged pends with the data during the collection and analyzing processes, 1explored ideas and themes thoroughly. The analysis was, therefore, comprehensive, enhancing the validity of the finâings. By linking the data analysis, and the research and interview questions to the theoretical conceptualization of the study, the interna1 consistency of the research was increased. In the presentation of the findings, excerpts of the text used for analysis are quoted verbatim to allow readers an appreciation of the world of the participants and to assess the adequacy with which the analysis represents the data (Mishler, 1990). Care was taken to keep the excerpts within the context and perspective in which they were tdd (Sandelowski, 1986). To add to the integriw of the report, the number of participants whose stories supporteci each theme were reported wherever possible (Burns & Grove, 1993). Outliers, extreme cases and contrasts across cases were identified and used to question and test the generality of the findings. In addition, as data analysis evolved with data collection, 1was able to cl- and challenge my own interpretations by checking with the participants (Kvale, 1996). 1believe each of these techniques serve to enhance the vaiidity of the analysis. Ethical Considerations Numerous ethical issues including consent, risk of harm to the participants, privacy, coddentiality and anonymity as identifid by Miles and Huberman (1994) were anticipated and plmed for in the design of this project. During the sampling process, the potential participants were approached by the coordinator who was otherwise uninvolved in the project to protect the anonymity of potential participants. Verbal and written explanations of the study with opportunities to ask questions were given prior to obtaining verbal and written consent. Consent was obtained voluntarily and without coercion. Mothers were assured that participating in the study wouid not compromise their infants' ongoing care at the participating hospital in any way. Confldentiality was ensured throughout the research process. Tape recorded interviews were heard only by me. ALI transcripts, tapes, data files on disks, summaries, and field notes were stored in a locked cupboard to be accessible only to myself. The written data will be destroyed 6 years aRer completion of the study. Mothers, fathers and children were given pseudonyms in the transcripts. Although they were informed that they may be able to identify their own words in the research report, it is unlikely that others could. Meridentifjhg information has ben modified or left out of the report. There was no indication of child abuse by any person at any tirne in the interviews. It was therefore unnecessary to break confidentiality. While telling stories about sensitive personal issues, 3 of the mothers wept. 1 was sensitive to these emotiond reactions in aU instances offering support and questioning the mothers' desire to continue with the interview. Each mother recovered quickly and, although given the opportunity, none wanted to terminate the interview. 1did not feel that continuation would cause the mother undue distress. If necessary, with the mother's permission, I would have informed the Immunology Coordinator, with whom each of the mothers was well acquainted, if any mother was in need of further resources. This proved unnecessary. At the outset of the interview 31 it was clearly stated that the mother could terminate the interview at any time, for any reason. Limitations The main limitation of the study was the small samplc size of 5 mothers. However, the mothers represented a variety of demographic characteristics and infants were typical of chüdren diagnoseci with SCID. SCID is a rare disease and only 50-70% of infants survive. The study was, therefore, only feasible with a small sample given the time aliotted for data collection. The study was designed in such a way that comprehensive accounts were elicited. The rarity of the disease does not in any way imply that this project was not worthwhile. The experience of mothers whose infmts died during hospitalization may be significantly different. They may have attributed different meanings to the LAF room space. Another limitation of the study was the retrospective design. The participants had been away from the context of reverse isolation for up to 4 years. Berner (1994) argues that when an interview does not take place within the sights, sounds and smells of the context of study the data is not as rich or comprehensive. The use of multiple sets of data (memorabilia, field notes and interview tapes and transcripts) reduced the limits of the retrospective design to some extent. It is probable that because the subject of the interviews represents a critical event for the mothers taking place over a prolonged period, centrai aspects wiIl be clearly recalled. Kasper (1994) argued that what each participant chooses to remember has deep personal meaning and importance to her and, hence, ta her experience. My impression of the mothers' accounts during the interviews was that the experiences were vividly remembered and Oninute details were clearly recded. CHAPTER 3 Findings The Characteristics of the Mothers and Infants 1telephoned the five mothers whose names had been given to me by the Immunology Coordinator. Each mother agreed to an initial meeting and seemed agreeable to take part in the study. However, one mother expressed concern as to who would have access to the data. She agreed to participate aRer she was told that only mysdf and my committee members would have access ta the intewiew transcripts and that her name and other identifying information would be changed in ail reports of the study. The initial meetings and inte~ewsoccurred on a weekday and, on average, lasted one and a half hours. ARer hearing a full explanation of the study al1 mothers consented to participate. One of the mothers and her infant were returning to their out-of-province home withln two days of the first interview. Therefore, this mother was intervieweci only once in a private lounge at the parent residence close to the participating hospital. The other mothers were intewiewed twice, either in their homes or in a private room at the hospital. The duration of the second interview was 1 hour on average. In one case both the mother and the father were interviewed. Both parents identified themselves as the infant's primary caregivers during hospitalization. The mother had returned to paid work when her maternity leave was over and had spent four hours in the LAF room on work days and twelve hours on her days off. Her husband had benfired fkom his employment aRer taking a paternity leave. He had spent twelve hours in the room, seven daydweek Because the focus of the study is on mothers' experiences, the father's interview data were not used in the analysis except b highlight gender differences in the parents' relationships with the infants. Only data from the mother were analyzed except when the couple were recounting their experiences together. 32 33 1 met three of the children (aged 1.5.3 and 4 pars old) who had been hospitalized with SCID. I did not ask that they be present and met them only if they were being cared for by the mothers during the interview. Two of these children were present for the duration of both intewiews. These interviews differed from the othen only because the children required occasional attention and were sometimes crying or noisy in their play. Two of the cMdren appeared parded with me. Two had round faces characteristic of steroid treatment and two seemed smaller than most chilàren their age. With one exception the mothers consented to tape the interviews. During the untaped interview, 1took extensive notes recording direct quotes whenever possible and transcribed the notes within eight hours to the best of my memory. 1wrote field notes for ail the interviews within eight hours and transcribed each interview within three days. Photographs of the infants, the parents and hospital staff in the LAF room were show b me by 2 of the mothers. The mother who had not yet left the parent residence had her memorabilia packed to go home. The two interviews with another mother ended quickly because her child requlled her attention. The third mother did not offer to show me any memorabilia. Four of the mothers appeared to be Caucasian and were Engiish speaking. One mother was Asian and spoke English as her second language at a very good level. The mothers ranged in age fhm 21 to 44 pars at the time of the interview and had ben 19 to 39 years old when their inf'ts were diagnosed. Three were married, one was in a common-in-law relationship and one was single. Prior to their inf'ants' hospitalizations, two mothers had lived in distant, small, rural towns and three lived in or around the large city of the participating hospital. At diagnosis, three of the mothers had been on matemity leave, one of whom had had a volunteer position one day per week. One mother was working part-time in a retail business. The fXth was not working for pay or volunhiering and had not been since becoming pregnant with the iil infant. During the infmts' hospitalization, one mother slept at home with her husband and two children. Another stayed at the hospital's parent residence with her older child and husband. Two other mothers slept at the parent residence, one by herselfand one with her own mother during most of the period. The nRh mother slept with her husband at a hotel close to the hospitai. The mothers estimated having spent an average of 10 hours in the LA.room each day with a range of 8 ta 13 hours. On admission to the LAF room, the infanta had ranged in age hm3 months to 10 months, with an average age of 5 months. The inf'ant of a single mother who lived in a nird community, had not been diagnosed until he was 10 months old. The length of the infants' hospitalizations ranged from 7.5 ta 14 rnonths with an average stay of 10.5 months. Their age at discharge ranged fkom 14 to 24 months with an average age of 16 months. None of the mothers knew of a diagnosis of SCID among their relatives, although one mother's brother had died at 5 months old of an wiknown cause. The mother's grandmother seemed to recognize the symptoms of the infant with SCID in this study as similar to the child's who had died. According to the mothers, three of the infants had been very ill at diagnosis. One had been admitted to the hospital with pneumonia and two were mahourished. The other two mothers did not comment on the health of their infants at diagnosis. One infant had been admitted to another hospital for 3 weeks before being transferred to another tertiary care hospital for 6 months. Finally, the infant was transferred to the participating hospital where he stayed for another 6 months. Another infant had been admitted to a tertiary care hospital where he was diagnosed. He was then transferred directly to the participating hospital. The third infant had been admitted to and diagnosed at the participating hospital but had been isolated in a normal ward room for 3 months awaiting a LAF room. He was in a LAI? room for 6 months. The fourth infmt had been admitted to a LAF room in the participating hospitd for his entire hospitalization. The fiRh infant had also been in a LA.room of the participating hospital apart from the first few weeks while waiting diagnosis. Each infant received an unrelated bone mmwtransplant an average of 6.5 months afbr diagnosis (range=4.5 to 10 months). Bone marrow donors for all five inf'ts were found through the international bone marrow registry. However, chances of finding a bone marrow donor for one of these infants was remote (1 in 20,000) as reported by the mother. The parents of this infant were encouraged to augment the chances of finding a match by soliciting people to become potential donors. This made the mother's circumstances different than the other mothers. The couple needed to raise funds to pay for the blood test for potentiai donors that cost $50 each. The father spent 7 weeks traveling internationally in search of a suitable match. Dwing this time he continued to be paid by his employer but had to make up the missed time when he retumed. The also mother spent considerable time each day organizing and participating in fwidraising events, interacting with the media to increase public awareness of her situation or soliciting prospective donors. She was also solely responsible for her 2 year old chiid. ARer approximately 3,000 people had been added to the international bone marrow registry, a compatible donor was eventually found for this infant. Append.H contains brief profiles of each of the participants and their circumstances. Al1 names and some details have been altered to protect confidentiaiity. In the findings that follow each quotation or reference to a mother's speech will be identified her pseudonym or by a number code. The fnte~ews The mothers seemed ta understand the purpose of the interview and to respond openly, describing their experiences in detail. ORen they told a story to illustrate an aspect of their experience they had found diffcult. In each case, answers were long and comprehensive, in language which was vivid and emotional. Emotional expressions included sadness, anger and frustration, amusement and pride in themselves and their children. Short pauses occurred during the interview when the mothers responded to their children's needs. The couple interviewed together, tended to interrupt each other, either arguing over a point or clarifying or expanding on the story of the other. I began each of the tir& interviews with the foîlowing paragraph:

1am interested in what it was like for you to stay with your baby in the LAF room at (the participating hospital). When your baby was hospitdized, you had to give up many of your normal daily activities. You spent most of each day in a small mm, clothed in a gown, mask, gloves, hat and boots with pur baby. Pm particularly interested in what the physical space was iike for you, what your routine activities were, how your relationships were affdand how you experienced the passage of tirne. Could you describe to me what it was like for you ta stay with your infant in the LAF mom in reverse isolation?

This approach allowed each mother to respond with aspects of her experience that seemed most important or stood out for some reason. Three rnothers began with what may have ken less threatening details of their daily routine such as their time of arrivai, lunch and departure. The two remaining mothers responded by talking about physical aspects of the room that made their experience difficult. As planned, 1 responded to the story of each mother by asking questions within the boundaries of the study's purpose but without confining rnyself to the structurai questionnaire. The second interview was used to dari& points or expand on questions and themes from the first interview. The fint and second interview did not yield substantially different or confiicting data but remained consistent. At the conclusion of the interviews, each mother was asked to suggest how her experience could have been made easier or what would improve the experience for future parents. Four responded easily to this question making one or more suggestions. One needed time to consider the question and opened the second interview with her suggestions. Four stated that they hoped the study would result in information that would make the experience more positive for other parents. Each mother stated that she hoped the Monnation would help me with my study. Al1 were interested in receiving a copy of the study report. Sub stantive Findi- The findings are organized according to the teneta of human geography with respect to the mothers' experience of physicd space, time, day-to-day activities and relationships in the LAF' room. In aaalyzing the accounts, it became very clear that when the infants were admitted to the LAF rmm, the mothers became disconnected hmboth place and time as they had previously been experienced. Their accustomed ways of marking time by the passing seasons, birthdays and festivities were irrelevant to their experience in the hospitai. However, they did not view the prolonged hospitalization in one "huge, long stretch' (m)of time to anticipated discharge. Instead, al1 mothers described how they had oriented themselves tn the immediate present and to the daily routine that was marked by the time when they went into and carne out of the room. They marked the duration of the hospitalization and organized their accounts accordhg to the stages of the infants' treatment. Receiving the diagnosis, chemotherapy, the transplant, and being discharged home were highlighted as crisis points. Time prior to transplant, immediately aRer transplant and before discharge were pends of stressfbl waiting. The infants were 5 months old on average at admission, and were 16 months old at discharge. Mothers recalled that as the infants recovered they noted developmental milestones, especially as infants became more active requiring more space to play. Along with the illness trajectory, the infmts developmental pmgress iduenced and marked the mothers' experience in the LAF room (see Figure 2). The results will be presented accordmg to the Linear time of the infants' illness trajectory. In chapter 4 the mothers' experiences of entering the LAF room when their inf'ts' were diagnosed will be described. In chapter 4,I will describe the mothers' daily experiences of king in the LAF room over the duration of hospitalization. The results in Chapter 5 wiU indicate how the mothers experienced the 'waiting", chemotherapy and BMT periods. Chapter 6 includes the mothers descriptions of the discharge process and retuming home. HospitaVLA1F' Time

Real I I I Real World Diagnoais waiting Chemo & waiting Discharge World T'me/ Transplant Tirne/ Places Places

Infants' Illness Trqjectory

Infants' 1 I Age 5 months 16 months Infants' Developmental Tigjectory Fi-ggre 2. Time as expetienced by mothers in the LAF room. (1) daily routine (not s hown), (2) infants' illness tqjectury, ((3) infants' developmental trqjectory. CHAPTER 4 Putthg LSe on Hold There were two related but distinct parts to the aaustments immediately required of the mothers when their infants were diagnosed with SCID. First, mothers described feeling distressed and shocked by the serious diagnosis, by the need to admit their infants to the LAF room and by having to spend al1 their time in dien spaces. As one mother said, the infmts were "thrown right into that LAF room in the hospital" (A)and the mothers felt they had "no choicew(#2) but to remain with them. Secondly, the mothers' daily routines and social relationships immediately namwed to the LAF room and it's relateà spaces. The mothers were forced to aaust to leaving places familiar to them and to entering a new and foreign space. Enterinn the W Room As expected, all of the mothers desmibed abrupt and profound disconnections from their usual. taken-for-granted lives. They recalled being informed that their irifmts were cntically il1 with a catastrophic diagnosis, uncertain prognosis and unpredictable treatment trqjectury. The best that they could look forward to was a prolonged hospitalization with complete recovery. A sooner reconnection to their previous Iives would ody occur if their infant died. When recalling the first few weeks aRer receiwlg the diagnosis, the mothers' stories were very emotional. This phase was described as confiising, f'rightening and exmciatingly pallrful. The uncertainty about their own and their infants' futures was vividly remernbered as was the consequent upheaval in their lives. The shock related to the seriousness of the diagnosis made the period seem unreal. In the following passage, one mother described her sense of stunned disbelief when she realized she and her infant would be hospitalized far from home and separated from her husband: When they tuld me what he had, 1just, oh (pause). I think the words, 'Air ambulance into (the city of the participating hospital). He needs a bone marrow transplant,'just blew me? (#l) The sudden change and 39 40 disconnection from day-to-day life was corroborated by another mother who said, rt's a shock. It's a shock It really, you know,from that day your Life seems changed. Al1 of a sudden and you dont howwhat to expect." (#5) A third mother described herself as king on 'automatic pilot", implying a dazed state of shock She reported, Tou know you have to wake up in the morning, lmow puhave to get out of bed, know you have to go down and make breakfast." She said she had not wanted carry out these tasks but they became routine, like clockworkw.(#4) One mother referred to the horror she felt when she was told of the duration of hospitalization at diagnosis. The length of theseemed endless to her.

When Dr. - told me a year to a year and a half (hospitalization), 1 couldn't even taik about it.... Yeah, 1thïnk them telling me it was one and a half years, it really snapped me into realization ...The first while 1 was here I thought, That's so far away". (#1)

The sudden and forced requirements of the LAF' rwm space made al1 mothers feel aiarrned and removed from their infants. This was particularly stressfùl. The critical status of the infants and the impact of the diagnosis and prognosis left them feeling frightened. Using hesitant speech, one mother described her infant's serious physical status and how it contributed to her sense of stress and fear:

Initially it was hard because he was, he was, um,sick at fir& 1 mean he wasn't, ah, he was on some pretty heavy antibiotics and ah, and ah, not thrïving and having, we were having ta go through a lot of um, a lot of procedures. IV (intravenous),um, you know, his veins collapsing or disappearing and having to do a lot of tbgsto him and, um,NG (nasogastric) tubes for feeding. And so um,that was ah, that was really stressful(#Z). 41 One mother describeà feeling tbat her child was slipping away and she was desperate to spend as much thne as possible with her. Wou don't know. You just don't have hope. You just worry, you know. The child almost gone."(#5) The requirement to Wear surgical garb in order to protect the infant from possible contagion served to physically separate the mothers from their infants and was Frightening and unf'iliar. Lack of skin to skin contact was upsetting to al1 mothers. aAt the beginning it was hard ta accept. Yeah. 1was very upset. I cried a lot." (#5) The mother who made the following statement, felt desperate ta protect her infant hmher own body by performing the rigorous smbeffectively:

Um, well, it was really um,at first it was, it was a little fkightening because I was so concerned about doing everythllig right and, and using the proper technique to get into everything and keeping it sterile and how you touched it and opened it and put everything on (#2).

The sudden discomection fkom her infant while he was king 'scrubbed" by nurses on admission was poignantly described by one rnother. Upon seeing her son's brave and god-natured reaction through the window, she realized that together they would manage:

Al1 of a sudden they just sent me down to (the city of the participating hospital) and put Matthew in a room and they gave me a tour of the floor and while I was doing that they scrubbed Matthew ...Well, al1 I did was cry and I looked in on Matthew and he was lookmg up at the nurse who he'd never seen before in his Me, smiling at her and I thought, 'We're going to be o.k, if Matthew's o.k.*. (tears in her eyes) VI). n FRmiliar Places AU of the mothers described a sense of loss and disruption aRer leaving their familiar lives. Four mothers had lett their homes to sleep at the parent residence or a hotel room. Coming to the large city fkom their rural homes accentuated two mothers' senae of dislocation. The streets outside the hospital seemed unsafe and uninviting. Both mothers felt like strangers in the ahen ci@, vividly describing a sense of homesickness:

1 don't like the city. Pm a country girl ...And the city, it Whtened me being in a big city... There's lunatics domhere and everything else... Oh, Pm a country hick. We own ten acres. So. We're the only house on our street. So Pm used to having Like, free reign, Rinning and fresh air and grass. You know, and trees that have green leaves. I was wed to al1 those things. And then, Like to corne ta the city, like everything's pavement, cernent, tall buildings. Millions of people walking around and you don't know who's a wino and who's not ...You can look at somebody and you know that they're going to say Ti"and srnile back at home but here you'd walk like you have blinders on. Don't turn your head, don't look at anybody else. It's basically look at your feet and hope you don't run into anybody. (#3)

AU of the mothers described a similar disconaection. One felt displaced and homeless. =in the first week, we stayed in the hospital. I stayed in the hospital. But it feels like we dont have a home. You don't think about your home much." (#5) The same mother described her continued sense of disconnection from familiar living arrangements when she and her family lived at the parent residence. Each family had one or more bedrmms but sheda kitchen, bathroom and large common room with other families of hospitalized children. She concluded, "It is not home." (#5) Another mother described similar feelings when her inf't was transferred to the participating hospital. Initially9she and her husband attempted to sleep at home. 43 However, the distance to travel, the CO&of gas and parking, and the inconvenience of having only one car when the mother retunied to work made this too demanding. The couple were told that they codd stay at the parent residence until another family f-rom fùrther away required the space at which time the couple would have to move. The mother felt that her %fe was already so disrupted" that she couldn't deal with more day-to-day uncertainty in her living arrangements. She heeded somewhere where they could settle". She opted for a local hotel rmm which, despite a special rate, was costly. (#4) Mothers were suddenly forced to make decisions about the various roles of their day-to-day iives. Most were given up voluntarily in order to allow the mothers more time and energy to cope with the demands of hospitalization. The desire to relinquish roles as employees varied. One mother (a)immediately took a leave of absence from her employment and resigned from her volunteer position. She said that this decision posed no emotional conflict or financial burden to her family. She did not hesitate to cut ties to all aspects of her own life except those to her older children at home. (#2) Another mother retumed home on weekends prior to her son's BMT in order to continue workuig. However, before his transplant she did not hesitate ta resign, although her ambivalence is revealed in the following quotation:

1 quit my job, 1 quit my job. 1just went into work and 1told him, 'Once he's transplanted that's it, Pm not coming home anymore." So I quit. ..Like 1 loved working. But, it was only part-the, extremely part-time. Wasn't really getting me anywhere. (#3)

