Perspectives of Support Workers on Supporting Persons with Intellectual Disability and Pica

Abstract Volume 17, Number 2, 2011 The purpose of this paper was to determine the support needs of adults with intellectual disability (ID) and pica (the ingestion of inedibles). Through two focus groups, the perspectives of staff Authors from institutional and community settings in Ontario were examined. Qualitative data revealed that three categories of Melody Ashworth,1 intervention underpinned reduction in pica (i.e., preventative Lynn Martin2 measures, formal supports, and familiarity with the individual), and that staff in both settings tended to be isolated in manag‑ 1 Department of Human ing this complex behaviour. Further, inadequate resources, the Development lower functioning level of the individual, and lack of knowl‑ and Applied Psychology, edge acted as barriers to implementing strategies to reduce the Ontario Institute for impact of pica on the person’s life. This study provides impor‑ Studies in Education tant information on the barriers and successes experienced by (OISE), support workers, and the service needs and recommendations University of Toronto, Toronto, ON for additional services for adults with ID and pica. 2 Department of Health Individuals with an intellectual disability (ID) have a higher Sciences, Lakehead University, prevalence of comorbid psychiatric disorders and challenging Thunder Bay, ON behaviours compared to the general population (American Psychiatric Association, 2000; Borthwick-Duffy, 1994; Cooper, Smiley, Morrison, Williamson & Allan, 2007). Pica, the inges- tion of inedible substances (e.g., paper, plastic, string, cigarette butts, hair, feces), is a behaviour that more commonly occurs among the ID population, affecting 0.2% to 25.8%; rates are higher in institutions (Ali, 2001; Ashworth, Martin & Hirdes, 2008; Danford & Huber, 1982; Swift, Paquette, Davison & Saeed, 1999; Tewari, Krishnan, Valsalan & Roy, 1995), and Correspondence among those with more severe levels of ID (Ashworth et al., 2008; Danford, Smith & Huber, 1982; Lofts, Schroeder & melody.ashworth@ Maier, 1990; Matson & Bamburg, 1999; McAlpine & Singh, utoronto.ca 1986; Swift et al., 1999; Tewari et al., 1995; Witkowski, 1990).

Pica is considered a self-injurious behaviour because of its Keywords broad range of health consequences (e.g., malnutrition, ane- mia, parasitic infections, intestinal obstruction or perforation, pica, death) (Danford et al., 1982; Decker, 1993; Lofts et al., 1990; intellectual disability, Stiegler, 2005) and negative impact on quality of life (e.g., support staff, decreased engagement in recreational, productive, and social qualitative activities) (Ashworth, Hirdes & Martin, 2009; Bugle & Rubin, 1993; LeBlanc, Piazza & Krug, 1997). Research on functional analysis and intervention of pica have identified that pica appears to be maintained predominantly by physiological or sensory reasons, rather than social reasons (i.e., attention) (Applegate, Matson & Cherry, 1999; Matson & Bamburg, 1999; Matson, Mayville, Kuhn, Sturmey, Laud & Cooper, 2005; Wasano, Borrero & Kohn, 2009). That is, pica is considered © Ontario Association on Developmental Disabilities Ashworth & Martin 36

