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

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