The uncertainty of her infants health at diagnosis made one mother deeply confùsed about her own future. Two weeks prior to her infmt's admission her maternity leave had ended. Several weeks later she decided to remto her job in order to secure her position but soon afterward learned that the chances of finding a bone marrow donor for her infmt were low. Therefore, her infant's prognosis was elrtremely precarious and the mother again 'struggledWwith ber own friture eventually reaching an arrangement with her employer in which she bwed timew.(#5) AU mothers gave up their roles and became completely dedicated to the needs and protection of the infants. One mother reported that she had eady accepted the role losses in her life and described moving fnw one role to another by aausting to whatever she had to, Tmsort of like a charneleon. This is my life. 1live what 1have to live." She said she missed aspects of her life that she was discomected from but refused to udwell on the part that hurtOw(#4) The two mothers who had older children athome were concerned about the lack of time they were able to give them. One mother had given up ail roles without question but stated, "The only thing that mncerned me was, um, my kids at home." (#2) The second mother felt uguilty"about her forced separation from her older child, who she was unable to care for during the few days amund diagnosis. Her repeated comments about having to leave her toddler with fkiends necessitated by the fact that she and her husbands' families were not close by, indicatd her uneasiness with the arrangement. The separation of ber family furtbered this mother's sense of disconnection. matfirst week 1 didn't see my other girl at ail." (#5) Other relationships with family and fiends became secondary and almost nonexistent for the duration of the hospitalization. A sense of unf'iliarity and loneliness was described by one mother who had lived by herself at the nurse's residence for the first two weeks of hospitalization. This mother was separated from her usual family support systems. Instead of spending time sitting in a room by herself in the evening, she would stay in the LAF room as late as possible. Each of the mothers referred to losing touch with niends and family. One mother described relationships with fiiends that were 'put on hold for a year". She imposed restrictions on incoming calls to the LAF room for fear of disturbing her infant and limited outgoing calls to friends because of long distance costs. (#4) Another commented that an inability to receive telephone cdsfrom fkiends at the parent residence exacerbated her isolation. (#5) A third felt abandoned by fkiends and her father who 45 contacted her infrequently, or not at aü, during her fourteen month ordeal. (X3) To optimize their ability to cope, al1 of the mothers shrank their social responsibiiities for the duration of the hospitalization to only the most essential or significant relationships. The demands of the LAF room and their infmts' hospitalization exhausted the mothers. Three reporteà that they had no inclination to Yrehash everything" with friends and family. One mother spoke of her conscious decision to 'pare it all dodso that she could focus on those who were most important to her in the following quotation:

(My husband and I) just didn't' we diMt go out. We didn't, um,we didn't socialize. We just, you know, pared it all down to what we had to do with the family and that was it .. .The only relationship we had when Rob was in the hospital was with our immediate family and um, 1 mean, my relationships with Rob, with my husband, my two children. (#Z)

For this mother, the conscious disconnection from her social Me was a strategy to cope with her exhaustion. '1 kind of separateà (the hospital) from my everyday Me." She was happy being able ta focus al1 her time and energy on her family:

But every other relationship in our lives disappeared for that year. 1mean 1 did not really, 1just didn't have anyrelationship... 1just knew that al1 1could cope with was this and my own immediate family. And I didn't have the energy to, to cope with anything else. So 1just completely focused on this and, and 1 was happy. (#2)

As a result of extreme anxiety about prognosis and disconnection from familiar places, mothers experienced enormous upheaval in their living arrangements and habits, in their support systems and in their anticipated futures when they went into the LAF' room. Above dl, their infants' diagnosis brought emotional anguish. CHAPTER 5 Mothen' Daily Experiences in the LAF Rmm This chapter will describe the mothers' recollections of their overall day-to-day experiences of spaœ, place and time in the LAF room. In order to understand how the LAF room location affectecl their hospitalization experiences, the mothers' daily routines and mothering activities, the impact of the physicd space and it's attributes, and the nature of significant relationships will be described. Dailv Routines AU mothers spoke of a daily routine which they gradually adopted and which brought some familiarity and predictability to the uncertainties of the day. When asked about a routine, al1 immediately responded by stating the time they arrived at the LAF room in the morning, and when they IeR when the infant napped and for the evening. The following three quotations illustrate this pattern of how routines were marked by entering and leaving the room: 'O.K., weli, my daily routine was I got up at 7:OO. 1 left (the parent residence) at a quarter to 8 (a.m.) and 1 usually stayed til 8:30 or 9:00 @.m.) and hoping that he'd nap so 1could go have lunch." (#1) Tdgo in at 10 (a.m.1 and rd stay ti12 (p.m.) or whatever when he fell asleep and then rd go back at 3 (p.m.) and Pd stay til7 or 8 (p.m.) or however long." (#2)

Um, but the long hours, Pd stay in there fkom 8:30 in the morning til1:OO and then I'd go out for an hour for a break and then Pd corne back in, um, at 2 or 3 (pm.)until usually 8 or 9 (p.m.) with maybe a bathroom break in there, 5 minutes out here and there. (#3)

Four mothers walked 5-10 minutes from the parent residence or a local hotel while the fifth mother drove 15-20 minutes from her home. The three mothers who slept at the parent residence leR the residence between 7:45 and 8:15 a.m. to walk to the hospital. Al1 three commented that this 5-10 minute walk was their only 46 47 source of exercise. qxercise? We walkd to and hm(the parent resideace). Um, that was pretty much it. (#3)" ARer entering the hospital, which was explicitly characterized by two mothers as a VifferentWworld, the mothers would go up the elevator to the unit. Instead of king open to the hospital corridors as other unitg in the hospital were, the BMT unit doors were kept closed. The rnothers walked through the unit door which then shut automatically behhd them. Like the hospital, the unit was described as a separate world, "(The unit) is a world of its own. Yep. It's just like when you shut the doors (to leave), you're leaving your home town." (#1) Once on the unit, a mother put her own belongings in her locker in the parent lounge and went to the LAF room which held her infant. 'Gearing up to go in the room" (#2), aithough frightening at first, gradually became routine or 'second nature" (#2), %ke a nurse putting on her uniform to go to workm(X4). Debbie felt the time needed to scrub before entering the room served to accentuate her disconnection from her son if she could see that her infant was distressed, The only time it bothered me to scrub in was if he was crying and 1 was in the anteroom and couldn't seem to get to him fast enough and 1 had to get scrubbed in." (#1) During the interviews, the mothers had trouble recounting their activities in the room in any detail. They usually listed child care practices: feeding, bathing, diaper changes, holding. (#4) One mother made a tremendous effort to describe her routine in the room. She attributed her difficulty recounting the activities of her day to the unreal quality of the passing of time:

I cm sit here and try and imagine what on earth I did in that room for eight hours and, 1 mean, 1, 1, IIknow 1 held him a lot, 1 held him an awful lot. Carried him around and just ah. Um. (pause) Showed him things and, 1 guess, talked and, and talked about things and sang little songs and, um,we did things with the hospital sm You know, they say kids like pots and pans, well, you know, we played with often not toys but with things that were passed into the 48 room, puknow, boales or little medicine things. We, we'd play with that and um,1 guess the days just kind of went by in a, in a bit of a blur . (#2)

The word %ring" was used repeatdy to describe routine activities in the barren LA.room. One mother (#4) described her activities while her infant was playing on his own. She would waeh his toys or sit and watch him while she 'Yried not to fa11 asleep". Boredom because of the limited activities available in the room to keep themselves and their children enbrtained was a problem for two other mothers who also felt exhausted in the LA.room. "Bored, just not too much there." W5). ARer teferring to her routine in the LAF room as umundane"it seemed that the following mother attempted to make it sound interesting:

So our routine was very, um, mundane (laughter). We used to listen to a lot of songs and tapes and N carry him around and kind of sing and dance til that wore thin and we'd watch some TV. We'd, you know, we'd watch Sesame Street or whatever and 1,I would watch um,you know, some programs for me too... And maybe try to feed him or whatever and so it wasn't ail totally geared to just Sesame Street and that type of thing. 1mean I did watch some adult things. 1 watched the news and um, things like that in the early evening. (#2)

Two rnothers stressed that the childcare activities, although "mundane"and %or@", required the, ski11 and perseverance because of the infants' status and treatment:

You know, when he was eating a lot of the time was spent trying to do that and cleaning up. Things just seemed to take a while because there was always, nothing was easy. If he had al1 the tubes and things on just to, if he spit up or 1 had to change him. 1mean, it all took so long to do that. 1guess, um, you couldn't do anything too quickly. (U2) 49 Like, 1 was not redythere and had nothing to do. AIways busy. Always busy. When she eats, she was not feeling well. She was sick She has dimhea constantly. You just, you, her problem is feeding and diarrhea. Changing diaper. Every four hours, 1go to feed her and the, every feeding just take me an hour, an hou and a half. trying every possibiüty. It's just, you know, feed her, change her and try to play with her. (#5)

Much of the time was spent trying to entetain or cornfort the il1 infant. Looking out the window, playing with a Limited number of toys that were easily cleaned and carrying the infant around were fkequently mentioned activities. Al1 of the mothers listened to children's tapes and four watched children's programs on TV. Even up to four years later, al1 still remembered the words to the songs and the times and names of the television pmgrarns. The mothers described very few activities done in the room for the pleasure they gave the mothers alone. One mother described watching the news on television twice each day. As well, she enjoyed viewing a special series and commented on her dismay when it was over because of the void it would leave in her day, YI remember thinking 'It's over' ... And 1thought, What am 1 going to do? (#2) Another mother tried to do a puzzle or write lettms but only when her son did not demand her attention. The couple commented that a bingo game broadcast to the unit to entertain older children was a highlight of their week. They appreciated the staffs attempt to make time in the LAF' room more interesting. (W) ALI of the mothers leR the room when their infants napped to attend to their own persona1 needs. Two used the time to wak, uget the stifhess out of my bones* (#3) and dl mothers ate and used the washroom. Three often socialized with parents of other hospitalized chüdren. Two felt productive when they were able to get chores or errands done. Time in the LAF room passed slowly in the aRernoon for two mothers who felt particdarly tired. One mother described waiting for or almost willing tirne to pass. 50 uSometimeswhen Pm reaily tired, I...really watch my watch.'(#5) The second mother perceived time going by quickly except in the afkrnoon when she felt that a lack of air made her tired. "My longest time was usually fiom three tii five.. .I guess the air, you don't have enough. 1used to think, 'Oh Matthew, go to sleep cause I11 have a nap with you'." (YI) The infants Bornewhad become the LAF rmm, separated from the family home by the triple boundaries of the hospital, unit and LAF room. The mothers were not dowed to sleep in the LAF room because of the risk of breaking isolation protocol. Henœ,the mothers had to leave their babies in the rcmm when they departed for the evening. This was particularly difficult for the mothers, each referring to their reluctance to leave. 'It never felt naturaln (#4) One mother insisted that it was her responsibility to care for her infant '24 hours a day. Not 12, al1 24." (#3) Amy's anguish at leaving her infant is obvious in the following quote:

Initially 1couldn't believe that 1was leaving my baby at the hospital and going home to sleep. And 1remember saying that to my husband. Zike he shouldn't, we shouldn't be here and he be there and how could we leave him?"

The uncertainty of her babfs prognosis made it especidy difficult for Wendy when she could not be with her as is indicated in this quotation. YBothersme just that 1 don't know how much the she had. And how much time left. 1wanted to spend every minute with her. (crying)"(#5) The initial dislike of leaving the infants alone in the evening becarne ambivalence with prolonged hospihlization. Four noted their own relief to leave the room if the infant was medically stable. Two would only leave once the child was asleep and two le& him in the care of a husband or nurse. One noted how establishing a routine eased her departure. She described rocking her son to sleep, placing him in the crib with his soother and laying his blanket over him. She then left with relief and peace of mind. (#2) 51 The mothers spent liale time talking about what they did in the evening. Each went home, to the residence or hotel room to eat an evening meal and sleep. One went Bornewto the residence to enjoy the Company of other parents (#3) and two spent time with their older children. (#2 & #5) Each mother's daily routine was described as a repetitive cycle of entering and leaving the room. Routine activities were dehed by the boundaries of the LAF room. The mothers' activities in the room were solely dedicated to the infants' care. The limited activities to fidfill the mothers' own needs and desires took place outside the room and were referred to far less obn. The infants' changing conditions brought some variation to each day and may be the factor which made two of the mothers deny the existence of a routine at all. While one mother described her routine, she rejected the idea of having one:

1got there around eight, maybe after eight or just before eight, um, when it was breakfast. We'd have bath time between ten and eleven and then he'd have his nap from eleven und about one. Weil, we'd do somethUig between eleven and twelve and he'd go back to sleep about three or four. Um,so those are kind of like when Pd have my breaks. Corne back in. Playtime, like we just spent the aftemoon was kind of like playtime. Barney (chilben's television show) at 10:30 and 3. Those were ugot to do" things. Um,really, really didnY have a routine but the mealtimes and bath time and nighttime. That was pretty much it. (#3)

The routine that the mothers devised seemed to be a necessary part of rnanaging the situation. It made their lives as predictable as possible given the circumstances of their infants' precarious status. An unreflective approach to some parts of their day seemed ta be needed for survival in an otherwise overwhelming and sustained life crisis. The routine was explicitly referred to by two of the mothers as essential. One mother described her "need"for a structured routine. (#4) Another 52 said she was "comected tawand satisfied with her simple routine of entering and leaving the LAF room in the following excerpt:

I fdtjust very connected to my little routine at the hospital. That's what kind of sustained me. 1,Igot into the routine of when 1came and when 1got to go out and have something to eat and then 1came back and it was, it was always the same and um,it was pretty, um,that was pretty much it. I didn9tdo tao much of anything outside of that. (a)

Reflecting back on the routine mothers really described how time passed:

We did it every, you know, we were here with him every day... 1 tried to make it just my routine. And then we got into a routine once 1went into the room with him and, um,quite honestiy I don't, 1don't know how the hours passed ...I don't know where (the time) went. 1,I1, um,can't tell you anything that, that, um, you know, took up particular length of theor any specific routine that 1didn't think, oh, its 11 o'clock, um,weQ do this. There wasn't a routine but 1 suppose we just, um,naturally kind of got into one. (#2)

Two mothers asserted that the routine was also an important method of connecting their infats to a LLnomalwlife at home. One mother felt that allowing herself a genuine display of her emotions to her son, no extra holding or cuddling, making sure that he played on his own at times throughout each day and leaving him to fa11 asleep on his own when he was well made his life more "normal". She firmly insisted that the television not be used by the nurses as an "electronic babysitter"for their son. Although this caused conflict with the nurses, she asserted that her son would not have watched it at home. The second mother described her attempt to make her son's routine fidl of "every daf activities in the following way: 53 1cüd with Rob what 1 would've, you know, 1 tried to make his routine here as much, as much like his life would've been if he was at home only on a much more, um, you know, at a ciiflemnt level. But, you know, just to do the things with him and ah, and treat him on the days that were just days to be here and to and to have fun and be with him, just do, kind of every day normal things that became his routine, a routine that he knew. (#2)

Each mother devised a routine whiie taking care of ber ili infant in the LAF room. The mothers were "stuckW(X3) in an extremely narrow and unvarying set of spaces bounded by the place they slept, the route from the residence to the hospital, the public portions of the hospital itself, and the enclosed BMT unit and LAF room. Only one mother who spent weekends fiuidraising in various sites spent time anywhere else. The daily routine was marked by crossing and recrossing the boundary of the LM' room. Routine helped mark time and, hence made time pass. Mothers appreciated the routine for making part of the day predictable, making the space familiar and allowing their infants some connection to the "normal" place of home. Routine also allowed the mothers to begin to make the LAF room their own. Motherinn Activities - Protection In addition to the caregiving activities which mothers described as part of their daily routines, they listed other activities which they ciearly perceived as important to tbeir matemal role. Mothers enhanced the protection that the LAF room offered the infants by their constant presence, advocating for their infants, controlling the physicai environment and the infant's activities and by making decisions about care. One mother illustrated her fierce protection of her son when she stated, "Matthew's my We. If you're messing with Matthew, you're messing with me." (#1) Protection activities allowed the mothers some control over the space, the infmts and what happened there. Through canying out these activities the mothers controlled what they could within the constraints of what was demanded of them. By so doing, they 54 also maintained their matmat role. Mothers desciibed two types of protection activities: guarding and controiling the LAF room space. Guardine Advocaüng for the infants was reported to be an important role by al1 of the mothers. 1have called it "guarding" because the mothers tended to use it very protectively, seemingly becoming a shield or a second boundary to that of the LAF room itself. Within the boundaries of the LAF room the infmts were physically protected hmcontagion. The mothers were a second line of protection against physical and social threats. Advocacy or guarding offered a way to avoid or correct care perceived as inappropriate, whiie enhancing the possibility of excellent care. One mother explained the purpose of advocating for her infant. Wejust wanted to make sure that everything was done the way it should be or, you know, over and above." W2) Three of the mothers explicitly reported guarding the infants by speaking for them as can be seen in the following excerpts: T!he, the patient, yeah, like my daughter, she is a baby. She can not stand up for herself. So 1really, 1 am her voice." (#5) We couldn't talk for himaelfso 1did a lot of talking for him. Fight for him, stand up for him when things (weren't done right)."(#3) Another said:

1just saw myself as, you know,obviously when you're five months old you don't have, you can't do much about mything that's happening so I just thought 1 have to be here to be the one who speaks for him and makes sure, you know, things are going as best they can or if something had to be done that it was as, as, um,painless or um,as easy as possible for him. (#2)

The mothers guarded their infants from staffwho were perceived as jeopardizing the infants' well-king. One mother described her need to be in the room to protect her infant from inappropriate intewentions: 55 And 1thought, this isn't right. You know, you, you, wouldn't do that to an adult. Just walk in while they're sleeping and give them a needle or take a biopsy of skin out and, and, you know, 1just wanted to be there. (#2)

Another recounted a situation when a nurse did not attempt to engage or communicate with her son . The mother refiïsed to have that nurse care for her son again. The mother advocated in order to guard her son from socially insensitive interactions. The same mother told a story of hou she refused a recommended feeding tube for her son because she perceived it as threatening to his well-being. To prote& him and to relay her own fears, she painstakingly undertook to feed him herself. Further, to add to her infants cornfort she insisted on changing an unpalatable formula. These instances of advocating for her infant straineà her relationships with the dietitian and the nurse. (#1) Not al1 attempta to guard their infhnts were successful. One mother angrily told a story of her faiied attempt to advocate for her son's well-being. This mother felt that a statfs neglect and ignorance about the reverse isolation precautions threatened her infmt's health. During an invasive procedure, a doctor had neglected to cover his nose with his mask. When the mother requested that he adhere to the precautions properly, he did not comply. Upon the mother's insistence, two other staffrequested that the doctor adhere to isolation protocol and yet still he did not. The mother felt very distressed and powerless to protect her son from the threat of infection posed by the doctor. (#3) All of the mothers advocated for their infants by reporting care they perceived as inappropriate to a stafhnember with the knowledge or power to get things changed or attended to. However, ali also described their discornfort about reporting. One mother expressed her misgivings, "I didn't want to step on anybody's toes." (#4) . Another mother stated that she did not like to cornplain but she felt she had no option but to advocate for her vdnerable infant. ?iam not a person to really want to cause trouble." (#5) In the following quotation, another desCTLbed advocating to guard her infant despite her mwillingness to be perceived negatively by staff:

1 guess because Pm the type of person that generally doesn't Like to be um, thought of as demanding and I have a hard thewith, you know, ifsomething's not. It's not my nature to corne on like gang busters and, you know, look through a place and Say 1 want this and this and this and this but I did make sure that if anythuig 1 felt wasn't king done or should be done düferently or 1 was unhappy about something, then 1spoke up. (#2)

Resulting tension with staff did not stop them fkom continuing to cany out the role. By advocating for their infmts, the rnothers exerted some control over whether or not procedures, for instance, were done, when they were performed, how care was provided and by whom. Hence, by guarding the LAF room, mothers protected their infants and began to influence the nature of the space and the activities that occurred within it. Controllhn S~ace The mothers attempted to control the space of the LAF room in a further effort to make the space safe and protect their infants. Two mothers controlled the social dynamics of the room by attempting to work out their own routine around the work routine of staffto meet the needs of their infants. Amy carefully structured the timing of her arriva1 in the morning to coincide with a nurse's presence:

(The nurses} bathed him in the moniing before 1 aniveci and um,1,I kind of wanted to do that because I knew that meant that they had to be in the room with him and that would take up a certain amount of time so that, 1mean, it was almost my guarantee that someone had to go in.. .Once he woke up I didn't want him to just be sitting there on his own and so, um,even when the cleaning lady came in it was, you know, great entertainment for him. (#2) Tracy was irritated by interruptions of her routine in the LAF room by staff. The intrusion demonstrated to Tracy that although she was caring for her child in a isolated and enclosed space, it was not private. She attempted to regulate the staffs work routine:

Um, the one thing that really bugged me was working around other peoples' schedules... You're interrupting our schedule. So 1finally put a sign on the window, 90not enter uniess his mother is here and between such and such a time and such and such a time don't corne in at dlbecause we're busy." Well, I got in trouble for doing that.