self-stimulatory, as the individual takes pleas- with pica in the province of Ontario, with par- ure in the sensory properties of the items they ticular focus on what strategies they found suc- ingest, and the ingestion of those items auto- cessfully reduced the impact of pica behaviour matically reinforces the pica (Piazza et al., 1998). on the lives of individuals and what barriers However, some single-subject research indicates existed to implementing those strategies. that pica can also be a function of social atten- tion (Mace & Knight, 1986; Piazza et al., 1998). Given that this study is the first of its kind, Taken together, pica behaviour can likely serve we decided to exclusively focus on examin- multiple functions for the individual, making it ing the experiences of support workers in the particularly difficult for caregivers and staff to field who have the most adequate experience isolate the variables maintaining it in order to implementing strategies to manage the behav- design effective interventions. iour. Therefore, we sought the perspectives of staff from both institutional and local com- Interventions for pica are predominantly munity settings in the province to compare behavioural approaches that range from the and contrast their experiences and approaches. least (e.g., sensory interventions, non-contin- The inclusion of institutional staff was neces- gent presentation of food/attention, discrimin- sary given their greater exposure and exper- ation training, differential reinforcement) to the tise in managing pica in adults with ID (as most (response blocking, overcorrection, aver- pica is rarer in the community). In addition to sive substances, negative practices, self-pro- providing information useful for developing tection devices, and physical restraint) intru- guidelines and policies related to supporting sive methods (Burke & Smith, 1999; McAdam, persons with pica, this study will further eluci- Sherman, Sheldon & Napolitano, 2004), though date what skills and knowledge will be needed psychotropic medication (Jawed, Krishnan, by community staff and families to manage Prasher & Corbett,1993; Singh, Ellis, Crews & and improve the quality of life of individuals Singh, 1994) and nutritional supplements (Bugle with pica in community settings, given the & Rubin, 1993; Lofts et al.,1990; Pace & Toyer, recent deinstitutionalization in the province of 2000) are also used. Though these measures Ontario. Seeking the perspectives from family aim to ensure the safety of the person, they also members and the individuals with ID and pica jeopardize the person’s quality of life (Burke & themselves is a future next step to this research. Smith, 1999; Stiegler, 2005) in that they reduce opportunities for social and recreational activi- ties, and may serve to maintain pica over time Method as the individual is exposed to less stimulation. In this section, a description of the participants, In addition to an overall lack of research on sampling procedure, data collection and analy- successful interventions for the treatment of sis are detailed. pica, the nature of the support needs of adults with ID with pica is also unclear. There are Participants no studies that have specifically investigated the perspectives of support staff in managing The institutional focus group comprised four the behaviour, or the ways in which they sup- male staff from a single institution, all of who port persons with pica on a day-to-day basis. had worked there for an average of 24 years Therefore, the literature is silent on some of (range of 19 to 29 years). Six front-line staff (5 the more “human” aspects of the challenges females, 1 male) from four community agen- of working with this unique subpopulation. cies in southwestern Ontario participated in Understanding how pica is managed from the the community focus group; all were full-time perspectives of support staff is an important, residential counsellors directly responsible for if not, crucial, aspect of identifying the factors the day-to-day support of adults with ID and that promote and hinder its management. had been working in the field for about 5 years (range 3 to 8 years). Through previous research The main purpose of this qualitative study was projects and initiatives, the researchers had to understand, from the support worker’s per- previous work experience with two of the par- spective, the experiences of supporting persons ticipating organizations, though not with the

JoDD Staff Perspectives on Supporting Persons with Pica 37 staff personally. The discrepancy of the num- about participation. Among the nine commun- ber of years worked between institutional and ity agencies contacted, two did not support cli- community among staff participants is repre- ents with pica. Of the seven remaining eligible sentative of the current personnel practices in agencies, four agreed to participate (57%). Only each service setting in the province prior to the one of the three institutions participated (33%); institutions closing. In fact, having 20 or more this institution supported a relatively large years of experience was not uncommon among number of persons with pica. All participants institutional staff in the small communities in provided informed consent. which the institutions were located; sometimes generations of family members worked at the Focus groups were chosen as the primary means institution, and many were considered ‘family’ to collect information about the perceptions of to the residents of the institution themselves. support workers for several reasons. They can provide rich data through direct interaction Due to difficulties recruiting staff with relevant between the researcher and participants, and experience in community settings, as well as participants are able to build on one another’s logistical factors (i.e., time, geography), a sam- comments about an issue that little is known ple size of ten was used. Given the nature of the about. When contrasted with one-to-one inter- study, a sample size of ten is deemed sufficient views, the group dynamics in focus groups can to learn about the main issues and perceptions actually enhance the type and range of ideas and important to managing pica (Kreuger, 1994). feelings that individuals share about a certain topic through the social interaction of the group Procedure (Thomas, MacMillan, McColl, Hale & Bond, 1995). Due to time constraints and logistics, it Although pica is a significant problem and is was deemed more efficient to assemble staff into found with much greater frequency among two homogeneous focus groups (i.e., community persons with ID, it is still experienced by and institutional staff). While most experts sug- only a small minority of that population. gest that one should run enough focus groups Consequently, the number of developmental until a clear pattern emerges and subsequent services staff with the relevant support experi- groups produce only repetitive information ence is also quite small, particularly in the com- (theoretical saturation) (Krueger, 1994), this munity where this type of behaviour is less fre- study was limited to a single focus group for quent. This lower rate of occurrence in the com- each of the two groups. Each focus group lasted munity is due to the fact that, historically, most approximately two and a half hours. individuals with ID who exhibited severe and persistent pica behaviour into adulthood were Both focus groups were conducted by the first institutionalized. Given the rarity of pica, we author. A semi-structured focus group inter- used purposive sampling to obtain participants view guide was used to provide general dir- from institutional and community settings who ection for the focus group discussions (see had the relevant experience and expertise with Appendix). Although the questions were deter- managing pica. As such, we acknowledge that mined in advance, the researcher had the flex- our sample is not representative. ibility to question and probe ideas that arose, using a conversational style. Reflective notes Information letters were first sent to each of the were taken after each focus group session by three remaining institutions in the province the first author to record first impressions, (prior to their closure), as well as to the nine thoughts, and feelings regarding the focus largest community organizations in south- group. Participants in both the institutional western Ontario; these were later followed up and community focus groups were engaged with telephone calls. Managers from the com- and open about discussing their experiences. munity agencies and coordinators from each of In fact, many were relieved to find out that the institutions were asked to approach their other staff persons were experiencing similar staff with the relevant experience with a brief challenges supporting persons with pica. They description of the project and to provide infor- not only benefitted from feeling less alone but mation on how to contact the first author if they also heard alternative ways to prevent and they wished to participate or had any questions manage pica from other group members.

