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 The author has granted a non- L'auteur a accordé une licence non exclusive licence allowing the exclusive permettant à la National Library of Canada to Bibliothèque nationale du Canada de reproduce, loan, distribute or sel1 reproduire, prêter, distribuer ou copies of this thesis in microforni, vendre des copies de cette thèse sous paper or electronic fonnats. la forme de tnicrofiche/filrn, de reproduction sur papier ou sur format électronique. 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........... ... ..................................................