Two mothers desctibed attempting to exert some control where they saw fit to change the isolation rules. Although the deswere set up to protect the infants, Claire made the decision to ignore them to a very limited degree in order to safeguard the infant's mental health. She explained that part of the isolation protocol was that the infant could not be touched above the neck. Claire and her husband chose to disregard the rule because they did not want to deny their son of all affectionate contact. They kissed him on the top of the head as mon as they got into the room before their masks had become moist from breathing. Claire also brushed her cheek against the back of her son's head. According to reverse isolation des,the couple were the only adults other than staff allowed inta the room. However, they insisted that their child's grandparents be allowed to visit. The couple felt that it was important for the grandparents and their son to establish a relationship in case their son should die. (#4) Another mother also describeci "cheating as follows:

Well, Mac took (the mask) off me al1 the time. Yep. We cheated a lot. If Dr.- knew that he'd kill me ...Like 1never took my (surgical garb) off or anything like that. 1 never touched his skin. Um,or gave him kisses or anything but he'd pull my mask off...He loved seeing Mummy's face. (#3)

Although, she perceived this behaviour as benefitiag her child's health, the mother made it clear that 'kheating" had definite limita based on her perception of the risks involved. Controlling the LA.mm space oRen meant that the mothers needed to control themselves. One mother described directing the atmosphere in the room by protecting her son from the sad or angry ernotions she was feeling. She attempted to be very positive in the room, fearing that her son wodd understand negative "vibes" and that they would effect his will ta fight for his health. When she cried, for example, she left the mm. 4 didn't want ta put that on him." (#3) Another mother stressed how "fanatical" she and her husband were about following all the desof the reverse isolation protocol. This meant that she had to be very conscious of her intmaction with her son and of her body movements.

Ifsomething fell or 1thought something brushed my face or, if his hand brushed my face, 1 washed his hand with the clean water in the room. We, we didn't take any short eutg or, or sneak any or do mything that we shouldn't have. Sneak a kiss or (laughter) anything like that. We just, we were so good...y0 u couldn't touch your face or, you know, do the things that you think about how often you do it. Like sitting here like this (1 was leaning with my elbow on the table cupping my chin in my hand). You just couldn't do that. (#2)

The extensive amount of control Claire and her husband, Don,exerted in the room was veiy important to them. In case of their son's death, they needed to know that they had done everything within their power to protect his health. Claire and Don called themselves the %anagersVof their son's care. This role included coordinating the various professionals who intervened. There were always a great 59 many professionals involved in her son's care and she fond that they were often ignorant ofwhat the others were doing. To protect her infant she inforrned the professionals of what each of them had said and done. The couple %ept the pieces of the puzzle together." They were also the "the ultimate decision-makerswregarding treatment. They wouid listen to the advice and recommendations of the doctors at weekly meetings but would then withdraw to discuss the matter themselves and make the final decision. They used the same strategy with nursing care. To assist them in their des,they visited the hospital statflibrary during periods out of the room to read as much as possible by %ny quack around" about SCID and reported cures for immune system pathology. This necessitated that they lemhow to use the medical index and read the medical literature. Unfortunately, they had ofien become frightened by outdated literature citing poor outcomes for chiidren with SCID. Because of this experience and their Wrst for knowledge, the couple suggested thet a compilation of recent, relevant literature be available to any parent who requested it. Claire's control over many aspects of the physical space and her son's care was an extreme example of the extent to which all the mothers desperately attempted to protect their infants. In The LAI" Room The physical space of the LAF' room played a central part in mothers' experiences. Their infants lived in it and it was the site of al1 treatment including the curative BMT. One mother reporteâ her focus on the room in the following way:

It's just the whole experience was the room because that's, that's it. That's where it happened and, and um,you know, that's where he even had the transplant, in the room. So the room is everything (#2)

The mothers suggested that the LAF room was a separate world, removed fiom the world outside. One mother agreed that she was in her &ownIittle world" while in the LAF room. Tt was just that's where we were and that's where he lived." (a) As the mothers described the LAF room and aspects of it which affected their experience, they attaehed emotional significance to their descriptions. The LAF mm became meaningfid as a place to al1 the mothers. Most importantly, the LAF' room and reverse isolation meant protection and a chance of sumival while awaiting BMT for the infants. However, paradoxically, it also meant isolation and confinement. A Protective Place Al1 the mothers stressed that the LAI? rmm was the right or gmper place" (a)for their infants. Four of the mothers expresseci an appreciation and agreement with the careful reverse isolation des. They were adamant that the desshould remain strict to protect the infant as much as possible. '1 don't think you can do it any other way and protect the child. 1really don't. 1 think it's wondenul." (XI) Amy talked extensively about her relief when her idmt was admitted to the LAF room where he was able to receive the appropriate treatment. She noticed a visible improvement in his health status which ülustrated to her that his recovery was optimized by the protection of the LAF room:

Things got a Little bit better when he went uito the ah, iaminar flow rmm and he was put on a central line and he started to gain weight and we knew that he was as safe as he could be as far, um,as where he was ...Every day was a lot easier once he was in the proper roorn, proper space. (#2)

Although the room was perceived by the mothers as the most protective space available for their infmts, the floor was contarninated and threatening. The infants were not allowed to touch the floor. If any item fell, it had to be kicked out the door without touching it with gloved hands. As the infants recovered and learned to crawl and wdk, the threatening aspect of the floor &came a source of stress for 3 of the mothers. One mother described trying to catch her son before he put his hands on the floor when he was learning to walk as "nerve wrackhqf. (H) 61 While the mothers became part of the infant's protective environment by guadhg their well-king, al1 were aware that their own actions and bodies threatened the space with contarninants. One mother recounted adding extra precautions of her own to decrease the risk that she would contaminate the LAF room space:

And 1even didn't Wear my street shoes in just, that was just something 1 thought, well, you don't know what you're stepping on in the street, even though 1have booties on ... So I just, ah, got a little pair of slippers and left them in my locker and always changed. That was just something 1wanted to do. It wasn't somebody told me. (#1)

This mother went on to describe her anguish when her son got an infection. She questioned her own responsibility for it:

One of the viruses could have corne in on my pants. And the other one he probably gave himself fkom touching his privates and me not getting his hands sterile fast enough... Like, like Pm sure that's how he got this one. And it was a terrible virus but 1asked the doctor, Vid I bring it in? He said, "No" but 1 think maybe. (#1)

The mothers perceived the LAF room as the only place where their infants were protected. However, even within this "proper place" there were threats of contagion. The floor, SMwho were inattentive to reverse isolation protoc01 and even the mothers themselves threatened the safety of their inf'ts. Although the LAI? room was the safest place available that offered protection fkom infection, it was not ideal. An Isolatine and Confininn Place The LAF room as a protective place for theîr infats was jwttaposed to how 4 of the 5 mothers described the room for themselves. Descriptions of the adverse 62 nature of the LAF mmwere much more frequent than those relating to the room's protective qualities. Three mothers found the physical and social isolation of the LAF room forced and unpleasant. One mother declareci tbat she missed adult companionship and was bored with the company of an infant only. (#4) Another mother described anticipating the arriva1 of staff who would diminish her loneliness as follows:

It's a space that's so isolated. You have nobody to talk to. And some days you hop, you know, you really ah, loolong forward tu see the nurse, to see people come... You have sorneone just to talk to. (#5)

A third mother described her isolation as sMi1a.r to her perception of segregation in prison in the following passage. She felt bord and desperate for social interaction.

It's almost, ah. It would be like you were in jail ... just iike segregation. Like anytime that anybody came in. Well, whenever (the child's father) came down, it was funny cause he'd come in and he'd play with Mac and Pd try to talk to him cause Pd been segregated fkom people in this room for so long that when someone came, you want to yack their ear right off. ..He'd tone me right out. So like I'd go, That's good company." So then the nurse would come in and it's like "Let me yack to you. You know, üke I'm totally bord. Let me talk to you." But she had other things that she had to do. Oh man, who am 1supposed to. Like Pd phone my Mum and she'd say, Weli, 1should go." Pd say, "Mm,no. I want to talk. 1 havent talked in so long." But that waa hard. (#3)

In another quotation, the same mother referred to the room as a jail which held her son under the direction of 'they" who were presumably the doctors. The two of them were caught and isolated within the boundaries of the LAF room: 63 Like when you're sitting there, iike it's just, you've got walls d around you and you codcin't open the door dessyou had to go out or something so it really is like you're in prison. You're in a jail ceU. And they won't let you out with pur child. (#3)

Three mothers commented on the paradox of physical and social isolation in the public LAF room. The glass wall to the unit *took away the Iittle bit of privacy". (#3) The window made the mothers and infants bpen" to viewing and being viewed but they were still enclosed by the LAF' room boundaries which iacluded the windows themselves. Two mothers found the constant possibility of king monitored by staff a threatening invasion of their privacy. In the foliowing quotation, Wendy felt the staff were judging her parenting by monitoring her activities in the room through the corridor window. On the other hand, Wendy was able to guard her infant by viewing the actions of the stafE

Cause (the LAF room) it's open. Everything in view. Like 1was watching (the nurses), like every time they, üke every time they came in, 1watched what they do. But they also watch what I do. They watch me. What 1do. They watch me, how much tirne 1stay with, what 1 do there, on the phone or whatever. They really watching me. (raised voice)

In contrast, two mothers described the pleasure their infants got fiom the opportunity to see and wave to people outside the room. One reluctantly gave up her own sense of privacy to provide her son with the social interaction. (#3) Debbie enjoyed the attention her son got from other parents and patients and the pleasure her son gave to them in rem. 'Tm pretty proud of him so 1 didn't want to hide him. It made me feel good that they wanted ta see Matthew." The required garb contributed to the mothers feelings of confinement. Amy recalled how the surgical garb made her feel atifledw: Well, it was (stitling)in a number of ways because fist of dl, you're in an enclosed space that you couidn't just casually leave and reenter. It was the whole ordeal of going out and mostly coming in and then seconàly you were breathing through a mask for hours on end and ...So it was very stifling. 1 mean, you know, mentally and physicdy, because you just, you were, it was dry and you were just breathing through this mask for hours on end and, ah, not to mention you had your own clothes on and then a hospital robe. (#2)

Wendy expressed how the mask was suffocating and made communication with others in the room difficult, isolating her still hirther, Zt's hard to breathe. It's hard. Yeah. It's hard to breathe. And it's hard to tak to people and you have to talk ta people with the mask and pucan't see people. It7sharâ." As well, the mothers were confined within the garb because they were not fkee to make skin-to-8kin contact with their infants. The pain of not king able to feel her infant is obvious in Debbie's recollections, 'Even bathing with gloves. 1had to try and feel him, but can't. Ooh, wash his hair and you can't feel his hair." (#l)Claire admitted to the joy she felt touching her younger daughter's soR skn. Her daughter had been born Arher son's discharge hmhospital. In the following statement, one can sense Claire's wistfulness and realization that by the time she was able to touch Geny's skin, he was no longer baby soft. Babies have such soR skin and when they get older they aren't as soft." AU mothers referred to king "stuckWor caught in the room because of the garb which made leaving and reentering the room a nuisance even to meet the mothers own physical needs. 'It's not the kind of environment that you're kind of hopping out of and back in again...I mean 1just didn't, just didn't go out. Once 1 went in, 1 was in." (#2)Going to the bathroom, eating and drinking were delayed untii the mothers leR the room. One mother gave the following description of the strain: 65 In that room it is hard because when you go in, it's so hard to get in. You have to scrub for two minutes, go-, put the gown, mask, everything, gloves and you know what. You know,you go in and if it is not necessary you woulcin't go out. Sometime in the whole moning, 1just don't go out, even if 1want to go to the washroom. Ijust wait for, you know, couple of hows ...You can't even eat. Whenever you go out you have to put, you know the sterile gown , everything again. Yeah. It's just, it's just not convenient... When you're hungry, you have to wait. Wait and hope she goes to sleep... Sometimes when you have to go to washroom, if 1 can wait 1just wait as long as 1can. (#5)

Mothers suggested that the small size of the room made it confining for themselves and their children. One mother responded to the first interview question, What was it like to spend time in the roomT by responding "The room is too small." (#5) Two mothers focused only on their infants' feeling of confinement in the small room as they learned to crawl and walk. The mothers noted how their infants' development changed their own perspective of the LAF room. As one infant learned to walk and became fnistrated with the smdspace, his mother began to find the room confining. She became impatient to leave. This is illustrateci in the following excerpt:

The rooms were small but it was ok when he was little and sick but when he got wanting to walk around and 1fond the room confining... Yeah, 1 found it really confining once you get active and 1 wanted to go home ...He wanted to get going ...Wang around his crib and a friend of mine bought him one of those push walkers that he pushed everywhere ...The length of the room wasn't enough for him. He'd ram it against the door and go Iwant to go out." (#1)

Tracy made many comments about the negative effect of isolation and confinement on her son. Mac was ten months old when he was admitted and "stuckm in the LA.room. One may presume that he was more active and cognizant of the world around him than the younger infants with SCID. Tracy fel t that her son did not waik according to deveIopmental milestones because of the limited space and stimulation of the LAF room. In the following passage, Tracy described her son as if he were held captive in a cage, impatient to escape Like the infant above:

He was five days short of king two when we were dischargecl. So, like he was almost walking when we leR here. Like that little room. He didn't redly have anythmg to pull himself up on or anything to motivate hirn to do it or go over there and walk to it. So al1 he really did was ride a little car around the room and even then he could oniy go back and forth, back and forth ...Whenever the door opens he scooted for it. He ran for the door to go out. (#3)

The meaning of the room ta the mothers is demonstrated by their thoughts when going in each day. One mother came to the participating hospital from her work shift via the hotel where she and her husband were staying. She remembered driving on the highway anxious to see her son but wishing she could stay out of the LAF room 'a Little bit longer". With prolonged hospitalization, as the doors slid shut behind her, she thought, 'Oh, here we go again", suggesthg that she was surrendering herself to yet another day in the rmm. When asked how she felt when she wns going into the room, this mother replied, Wonestly? 1didn't want to go. 1 wished 1didn't have to do it." For this mother, the LAF room space meant persona1 confinement but was tolerated because her son was in it. (#4) Another mother commented that the room was "not the place to be for too long." (#5) One mother expressed a reluctance to return to the %oring" room after a pleasant %reaknsocializing outside with other parents. (#3) On the other hand, even with the antipathy noted by the mothers about reentering the room, al1 five declared that their desire to be with their infants overrode their feelings about the room itself. Three said they did not consider the nature of the room at al1 when entering. Instead, they were only "eagerw(#2) to see their infmts. One mother said, '1 just didn't seem to have any want to do anything except be with Matthew." (#l)Another mother never remembered feeling reluctant to return. 7, 1, 1 guess I was always eager to go back in with him. Um,1 didn't, 1don't recall ever thinking, "Oh, 1just can't go back in that mm."(#2) A third said, Wsuaüy they were always good thoughts (when 1 went into the LAF room) because 1wanted to be with my son." (#3) Ali the mothers accepted feeling confined and isolated in the smdroom because of the protection it offered their infants. Three mothers referred to focusing on the positive and accepting the demands of the space because there were no alternatives. Even the lack of skin-to-skin contact forced by the garb was accepted for the protection provided. Wendy stated, "hra while you get used ta it. Yeah. You just don't feel. You have to. Really, um, you have no choice." Amy felt that amount of time she was able to hold her son compensated for the lack of skin-to-skin contact. Like other mothers, she attempted to look at the positive aspects of probction in an attempt to deal with the negative. Amy related it as follows:

(Not having any skin-to-skin contact) was, it was hard but we had contact, you know. 1mean. 1 would hold him against the gown. (made a holding gesture) And 1 had gloves on but I could touch him. It wasn't skin-to-skin ...But, I mean, 1guess it's as 1said before. We knew what we could and couldn't do and so, um, we just made the best of it. And, 1 mean, I probably held and touched him far more than I would have. It just wasn't bare skin to bare skin but he had a lot more touch than he would have had. Um, because we were with him and we were holding him, cuddling him and, you know, sitting on our knee or whatever. So he was probably feeling human touch more ohn. It just wasn't bare skin.

She went on to describe her acceptance of other restrictions in the room and how she put other things she wasn't able to do out of her mind as follows: 68 1guess I just thinlc that I knew what 1 had to do and knew what 1was dealing with and nothhg was going to change it so just, just,just do it and not, and not get kind of hung up on the things that you might like to do. (#2)

Similarly, another mother stated that she was amenable to king 'stuck" in the room because it gave her infant his only chance of suvival. That's what kept me going. Being stuck in one room. Cause 1 knew that we had to stay there for him to get help and go home. So that's the only thiag that kept me going in those rooms." (#3) Esca~eInterludes Although accepting and even welcoming some limitations, the mothers often referred to escaping confinement and isolation in their %reaksn,by contacting supportive people and through wishful thinking and fantasies. Breaks during the day gave the mothers actual escape from the LAF room. They used the time to meet some of their own physical needs, attend to chores and gain support from other parents. One mother referred to the breaks she experienced in the room from the 'claustrophobic" mask when her son pulled it off her face. (#3) Although the mothers were ambivalent about leaving their infmts for the night, four were relieved to escape the rmm if the infants were cornfortable and settled. 'There'd be days when 1just wanted to get out of that room ... Pd be so relieved that 1was out and that I was going home to bed ... kind of like a weight wodd be off me." (#2) Another expressed similar feelings of relief when she left the room, especially when she knew her husband would be spending the evening with her infant. She referred to LHnishing her day" as if it was a work day. (#5) In an attempt to escape or at least reduce their isolation and confinement, some mothers strived to maintain contact with important aspects of their previous lives or to the world outside. Looking out the exterior window allowed the mothen "to stay in touch* with the outside world. "It was just a bit of comection to what was going on. To the real world. Because 1didn't, 1 didn't really have any other connection to it." (#2) Four of the mothers stated that the exterior window was an important 69 connection to the outside for their infmts as well. Wendy poignantly described trying to show her daughter how the world was diff'erent than the small world of the LAF room Jane knew. The possibility that Jane might die oniy knowing the outside world by looking through the window was distressing and mai. Wendy expressed it as follow s:

Just that that's the only window you could see outside with her. Yeah. 1took her there to see outside. Let her know batthe world is not that small. 1 don't know if shell have that chance. Tou may not have the chance (crying)to see the big world ...You've got to be strong. Mummy got to be strong." (#5)

Two mothers remembered helping their sons escape the social isolation of the room by holding them up to the exterior window so that they could see and 'play back and forth*(#3) with an infant in another mm. The window blurred the physical boundaries of the LAF mmby offering a way to minimally connect the infants to the social world outside. The infant's social contact with another child helped the mothen feel that a "normal" environment could be provided. Tracy went on to recall how her son disliked being enclosed in the room and how he enjoyed the Mew from the window. "He didn't hke the confinement. Um, the ody time Mac was happy was when he was by the window looking outside. He just wanted to go outside." (#3) Debbie escaped the isolation of the LAF room and kept in contact with the social world of the unit through the window to the hall. The two mothers who had le& their families at their rural homes, used the telephone to connect to a few significant people in their lives and alleviate their own isolation. One received phone calls from her husband and other members of her family on a daily or weekly basis. This contact was an important part of her ability to cope with being away. The phone served to connect the family over a great distance and prolonged separation. She said, ''1 couldn't do it without family (tears in eyesl" (#1) Another mother used the phone to contact distant family but also to talk to another parent in the hospital. This mother felt that she was providing her son with Company inside the LAF room while escaping isolation. Weused to phone each other from room to room. Me and one of the other Mums in particular..hd we'd talk on the phone three or four times a day." (#3) One mother's routine included watching the news on television twice each day. She stated that this was one of her few connections to the 'real" world in the following reference, That was how 1kept, kind of, up on what was happening in the real world. (laughter)" (#2) Three other mothers reported that they lost contact or avoided news about the worid outside unless it related to the fundraising that was done tn support the cost of king hospitalized or, in Wendy's case, of finding a bone marrow donor. '1 donTtknow news at all unless 1was in the news and then, you know, try to tape it. That's the time 1 watch the news." (#5) Their interest in the outside world was limited to it's connedion to the LAF room and hence illustrated the restricted context of their lives. Another mother commented that the news of the outside world held no interest for her because it added to the despair of her own circumstances. When she watched TV she wanted to escape from tragedy. News was %O depressing". (#3) This mother controlled what she watched on TV to assist her in escaping from her own situation. AU the mothers described fantasies or wishful thinking in which they escaped the room to a time prior to the admission or to another place. Debbie dreamed of escaping the restrictions of the surgical garb to reconnect with her son, '1 wanted to touch his skin the whole time. That was my one dream." (#1) Other mothers used the view from the exterior window to fantasize escapes across the LAF room boundaries to another time or place. Claire recalled wishing she was able to push her baby in a stroller as she saw other women do. (#4) Amy described enviously watching people walking outside and wished she could be in a theprior to when her mind was preoccupied with her son's illness and hospitalization. (#2) Several times during the interviews,Tracy recounted fmtasies of escaping through the window. She used the 71 view to the outside to make the mmnonexistent. She asserted that she and her son used the window as a way to mentally bscape" the room in fantasy to a "normalw time and place in order to forget where she was:

On some nice days, ...al1 I wanted to do was just jump out that window with him and just run and just never corne back. ..look outside and then everything behind you, none of it was there, and al1 the world was looking out the window at the world below. It was an escape. (#3)

1 sat there al1 the time thinking, Why can't 1be outside with him, if 1go to some remote area? Just let me take hirn out of the room. It would perk hirn up and 1'11 bring hirn back" It broke my heart that we had to stick hirn in that room. But at the same time, you had to do it. (#3)