v.17 n.2 Ashworth & Martin 38

The focus groups were audio recorded by the edge, inadequate resources, and person’s level first author (with participants’ permission) of function). Excerpts from the focus groups are and transcribed verbatim by a professional included to illustrate each of the themes, mak- transcriptionist to ensure objectivity. Ethics ing use of the participants’ own words. approval was obtained from the University of Waterloo’s Research Ethics Board. Successful Support Strategies

Analysis Prevention

The focus group transcripts were analyzed Prevention was the most consistently reported by the first author and two undergradu- intervention used to manage pica behaviour ate research assistants and coded to develop in both settings and was felt to be the most themes or categories. Two coding strategies effective. Prevention efforts discussed related were used: open and axial coding (Strauss, to altering the environment and engaging indi- 1987). Coding ceased when no new themes viduals in other activities. Altering or “pica- emerged from the data. The constant com- proofing” the living environment (i.e., remov- parative method was used to compare data on several different levels (e.g., comparison of ing or locking up potential pica items, sweep- categories and themes, responses between par- ing floors and cleaning up) was brought up by ticipants, and responses across settings). Final all staff as a way of creating a safe environment data analysis involved the interpretation of that also helped reduce the use of more intru- the patterns and themes. The credibility of the sive strategies: data was established by the inclusion of mul- tiple data sources – i.e., the focus group data “I’d say we’ve gotten rid of three quarters of the and descriptive, reflective, and analytic notes. restraint use for pica just through prevention.” Alternative explanations or categories were also followed up and considered. In addition, These pica-proofing routines appear to be the first author also looked for, reported, and internalized by both institutional and commu- explained negative cases, or cases that did not nity staff to such an extent that they became fit with the established coding (Patton, 2002). automatic. Many staff reported that they wor- To verify the coding scheme, random checks ried about the safety of the person(s) they sup- of the data were performed independently by ported (that it was always in the back of their the two undergraduate assistants. Participants mind) and whether they had locked up every- were also asked to verify the accuracy of the thing and checked the environment while they findings and interpretations; the majority of the were on shift and, often times, after their shift: participants indicated that they agreed with the final themes (two did not respond). “You worry. You constantly double guess, did I lock all the cupboards? Did I check, you know, Data were analyzed according to the constant under his bed? So your head’s wondering, did comparative method (Strauss & Corbin, 1990). you do everything you needed to do in order to Although this method is commonly employed try and keep him safe?” in grounded theory, the current study does not constitute a grounded theory study. Rather, it Keeping individuals occupied and engaged in aimed to gather rich description from support alternative activities is another tool that staff staff on their experiences supporting persons in both settings found helpful in preventing with ID and pica. the occurrence of pica. The majority of staff spoke of providing safe sensory activities (e.g., oral-motor sensory items called chewlery or Findings theratubes, fidget toys for their hands,) and rec- reation programs (e.g., provision of preferred Six themes emerged related to support staffs’ activities or objects, outings) for the individuals experiences: three related to successful strate- to occupy themselves with. gies (i.e., prevention, knowing the individual, and support networks), and three to barriers to supporting persons with pica (i.e., lack of knowl-

JoDD Staff Perspectives on Supporting Persons with Pica 39

Knowing the Individual institution had the most comprehensive team of professionals on-site (e.g., behavioural con- Staff’s familiarity with the individual(s) they sultants, physicians, nurses, occupational thera- support was another important factor to suc- pists, dietician, and a speech-language patholo- cessfully supporting persons with pica. In gist), as well as specialized resources (e.g., for particular, knowledge in three areas was high- providing pica-friendly clothing and environ- lighted: the person’s preferred activities or ments). Staff in both settings believed that it items, the frequency and severity of the pica was their ability to meet and work together as (both past and present), and the unique way a team that was the most beneficial in develop- each individual responds to different types ing successful intervention strategies. of interventions. For example, all institutional staff and two community staff reported that In contrast, the availability of health and clini- although mechanical restraints are intrusive, cal support varied across different community they must be used in some instances: agencies; about half of community staff were not aware of specialized clinical services. When “With one specific individual that we support, clinical services were available, half of the com- it (pica) almost cost him his life. One more sur- munity staff reported experiencing difficulty gery, that’s it for him. He’s had three surgeries dealing with physicians who often lacked the to remove objects and pieces of his colon were knowledge about the medical symptoms and perforated. And so that’s why a helmet with a complications of pica. On the other hand, those face mask is a drastic measure but this is to save who reported positive relationships with the his life. So we can save lives.” person’s physician reported that referrals and medical services (e.g., regular ultrasound or Therefore, in this case, knowledge of the per- X-ray examinations of the person’s abdomen for son’s history in terms of severity and conse- foreign objects) had been facilitated. That said, quences of pica and their response to previ- in the community, family members and agency ous interventions helped staff make the best staff were reported to be the heart of the sup- decision about the type of intervention to put port network. in place to ensure the person’s safety. By hav- ing good clinical knowledge about the per- For this reason, staff consistency figured prom- son’s pica, all staff said that they felt more inently in the staff’s reflections on facilitating able to prevent and manage the behaviour. For the management of pica in the community. It example, in the institutions, staff documented was reported that a consistent approach to the preferred pica items for each of their resi- managing pica was facilitated by having good dents, which in turn increased staff’s aware- staff relations among all staff (including man- ness of what they needed to look for during agement), open communication, and protocols pica sweeps. This in turn, reduced not only in place – all of which are made easier through the frequency of pica but also the use of more stability and consistency of staff. The value of reactive and intrusive approaches (such as consistency was emphasized by one staff in the using physical blocking procedures when an institution who said: individual brings inedibles to their mouth), which can lead to negative and coercive inter- “Consistency is probably one of the most impor- actions between staff and the individual. tant parts. That’s one of the main reasons we developed a protocol system, because if one Support Network staff had one feeling about something and I had another and another staff had another one, well depending on who’s there, I may manage a Another factor identified by staff to be helpful behaviour in a different way. So we have found in managing pica was having a good support the need for consistency. So, especially for pica, network. “Support network” refers to the group this way it lets everybody off the hook. Like of family, staff, and other professionals who are [another staff] and I don’t have to get in to a invested in the person’s well-being. Professional disagreement about my approach versus his. It support was reported to be variable between saves a lot of aggravation.” settings and across community agencies: the

v.17 n.2 Ashworth & Martin 40

Consistency proved to be even more challen- “It’s not pleasant to have people staring at us ging when staffing arrangements were taken because he’s wearing a helmet. So find out why into account. Community staff commented on he’s wearing a helmet. Don’t just stare at him. how conflict between full-time and part-time Don’t just point at him. Don’t laugh at him. We’ve staff and staff turnover negatively impacted the been really lucky when we take them to restau- ability to support the person, further showing rants. But some restaurants, not the staff but the how fragile the person’s support network can people eating, they look at us like were some- be. Staff in the institution, too, expressed that thing out of this world. And that feeling, I don’t maintaining good working relationships with like it. And I’m pretty sure that they (individuals co-workers and mangers was integral but they she supports) don’t like it either.” reported less work conflict compared to staff in the community. Therefore, staff tended to remain at the person’s home, or go on “safe” outings (e.g., familiar res- Barriers to Implementing Successful taurants or parks), in order to avoid embarrass- Support Strategies ment or negative reactions from the public. This further prevents the individual from engaging in the community and limits the community’s Lack of Knowledge exposure to pica, thus further contributing to their lack of knowledge. A common thread among the responses of both community and institutional staff was the lack of knowledge among staff, family, and Inadequate Resources the community at large regarding the causes of pica and its treatment. Lack of knowledge of Inadequate staffing and costs were discussed this behaviour was felt to be due, in part, to the by staff in relation to barriers to successfully paucity of information available: supporting persons with pica. Inadequate staff- ing, though mentioned by staff in both com- “I’ve checked the internet quite often and there’s munity and institutional settings, really reson- not a lot really that helps aside from what we ated with staff at the institution. In the institu- already do in the way of prevention.” tional setting, the staff-to-client ratio was about 2:8, compared to 2:3 or 2:6 in the community. Further, the majority of community staff had Due to the large numbers of individuals with no knowledge of the services available to help pica in the institutional setting and the relative- them. Even when aware, there remained uncer- ly fewer numbers of staff, a collective approach tainty about how to connect with specialized to managing pica was often used instead of clinical services (e.g., behaviour therapists, psy- individually-based solutions (e.g., pica wards chologists). A number of community staff sug- and keeping the living environment pica gested that agencies could collaborate with one friendly). A number of negative consequences another and share expertise and experiences: of inadequate staff support were reported, including reduced opportunities for inclusion “It would be helpful if we had more information in recreational activities and community out- about what pica is. What works for one indi- ings and the use of more intrusive measures, vidual might not work for another one. But if such as the use of mechanical restraints: we had a hundred individual cases, from those hundred probably two or three would help my “They just can’t have fun in the yard because of individual. So I would like more information, in the danger of grass and leaves and rock and the form of examples.” twigs. So their ability to sort of become involved in things is absolutely one hundred percent The community at large is also not educated dependent on the availability of staff to take on pica and its complications. The majority of them. So that whole ability to choose and be community staff expressed feelings of embar- independent is gone.” rassment about their client’s behaviour when in public. As a consequence, staff person were, at As well, all staff noted that increased super- times, reluctant to take the individual out in the vision is needed because of the often hidden community: nature of the behaviour and concurrent behav-

JoDD Staff Perspectives on Supporting Persons with Pica 41 iours. For example, increased supervision More than half of the staff in both settings per- is required for persons known to hide pica ceived that, apart from environmental controls, items for later consumption and for those who there really were few alternatives for managing engage in self-injurious, destructive, or aggres- pica because of the person’s lower functioning sive behaviour. level.