Only one mother commented that a nurse would sometimes enable her to escape from the room by staying with the infant. (#3) Another mother commented that parents of children with SCID need ubreaks"because the hospitalization is so prolonged. She suggested that reliable staffor volunteers be more available to allow this. When the Child Life Specialist cared for her daughter, Wendy said of her escape from the nom,Tou feel üke you're fhe. You got her cared for. You just don't have to worry." (#5) When asked for suggestions to make staying in the LAF room easier for parents, the mothers' imrnediate response was to leave the room as it was in order to optimize the infants' protection. Upon reflection the mothers did make some small suggestions that would reduce the mothers' sense of confinement and isolation. One mother noted that a larger room would make it less frustrating for the infants and mothers as the children grew and developed. (#1) Another mother questioned the necessity of the mask and suggested that the feasibility of a see-through mask be researched. The suggestion was made more for the well-behg of the infmt than for 72 the parent. She felt that seeing masks on all others was detrimental to children's speech development:

It's hard for the children (to have their parents covered with a mask). It's bad for speech. Bad for feeding. Because they dont see a mouth. You know, that's what al1 the other kids, the SClD kids, they don't talk They dont talk. (#5)

Finally, a mother reiterated the staffs idea of a separate apartment where the parent and the infant with SCID could stay while waiting for a bone marrow donor and again while waiting for the blood counts t~ increase aRer transplant. She thought this would benefit the mother and the child by enabling a more "normalwspace and routine. She made her suggestion as follows:

Weli, they've talked about getting an apartment near the hospital that would be bigger than the LAF rmm. I think that's a great idea... When you consider the time you have to spend in that room. Put them in the apartments and they would still have some order and nomalcy in life... Then you're not stuck in the hospital for a year at least. (#3)

Many attributes of the LA.room were disagreeable for the mothers. Because of it's physical separation from the unit, from the hospitai and from the outside world, the LAF room was isolating and confming. Maintaining contact with supportive relationships offered limited escape from isolation for some mothers. The exterior window was an important feature of the room, dowing four of the mothers a link to the physical and social world outside. Some used it as a way to mentally escape from the restrictive confines of the LAF room. Each of the mothers, however, accepted the limitations of the room in order be with their infants in the Lproper place". The nature of the LAF room influenced how the mothers experienced relationships within it and in the spaces relative to it including the BMT unit, the hospital, home and the parent residence or hotel. The results indicate that mothers' relationships with their infants were central to their experiences and will be reported first. Relationships with siblings of the ill infmt, partners, other parents and hospital staffwill follow. Relationshi~With The Infant - Consuming Closeness The most important relationship for the mothers while in the LAF mmwas with their il1 infants. It compensated for the constraints imposed upon their own iives. The mothers perceived their infants with SCID very positivelyo Adjectives used to describe them included: good, sociable, companionable, undemanding, happy, interesteci, incredible, easy going, content, strong, healthy, smart, funny, wise, accepting, outgoing, amazing, wonderful, great and brave. One mother called her iafant 'a tease" and another 'a survivor". The stories about the infants that illustrated these characteristics were told with pride. Only two mothers briefly referred to their inf'ts as occasionally cranky. At these times the infants' moods seemed to exacerbate the unpleasant character of the room. Those were the days you just didn't want to be there." (#4) One infant's "moodinesswwas quickly excused by the mother who blamed medication for his behaviour. (#3) AU mothers felt the positive temperaments of their chüdren made their own experience much easier. In one quote, a mother described how lucky she was that her son was companionable, content and happy. She claimecl that his personality made her experience in the LAF room easier:

He was not demanding or, or, um,you know, he wasn't crying. He was just always kind of up and interested and always had a smile on. And, you know, that made it, that made it, he made it a lot easier for us because of his personality and how weii he coped with everything. 1 mean, if he had been 74 falling apart and been a really whiny and uncornfortable and unhappy child it would have been much more draining and much more dificult. But he was just so, um, easy to get dong with and, and easy going about, about everything and so generally content that he made you want to be with him. (#2)

A second mother reported that her son's bravery and acceptanee of the medicd procedures made the experience easier. "It helped tremendously." (#4) One mother admitted that her own need to be with her son was greater than her son's need to be with her. Y wanted to be with him. I needed tn be there. (tears in eyes)" (#l) This mother irnplied that she was only comfortable when she was in the LM' room with her son. When a family member suggested that she return to her distant home for a rest she couldn't imagine what she would do if she were not with her son. Even when her family came to visit her, she could not spend a day away h.om the room. As she described in the following passage, the LAI? room was the only place she wanted to be:

My sister-in-law and a friend came end of (a month), 1 guess, just before transplant. And they wanted me to go shopping one day for the whole day. Anyway, 1 did go get my hair cut in the morning but by noon 1was at the hospital. Mum goes, What are you doing?" 1said, "Mm,Pm not comfortable anywhere but here. Leave me alone. 1 have to be here. Leave me alone." (#1)

Although all mothers reported close relationships with their infants, the bond was not perceived as any stronger because of the time they spent with the infants in the LAF room. Instead, three of the mothers recalled that the relationships with their infants had ken close since birth. One mother felt that her bond was no more intense than it would have been if her son had not become il1 %cause all mothers tend ta bond strongly in any situation." (#4) Another indication of the close mother-infant relationship was an interdependence of the mothers' and infmts' mds. The mothers' perceptions of their day was directiy related to the mood of the chüd as the next quotations illustrate. The children's happiness and activity were interpreted as signs of recovery and the mothers' experiences in the room were less boring and more positive. 'Tfshe was doing well, just make my day." (#5) Whenever he was happy, 1was happy." (#3) We was happy and 1 was happy." (a)On the other hand, ifthe child was miserable, the mother woniecl about the prognosis and did not eqjoy her day. "He'd get hstrated and that would hstrate me." (#1) Two mothers referred to themselves and their infants when recounting any aspect of their story by using the pronoun %em. In other words, they did not separate their own experience fkom that of their infants. Both of these mothers recounted their own perceptions with some hesitation and codusion as if this was something they had not considered before. They also seemed least able ta perceive the room as distinct from their children and the childcare activities that took place there. On the whole, these two mothen were most positive about their experience in the LAF room. The descriptions of the room and it's rules as connnllig and isolating were largely missing from their stories. ARer prompting, one mother did vividly and articulately recall how restricted she felt in the stifling" room and surgical garb. ûtherwise, her coxnments about the deswere accepting and positive. (#2) The second mother had no recollection of the negative character of the room. She focused only on the protective qualities that the room afforded her son. Several aspects of her circumstances may contribute to this perception. First, after a nine month absence when she was finally returning home to her family with a healthy son two days aRer the interview. The positive aspects of the experience may have been highlighted in her mind due to the excitement of returning home. Secondly, only one inte~ewwas possible with this mother. Her perception of the room may have changed with time at home. Third, she had had a ver-strong wish for a child which had been hstrated by a failed fhst marriage and a miscarriage one year before her 76 son's birth. Finally, she was an older mother and her infant with SCID would most likely be her only child. This mother was the only one who commented on her initial concem at diagnosis that through her own actions she had somehow caused her son's illness. Four of the mothers reporteci a sense of obligation or responsibility to care for their infmts which allowed them "no choice" but to spend as much time as possible in the LAF room. It was their role as mothers which demanded this obligation. The mothers felt that their rightfid place was the LAF room. '1 think it was an obligation as a rnother to be with him." (#3) One mother felt that there was absolutely no question that she would care for her infant, dressed in surgical garb, every day that he was hospitalized because she was his mother. Teople ask how 1did it. You just do it because you're his Mum. There's no question about not doing it." (#2) The matemal obligation did not offer alternatives to being in the room. "I guess when you don't have any choice, you just do things." (H)Another said, "1 want ta be there because 1have to be there ...She is there, my baby is theie. 1have to... You can't sleep in in the moraing. You just have to go there. No matter, weekday, weekend."(#5) Although this mother stated that she wanted to be in the room, she described her obligation as more demanding and onerous than a paid job. She was not excused from the LAF room for any reason and worked seven days a week Her obligation committed her to her child. Only one mother suggested any Iinimosity about her obligation to spend time in the room. When asked how she felt about haWlg to go into the room each day she replied, don't want to use the word 'resentment', but 1just didn't want to do it." (#4) Because of the mothen' close relationship with their infants, they constantly thought about them, the room and what was going on there. This place attachent to the room rneant that the mothers never really escaped, even though they might not have been physicdy present. Amy describeci how she became preoccupied with the hospital. Even though she retuaed to her home and older children each evening, she was unable to relax or enjoy them. She felt as though she was always "inwthe LAF mmin mind ifnot in body.

Even when 1 leR the room and was out, outside 1was always wonied about when 1was going to go back iato the room, or what was happening with him or when 1 went home to go to sleep or have dinner or whatever, or be with my other children. I wasn't as if when 1wasn't there, you know, 1 could just relax and not think about it (#2)

One mother could not relax or talk about anything but her child when she went out to lunch with another parent. (#1) Another calleci the hospital to check on her son's well- king every night, no matter what time it was. (#a) A third recalled her attempt to remto her paid employment only to find that she could not work effectively because her iil infant was constantly on her mind. (#5) Two mothers described their intuitive feelings that their infants might be frightened aione at night. (#2 & #3) Another mother reported a ceaseless preoccupation with the room. @Itwas always the first and only thing on your mind. When 1wasn't at the hospital, I wanted to be at the hospital or 1felt 1should be at the hospitai." (#2) The most important relationship to the mothers was with the ill infant. Their closeness was demonstrated by their perception that their infmt had an exernplary personality or temperament. The mothers did not attribute their close relationships with the infants to the experience in the LAF room but as a materna1 bond that had existed since birth. The mothers' relationships with the infants committed them to staying in the LAF room as did their matemal obligations. The relationships attached the mothers to the room so that they could not release their mind from thinking about it even when they were not physically present. An interesting serendipitous hding of the research involved the nature of the fathen' relationships with zhe infants. Three fathers who spent time in the LAF room were reported to or admitted to developing closer relationships with their 78 infants. Don, who was present during the interviews, felt that the relationship he had with his son was closer than it otherwise would have been because of the time he spent in the LAF' room. Uniike the mothers who felt that their bond with the infiant had been present since birth, the fathers developed closer relationships because of the experience with their infants in the LA.mm. Relationshi~swith Other Older Children - Tom Between Places The routines of the two mothers who had older cbildren at the time of their infants' hospitalizations demonstrated the mothers' need to juggle their responsibilities to hoth their healthy and ili children and between the LAF' rmm and the place of family Me. Amy gave a detailed description of how she carefùlly planned her routine in an attempt în divide her tirne between her older children and her hospitaüzed son so that her time away hmher older chiidren would cause as little trauma and disruption to their Lives as possible. This was important to her but contributed to her experience of stress. Wendy stayed in the LAF room al1 day and with her toddler in the evening at the parent residence. When her husband was away this routine had little flexibility because of a lack of babysittuig for the toddler. The mothers' relationships with their older children were strained by the mothers' absence and by their psychological attachment to the LAF room and preoccupation with the ill infant. Wendy felt she had failed her older child because she was unable to give her the amount of attention and theshe thought was needed. She described her resulting sense of guikt With (the older daughter) 1 wasn't reaily, 1 was with (rny older daughter) but my mind was not with her. And so she had hard the." Amy admitted that at the theshe felt that her chüdren were coping well with the relative absence of their parents. It was not until she looked at the situation retrospectively from her children's point of view that she realized that her five year old son particularly felt Ydeserted". Amy attributed her older children's reactions to her own single-minded absorption with her ill son in the following citation: 79 (The older son's) recollection is that we were just not (at home) for one whole ye ar... When you're in the middle of this you, your focus is almost entirely on one thing. Not entirely because, 1mean, 1certainly was concerned about them, but you tend to get so, um,completely overwhehed by (the ill child' circumstances) that the other takes a back seat fo it. (#2)

Amyk seven year old daughter was very sensitive to the seriousness of the illness and her parents' concerns. Amy stateà that ber daughter, "the gatekeeper of the house*, was vigilant about her il1 brother's status and, therefore, of her parents' weil- being. Her daughter haniedmher concerns with her suggesting that she, iike Amy, was wonied and preoccupied with the situation. Amy was also aware of the impact of her own father's terminal illnefis on her cbildren and how that added to their difficulties at the time. When she spoke of her father's illness her first thought was how it affecteci her older children. She later added that it was difficult for herself as well. (#2) Both mothers were conœrned for the well-being of their older children but their abilities to meet the children's needs were limited by the mother's felt obligation to the iil infant. Wendy expressed her attempt to care for her two chüdren; "But 1 try to give (myolder daughter) my time, 1tried to manage two of them. You how(older daughter) needs mother too." (#5) Amy spent as much time with her older son as possible while still fulnlling her obligation to be in the LAF room. (#2) The physieal boundaries of the LAF room were rigid, clear and impenetrable, separating the worlds of the infants and their siblings and, in so doing, fiagmenting the mother's sense of place. When her husband was traveling in search of a bone marrow donor, Wendy desmibed feeling tom between the LAF room and the world outside as the following quote vividly demonstnttes. Childcare for sibiings was unavailable at the hospital on weekends. Wendy felt that she needed to be in two separate places at the same time. "(I'd go) just between (the two daughters). Take the (toddler) to the hospital. Put her in the parent's lounge. I go with Jane, feed her, 80 corne out. And then go back in." Amy felt that being in the LAF mmwas like king in wur own little worldnexcludmg her older children who "were not on the inside of this...this was so separate to anything that they were involved in." The statement vividy portrays an image of her chüdren standing outside the hospital while she, her huaband and their il1 infant were enclosed in the LAF room. Physically and mentally they were in places far apart. Amy poignantly recalled a story that vividly illustrated the separation of her children's worlds. Even now, four years later, she gets tears in her eyes when she drives down the street where the hospital is located. She looks up at the window of the LAF room and remembers king at a parade with her two oldest children and waving to her husband and their ill infant who were at the LAF room window. She still cries at this memory because she realizes how difficult the situation was for her children. The extemal window of the LAI? room was a very important symbol in this story. It tenuously connected the family. However, at the same tirne, it acted as a physical barrier which separated them. When asked what changes would have made her experience easier, al1 of Amy's suggestions related to ways to make the duration of hospitalization less difficult for her older children. She wanted to find a way to make them feel more "connected"to their il1 brother and the LAF room but found it difficult to make concrete suggestions. Relationshios with Partners - So Close and Yet So Far Away AU mothers spoke of a relationship with their husbands or infants father which was close in one respect while, at the same tirne, being distant in another. Although these relationships were generally characterized as important and supportive, they were not referred to often. Two of the mothers stated that they felt psychologically close to their husbands during the hospitalization because of the problems and responsibilities they shared. When asked about her experience in the LAF mom, Amy indicated the importance of her relationship with her husband during their infant's hospitalization by using the pronoun %en ta include her husband in her stories. Wendy appreciated the time and effort her husband gave to their two daughters during the 81 hospitalization. Yet both mothers were distancd by the lack of time they had to spend with their husbands. Wendy intimated that she and her husband had Merences that needed assistance ta be resolved because they had not had time to communicate. Debbie felt lucw to be with her partner. She felt that the prolonged separation of enormous distance was a threat to her relationship and appreciated the fact that her partner did not leave her as she had heard many husbands did in similar situations:

I wonied about that the first two or three months we were hem. Like, Pd ask Steve, Wou ok? You're not going to leave me are you?"(laughter)Finally, he was at the point, Will you stop worrying about that. You've got enough to worry about." And 1, puhow, but 1did. I worried. Oh, I couldn't imagine going home not to Steve.

However, she also noticed that the knowledge she had gieaned from her experience in the hospital excluded him and distanced them psychologically. She couldn't talk to him about Matthew's progress, the part of her life which she was deeply committed to and preoccupieâ with because he didn't understand. She felt more cornfortable talking about her day to another parent who had shared the experience. Claire describecl the arrangement she and her husband had in an attempt to avoid codict around decisions regarding their son's care. If the couple disagreed about his course of treatment they would discuss it in private and negotiate a solution. They agreed to do this as soon as their son was diagnosed. Although they consistently used this procedure, they admitted to 'lots of disagreementsw. Even the single mother stateà that she and her son's father worked together to arrange his presence with his son in the LAF mmwhen she returned home to work on weekends. However, as time went on the relationship deteriorated until the mother requested that his visits stop. Relatimshi~sWith Other Pmnts - A Short Journev in the Same Boat The three mothers who lived in the family residence developed reciprocally supportive relationships with other parents. One mother described the support she received from parents at the residence as essential to her own strength and ability to cope with the stress of her infmt's hospitalization. 'Support from parents. That's what was great about the parent residence." (#5) Other parents' advice gleaned fkom their own experiences helped the mother Learn about the unfrimiliar hospital culture. For the only mother in the study sample who did not have the Company of at least one family member, the parents in the residence were able to provide the support she was largely rnissing from her own distant family. "The parent residence, it was like another family... If1 didn't have support fkom friends 1would probably have gone nuts." (#3) These three mothers felt worthwhile and needed when they were able to provide emotional support and pass on the knowledge acquired fkom their own experiences to other parents who were in similar circumstances. One mother said, 'It feels good (to pass un knowledge). 1 love talking to them ... Thefre going through now what 1 did." (#l)Although these relationships were described as important and based on shared experiences, they were also brief. Tracy described a cycle of developing and terminating fiiendships. She would becorne 'close" fiends with a parent over several weeks or months. The parent would then suddenly leave due to her child's hospital discharge or death. Tracy wodd then have to make f'riends with a different parent. Because of this transience, parents of the children who were hospitalized over a long petid 'shick together and became close and became a little group". (#3) For the two mothers who did not live at the parent residence, relationships with other parents were less prominent in their stories. Both described themselves as Lprivate people". The isolation of the LAF mmmeant that these mothers did not have an opportunity to meet other parents. As well, the other parents on the mit were, for the most part, parents of children with cancer. They stayed at the hospital for days or weeks ody and did not share a similar experience. However, those relatiomhips that were featured by these mothen were important. Claire found that the weekly parent group on the unit was a helpfùl environment to formally share concerns and gain support. (#4) Amy described having coffee with a couple and their son who had SCïD and had been successfully treated. The mother of this child subsequently sent her a letter which Amy had saved in a photo album. Although extremely brief, the relationship provided Amy with support and hope and made a lasting impression. uGood to see them. 1just thought, Wow, they've gotten, they've, thefve done it. They've gone through and they had a really hard time.' And there he was sitting there and it was, it gave me a lot of hop." (#2) Another mother suggedthat in the future, each parent of a newly diagnosed child with SCID should be partnered with a parent who's child had been successfully treateà for the support and hope such a relationship could offer. (#4) Two mothers were certain that they would remain "closewto another mother because of the experience they had shared. mersdescribed minimal contact post- discharge, indicative of the brief relationships. Mothers compareci their experience to that of other parents ta put their own circumstances in a more positive Iight. By recognizing that their experiences were shared by others, the mothers felt supporteci and lucky. One mother remembered that she was hotthe only one that something like this had happened W. (#4) Similarly, a second mother said, Tou are not the only one with bad luck." (#5) Another mother was horrifiecl by the family tragedies she witnessed in the hospital. Only as an aRerthought did she reaiize that her circumstances were similar. (#2) One mother compared the prolongecl length of her infant's stay in hospital with the other children's stay on the unit several times. Tor them their stay shorter tirne. They come and go, come and go. But like us, we stay there forever." However, her continued comparison with the same children made her realize that they would come back to the hospital repeatedly while her daughter would leave and be cured. (#5) Three mothers described death of other patients as a disturbing aspect of the 84 BMT unit and their expience. These mothers felt a keen empathy for the parents of the dead children. Claire and her husband felt that they were living in a Slack Hole" because of numerous deaths they witnessed while on the unit. They attended the funeral of several children to demonstrate sympathy for the parents. Each mother found the death of another child %cary" and shocking as if they were %lapped across the face. (#3) Death brought the uncertainty of their own infmts' prognoses to the forefront. WOWyour drywould turn out. No one Imen." (#4) "Jme might be the next one." (#5) Death 'renewed" one mother's &gemparanoia" and made her gratefid that her son was in the protection offered by the LA.mm. She could still hope for recovery. (#4) As two of the mothers expienceci more instances of death, the intensity of their reaction subsided or changed. One mother said, "(Death) became part of the place." (#5) Another was confused because she no longer cried:

I couldn't cry. I went through al1 the emotions, like the shaking and everythmg else but no tears came cause 1,I couldn't. And 1thought, like 1thought I was. There was something wrong with me that 1 couldn't but then 1guess you just get so used to it happening that you leamed to cope with it in better ways. So, no it scared me but. (#3)

Although only three of the mothers developed hiendships with parents of other patients, each felt supported by the relationships they did have. Some mothers also benefited by the support they too, were able to offer. The mothers positively compared their own experiences to the situations of other parents and, therefore, enhanced their ability to accept and manage their circumstances. Relationsbi~With HOSD~~Staff- Insiders and Outsiders Insiders Hospital staff were either highly regardeci or were denigrated by the mothers. Most staff were perceived as supplementing the LAF room protection by providing highquality care to the infmt whiie including the mothers as part of the infants health care team and treating them with compassion. 1 have cailed these staff %sidersw because they were appreciated by the mothers as important social features of the LA.room space. The doctors, particularly the staff doctor, were highly spoken of by four of the mothers. The mothers appreciated the doctor's carefùi treatment and strict adherence to reverse isolation des. "He was very, very cautious." (#1) The high standard of health that the doctor demanded before he considered an infant weil enough to discharge made the mothers feel confident Two mothers appreciated the compassion and responsiveness that various phpicians showed them when they were angry or afkaid for theV infants' health. A doctor noted one mother's silent anger and invited her to discuss it with him. She reported that she lashed km." She was impresaed and gratefid that uhe stood there and took it" and then calmly answered all her questions. On another occasion the same mother was touched by a doctor's great compassion for her anguish during a crisis in her son's health:

1 was just sitting there, rocking away for dl 1was worth. And (a doctor)just put a hand on my knee and went out. She didn't Say anythuig to me. She just let me cry and gave a srnile to Matthew. (#1)

Four years aRer her infant's discharge from hospital, another mother expressed an affixtionate regard for the doctors and the Immunology Coordinator. For this mother, who did not develop any relationships with parents of other patients, relationships with the medical team were close and supportive, rike family...I feel so close ta them." (#2) Each mother expressed gratitude for the %est" medical care they had been rucl$ enough to receive. AU mothers found that the mqjority of nurses provided bxcellentwcare. Nurses' characteristics that were perceived as positive and appreciated by the 86 mothers were ofken listed. Most important were those characteristics based on the how the nurses cared for the infants. How the nurses met the mothers' needs was appreciateà but only secondarily. In the two following quotations, mothers summarize the qualities of the nurses they admired. These nurses were supportive, knowledgeable, pmfessional, caring and nurturing with the infants, trustworthy, organized, efficient, kind and responsive. They took time with the mothers and the infanta and did more than their job required:

Firstly, 1mean, 1had a great respect for them and their knowledge of the job and then, of course, they had, um, they were very, they were good with Rob and they àid more than their job. They didn't just do the meds and what had to be done and, and, and, you know ,do the checklist. They were redyvery giving and they were very loving wi th him. And then, um,and also just supportive of us as well. And you know, if we were leaving and 1would be assured that if Rob woke up early from his nap or wasn't cornfortable and I wasn't there, that they would go into the rmm and, and not just do what had to be done but spend the extra time hanging out with him. And, um, so on al1 three accounts, you know, it was, it was really nice. (#2)

A lot of them were really, really good...just hawig his medication on tirne or being on a good mutine. They were very organized. That, that really impressed me most ...That showed me that they were efficient people and everything. Um, some of them were just really, redy kind. You know, you knew that ifyou were having a bad day you could just Say, Tm having a bad day. Can 1 talk about it. And they'd just ait there. They would listen. Um,mostly they dl, they had really, really good traits. Lüre something that you'd look for in a friend but not only as a nurse but as a fiiend. (#3)

Another mother agreed that she appreciated the nurses who 'conducted themselves professionally" and others who were ucompassionate". She and ber husband respected one nurse for her extensive knowledge and ability ta handle a crisis. However, this nurse was quite "cold". Another nurse was "very sympathetic but new and green." (#4) Interestingly, only two nurses were given as examples of what a "good nursenwas but neither nurse had ail the qualities the couple considered important. Two mothers commented that some nurses were supportive during codicts with other stafK One mother who advocated for her son against the directions of the dietitian appreciated the support of the nurses, Thenurses were wonderful... They stood behind me. Yep." (#l)&r a conflict with the staffdoctor, another mother commented on the empathic support she received from the nurses who had been with her at the time. (#3) ûther staffwere appreciated for the time and entertainment they offered the infmts. The Child WeSpecialist was higblighted by two mothers both of whom were grakfid for the time she gave the infants. The janitorial staff were appreciated by two mothers for the entertainment and kind attention they provideci the infants in the isolated and sensory-barren LAF room. Outsiders In contrast, some staff were denigrated by the mothers. If the statYs care neglected to augment the protection of the LAF room or if the staff did not appreciate the mothers as part of the infants' protective space, relationships were negative and often unpleasant and codiictual. 1 have called these staff uoutsiders" because, to some degree, they were not welcome within the LAF' mmspace. Although fewer staff were included in this category as compared to ïnsiders", stories were long and emotional, evoking team and anger. Obviously, the incidenta had caused much distress and were the predominant impressions of care. One mother spent a lot of time during her interviews describing the negative relationship she had with the staffdoctor. Unlike the other mothers who appreciated the doctor's carefid adherence to the reverse isolation des, this was a source of 88 frustration for this mother. She seemed to perceive the doctor as using his power to rigidly dictate the niles. Although the mother attempted to rationalize why certain deswere unnecessary in her son's situation, the doctor would not listen to her argument. The mother perceived the doctor's lack of consideration and respect for her opinion a personal insult. She found this very diflficult ta tolerate. The mother seemed to be attempting to control aspects of the room that were contrary to the rules the doetor had ordered. The doctor would not permit this challenge to his authority. A power stniggle or Vighting" ensued which the doctor won and the mother resented. (#3) In a second situation the mother attempted to offer an explanation as to why her son was not responding to treatment as aaticipated. According to the mother, the doctor would not listen to her rationale and continued to treat him inappmpriately in an attempt to Save the BMT which he had concluded was king rejected. The conflict escalated to 'screaming and yelling". Finally, a liver biopsy confirmed her opinion. The following quote illustrates the mother's antipathy toward the doetor:

I didn't like him because he didn't give me the respect that 1 wanted. He didn't treat me the way that 1 wanted to be treated. So, um,he blew me. He made me very mad al1 the time. Cause 1don't know how many times that man made me cry because of the things that he said to me. (#3)

This mother's experience with the staff doctor was very different from that of the other mothers. The length at which she recounted her codict indicates how upsetting the relationship was to her. The other mothers, although highly praising of the medical team, did not spend a lot of time recounting their experiences with them. Although relationships with the majority of the nurses on the unit were positive and appreciated, three of the mothers spent more time refening to instances when they had not been satisfied with the nursing care their infants received. All of the cornplaints related ta nushg care the infants received and not to how the mothers themselves were treated. If care was perceived to be inadequate in some way, the mothers' impressions of the incident were strong, emotional and lasting. One mother told a long, emotional story of a situation which greatly influenced her overall experience in the hospital. She needed to leave the room late each afbrnoon to pick her eldest daughter up hmdaycare. When her husband was traveling, it meant that her infant was lefk alone in the LAF room and dependent on the nurses to provide her with adequate care. The following quotation tells this mother's disturbing story

At 4:30,1 le& and 1told the nurse, 1 Say, 'Pm not going to come back Please, just feed her, change her." That's what she need. She, she doesn't have heavy drugs. Just feed her, change her. Her bum was really broken. The diaper rash was very bad The doetor was, causes, you know, for the infection, the source of the infection. And dso she was, she lost weight, she, she just was losing weight. The feeding really was a big pmblem. And that day, my other daughter, she wants to come back and 1 came back at 9:00,9 p.m. and 1 found her since 3:30,1 fed her 100 cc. Until9, wbody, you know, went into her room. 1 was so mad. 1was so. Nobody change her, feed her and her stool, you know, she had diarrhea up to the neck All, you know, the whole back, the whole blanket ...Zfyo u dont change and feed her, you might, you will kill her. (#5)

As a result of the incident, the mother did not trust the nurses to adequately take care of her Mant and gave up her plan to return to part-time work. Her lack of confidence in nursing care and the unavailability of childcare in the hospital forced her to leave her toddler unattended in the parent lounge for long periods while she took care of Jane. She felt blamed by the nurses for dohg this. She found the nurses were without empathy to her situation and responsibilities outside the rwm. In addition, at several points during the inte~ewsthis mother intimated that she felt the nurses poorly judged her mothering skills because of time she spent on the phone whiie in the 90 rmm, time she spent out of the mmattending to other responsibilities or time she leR her toddler unattended in the parent lounge. She felt misunderstood and harshly judged. "(Nurses) don't understand me. Make even worse. 1 said, Whyyou don't understand me? What's the matter?" You know, no sleep, no food, no husband, note. And they fight with me." (raised voice, crying) (#5) The nurses suggested that she see a psychiatrist. She interpreted the suggestion to mean that she was at fault and even 'crazy". ARer recounting the incident and the nurses' responses, Wendy questioned the adequacy of her own mothering, "I tried to be a perfect mother, a good mother but 1don't really think 1did." The relationships with the nurses were so unsatisfactory and contentious that the mother felt much more limited and frustrated by them than by the physical character of the LA.room itself. Each of the mothers spoke of unpleasant incidents with one or two nurses which required reporüng and hence was a part of the mothers' guarding role. Debbie told a story that illustrateci a nurse's insensitivity. The nurse had not spent any time with her infant. Debbie overheard the nurse saying, "Oh,it's great having Matthew. He's not sick You don't have to go near. Mum's in there doing her thing." and requested that her son never have the nurse again. Debbie felt the nurse was insensitive to her situation* '1 dont care if he's not sick. That's why we're here. So he won't get sick" VI) Later Debbie appreciated the same nurse's knowledge and skill. However, though she could see the nurse's positive quaiities, the original situation stiU irked her. The mothers voiced several other complaints about the nursing care their infants received. Lack of continuity of care was noted by one mother who complained that over the pend of hospitalization her inf'mt had more than 30 nurses. Some nurses knew nothmg about her infant's care when they came into the LAF mm. (#5) Nurses spent little time in the mm.While some mothers did not mind this as long as their infants received efficient monitoring, one felt that the nurses were unable to adequately complete their tasks. (#5) Another mother was disturbed by the nurses lack of organization and efficiency because her infiant would receive his care late. (#3) Two mothers' lack of confidence in some of the nurses meant that they felt uncornfortable being absent hmthe room if the infants were in their care. (#2 & #5) Another mother felt uneasy about leaving her infant at night because she did not trust the nurses to cdher if there was any change in his status. (#4) Aithough four of the mothers had one or two incidents where they were disturbed by the nursing care, these incidents made a lasting impression. Certainly one mother's interaction with the nurses coloured her entire experience. Wendy felt much more supported by the relationships she made through fundraising outside the hospital than from the nurses on the unit. Her distressing experience was reveded by the following statement, "I didn't make fkiends with the nurses. No even, I spend, you know, ten months them. That's the child's life. It's really, oh it's not right. Oh, never. The nurse, they are good, 90% of them are good but it's just not right." W5) CHAPTER 6 Enduring DifRcult Times AU mothers referred to difficult times when stress was particularly exacerbated (see Figure 2). Periods of 'waiting" and those around chemotherapy and bone marrow transplant were identified as crises for different reasons. The mothers impatiently waited for important aspecia of treatment to occur. Whereas, during chemotherapy and after receiving BMTs the infants were criticaiiy ill. The Euness Traiectury The majority of the mothers' time in the LAF room was spent 'waiting", whether it was waiting for a donor, waiting for bldce11 counts to go up aRer transplant or waiting to be dischargecl hmhospital. Although the mothers daily routines and activities were maintained, uwaiting"was identified as uniquely stresshi. Three mothers talked about waiting for a donor to be found. The process of searching for a donor involved a series of steps which Amy described as a progression of smaller hurdles to reach the final goal of BMT. Breakhg the anticipated prolonged waiting period into stages made it easier to cope with. She described it in this way:

There always seemed to be something that we were looking ahead to and, and setting our sights on that wasn't just right amund the corner. So 1 guess in some ways it seemed like forever but in other ways it, it broke the time up so that 1guess if we had in (name of month) thought we weren't going to have the transplant (for 6 rnonths) we wouldn't have been able to bare it, you know, just thinking of d that the. But in the length of the time that went by there were always some little goal or something to get use to which in some ways was really hard because you'd reach one and then there'd be another one out. But I guess it broke the time up and it just wasn't this huge long stretch. There was always something we were anxiously waiting to hear or, um,whatever that broke the time fiame up a little bit. (#2) 92 93 The steps did not always pmgress as expected. Two of the mothers describeci the hstration of the process when they believed it was moving forward but found that it had fallen back to a point where they were even further away from the final goal of BMT. As Amy recalled "It just seemed one step forwani and four steps back." Initidy, family members were testeci. Va blood match was not fowd, the international bone rnarrow registry was searched. One mother angrily lambasted a doctor when she discovered that the search for a donor had not progressed as she presumed:

I thought we were already looking for a donor (in the international registry). Then al1 of a sudden they corne and tell me they want to do the family's. So. And 1 blew, "What do you mean, the family's? 1thought the search was on. Why are we doing family's?" (#1)

This mother's anxiety made her feel physically ill. When she knew a donor had been found her physical symptoms abated. She lîkened the waiting to being in a black tunnel, moving but with no end in sight. When a donor was found there was a light at the end of the tunnel. The mother found hop and could sense a brighter future. Waiting was easier. 'Once we got a donor 1settled right down... There was a light coming at the end of the tunnel. We sat and waited." (#1) Wendy's experience of waiting to find a donor was full of uncertainty. If a donor was not found her infant would die. Waiting" was a race against tirne. The chances of hding a donor was reportedly 1 in 20,000. Wendy and her husband were encowaged to augment the search of the international registry by soliciting potential donors themselves:

Just the waiting for donor. You don't know what, you know, ahead of you. You have no idea if you find donor or not. If you do find a donor, you have some hop. It's 50:50 to Save her Me. If you don't, you just wait for, you know, the 94 tirne to go past. And you don't know how long. That really bothers me a lot. And you dont know how long she will, you know,üve in this world. You hoping, you have some hope ...What can you do? You can't just put her out of the hospitai. You just have to wait and hope that you find a donor (crying) (#5)

Another mother felt that her time wtiiting wodd have been less dousif she and her husband had been educated about the search process. At the time, they did not understand why it took so long. The resuitant confusion made the petid more tense. (#4) Added to the stress of waiting to find a donor was the character of the rmm. One mother implied that her powerlessness to speed the process of the search for a donor was accentuated by king confined. Wou're waiting. You don't know what's the answer and you're also in that tiny, small room You have to be very strong. You have to be with the sick one and also you have to keep your hope." (t5) Waiting for a donor was followed by the crisis of chemotherapy and the BMT. This was particularly stressful for the mothers because the infants were mtically ill. The BhlT marked the culmination of what they had spent months waiting for and what they anticipated as their infmts' cure if they survived the process itself. It was identified by the mothers as a mitical climax of treatment. One mother got a minister to bless the bone marrow prior to transplant. (#4) Another mother described the period as "the most critical tirne". The following quote iliustrates the intensity of her emotions during chemotherapy:

The time around the transplant was, was, um,really dificult because when he was sick and on the chemotherapy and trying to, and 1was trying to,you know ,give him these drugs and. It was, it was, that was really hard because it was just so intense. And 1mean, the, and 1 guess there was just so much anxîety building to keep this protocol up to the day of this transplant. (#2) 95 The mothers' sense of the passing of time and the relationsbips with their inf'ants were unique during chemotherapy. Although difficult and tiring, time was perceived as passing quickly. One mother recaHed it as moving more quickly than she had anticipated:

Well, the chemotherapy part of it, 1thought it would last forever. The ten or eleven days it is. 1thought it would be forever and ever. And it wasn't. The type of chemotherapy, it was like boom, boom, boom. And we were at transplant day already. It was like, where did that time go? (a)

This mother went on to attribute the fast passage of time to the constant visits from staff in contrast to the pend prior to chemotherapy when she was isolated and lonely. For these reasons, this mother found chemotherapy was 'easier" to deal with. Another mother agreed that the busy period when her infant was sick passed quickly, Tough time goes faster." (#5) Another said the'Ylew by" when her son was ill for three weeks afkr transplant. Although the mothers agreed that time passed quickly, they were consumed with worry and concern. Vust worrying took a lot of time." (#3) The infants were ill and lethargic after transplant. One mother atbibuted her tension aRer transplant to the unpredictability of her infant's health status as follows:

A lot of the time aRer transplant things were very tense cause you didn't know what was going to happen fkom day to day. Am I going to go in tomorrow morning and is he going to be reaily sick or is there going to be something wrong or are we going to have a good day? There was always a tense time. (#3)

When the infants were critically ill after transplant, holding and nurhuing became the mothers primary activity in the room. One mother recalîed her own need 96 to hold her infant beeause of his status. His Mering made the mother sderas can be seen in the following quote:

1had a hard time leaving him at night (&r transplant). But that was only because he was sick. 1needed to hold him. And that's all he wanted to be with. He didn't play, he wasn't smiling. 1really hated that the. He wasn't Matthew. He'd try. Seven o'clock at night, he'd try ta ,smile. You could tell he was just feeling awful and he'd try for about fifteen minutes. (#1)

She went on to describe her anguish and guilt when she leR hirn each night.

ARer the transplant he didn't want me to leave so Pd hhad him to a nurse every night. He'd be crying but they said once 1got my gear off and leR the antermm he'd go right to sleep. He just wanted to make Mummy feel guilty (tears in eyes)... Pd have to pull hirn off me, give him to the nurse. Every dght. You know,you'd think it would have got easier. But it didn't. (#1)

Another mother felt an obligation to stay with her critically iil infant aRer transplant. The mother was so concerned about her inf'mt's poor physical status that she found it dificuit to be away or to sleep. Finally, one mother expressed the relief of having her infant smile again after he had been so sick It is juxtaposed to her heartrending descriptions of her son when he was ill. The mother made the following comments while she was looking at photographs of her son during the interview:

This is during the transplant when he was really, um, just after the transplant when he was really sick. High doses of, um, steroids and he was just wrecked and staring. Oh, just, you know, like a non personaüty. And the, oh yeah, that was the day he smiled. That was late (name of month). Yeah the btreal 97 smile aRer transplant on the (speciflc date). But there was two, three weeks at least when he didn't smile. (#2)

Waiting aRer transplant for the first signs of their infants' recovery was difficult. One mother commented on how slowly the time passed aRer transplant while she was waiting for the elevated blood counts that would indicate that her son was accepting the donor and the transplant was successful. Waiting for medical signs of health continuecl until discharge.

And then from the day that we were transplanted to the day he got his first count, that went by extremely slow because we were sitting there waiting and waiting and waiting to get that .2 or .3 white count, you know ,he's accepting it. Um, that went a long the. Um, but fiom the time he got his first count and then up higher then it was waiting for hemoglobin and the platelets. And that, from that point on to the day we got dischargecl, it was kind of back and forth for me, either moving very quickly or moving very slowly. (#3)

In another quotation, the same mother described how time stopped, with consequential disorientation, while she waited for her son's blood count to rise and then for the doetor to discharge her son. One can sense that the time seemed endiess whilewaitjng:

Um, but then like aRer his counts started coming up, then I knew that his immune system was starting to work but those platelets weren't coming. That's when thesort ofjust stopped and stood stiil for a while. And algo at that tirne 1didn't hwwhat day it was anymore, what day of the week it was anymore. My time was all messed up. (#3) 98 Finaily the mothers waited for discharge. Three mothers mmmented on their frustration and impatience during this period. One mother also complained that the discharge of her son was delayed just before the anticipated date. Her husband became "aggressive" and the couple insisted on taking their child home instead of staying another week as the doctors were recommending. Eventually, they were allowed to go home as initially promised. For this couple the prospect of staying one more week afbr anticipa- discharge was unbarable (#4). Another mother described her feelings while waiting for discharge, %ast few weeks before she wes, you know, discharged. And she rasdoing quite well, just wait for the the. I was not, you know,worried much... That's hard. You didn't want to wait but you have to wait? The same mother commented that time passed slowly. The infant was well, the mother was not as busy with care, staffwere not visiting as ohnand the room did not offer much to play with. The isolation and confinement of the room had to be endured while waiting impatiently for discharge. Wou have nothing to do. She's doing well, just like slow. You're exhausted. Time go very slow." (#5) On the other hand, one mother stated that because she knew the transplant was successfbi and her infant was Msibly recovering the period before discharge was "a good time". (#2) The end was in sight and the hurdles had been crossed. CHAPTER 7 bentering the World After months of hospitalization, when the infants' blood counts had risen sufficiently that an infection was less lifethreatening, the treatment was considered successfùl. The protection of the LAF room was no longer thought to be necessary. The infmts were stmnger and becoming more active. The mothers anticipated imminent discharge but exact dates were dependent on their infants health which remainecl somewhat unpredictable. Similar to the period of diagnosis, discharge from the LAF room required adjustments at two levels. First, the mothers had to leave a place where they had felt the inf'were secure and protected. Second, they were returning to a place hmwhich they had been absent physically and psychologically for a par. The process of leaving the LAF room and retuning home was described as abrupt and emotionally tumdtuous. At the time of their inte~ews,each of the mothers were at different points with respect to their children's discharge. Debbie and Matthew were in the middle of the discharge process and would return home in two days. She was looking forward to going home but anticipated some difficulties as well. Wendy and Jane had been discharged for two weeks. ARer initial ambivalence, Wendy was glad to be at home but was very anxious about her daughter's health. Tracy and her son had been discharged for several months and had monthly appointments at the clinic. Claire and her son had been home for almost three pars and he was active and healthy. Finally, Amy and her son had been discharged four pars before the interview. Leaving: the LAF Room In describing what it was like for them b finally leave the LAF room and hospital and return home, the act of removing the surgical garb was identified by the mothers as an important first step. It seemed to make the prospect of leaving the room real. Although the mothers were made aware of the discharge date some days in advance, they were required to Wear the garb util the day of discharge. The 99 100 transition hmwearing the garb and spending hours in the mmto removing the garb and leaving the room took place abruptly over a few hours. Two of the mothers were distressed by the transition. They were nervous that the removal of the sterile garb would threaten the infant with infection. One mother stated that she felt "almost sW". She and her husband remembered giggling nervously as if they were doing something wrong. (#4) Debbie question4 whether it was really all right to go in the room dressed in Street clothes:

Like, al1 of a sudden they corne in and say, 'Ok Debbie. You know, when you go in don't put on any garb on. Just go in." 'Are you sure? Are you redysure?- Like 1 wanted ta still put on a gown cause 1felt, 1felt naked. So much time doing it and 1dont have to (chuckle)

The most disturbing aspect of the removal of the garb for two of the mothers was the infant's reaction. Suddedy the infants were able to touch a mother they codd see My. Two of the infants initially withdrew and another was Bhocked". (#2) Tracy referred to her 2 year old son's reaction in the following way.