Staff in the institutional setting indicated that creating pica-friendly environments was Discussion expensive. Modifications range from the provi- sion of specialized furnishings that are difficult This study was conducted to understand the to rip or tear apart, to putting metal around perspectives of staff supporting persons with the edges of doors and windowsills, and coat- ID and pica. It also sought to better under- ing the walls with cladding (a special surface stand what strategies were found to be useful coating that renders the dry wall inaccessible). in reducing the impact of pica behaviour on Costs were also compounded by the fact that individuals, and what barriers existed to imple- individuals with pica may engage in destruc- menting those strategies. The results provide tive behaviour (e.g., tearing furniture to con- important information for both those planning sume the fabric). In contrast, community staff clinical services for this unique population and did not mention cost as a factor in maintaining for those facing the significant challenge of a pica-friendly environment. helping individuals with pica on a day-to-day basis. Functioning Level of the Individual Prevention, knowing the individual, and sup- The focus groups revealed that many staff felt port networks emerged as helpful strategies. frustrated in supporting individuals with pica Prevention, in the form of environmental con- because of their lower functioning level (i.e., trols and staff monitoring, was the most com- severe/profound cognitive impairment), which mon strategy used, though provision of alterna- made it difficult for them to understand the tive stimulation was also employed. Knowing dangers of pica or learn more adaptive behav- the person’s preferences and history of pica iours. For example: behaviour was also essential to developing individualized strategies that are appropriate “She doesn’t have any verbal communication to the person. A strong support network was skills. So, I do tell her it’s dangerous or I do try also identified as a key factor in facilitating and tell her the reasons why but I’m not really both access to and sharing of information and sure if she understands.” professional support, as well as in providing consistency to the individual being supported. All of the institutional staff and about half of There were also a number of specific challeng- the community staff also expressed frustra- es to supporting persons with pica reported by tion at the fact that the individuals they sup- staff. The staff often spoke of frustration related ported appeared to have very limited interests, to inadequate staff support, the impact of lower making it difficult to engage them in alterna- functioning levels, and general lack of knowl- tive and safe activities. Limited communica- edge about pica. Inadequate staff support was tion skills also contributed to the difficulties a concern in both settings. In the institution, associated with knowing whether the person it often led to the use of more intrusive inter- was experiencing discomfort or more serious ventions and reduced social and recreational pain or medical symptoms from the ingestion opportunities for individuals with pica. The of inedibles as persons are often not able to lack of understanding about pica, its causes and articulate how they are feeling physically, nor consequences, hindered staff in accessing infor- whether they have in fact ingested something: mation and trying new approaches. Staff also reported that the general lack of understand- “But how do you know? Like we didn’t know ing of this behaviour by the general public that the hairball was forming until she was very, sometimes caused feelings of embarrassment very ill. So how do you know they’re not getting for staff and individuals with pica while in the obstructed bowels? community. The lower functioning level of the