Of course, when the day came when 1 codd take it al1 off, he wouldn't look at me. 1 think it was just such a big change... He hadn't felt Mummy's skin on his skin for over a year. And now he felt the skin on his skin and it was, and Mummy looks Like a normal person again. So, you know, he looked everywhere but at me.

According to Debbie, her year old son did not recognize her when she came in without the garb. He withdrew and would not touch her. Her poignant description follows:

When 1waked in that morning that 1came in with no mask, he just looked at me like, 'Oh, well you're Mummy. You sound like her but 1don't know." And 1 101 felt bad for him. 1really did. And I put my head dom. 1 wanted him to touch my hair and he just, he pded right back, pded right back from me. And 1 thought, oh, it broke my heart and all. Ooh.

Tracy described the sudden removal of the garb as explosive for the infant and the parent:

(The infants) have only seen their mother or their father totally garbed. Thefve never seen anything else exœpt theb eyes. So, boom, we have a totally clothed person here and al1 of a sudden and everything else. I don't think that's fair to the child. It's a shock 1 really, really don't ... For the parents it's actually a big shock tao. The parents are very, very emotional time being able to buch a child's &in.

Both mothers were upset by theh infants' reactions. They suggested that the removal of the garb should take place gradually over a week, allowing the child to slowly acclimatize to the mothers without a mask or gown. Leaving the room with the infant was the next step in the discharge process. As we looked at pictures she had taken, Amy was the only mother who referred to this moment. Her chilà's exit from the mmhad been anticipated and planned. One photograph of her two older chüdren reaching out to the infant's outstretched hand made us both cry. The children's fingertips were touching. Amy was squatting at their side weeping. Amy emotionally described the series of photographs that portrayed Rob leaving the LAF rcmm:

That's the first time 1walked in without a mask on. 1 think he was like, he was really shocked. And that's when we walked out (of the LAF room). 1 said, We's going to wak out of this room. We're not pushing him out. He's going to walk out." So he walked out and dom the hall to the nurse's station. And that's the 102 first time (the older children) saw him. Yeah, yeah. 1 was a total wreck.. .Pm just a wreck. He's discharged now and that's the fbst time they touched. Pm a mess, crying. Arid then that's my Dad and he was redysick. We went right away to see my Dad. And we got home, welcorne home SM.

Debbie and Tracy were both proud of their son's reactions to the world as they took them in a stroller ta the parent residence. Neither of the infmts were fkightened but enjoyed their final escape from the LAF mmand hospital:

He never cried...He hadn't been in the big, outside world for nine months. And 1 packed him in the stroller and mlled him down the street and he just looked and, well, there's so much to see. And he was fine. (#1)

Wendy's description of the discharge process included a myriad of feelings; ambivalence, relief, vulnerability and joy. Wendy was informed of her daughter's discharge when she was exhausteci and had tenible muscular back pain and headaches. The notification of impending discharge was Uiitiaily disturbing to her. The prospect presented an extra burden because it necessitated that she get her home cleaned and ready for the fdfs rehua. When she returned home her pain abated but the uncertainty of her daughter's health returned upon leaving the protection of the LAF room. '1 didn't want to come back It just was so narrow and al1 of a sudden you come back and you don%know what Jane will do." The support and concern of her neighbours, the freedom of being able to use the world outside and the redization that her Me was more than the LAF room relieved her initiai uncertainw about leaving. Leaving the LAI? mmand retuniitig home meant disconnection from the hospital and the new relationships that had becorne significant. For Wendy, disconnection was a relief, YAfterwe come back (home), it doesn't matter the room is smd. 1 was so happy 1dont have to deal with the (nurses). That's the major thing." 103 Debbie's son, Matthew, had been diechargecl to the parent residence at the time of the interview. While at the residence, he got the flu and was readmitted to the hospital. Debbie described her sense of disco~mectionfrom the unit where she had spent so much tirne and been cornfortable for so long. The social environment was diflerent and drimiliar. 1can't believe the change of familes. 1sat in the parent lounge and 1 felt like 1 shoddn't be sitting there. Everybody just kept calling at me, 'Are you from the unit?' 1was really uncornfortable." Three mothers described how they visited the unit and "kept in touchwwith some of the nurses aRer discharge. Four years aRer diacharge, Amy described saving news articles which referred to the department or the staffdoctor. She bsed any excusewto come to the hospital to see them and wanteà to limit the time of the second interview so that she could visit the doctor. It was important to Amy to remain comected to the positive aspects of this significant part of her life. turninn Home Prior to discharge mothers had felt secure in the LAF room especially as their infants' health improved. Leaving the room meant that the infmh were again more vulnerable to infection in the unprotected environment. The mothers were anxious to safeguard their infmts' good health so that protecting the infant continued to be a primary activity aRer discharge. In the fouowing quote, Wendy intempted the interview when Jane began scratching her ear. She implied that the upcoming weekend made her feel particularly vulnerable because it was more diffidt to contact professionals at the hospitd who could advise her. Her ability to protect Jane's health was limited by the professionals' work time:

Pm worried she has an itchy ear. Scratching. She is not 100% ....Jane come here. Stand up. 1hope she's not sict..She has cold and cougfi. She makes me wo -...me go to hospitd again) next Thursday. So, today's Friday. 1 don't like F'riday. 104 Amy recalied her attempts to protect Rob from contagions in her hume: %gain, 1was really concerned about Rob and, and people coming into the house and, Wash your hands and don%get too close and don%sneeze and, oh: 1mean, it was really tough." Tracy's concern for her son's health forced her to change her place of residence to a srnail basement apartment. She felt that her mother's house where she had lived prior to her son's illness did not offer suitable protection for her nilnerable son because of family members who smoked and the presence of house pets. As well, to guard her son's health status, Tracy changed her own lifestyle habits. She feared cancers for her son in the future caused by the medications he was on. Exposure to second-hand smoke would only increase his risk She, therefore, smoked outside her home only. Only the mother who had resumed working during her son's hospitalization was employed at the time of the interview. One was retuming to work shortly aRer and another had plans to retum at some point. The other two mothers did not refer to employment. One mother happily spoke about resuming her multitude of roles at home. Because she was busy, she had no time to think about the 'awful" experience of hospitalization, YAthome so busy with them. To be mother, housekeeper, cook, babysitter, everything. Wife. So it's really, it's very busy. There's not time to think specifically. (#5) Tracy described a sense of disconnection and uafamiliarity when she retunied to rural We. She canied her fears for her own safety in the city to the small tom where she lived. Although Debbie was excited about returning to her rural home, she anticipated her upcoming isolation. She knew that the phone would once again be her method of reconnecting with fkiends, just as it had been while she was in the LAF room. 'The phone is going to be my Link to the outeide world cause 1 can't take Matthew anywhere and 1 probably won't leave him very ohn." However, returning home also meant recomection with family and niends. Although Debbie was very positive about her experience in hospital, her relief to be reconnected to her family demonstrateâ how difndt separation had been for them: 105 (The doctor) said, Tou cmgo home*. Ooh, that home word. Yeah, that's the reward. It's been hard on the family. My Mm's been here. My Dad's been alone. Oh, my husbaml, oh. (holds forehead in hand) Pm glad we're going home, you know. Ijust want us to be together. (#l)

However, each of the mothers had difficulty or anticipated dificulty with a change in their relationships upon reconnection. Debbie anticipated a sense of feeling lost or out of place, gohg home to where fdyand niends would not understand what she was referring to when discussing her son's health status. She was afiaid that her preomipation with her child's health for the past year wodd mean she had nothing else to talk about. %y life has ben counts and, you know,ali these terms and that's al1 1know. So, 1don't know . (subdued)" Amy described the reaction of her oldest son to his younger brother's discharge. He had to change bis routine and adapt to a baby who Med for his things and attracted al1 of his mother's attention. In tum,her older son demanded more from Amy. Amy understood this but described a Mcult period of adjustment. Wendy was also concerned about the weil-being of her eldest daughter and the sibling rivalry that ensued afbr discharge. Neither Wendy nor Amy distinguished any differences between the nature of their relationships withtheir infants with SCID and their relationships with their older children. However, Amy reluctantly admitted to a subtle, taci t difference in the following statement:

There's certaidy, there's definitely something there (with Rob) because there's that histar-that you have. Um, but you don't, 1mean 1don't feel, 1don't know if when you Say, ''1s (Rob's) relationship different (with me than my relationship with my other children)?"1 don't feel that, um,ih necessarily dinerent. There's kind of this unspoken thing that we have with Rob because of that time. Claire commented on the strained relationship that developed with her husband, Don, shortly aRer discharge. They had been warned by hospital staffthat this would occur but Claire found it pdonged and disturbing. She referred to their irritation with each other and resulting "rockinesswin the relationship as a "crash" that began about two weeks aRer discharge and lasted one and a half years. Tracy describeci losing connection with people who had been her fiends prior to hospitalization. She found her previous fkiends immature. Her new fkiends were the other parents who had been through the experience with her. She attributed this change to her personal growth from her experience. Although she saw the benefits of her own maturity, she admitted, Yt's hard to make new friends." Although leaving the LAF mmand retumhg home was exciting, it was emotionaliy tumultuous and fraught with difficulties and adjustments. When removing the protective garb the mothers experienced an initial separation from their infant with whom they had been so close for many months. As the infants leR the room and hospital there was a sudden reco~mectionwith the contarninated world outside the LAF room. The mothers felt Milnerable leaving the protected LAF rmm environment and in some respects felt out of place at home. As well, changes in a variety of previous relationships required adjustments. Lookinn Back Missina a Year of Life Looking back on the duration of hospitalization four mothers commented that they were left with a gap of time in their own lives with respect to the world they had known outside the LAF' mm.Claire commented that, although she was aware that time was moving slowly in the hospital, she somehow thought that everything would stay the same on the outside. 'The world has gone on without you." Another mother described part of the impact of missing a year of her life during the hospitalization. She expressed some regret that she was absent for a year of the life of another child who she loved: 107 It's iike 1 missed a Far of my We. Its gone. And what Pm gohgto notice the most when 1go home is my nephews and nieces are a year older. My favourite nephew of dl, 1shouldn't Say that, he graduates in June. 1just can't believe it. 1 missed grade 12 of his life (long pause) (#1)

Although this mother regretted some aspects of misshga year of her Life, it is clear that the health of her child had made the year worthwhile to her. Asked to expand on her comment of "missing a year" of her life, she responded, '1 did. And it's worth it. 1 wouldn't have it any other way." (XI) Two other mothers stated that their lengthy focus on the LAF room excludeci them from that time in the outside world. Tor those 14 months 1like, 1 had nothing to do with the outside world." (#3) "I don't know realiy, 1don't know outside world for a year, even right now (a few weeks &r discharge). (#5) Puttine Thims In PersDective Despite prolonged disconnection from their previous lives and the hardships of staying in the LAF room, the mothers felt that the experience was worth the emotional stress and strain. One mother said, "It's a good experience. But it was awful." (#5) Because of the infants' outcome, the mothers were able to reflect on the rewards of the experience, "1 think Pve had more ups than downs. 1 redy do. Looking at it now. I've had. Yeah. 1can outweigh the bad to the good." (#1) We look back on it now with a hedthy child and so we can Say how rewarding and positive it is because we have Rob." (a) Two mothers felt proud of having endured such an arduous and unpleasant situation for the sake of their children's lives. One mother said:

1(am proud of myself). 1have ta, 1 have tn. 1 do feel proud to be, you know, ifs worth it. To see, she's doing well, to see how good she is. Oh, no matter how much 1 have gone through, it's worth it, you know,to get this. (#5) 108 Personal growth was noted as a rewairliiig consequence of the experience by three of the mothers. Two mothers felt that the medical knowledge about SCID and other diseases they had accumulated could help other parents and found this fdfilling. (#1) Tracy stated that she was more patient and was able to deal with the fivstrations of mothering more successnilly. She felt that her son wes happier as a resdt of what she had learned. She was proud of the personal growth the experience had brought and recognized that she was different hmother women her age because of it:

It made me mature a lot more. Um,everybody says that 1 don't act my age. Pm a Lot older, a lot more responsible than people my age usually are. Um, 1 don't think, like, if 1was just a regular 21 year old, I wouldn't have been able to communicate with those people that were older like my parents and 1wouldn't be able to have the friendships that 1had while 1was down there. So, like 1, 1 had to mature and like grow up and realize what I was going through.

Claire felt that she was more assertive than she had been in the past. She attributed this to maoaging her son's care in hospital. Interestingly, Claire's husband, Don, used his experience to get a job in another hospital. He wmte an introductory letter stating that he had no working experience in a hospital but that he had uessentiallylived at a hospital for a year" with his ill son. He got an interview and the job. Loo- back on her experience of king with her ill infant for a prolonged time in the LAF room, Amy felt that one of the rewards of the situation was having the opportunity to spend time with her youngest son. She felt that her experience with him as an infant would have been Merent if she had been at home with two older children and the demands of her own He. Claire felt that the control she had over the iduences her son was exposed to in the LAF room was a mqjor benefit of being there. Two mothers described their broadened and enriched view of the world because of the experience in the isolated LAF rwm. Both mothers felt that it put life events into perspective. They taiked about appreciating the health of theu children and the time they could spend with them. Wou appreciate tirne. You appreciate time with your children." (#5) "It makes you, you know, very thankful for those days that you do have with your children. The* healthy and weli and, ah, you're so much more appreciative of that. (#2) One mother was "enriched"by her new understanding of hospi ta1 life that had been unlaiown to her previously. '7 j ust thought every day when you Live your lives, you know,you%e outside of this. This, this is always going on when people are facing this...Sornething happening in, you know, in the hospitai with children." (4% j Despite her unpleasant experience in the LAF room and the pain of the concern for her daughter's Me,Wendfs perception of the world was enriched and broadened particularly by her experience of fundraising. She talked about her optimistic perception of the world and the people in it:

1know, one thing, that the world is fuil of love. Full of love. Yeah. Like God, it's really, it's worth, you know, ifs worth having baby in this world. 1 ofken, 1ohn think Pm, think that al1 people help. That redyhelp me. People care. And no matter what happened to Jane 1have to know the best in the world. I realiy appreciate, you know,1 really have to live in this world to appreciate, you know, to enjoy it... Ifs nice to live in the world even though you have some SM inside pu. (#5)

Although the mothers could view the entire experience positively, there were enormous psychological, physicai, social and monetary costs. Three mothers had resigned fkom their jobs. One father had lost his job because hi3 boss misunderstmd SCID to be Acquired Immune Deficiency and contagious. The father was not allowed to use the premises bathroom or cafeteria and was finally fired. Two of the mothers whose family income was cut in half because of employment loss spoke of the strain of financial concems. Both had a mortgage and 110 were required to pay rent for their mmnear the hospital. As well, there were the costs of parking, eating out, long distance telephone calls and, aRer discharge, of medications not covered by dnig plans. The families had to absorb these additional costs on one salary. Three mothers notecl that groups in their local communities held fimdraising events to help cover the cos& of the hospitalization. However, none of the mothers were able to find grants from government or charitable foundatioas although at least two %earched everywhere". (#5) Social workers did not help them with this ordeal. Instead, two mothers felt they were antagonistic and made their situations worse. Several mothers noted the physical cos& of the experience. Lrreguiar meals of fast food, constant thirst, lack of movement and being overheated were some of the physical consequences of being in the LAI? room for such a prolonged period. However, irregular eating times and lack of exercise did not seem ta be considered problems by the mothers themselves but became an accepted part of their daily routines. Nonetheless, one mother suggested that a separate, complete apartment for the infant and the mother to live in would benefit the mother by reducing the stress of irregular eating habits forced by the LAF room arrangements. Mewould be more or legs "normalw:

(A separate apartment) would probably be a lot less stressful for (the mothers) because then they can stül have the regular eating times. They aren't spending all day sitting in a room without eating anything all day long. And still have regular meab and eat healthy and still eat at normal times. Um, iife would be normal, or more normal. (#3)

Tbirst was one physical need which was disagreeable and could not be alleviated within the restrictions of the room. Reverse isolation des stipulated that drinks for the mothers were not allowed in the rmm. Tbe cumbersome procedures of going into and out of the mmas their thirst dictatecl or to the bathroom if they did 111 drink enough, limiteà the mothers' ability to quench theù thirst. One mother ucouldn't stand" (#5) her thirst and had to leave the room. Another mother stressed her extreme thirst but described her limiteci ability to satisfy it. The garb and scrub made her unable to care for her body. She described it in the following way

Well, 1know that, um, 1 should have been a lot more conscious of, of, ah, thirst Maybe not so much the hunger. 1 always ate when 1came out but 1 should've had like bottles of water that 1drank when 1got out of the room for the evening. 1 couldn't have done that before 1 went in for the day because you just can't drink and drink and drink because then you're going in and out because you have to use the washroom. So, um, 1think 1should've probably been very conscious of taking large bottles when I leR for the day and just making sure 1, 1rehydrated myself because Pin sure 1 was just completely dehydrated the whole time I was down here. (#2)

Al1 mothers mmplained of exhaustion. Debbie stated that her body 'just couldn't take it anymore" one day. The only day of her son's 9 month hospitalization that she didn't go ta the LAF mom, she said she J'ust couldn't get out of M." Intendmg to rest for the moming, she didn't wake until evening. Another mother described her exhaustion during the strain of chemotherapy. 9 would leave and just feel that 1 could barely, you know, walk to the car... My whole body was just caving in. 1can't, you know, ifs just, ifs like taking everything out of me." (pause)(#2) A third reported that her fatigue made her feel physically ill. She lost all her energy. ARer discharge, she commented that she felt tired, uexhausted"by the ordeal. During hospitalization, the same mother said she had "no sleep". (#5) The prolonged strain of the experience bmught enormous psychological costs. Mothers spoke of tension, stress, anxiety and et.They described the ordeal as %rriblem and uawful. Four years later, remembering the uitensity of her feelings at diagnosis made one mother cry whenever anyone asked how her son was. She said, "1 112 think 1feel more emotional about it when 1look back on it then when 1was actually doing it." (#2)Another mother described the overwhelming stress of diagnosis. She was desolate, confised and uncertain, questioning Heitaelf. She describes berself as being emotionally lost, yet literally and figuratively "stucknin the room:

Like in the first two months 1 always felt, what bad luck. Everyday 1 cry there and say what's the bad luck. %y it's me? What's wrong with me?' You just feel, you know, worse than the, you just don%feel, you know, why do people have to live? It's very, very stressfùl, very depressing. You're totally lost. You just don't know the meaning why you live. You don't have Me. You have no life. You're stuck here and you dont know what to expect. You're stuck in this place. (X5)

Another described nausea, inability to eat and consequential weight loss because of her anxiety while waiting for a donor. (#l)One mother attributed back pain and headaches to "stressw. (#5) Another mother described the ''total anxiety of everything we did" duiing chemotherapy because of "knowing what (she was) working up to." (#2) Wendy described feeling "guiltf when she could not take care of both her children at the same time. Claire felt that her coping skills which had been strong during hospitaüzation "took a real divenand that it took her a long time to relearn how to manage We stresses. Tt was as if rd coped for so long (during hospitalization), 1 couldn't do it anymore.' Tracy said that she would not be able to go through such an experience again, fearing for her own mental health. "As for myself, my sanity, 1 don't know if 1would stay sane going through it again. Um, 1 did it once but 1 wouldn't do it again." Three mothers said they "put (the experience) to the back of (their)mindm (#a) in an attempt to quell their memories. "1don't think about it... It's over. 1 don't think about it." (#5) Debbie found it diffIcult to believe that almost one year had gone by since admission. She desdbed 'kiping out" mernories of her ill infant preferring to 113 focus on how he looked Ytoday". Amy's experience had taken on an aspect of unreality but the memory of the emotional stress was still vivid. She described her feelings looking back on her experience four years later:

Thinking about, about that time it seems almost impossible to think that it happened. But it's still pretty, it's pretty, it's recent and sa1 find it very, very emotional. Very raw. Like 1just, 1, 1, 1 can't believe sometimes that it, it was this, it was that. It was close to a year that we were here and what we went through.