v.17 n.2 Ashworth & Martin 42

persons with pica contributed to difficulty in Persons with ID who engage in pica also tend finding activities and interests among indi- to engage in other forms of challenging behav- viduals with more severely impaired cognitive iours (Emerson et al., 2001; Sigafoos, Arthur & and communicative abilities; it also prevented O’Reilly, 2003), which again leads to the need staff from trying new strategies for managing for intensive supervision and individualized pica (that may have required more active par- interventions. This is consistent with the cur- ticipation than the person was capable of). rent thinking on treating behavioural problems (Rush & Allen, 2000). Researchers and practi- The themes that emerged from this study pro- tioners need to investigate the function of the vide insight into the support needs of indi- behaviour, try different approaches, and con- viduals with pica, as well as demonstrate the sult with people that know the individual best, complexities and barriers associated with their such as staff and family. By having an adequate support. Moreover, the findings contribute to support network in place, staff persons have an understanding of the nature of pica behav- the time to get to know the individual and use iour. It is clear from the staff’s perspective that, that knowledge to prevent and manage the overall, there is little known about how best individual’s pica. to support persons with pica. However, a new understanding of the facilitators and barriers At present there appears to be little interagency may inform what adjustments might be made communication and collaboration in dealing to the service system to enhance supports for with individuals with ID with multiple, complex adults with pica. needs in the community. Consequently, there are missed opportunities for sharing expertise, Again, prevention was the predominant experiences, and successes that further perpet- approach to managing pica in both settings, uates the lack of knowledge among staff and where modifications to the living environ- consequent opportunities for persons with pica. ment were costly. While pica is more frequent Interagency collaboration would not only help among persons in institutional settings, dein- to bring together the skills and experience of stitutionalization is underway or completed in staff, it might also help to reduce the feelings many jurisdictions in Canada and around the of isolation and frustration expressed by staff. world. Because of the costs and levels of super- While barriers still exist in terms of interagen- vision associated with creating pica-friendly cy collaboration, important strides in this area environments, there is danger that efforts will have been made. For example, networks of spe- concentrate on creating homes specifically for cialized support and video-conferencing have persons with pica; therefore creating a situation been created to enhance community agency in which the presence of this behaviour over- access to professionals (MCSS, 2006). However, shadows the person’s preferences and needs this network will only be effective if all par- when planning living arrangements. ties involved (including the executive directors, board of directors, managers, and staff of each Adequate staffing levels are key, not only to developmental service organization) know that ensuring the person’s safety, but also to ensur- the service exists, and how to access it. ing that they have the opportunity to engage in community-based social, recreational, and pro- This study had several limitations which should ductive activities of interest. Further, staff have be taken into consideration when interpreting found that recreational activities and engage- the findings. To begin with, only ten staff partic- ment reduces pica. Staff’s frustration in finding ipated in the focus groups; a larger sample might alternative activities for individuals with pica have enabled the researcher to further devel- also highlights the need for training related op the themes. Although the transcripts were to identifying the preferences of person’s with extensively reviewed until it was determined more severe levels of cognitive impairment. that no new information could be gleaned, it This training is especially important because is likely that with a much larger and diverse such individuals are often dependent on others sample from different regions of the province to participate in activities (Jones et al., 1999). it would have potentially revealed additional themes. Similarities and differences in support needs and practices across the province could

JoDD Staff Perspectives on Supporting Persons with Pica 43 be better articulated. As such, an important next Key Messages from This Article step in this program of research will be to repli- cate the study with a greater diversity of staff in People with disabilities: People who have pica other community agencies in Ontario as well as sometimes eat things that they are not supposed other jurisdictions (both rural and urban areas). to, like paper, string, or hair, and this can make However, it is important to note that the num- the person very sick. There are a lot of ways that ber of front-line staff with experience support- staff can help people with pica, but there are ing persons with pica continues to be small, as also a lot of things standing in their way. It is pica is a low incidence behaviour and very com- important to help staff so that they can improve plex to support. Second, the study was limited the quality of life of persons with pica. to the perspectives of support staff supporting adults with ID and pica. In the future, similar Professionals: Helpful strategies for managing studies should seek input from adults with pica pica involve prevention in the form of super- themselves and their family members, as well as vision and environmental controls, knowing from administrators of community agencies and the individual, and having good support net- policy makers in developmental services. Future works. As well, interagency collaboration is studies should also conduct focus groups with necessary not only to help bring the skills and children or adolescents with ID and pica and experiences of staff together but also to reduce their family members, so that their perspectives feelings of isolation and frustration staff often can be understood and taken into consideration report. to assist with a lifespan approach to planning supports and practice guidelines for persons Policy makers: Individuals with intellectual dis- with ID and pica. ability and pica have distinct and intensive sup- ports needs. Policies that promote better clinical Conclusion services are required to help improve their lives. To the best of our knowledge, this is the first References study to examine the perspectives of front-line staff persons who support adults with ID and Ali, Zainab. (2001). Pica in people with pica. The findings validate the notion that per- intellectual disability: A literature sons with ID and pica have distinct support review of aetiology, epidemiology and needs, and that better services are needed (espe- complications. Journal of Intellectual and cially clinical services) to improve the lives of Developmental\Disability, 26(2), 205–215. individuals. This information is very important Applegate, H., Matson, J. L., & Cherry, K. in the context of the closure of institutions in E. (1999). An evaluation of functional Ontario, Canada, and abroad. Full inclusion of variables affecting severe problem persons with ID in the community will require behaviors in adults with mental that all community-based professional services retardation by using the questions about (e.g., physicians, psychologists, behavioural behavioral function scale (QABF). Research therapists, occupational therapists, etc.) under- in Developmental Disabilities, 20(3), 229–237. stand the full range of needs of this population American Psychiatric Association. (2000). – including those related to everyday living, Diagnostic and statistical manual of mental health, mental health, and behaviour. disorders, 4th ed., Text Revision). Washington, DC: American Psychiatric Association. Ashworth, M., Hirdes, J., & Martin, L. (2009). Acknowledgements The social and recreational characteristics of adults with intellectual disability and The authors wish to thank Dr. Alison Pedlar for pica living in institutions. Research in her support, insight, and helpful suggestions in Developmental Disabilities, 30, 512–520. this research. Special thanks to the staff per- Ashworth, M., Martin, L., & Hirdes, J. (2008). sons who shared their personal stories about Prevalence and correlates of pica among their experiences of supporting adults with adults with intellectual disability in intellectual disabilities and pica. institutions. Journal of Mental Health Research in Intellectual Disabilities, 1(3), 176–190.