In the following quote, Tracy described her experience as a "nightmare" that she tried not to think about:

When 1 go up to the unit and see people who are about that was, it seems like a, like we've never done that It was a very long nightmare that, um,now that we're out, like even, we were out three or four weeks the first time we went back up to the unit. And, ah, 1 went dom and spoke to one of the other Mums and to see her in her gown and mask and in one of those rooms was like, 'Why are you in there?" Like, Vhat are you doing in there?" 1, 1couldn't even in that short period of time, put myeelf back and say you were there. And yet it just, it was a big nightmare. And I just sort of shove to the back of my mind, 1 guess. Um, like it's always there. Yeah. But the reality of it is getting more and more minute as time goes on. So. Putting myself in the rom now, I don't, 1 don't think Pm thinking 1was really there. 1 really don't. CHAPmR 8 Discussion and Implications My focus on mothers' experiences of space, place and time during their infants hospitalizations in the LAF room revealed that these features were important and cornplex The following wili discuss the mothers' paradoical experiences of space and place, the mothers' attempts to shape the alien nature of the LA.room and it's des and regulations in an attempt to maintain their materna1 roles and their multilayered experiences of time. Paradox of Place and S~ace The paradox of space and sense of place present in this study iliustrate the complexity of the mothers' experiences within an eleven by eleven foot room. The LAF room was not simply and obviously a smdand specialized hospital rmm protecting the infants from contagion, as an observer might assume. Instead, mothers experiences were full of con.ilicts and contrasts because of the nature of the space itself. The close, obligatory and rewarding relationship they had with the infants kept the mothers retuming to a place which would otherwise have been unbearable. It was the compulsory placement of the infants in the room which made the mothers 'wantw, 'heed" and 'anxîous" to return. It was the infant who was central to how the space was experieneed. Recently, geographers have suggested that space and place can have paradofical qualities. Consequently, people may simultaneously ascribe two very different or contraclictory meanings to a particular physical location (Women and Geography Study Group, 1997). The simultaneously protective and restrictive aspects of the LA.room exemplifiecl this point. The first and most signincant meaning attributed ta the room by all mothers was that it was considered a protective shell. The rmm's definite and clear boundaries physically demarcated a safe space, offering the Want shelter fkom Wethreatening contagions outside. Staying in the room was the infmts' only chance of sumival. The mmwas also 114 115 tremendously important to the mothers because it was a place that offered them the opportunity to legitimately relinquish most of their normal activities and responsibilities ta care for theù critically iU babies. Inside the room, mothers activities exclusively concentrated on protecting or guarding the infants hmmortal danger and from psychological trauma. Mothers appreciated staff who augmented the protective shell of the room by providing excellent care. Paradoxically, the rmm was aleo like a prison for the mothers because they were confïned and isolated. Because they were always visible to hospital staff', some felt that their activities were monitored. They yearned for escape hmboredom, isolation and the intense, recurrent stress of their infants' illness trqjectories. Time felt as if it were suspended by waiting and the prolonged indeterminate length of hospitalization. AU mothers organized time into daily segments with predictable routines and considered the pmlonged hospitalization in distinct phases related to the course of treatment for SCiD instead of considering the very distant discharge. These strategies resembled those of actual longterm prisoners studied by Cohen and Taylor (1976). The LAF rompresented incredible constraints which dictated the mothers' abilities to enter and leave, the activities they could engage in and the apparel they could Wear. Rules related to prevention of contamination even dictated how they held themselves and touched their infmts. Yet in one important way the metaphor of the LAF room as a prison is incorrect. Udike prisoners, all mothers wanted and needed to be in the rmm. As they entered the prison cell, the mothers became it's staunchest guard. It is ciifficuit to find an appropriate metaphor to illustrate the unique experiences of the mothers in the room. 1 have cded it 'voluntary confinement" because the prolonged restrictions that would be considered intolerable in other contexts for most adults, were accepted. These restrictions simultaneously reprcsented the means to Save the infmts' lives. The mothers experienced numemus smaller paradoxes and contrasts related to the physical attributes of the LAF room which contributed to their sense of protection or confinement. While the mmwas a safe haven for the infants, it posed Il6 dangers as well. Touching the floor and physid exposure to any other body, including those of the mothers, threatened the infants' safety and increased their risk of death. The LAF mmwas isolated from the targer unit, hospital and outside world by virtue of its many physical boudaries, yet the glass wall to the antermm and corridor made it public 24 hours a day. Like being in a fish bowl, mothers muld not verbdy communicate but they could see staff in the antemm and staff, visitors and patients in the adjacent corridor. The exterior window was used by the rnothers as a link to the outside world but it also serveci as a rigid physical boundary, capturing the mothers inside the room. The mothers experienced aspects of the treatment regimen paradoxically as well. Medical treatmenta were perceived by the mothen as life- saving but at the same time, medications made the infmts criticdy ill and requinxi endless medical and nursing assessments, monitoring, and preventive and emergency care which added to the mothers' distress. The surgical garb protected the infmts from the contagions of the mothers' bodies and allowed them to stay in the LAF room and to touch and hold thei.babies. However, the garb was also a physical barrier between the mothers and infants, separating them and effectively negating any skin- tolskin contact. The mothers felt some physical relief when they could leave the room but escape was never complete because of their preoccupation with their inf'ts' conditions and well-being. Because the mothers developed strong psychological attachments to the LAF room, their actual home or parent residence where they slept and, in two cases, cared for their other children were not places of refuge. Mothers considered them only as places to spend the time when they could not be at the hospital. Instead, their obligations to their critically il1 infants made mothers feel that they belonged in the LAF room. As well, staff expected them to be there to nurhire their infants. However, belonging was incomplete because it was conditional on strict adherence to deswhich negated living' in the mmand delineated activities and routines. In other words, the mothers belonged in the room but restrictions made them outsiders. The LAF room was the infants' home but not the mothers'. During hospitalization of their infants, a sense of home was largely missing hmthe mothers' experiences. The mothers' relationships wîth others were also paradoxical. Husbands or partners were close and supportive yet time apart, physical distance and radically differing ddyexperiences and commitments separated thern. Mothers were concerned about the well-king of their older chüdren and strived to keep in touch with them but they were removed by the intensity of their experience, their own finite energy and by the physical boudaries between the chüàren's worlds and their own. Old fiends were excludeci hmthe mothers' lives during the infmts' hospitaüzations while, in 3 of 5 cases, parents of other children who also were catastrophically ill became fiends by virtue of the experience they shared. The confidence that the mothers had in the excellent care provided to the infants by some nurses allowed them some fkedom from ever present concem for their infants and sometimes actual escape from the room. Mothers perceived other nurses as threatening to the safety and health of the infants because of neglectful, insensitive, inefficient or hadequate care. When these nurses were caring for the infants, the mothers' increased their own vigilance and felt the need to be constantly present in the room. Hence, the mothers felt even more confineci and caught in the room by the poor practices of a few nurses. Materna1 Activitieg Within human geography theory, although people are conceptualized as capable of having an influence on their worlds, context and circumstances delîmit, shape and constrain their activities and social interactions (Dyck, 1990). The microspace of the LAF room placed entreme and unusual constraints on mothers. Although the mothers could not alter the constraining features of the LAF mm,a strilring fïnding was how active the mothers were in their attempts to manage the enormous restrictions imposed upon them. They seemed to do this in ways consistent with their maternal role to creata a space where they could protect their infmts and hence hilfill their maternal obligations. Similar to the nndings of this study, several feminist writers and researchers have described physical, emotional and social protection of children as mothers' primary cornmitment and de(Dyck, 1990; McMahon, 1995; Ruddick, 1984). The mothers attempted to shape aspects of the LAF room space and the activities and social interactions within it by advocating for their infants and adapting their routines to meet the demands of the LAF rmm and the infants' daily rhythm. Accordmg to Dear and Wolch (1989) asserting a greater degree of autonomy in order to defend identity is of primary importance when an individual is afFected by a spatial change. The mothers' attempta to organize and personaiize the and space was achieved through unconscious and conscious manipulation or 'working out' of conditions to create a sense of autonomy and to maintain their maternal roles in the LAF room. ûther aspects of the LAF room space were accepted as important. Staying in the mm,wearing the garb and giving up their lives outside the mmwere activities that were not questioned because they were perceived as absolutely necessary to protect their infmts. Maternai love and sense of obligation left the mothers with no other options. In order to behave in ways consistent with maternal obligations, mothers had to accept the requirements and constraints of the space. The mothers became connecteci over time to the LAF room which enabled them to reestablish maternal activities after the tumultuous changes forced by their infimts' diagnoses and LAF' room admissions. The adjustments that each mother made was a result of an effort to maintain her role in harmony with the nature of the space and the rules within it. Each mother reacted indindually to these desand displayed her uniqueness and autonomy in a space which demanded enormous conformity. Two reported 'cheating' and set their own limita of reverse isolation, one engaged in open confiict with the staff doetor, one augmented protection with her own desand another strictly controlled every aspect of her son's medical and nursing care. The two mothers who were satisfied and relatively content in the LAF' room 119 were also most focused and involved with their children. Possibly, these mothers had been able to adjust more successfidly to the alien space or did not feel that their maternal role was challenged within the constraints. Conversely, another mother thought that staffquestioned her cornmitment to her mothering role and consequently felt guilty and threatened. McMahon (1995) notes that because the maternal identity is so important to a woman's sense of self, king perceived as a bad mother is profoundly damaging. This mother described her thein the LAF room as very unpleasant largely because she perceived a few of the nurses' care as threatening to her infant and theïr judgments as threatening to her own identity as a "goodwmother. Activities undertaken to control the space and protect their infants oRen created conflict with staff suggesting that an article delineating the nursing care of a child with SCID by Fonger, Hart, Karn and Shiflett (1987) may accurately describe parents of those children from a nurse's point of view. The article states that parents are udifficult", uoRen manipuiative and overstressed" easily mistrating nurses and making their jobs more difficult. However, the findings of this preliminary study indicate that maternal behaviours and activities may only be a consequence of mothers' attempts to maintain their maternal roles and hence their psychological well-being and adjustrnent to a place and circumstances of extreme adveraity. Exaeriences of Time The mothers' experiences of time in the LAF room were complex and multilayered. Time was perceived to pass slowly, quickly or not at all depending on the infants' status and stage of treatment. Taken-for-granted and universal methods of marking time with the clock and calendar and with passing seasons were largely helevant in the LAF room. The infhnts' bodily daily rhythms, illness trqjeetory and physical development became the mat* within which the mothers organized and structurecl their daily lives. The rnothers' cyclical daily routine was punctuated by their own arrivals in and departures nom the LAF room which in tum were dictated by the infmts' sleeplwake 120 cycles. The mothers ignored or forced their own biorhythms and needs for sleep, food and bodily eliminations into the rhythms of the infants. Although mothers focused on the influences of their infmts' conditions and activities on their own presence in the room, their routines were also dictated by the time of other social structures. School time, childcare time, nursing shifts and work routines, times for medical procedures and treatments and husbands' and, in one case, mother's employment time each impacted on the mothers' daily schedules. Skillful time management was required to establish a daily routine to suit their inf'ts' needs, and in so doing, their own. When they were in the LAF room some mothers seemed to exercise autonomy in how time was used. Even then, however, medical, nursing and janitorial routines interfered. Mothers, therefore, had little power within their relationships to control time or determine how it was used in their day-today routines. ks days passed in a cyclical routine, the duration of hospitalization was marked linearly by crises in the infants treatment and illness trajectories and later in the hospitalization, by the infmts' developmental course. On the surface, mothers spent a lot of time waiting for treatment. Adam (1990) comments that time spent waiting allows an individual to move ahead with other activities while anticipating the end of the waiting period. These mothers, however, were consumed with worry about the infants' immediate conditions. The infants' futures were unknown and unpredictable so that the mothers were unable to plan past the next step of treatment. Also, the duration of the waiting period was unknown. The context in which the mothers 'waited' was out of the mothers' control. Hence, mothers felt suspended in the present by the intensity of their experience. The prolonged hospitalization made time a dominant influence in how the mothers experienced their stay in the LAF room in two ways. First, mothers sense of disconnection from the world outside and connection to the room and BMT unit changed over time. The effect of time, the infmts' conditions and the protective qualities of the LAF room combined to allow the mothers to adjust their sense of place attachment. When the infants were admitted to the LAF room, mothers were 121 required to make radical and fiuidarnental adjustments to the places and people that had constituted their daiiy lives. These exûeme, abrupt changes resulted in enormous physical and psychological upheaval. However, mothers described how the prolonged period of hospitalization had allowed them to become connected ta the LAF room and the hospital unit. They established daily routines, became familiar with the activities on the unit and became socially connected to other parents to some exteat. Significant values and meanings attached to the LAF room gave the mothers a strong sense of place which at discharge was disrupted as radically as it had been at diagnosis. When the infmts, who were stiil very nilnerable, leR the LAF mmthe mothers became responsible to provide the protection for their infants that had ken provided by the room. Hence, the mothers created new physical and social boundaries within their homes. Secondly, the subjective meanings mothers attributed to the LAF mmitself were dynamic and shifted over time. Until infants began to respond ta the transplanted bone marrow they had received, they remained extremely vulnerable to infection. During this period the LAF mmas a shelter from life-threatening contagion was overwhehingly important to the mothers. However, as the infants began to recover Arsuccessful BMT they became more active, wanted to use the contaminated floor and escape the room. Mothers spent a lot of time trying to entertain the infants in the sensory barren room. Over time, with the infmts' recovery and development, the mothers became more disturbed by confinement and isolation and by the dangerous aspecb of the room. Thus, the emotional significance attributed to the room over time by the mothers was attached to the infants' health and reactions to the room. The mothers feelings regarding dl other aspects of the LAF rmm remained essentially constant over hospitalization. The infants were, therefore, central to how the muthers experienced time in the room and the room over the. McMahon (1995) argues that the mother-infant relationship is mutually influentid. Not only does the mother affect the infmt but the infant influences the 122 mother. She states that children become sacdta mothers and strongly connectai to the mothers' sense of themselves. This study provides a clear and defhite example of how infats influence mothers' experiences of space, place and the. Mothers experiences in the LAF mmwere directly tied to the infmts' biorhythms, development and medical status and treatment. However, the reciprocal idluence on the infants of the rnothers' presence in the room is unknown because it was beyond the seope of this thesis. h~licationsfor Nursinn Practice Although the fmdings of this shidy are very preliminary, numemus nursing implications are apparent. If the complexity of the mothers' experience was understood by nurses, appropriate intervention could be developed that would be significant to the mothers and better their experiences in the LAF mm. Generally, nurses must strive to enhance the protection of the infants, help the mothers create a space to practise mothering activities and alleviate constraints imposed on the mothers. Although all are significant, it is important to consider them according to the mothers' priorities as identified in the study. Protecting the infmts hmthreatening agents was extremely important to the mothers. The mothers appreciated the protection the physical space of the LAF room afforded their infats and stressed that extreme reverse isolation rules should be maintained. However, mothers felt that staffneglect of niles or inadequate, inefficient care were threatening to the iafmts' health. Staffmust be sensitive to the mothers concerns. Reverse isolation protocol should be strictly adhered to by al1 staff. Even if the degree of isolation is questioned as necessary by some stafW. Gammon, personai communication, October 8,1996) adherence to the rules is important for the sake of the mothers' confidence and peace of mind as well as the health of the infant. Standebates as to the necessary extent of reverse isolation niles should take place privately. Mothers worked to control what aspects of the space they could in order to protect their infants and maintriin their materna1 roles. When admitting them, nurses must welcome mothers and ensure that they understand rules and restrictions. Routines and infant care activities should be negotiated with mothers to enable them to effeetively manage thne restrictions that are imposed on them and to facilitate mothers' cornfort with what is expected of them. Because the mothers' experiences are dynamic and tied to the infants9condition, nurses must assess and monitor mothers' reactions to the infants' hospitalizations and the care they are providing their ill inf'ant frequentiy. Clear, consistent information and rationale for interventions and medical treatment should be pmvided throughout the hospitalization. Meetings with mothers and primary care nurses rnay give nurses a better understanding of how individual mother's responsibilities differ outside the room. Nurses could then respond to the needs of each mother as they change over the hospitalization to provide individually appropriate care. Compiling and making available ment SCID and immune system literature, as one mother in the study recommended, rnay allow those mothers who are interested an enhanced sense of control through increased knowledge. However, it must be recognized that literature may provoke more questions and concerns. Staff, having read the literature, should be ready to address these. Vconfrontations occur between mothers and other staff, conflict resolution rnay be another important role for nurses. Problem-solving and teamwork to resolve conflict productively and with the mothen and infants best interests as a priority rnay keep communication between staff and mothers open over long periods. Nurses could also intervene to make the raom and it's features less constraining for the mothers. In one study, a picture of an outdoor scene was used by patients as a method to escape the confines of their isolation rooms (Gaskill, Henderson & Fraser, 1997). Lamiiiated and washable posters, chosen and changed every few weeks at the discretion of the mothers rnay provide sensory stimulation and a tool to assist escape fantasies or wishes. Visual imagery exercises taught by nurses rnay also assist escape. Slides of mothers' favourite scenes or people shone on the beige wdrnay offer an alternative method of staying comected to the outside 124 world. Nurses should provide times when mothers can leave the room by arrmging periods with the mother when a nurse or longterm volunteer could be available to care for the infmt. Whether or not the mother would use the respite would depend on the infants condition and anticipateci treatment procedures. Staff must recognize that mothers' experiences in the mmchange according to the infant's condition and expected treatment outcornes. AU plans must, therefore, be flexible to mothers' concerns. Mothers' preoccupations with their il1 infants even when they were not physically present in the mmmeant that they had no timc free of concern and worry. They expressed a need to be certain that they would be called if their infants' conditions changed but did not trust that this would be done. Nurses mutprovide the mothen with assurances that they will be notified at al1 times with any change in their infants' medical condition, no matter how small and then nurses must reliably fidfill this task A pager carried by the mothers would ensure that they could be reached and may dowthem a greater sense of freedom and relaxation. A connection to the LAF mmby television to the mothers' home or the parent residence used at the mothers' discretion muld allow a visual assurance of the infants' well-being. Mothers with older children felt tom by the separation of the LAF room from the worlds of their other children. Nursing interventions developed to blur the boundaries between these two worlds would benefit the mothers and the family. Because children are not allowed to visit on the BMT unit, telecommunications could be used as an alternative method to connect the spaces of the LAF room and the home instantaneously. Visual and audio links could ailow the mother to have lunch or dinner with her older children or read them a bedtime story. In turn,seeing the LAF room and their mother and sibling within it might provide the older children with a better understanding of the hospitalization. They rnay feel less excluded and, rnost important, less deserted by theïr mothers. They could interact with the infant during hospitalization perhaps reducing the adjustments required at discharge. A telecommunication arrangement for mothers separated by long distances from 125 partners and home may also benefit fdes. AU infmts would become familiar with family members faces, voices and with the physical aspects, 'normal' activities and social milieu of home. As well, vide0 ünks between the LAF rwms and the unit parent lounge could allow al1 family members and Rends to Wsit the infants and mothers. Mothers may feel less isolated, more supported and gratefid to supplement the infants' opportuiities for social interaction with people who are not in surgical garb and are signincant to the infants' lives. Mothers with older children found their experience complicated by the added respo~~ibilityof arranging routines mundtheir families' lives at home and their inf'ts' lives in the LAF room. Nurses must give mothers as much assistance as possible to enable a mutine that allows the mothers time in both worlds. They must be prepared to spend more time with the hoepitaiized infant and/or assist the mother in finding care for the older children when the hospitai does not have daycare available. Although their own physical health was not identifid by the mothers as a priority one must assume that if the mothers were able to attend to their own physical needs both they and their infmts would benefit. Nurses should be aware of the various physical cornplaints provoked by the LAF' room context and attempt to alleviate them as much as possible. Mothers wore their own clothes under fidl surgical garb and, not surprishgly, complained of being too warm. They could be provided with a smdcurtaîned area in the antermm to remove their own clothes before donning surgical garb. To prevent thirst and dehydration, sterile water in the LAF room or cooled water in the antermm could be available and the mothers encowaged to consume it throughout the day and especially when leaving for an hour break or in the evening . The restricteci times for toileting, however, remain. Perhaps part of a nurses' or volunteers' daily routine may include providing the rnothers with mid morning and mid afbrnoon breaks. Light, healthy snacks could be available at cost in the parent lounge during these times so that long periods do not pass without food. Exercises and stretches to alleviate stifkess and restlessness should be 126 designed specifïcally for mothers restricteà by surgical garb, reverse isolation rules and a small space. Some mothers may enjoy a pass ta the hospital gym or pool. A daily low-key lunch hour exercise class in the parent louiige could provide movement, camaraderie and emotional support to mothers. Being Myinfomed of treatment plans and medical concerne, support and assurances of being paged if the infants condition should change may help to relieve detyand disturbed sleep patterns. The availability of a specially designed LAF apartment for the mother and stable infant wes an important suggestion made by one mother. A larger space with several rooms including a bathroom, kitchen and bedroom would help reduce some of the constrainta imposed on the mothem and enhance their ability to control the space whiie keeping the infmts protected. The pllaitiag' periods may then become easier to endure. On the other hand, a mother ui a self-containeci apartment removed fiom the unit with her vulnerable infiant may feel more isolated, aonfined and anxious about the infants health than in the LAF mm.Effective monitoring of the infants status was important ta the mothers in the LAF rmm. Mothers would have to feel confident that the infants were effectively monitored in the apartments before they would feel cornfortable there. Nurses should also intewene with support and care at critical times in the infants' illness trajectory. While mothers are 'waitllig', nurses should strive to provide them with stimulating diversions such as the weekly bingo game which one mother looked forward to. Empathic support with speQal attention to care and protection of the critically il1 infmts should be the focus of nursing intervention around BMT. Assistance entertaining the infimt within the confines of the mmwith such things as puppet shows through the antemm window would help the mother as the infant became more active. Finaliy, the process of discharge needs to be reconsidered with interventions developed to make it less tumultuous for mothers and infants. Gradua1 removal of surgical garb should take place over several days instead of within minutes. Preparation of mothers to probable reactions of older children and partners should be discussed several weeks before discharge to dow mothers time to 127 consider the information, request assistance and prepare themselves and others concerned. Together these nwsing interventions may serve to enhance the positive protective features of the LAF rmm while offering the mothers more control, reducing some constraints and hence alleviating the confinhg and isolating aspects of the room.