v.17 n.2 Ashworth & Martin 44

Borthwick-Duffy, S. A. (1994). Epidemiology LeBlanc, L. A., Piazza, C. C., & Krug, and prevalence of psychopathology in M. A. (1997). Comparing methods for people with mental retardation. Journal of maintaining the safety of a child with Consulting and Clinical Psychology, 62, 17–27. pica. Research in Developmental Disabilities, Bugle, C., & Rubin, H. B. (1993). Effects of a 18, 215–220. nutritional supplement on coprophagia: Lofts, R. H., Schroeder, S. R., & Maier, A study of three cases. Research in R. H. (1990). Effects of serum zinc Developmental Disabilities, 14, 445–456. supplementation on pica behavior of Burke, L., & Smith, S. L. (1999). Treatment of persons with mental retardation. American pica: Considering least intrusive options Journal on Mental Retardation, 95(1), 103–109. when working with individuals who Mace, F. C., & Knight, D. (1986). Functional have a developmental handicap and live analysis and treatment of severe pica. in a community setting. Developmental Journal of Applied Behavior Analysis, 19, Disabilities Bulletin, 27(1), 31–46. 411–416. Cooper, S. A., Smiley, E., Morrison, J., Matson, J. L., & Bamburg, J. W. (1999). Williamson, A., & Allan, L. (2007). Mental A descriptive study of pica behavior in ill-health in adults with intellectual persons with mental retardation. Journal disabilities: Prevalence and associated of Developmental and Physical Disabilities, 11, factors. The British Journal of Psychiatry, 190, 353–361. 27–35. Matson, J. L., Mayville, S. B., Kuhn, D. E., Danford, D. E., & Huber, A. M. (1982). Pica Sturmey, P., Laud, R., & Cooper, C. (2005). among mentally retarded adults. American The behavioral function of feeding Journal of Mental Deficiency, 87, 141–146. problems as assessed by the questions Danford, D. E., Smith, J. C., & Huber, A. M. about behavioral function (QABF). Research (1982). Pica and mineral status in the in Developmental Disabilities, 26, 399–408. mentally retarded. The American Journal of McAdam, D. B., Sherman, J. A., Sheldon, J. B., Clinical Nutrition, 35, 958–967. & Napolitano, D. A. (2004). Behavioral Decker, C. J. (1993). Pica in the mentally interventions to reduce the pica of persons handicapped: A 15-year surgical perspective. with developmental disabilities. Behavior Canadian Journal of Surgery, 36, 551–554. Modification, 28(1), 45–72. Emerson, E., Kiernan, C., Alborz, A., Reeves, McAlpine, C., & Singh, N. N. (1986). Pica D., Mason, H., Swarbrick, R., Mason, L., in institutionalized mentally retarded & Hatton, C. (2001). The prevalence of persons. Journal of Mental Deficiency challenging behaviors: A total population Research, 30, 171–178. study. Research in Developmental Disabilities, Ministry of Community and Social Services 22, 77–93. (2006). Adults with a developmental disabilities Jawed, S. H., Krishnan, V. H., Prasher, V. P., & will continue to move into community settings. Corbett J. A. (1993). Worsening of pica as a Retrieved from http://www.mcss.gov.on.ca/ symptom of depressive illness in a person mcss/english/news/releases/060126.htm with severe mental handicap. British Ministry of Community and Social Services Journal of Psychiatry, 162, 835–837. (2006). Mcguinty government improves Jones, E., Perry, J., Lowe, K., Felce, D., Toogood, supports and clinical care for adults with a S., Dunstan, F., Allen, D., & Pagler, J. (1999). developmental disability. Retrieved from Opportunity and the promotion of activity http://www.mcss.gov.on.ca/mcss/english/ among adults with severe intellectual news/releases/060302.htm disability living in community residences: Pace, G. M., & Toyer, E. A.(2000). The effects The impact of training staff in active of a vitamin supplement on the pica of support. Journal of Intellectual Disability a child with severe mental retardation. Research, 43(3), 164–178. Journal of Applied Behavior Analysis, 33, Krueger, R. A. (1994) Focus Groups: A Practical 619–622. Guide for Applied Research. Thousand Oaks, Patton, M. Q. (2002). Qualitative research and CA: Sage Publications. evaluation methods. Thousand Oaks, CA: Sage Publications.

JoDD Staff Perspectives on Supporting Persons with Pica 45

Piazza, C. C., Fisher, W. W., Hanley, G. P., LeBlanc, L. A., Worsdell, A., Lindauer, S., Appendix: Interview Guide et al. (1998). Treatment of pica through multiple analyses of its reinforcing General Attitudes functions. Journal of Applied Behavior Analysis, 31, 165–189. 1 a) Now, I’d like to ask each person about Rush, A. J., & Allen, F (2000). Expert consensus their experiences of caring for an guideline series: Treatment of psychiatric individual(s) with pica? and behavioral problems in mental Probes retardation. American Journal on Mental • What happens in a good day? Retardation, 105(3), 159–228. • What happens in a bad day? Sigafoos, J., Arthur, M., & O’Reilly, M. (2003). • Ask for examples Challenging behaviour and developmental Time disability. London: Whurr Publishers. Singh, N. N., Ellis, C. R., Crews, W. D., & 2 a) How much time do you spend in daily Singh, Y. N. (1994). Does diminished activities together? dopaminergic neurotransmission increase b) What kinds of activities does the pica? Journal of Child and Adolescent person or individuals enjoy? Psychopharmacology, 4(2), 93–99. c) How much time do you spend in Stiegler, L. N. (2005). Understanding pica a day managing the person’s pica behavior: A review for clinical and behaviour? education professionals. Focus on Autism and Other Developmental Disabilities, 20(1), 27–38. Probes Strauss, A. L. (1987). Qualitative analysis for • How often does that happen? social scientists. Cambridge, NY: Cambridge • What is the staff to client ratio? University Press. Approaches for Managing Pica Strauss, A. and Corbin, J. (1990). Basics 3 a) What approaches do you use to deal of qualitative research: Grounded theory with the person’s pica? procedures and techniques. Newbury Park, CA: Sage Publications. Probes Swift, I., Paquette, D., Davison, K., & Saeed, H. • Managing the environment – the (1999). Pica and trace metal deficiencies in removal or locking up objects adults with developmental disabilities. The • Provision of safe “mouthing toys” British Journal of Developmental Disabilities, • Provision of food/drinks 45, 111–117. • Not leaving them alone or Tewari, S., Krishan, V. H. R., Valsalan, V. C., & unoccupied Roy, A. (1995). Pica in a learning disability • Blocking by use of verbal prompts hospital: A clinical survey. The British (“stop”) or physically preventing Journal of Developmental Disabilities, 41(80), them from ingesting items 13–22. • Redirection to other activities, or to Thomas, L, MacMillan, J, McColl, E, Hale, C. & food Bond, S. (1995) Comparison of focus group • Providing choices or rewards when and individual interview methodology in pica does not occur – toys, food, examining patient satisfaction with nursing access to things the person enjoys care. Social Sciences in Health, 1, 206–219. • Teaching them what is and isn’t Wasano, L. C., Borrero, J. C., & Kohn, C. S. edible (2009). A comparison of indirect versus • Punishment – oral hygiene routines experimental strategies for the assessment etc. contingent on pica of pica. Journal of Autism and Developmental • Self-protective devices Disorders, 39(11), 1582–1586. • Brief physical restraint (e.g., holding Witkowski, B. C. (1990). Pica behavior and the person’s arms at the side of their treatment of institutionalized females with body for a few seconds) developmental disabilities. Dissertation • Medications Abstracts International, 51(11), 5599 (UMI No. 9107940). continued on following page

v.17 n.2 Ashworth & Martin 46

Appendix: Interview Guide (continued)

b) What strategies work well for the Probes person? • Financial Probes • Not enough staffing • Ask for examples • Friends, other people in his/her life • Why is that? b) What challenges or barriers make it c) What strategies do not work well for the difficult to achieve better quality of life person? for persons with pica? Probes c) What problems have arisen because of • Ask for examples pica? • Why is that? Probes • Physical (medical problems) Resources • Social consequences (isolation, less 4 a) What resources do you use right now to likely to engage in meaningful help you deal with pica? activities) Probes • Strained relationships • Personal support worker • Feeling overwhelmed • Respite care (for families) d) Do you have difficulty accessing • Behavioural support plan medical or other supports, as needed? • Professional help (e.g., behavioural Please expand. therapist) • Informal supports (family, friends) Caregiver Workload 6 a) Overall, how does pica affect you as a b) What other approaches are available caregiver? Also, how does it affect other that you know about or you can access? caregivers or family members? c) Are there additional supports you desire Probes or need that would help in managing • Ask for examples pica? • Both positive and negative experiences Challenges Wrap-Up 5 a) What challenges or barriers make it difficult to reduce pica? 7 a) Is there anything else you would like to tell me about your experiences of caring for someone with pica?

JoDD