Future Research Because the findings of this study are particular to the musual and unique LAF mmand mothen of inf'ts with SCID, they may not be properly generalized to the experiences of other mothers in other spaces. However, similar to the perception of mothers in the LAF room, mothers of healthy children in other studies described mothering activities at home as boring, oppressive, stifling mdisolating. Simultaneously, these mothen felt that the relationships with their children were rich and rewarding and were surprised and overwhelmed by their love and cornmitment for their children (Boulton, 1983; McMahon, 1995). Hence, the results of the present study are important to consider when exploring the experiences of other mothers whether in hospital or at home, with il1 or healthy children. To more thoroughly understand whether the experiences of mothers of children with SCID are unique or only more extreme examples of al1 mothers' experiences, research is needed which compares and contrasts the experiences of mothers in various spaces over more or less time. For instance, all mothers with infants may experience the paradox of space and place identified in this study. A longitudinal parücipant-observation study of mothers on the BMT unit would yield further detail about their experience. The complex influence of the on spacdplace could be explored more extensively by comparing mothers' experiences whose children are hospitalized for varying duratiom. A bigger geographical scale of concern would yield important detail of motben' experiences on the unit and how they are dected by each other, by staff, by the dynamics of the unit and by the 128 hieratchies and politics of the hospital. A study exploring nurses' experiences of caring for chiidren and their parents on a BWunit would indicate how nurses are affected by their relationships with mothers and infants including possible areas of contention and misuaderstanding. InInteentions could then be developed to benefit mothers, infants and nurses. Waiting' was identifÏed in this study as a uniquely stressfid period because of its timelessness and umertainty. Further research on the experience of time while 'waiting'may characterize it further. Cornparison to other waiting periods for other parents or patients may reveal similarities and contraets. How does a cancer remission period compare to 'waitiag' for a transplant? How could waiting be made less stressfid? How cm time be marked and made to pass more quickly? What may be some interesting and effective diversions for mothers who are 'waiting? In this study one mother spoke only positively about her experience in the LAF room. Three othen referreâ much more oRen to their feelings of confinement and isolation while in the room. This raises the question of why certain individuals notice or fail to notice aspects of the spaces they dwell in. As Kronenberger et al (1998) explored, Me histories, social support, individual coping patterns and other demographics rnay influence individual reactions to context and circumstance. A study to identify the factors associated with mothers' responses to staying in the LAF room with their ill infants would help identify mothen at the beginning of hospitalization who are at risk of having more negative experiences. Appropriate interventions could then be developed to help mothers adjust to the space and maintain their matemal des. Research regarding particular aspects of the LAF room space would also be helpful in the hopes of reducing unnecessary constraints while maintaining optimum protection for the infants. For example, how contaminated is the floor? What added precautions would make the floor a less threatening feature of the mm? Is it necessary for a healthy adult to Wear a mask at all times? At what times during the illness trqjectory is a mask necessary andlor during wbat procedures? When a mask is requîred, is it possible to devise a transparent one? Are gloves necessary at all times? The mothers in this study reportmi experiencing thirst, exhaustion, restricted eating and toileting, very limitai movement as well as stress, preoccupation, anxiety and uncertainty as the physical and psychological consequences of their prolonged stay in the LAF room. Similar to Tomlinson, Harbough, Kotchevar and Swanson's (1995) study which measured mothers' health changes during chüdren's hospitalization, a longitudinal study to measure the physical and mental costs of the experience incurred durhg hospitaiîzation would direct intervention to relieve deleterious health changes as much as possible. Quantifying financial costs accumulated by mothers and their families may identify this population as particularly needy of monetary assistance and provide impetus to set up grants or fwids to help cover expenditures. This study explored only the immediate discharge process. The reaaustments to home and significant relationships required by mothers may help to devise interventions to effectively prepare them prior to discharge. A series of longitudinal studies exploring the effects of the hospitaüzation on the physical, psychological and social well-king of mothers, infaah, siblings and partners after discharge may help to identie negative and positive repercussions on the family. The serendipitous findings of this study which suggested a Merence between the nature of mothers' and fathers' relationships with their infants during hospitalization and aRer discharge, should motivate research fn explore fathers' experiences caring for infants with SCID. This preliminary study only begins to explore mothers' experiences in the LAF room with their il1 infhnts. Numerous other studies should follow to provide more depth and detail. Focusing on mothers' experiences during a child's hospitalization and using the findings to direct intervention and Merresearch identified as important by the mothers themselves recognizes mothers and their materna1 roles as valuable and worthwhile. 130 Conclusion Using a human geography fkamework, the mothers' experiences in terms of the spatiality of the LAF room was at the centre of analysis. The findings indicated the complexity of the mothers' experiences of space, place and time. Multiple paradoxes of space and sense of place created a contlictlng context for maternal activities and social interactions. Mothers voluntarily confined themselves to an isolateci, small room with numemus physical restrictions for proloriged periods for the sake of their infants health. The nature of their experiences in the LAF room were directly associated with the infants' iliness trajectory,course of treatment and developmental progress. The mothers priorities to protect their infmts identifid in this study in order to be consistent with their maternal roles are not surprising. What is strikmg are the costs that they endured without question or hesitation in order to Mfill there maternal obligations. Although McMahon (1995) asserts that self-sacrifice or self- denial are no longer appropriate in motherhood, these mothers experiences were endured at great physical, psychological, social and financial cost with no expression of resentment or ambivalence. The importance of their maternal roles to their sense of selves is illustrated by their active efforts to control minute aspects of the space within the desof the LAF' rmm. 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Caregiver mental health and fdyhealth outcornes following critical hospitalization of a child. Issues in Mental Health Nursin~.16, 533-545. Turner, MA, Tomlinson, P.S. 6 Harbaugh, B.L. (1990). Parental uncertainty in critical care hospitalization of children. Maternal-Child Nursine Journal. 19(1), 45-62. Winkelstein, MOL(1992). Primarv immune deficienc~diseases: Addefor nurses. Maryland: Immune Deficiency Foundation. Women and Geography SWyGroup (1997) Feminist geoera~hies.Harlow, England: Wesley Longman. Zetterstrom, R. (1984). Responses of children to hospitalization. Acta Pediatric Scandinavia. 73, 289-295. Appendix A Letter To the Immundogy Coordinator OumHer Role in The Project

Dear Immunology Coordinator;

The following is an outline of your dein my pilot study that we have previously discuased. Upon approval of my proposal by the Nwsing Renew Cornmittee and the Research Ethics Board, 1 will request that you identify participants according to the inclusion criteria of the project. 1) The biological, fmhr or adoptive mother is fluent in the English language. 2) The child will have undergone successful treatment for SCID. 3) The child was discharged fkom the participating hospital since 1993. 4) The mother estimates that she spent an average of at least 8 hourdday with her il1 infant. 5) The mother lives within a 200 kilometre radius of the ci@.

Approximately 2 weeks before 1expect to interview each mother, 1 will request that you contact the potential participant by telephone. Points to include in the conversation are: Sally O'Neill, a graduate student from the Faculty of Nursing, University of Toronto would like to speak to you about her research. She is interested in what it is like for mothers to be in the LAF room for a prolonged period with their infant May 1give her your name and telephone number so that she can explain the study Merand you can ask questions. You may then decide whether or not you want AI meet with her. I also mentioned previously that you would be the contact person at the hospital, if any participant wishes supportive resources aFter the interview. 1 will contact you only with the mother's permission. Thank-pu for your assistance.

Sally O'Neill RN, BScN, BSc. Appendix B Exphnation of Reeearch by Telephone In order to Ob* Verbal Conaent or Refueal to Meet Potential Participant

My name is Sally O'Neill. 1 am a Master's of Science candidate at the Faculty of Nursing at the University of Toronto. The Immunology Coordinator gave me your name and number with your agreement. I am conducting a research study that will describe what it is like for a mother to stay with her Uifant in the LAF room. 1 would like to meet with you in pur home or at the hospital for two 1-hour interviews about 1 week apart. During the interview 1 will ask you questions about your experience during pur infmt's hospitalization. If you decide to meet with me I will explain the research in more detail so that you can decide whether or not you would like to participate. Meeting with me does not mean that you are under any obligation to be involved. The meeting is an opportunity to hear more about the study and to ask questions. Written information about the study will be provided. If you decide to participate, the first interview will take place at this meeting. Could we arrange to meet? Appendix C Consent Form Title of the Research Proie& Mother's Description of Staying with Inf'ants Hospitalized with Severe Combined Immune Deficiency- An Exploratory Pilot Study InveetiPatom: Rinuig Investigator Sally O'Neill RN, BScN, BSc, (Master's of Science Candidate), University of Toronto, Faculty of Nursing. Th& Advieor Patricia McKeever, RN. PhD, Associate Professor, University of Toronto, Faculty of Nming. Ruinule of the Reseaicb; The reason we are doing this study is to try to understand what it is like for rnothers to be in the IAF mmin reverse isolation for a prolongeci period with their ill infmts. Deeeri~tionof the lbearc4 You will be asked to participate in two interviews with the primary investigator, Sally O'Neill. This interviews are not part of the care you would receive at the participating hospital if you were not participating in the study. The Lntemietips: The interviews will take place in your home or in a private room in the hospital which ever is convenient to you; The in&views will be scheduled about 1 week spart. The interviewer will begin by asking pusome questions about you and your child. She will then ask you questions about what it was like for you in the LAI? room in reverse isolation. You may answer the questions any way you Like. There are no wrong or right answers. The inte~eweris interested in hearing your sbry. You may use any memorabiiia (photographs, diary excerpts, cards, etc) you wish to help you describe your experience ta the interviewer. These will remain in your possession at all times. With your permission, the discussion will be tape recorded.

Potential Hamas (Iniurv, Diecomforb, or Inconvenience): There are no known harms associated with participation in this study. It is possible that some mothers will find it stressful or ditncult to talk about their experience. If you experience distress and with your permission, the interviewer will refer you to the Immunology Coordinator to get you any assistance you may want.

You will not benefit directly fkom participating in this study. The information obtained fiom this study may help health care professionals understand what it is like for mothers to be isolated in the LAF room with their infants. The information may be used to make the experience easier for other mothers. Confidentiality dlbe respected and no information that discloses your identity or your child's identity will be released or published without consent. The research consent form wiil be inserted in your child's health red. GU other irifomation will be kept confidentid with the understandingthat the primary investigator is required by law ta report information about physical/senial abuse of a minor in your home or any other home and information indicating that any other person may be at risk of severe physical hm.Information of this kind will be shared with the health care team at the participating hospital. PLLFticimatio~ Participation in research is voluntary. Ifyou choose not to participate, you and your fdywill continue to bave access to the same care at the participating hospital. You may withdraw hmthe study at any time, even after you have agreed to participate. If you choose to withdraw, puand your family will continue to have access to quality care at the participating hospital. Cornent Form I acknowledge that the research procedures described above have been explained to me and that any questions that 1 have asked have been answered to my satisfaction. 1have been informecl of the alternatives to participation in this study, includuig the right not tn participated and the Rgbt to withdraw without compromising the quality of medical care at the participanthg hospital for me and for other members of my fdy. As weil, the potential harms and discornforts have been explained to me and 1 also understand the benefits (if any) of participating in the research study. 1know that 1 may ask MW, or in the future, any questions 1have about the study or the research procedures. 1 have been assured that records relating to me and my care wiU be kept confidentid and that no information will be released or printed that would disclme personal identity without my permission unless required by law.

1 hereby consent to participate.

Name of Participant Signature

The person who may be contacted about the research is: SdyO'Neill who may be reached at telephone number:

Name of person who obtained consent Signature Date Appendix E Sound Recodhg Consent Form Title of Reaearch Proiectt Mother's Descriptions of Staying with Infants Hospitalized with Severe Combined Immune Deficiency - An Exploratory Study

Rimory Investigatur Sally O'Neill RN, BScN, BSc, (Master's of Science Candidate), University of Toronto, Facdty of Nursing. Theais Advisor Patricia McKeever, PhD, Associate Professor, University of Toronto, Faculty of Nming. 1hereby consent to be taped during participation in this research project. 1 understand that 1 am free not to participate in this part of the study and that if 1 agree to participate 1am free to withdraw from this part of the study at any the without compromising the quaLity of medical care at the participating hospital for me and for other members of my family.

Name of Participant Signature

The person who rnay be contacted about the research is: Sally O'Neill who may be reeched at telephone number:

Name of person who obtained consent Signature Date Demographic Form

Motber's Date of birth Marital status Did you have paid employment prior to infant's admission? If yes, what was your occupation/activity? HOWmany hourdweek did you work? Were you on pregnancy leave? When was pregnancy leave over? If you did not have paid employment were you involved in other routine daily activities prior to your babfs admission? If yes, what were they? How many hours per week did puspend on them? Do you have other children? If yes, how many? What are their ages?

Date of infants birth Age of infant at admission Date of infmt's admission Duration of infant's hospitalization Date of bone mamw transplant Type of bone marrow transplant Was admission to the pediatric intensive cmunit requhed at any time during hospitalization? If yes, how many separate admissions were there? Was your infant moved ta different LAF rooms during hiderhospitalization? If yes, how many times? What was the date of your infmt's discharge? On average, how much time did you spend per day with your infant? Where did you sleep during pur inf't's hospitalization?

Have any other family members been diagnosed with SCID as far as you know? Appendix G Sample Questions

Openhg Question: 1am interested in what it was like for you to stay with your baby in the LAF mm. When your baby was hospitalized, you had ta give up many of your normal daiiy activities. You spent most of each day in a smdl room, clothed in a gown, mask, gloves, hat and boots with (nameof infat) . Pm particularly interested in what the physical space was like for you, what pur routine activities were, how your relationships were affected and how you experienced the passage of time. Could you describe to me what it was like for you to stay with your infant in the LAF rmm in reverse isolation?

Dimensions of Pbysical and Social Place in Time and Space: Evergday Activities: Please describe your average day while your infant was hospitalized, including your time outside the LAF room? What was it iike to spend time in the LAF room? How did the characteristics of the LAF room affect your everyday experiences? What did you think about or how did you feel when you were preparing to go into the rmm and when you were leaving the room each day? What were the rewards of this experience for you? What were the costs?

Social Inbractions: What was it like to leave your usual world and activities to be in the LAF rmm? How did the experience affect your relationship with your baby immediately and over time? To assist the mother in answering this question the following probe may be used: You might find it helpfid to think of a few characteristics that describe your relationship with (name of infant) and to iliustrate them with an example. What was the impact of your experience on your other relationships? What new relationships developed? Which of these were most important to you? What kînd of relationships did you have with the &dl? How did you maintriin contact with the outside world - your personal relationships and current events, for instance? How did you perceive your role in the mmwith your baby? with the health care staff? How do you feel you have changed fkom your experience?

Tempodty How did you pags thewhile you were in the mm? What were your perceptions of thewhile you were in the LA.room? Did your perception of time change over the hospitalizatioa period?

Mothem' Suggestions: How could the experience of car- for an infant with SCID be made easier for mothers, families and infants? How couid the care you experienoed have been better? Mother Profile Claire (& Don) Claire is 34 years old and is married to Don. Don participated in the interview. At the theof their son's, Geny's, diagnosis Claire was on maternity leave hmher fuil-time job. She returned to work approximately 2 months after the diagnosis. Don took a patemity ieave when Claire's leave was over. He was fÙed upon returning to work after the leave. Gerry was diagnosed at 4 months old during a 3 week hospitalization at a community hospital. He was then moved to a university hospital in a city close to where the couple lived where he stayed for 6 months. Finally, he was transferred to the hospital LAF mmwhere he received an unrelated BMT 10 months after diagnosis. He was discharged 2 months later. He was hospitalized for 12 months, 6 months of which were spent in the LAF. He had 2 admissions to an ICU. Claire spent 12 hodday in the LAF mmwhen she was not working and 4 hodday on work days. Don spent 12 hourdday in the LAF mm. While Gerry was at the other university hospital, Don and Claire lived in their home in suburban area of the &y. When Geny was transferred to the hospital they stayed in a nearby hotel for 6 months at a special rate. Geny had been discharged 3 years pnor to the interview. He was 4 years old at the time of the interviews. Gemy was present during both interviews. His sister, who is 2 years younger, was also present during the second. Both Claire and Don were working full-time at the time of the interview. They

had arrangeci tbeir shiR work BO that one parent was always home with their chiidren.

Debbie Debbie is 41 years old. She has been in a stable common-in-law relationship for several years. At leut since the time she became pregnant with her il1 infant, she did not have paid employment. Her routine daily activities involved taking care of her infant son, Matthew. She lives outside the province in a smdtoan. When Matthew was diagnosed, her partner stayed at their home to work and Debbie's accompanied her daughter for most of 146 147 Debbie's stay. She spent a lot of time with Debbie and Matthew in the LAF room. She cooked dinner for Debbie every night at the parent residence. Debbie does not have any older children although she had had a miscaniage 1 year before Matthew's birth by which 'devastatedmher. Matthew had been admitted to the LAF mmwhen he was 4 months old aRer king diagnosed at a community hospital at 3 months of age. He received an unrelated BMT 4 112 months later and was dischargecl to the parent residence 3 112 months after that. He, his mother and grandmother stayed at the family residence for another 6 weeks. Matthew and Debbie were in the LAF' mmfor 7 112 months. Debbie spent 12-13 hodday with in the LAF mm. Matthew did not reqhcare in the ICU. At the time of the interview, Debbie was still at the family residence. She planned to return home witb Matthew two days aftemard. Matthew was 13 months old at the time of the interview. 1 did not meet Matthew.

Amy is 44 years old. She is manied, lives in the city where the hospital is located and has two older children who were 7 and 5 at the time of their brother, Rob's, admission for SCID. Although Amy spent 8-10 hourdday in the LAF mm,ber husband shared visiting time providing care for Rob when he was not working. Amy was on an extended leave of absence from her work as a part-time flight attendant at the time of admission. She had also been a volunteer one morning a week. Rob was diagnosed and admitted ta the hospital when he was 5 months old. He received an unrelated BMT 6 months later and was dischargecl 3 months akr the transplant. Rob was hospitalized for 9 months. Because there were no LAF rooms available, for the initial 3 month Rob stayed in a mmon a medical unit. He was then moved to a LAF mmin an old part of the hospital for 4 months and finally to the LAF mmin the new hospital for 6 weeks. He did not require care in the ICU. Rob had been dischargeci 4 years prior to the interviews. He was 5 years old at the time of the interviews. 1did not meet Rob.

Wendy Wendy is 37 years old. She is married and lives in the suburbs of the city where the hospihi was located. She hm one older daughter who was 2 years old at the time her sister, Jane, was diagnosed with SCID. Wendy 148 was on maternity leave from her full-time job as a research assistant at the time of diagnosis. Her leave was over 2 weeks later. For a short time she returned to work. Jane was 5 months old when she was diagnosed and was admitted directly to the hospital. Because the chances of finding a matched bone marrow donor through the international registry were reduced, 1 in 20,000, Wendy and her husband were encouraged to assist in the search by soliciting prospective donors. Each prospective donor required a blood test for which the couple paid $50/test. Through fundraising, Wendy estimated that they were able to pay for 2,000-3,000testa. Wendy's husband traveled extensively twice to in search of a donor. Eventually a donor was found through the international registry. Jane received a nomlated BMT 7 months after admission and was discharged 3 months after the transplant. She remained in hospital for 10 months. While Jane was at the hospital the family stayedat the family residence. Wendy spent 8-10 houdday in the LAF mom. Jane was discharged 4 weeks before the first interview. She was almost 1 112 year old at the time of the interviews. Jane was present during both interviews. Wendy had not yet resumed working.

Tracy is 21 years old. She is a single mother with no other children. She is still in contact with her son, Mac's, father and his parents. Initially, Mac's father would come to the hospital on weekends when Tracy returned home. However, for the mqjority of Mac's hospitalization Tracy was not on speaking terms with Mac's father. Tracy's mother and Mac's paternal grandparents helped in the LAF rooms when they were able. However, post transplant for 9 months, Tracy cared for Mac alone. At the time of admission Wacy had worked part-time in retail and lived in her mother's home in a rural town. She occasionally worked on weekends prior to the BMT. For the first 2 weeks of Mac's admission 'Ikacy stayed in a hospital residence. After that she lived at the family residence. Mac had been admitted to the hospital when he was 10 months old. He received an unrelated BMT 5 months later and was discharged 9 months afker the transplant. He was hospitalized for 14 112 months. Tracy spent 10-12 hourdday in the LA.morn. Mac did not require admission to the ICU. Mac had been discharged one year prior to the interview. He was three years old at the time of the interviews. Mac was 149 present at the initial inteiview. His father took care of him hughthe mqjority of the second. Tracy was not working for pay et the time of the interview. She and Mac's father had a friendly relationship.