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Diabetes Care and Mental Illness: Constraining Elements to Physical Activity and Social Participation in a Residential Care Facility
Can J Diabetes 37 (2013) 220e225
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Canadian Journal of Diabetes journal homepage: www.canadianjournalofdiabetes.com
Original Research
Diabetes Care and Mental Illness: Constraining Elements to Physical Activity and Social Participation in a Residential Care Facility Ruth Lowndes RN, PhD, CDE *, Jan Angus RN, PhD, Elizabeth Peter RN, PhD University of Toronto, Lawrence S. Bloomberg Faculty of Nursing, Toronto, Ontario, Canada
a r t i c l e i n f o
a b s t r a c t
Article history: Received 1 August 2012 Received in revised form 25 February 2013 Accepted 15 March 2013
Objective: To explore barriers and constraints to physical activity, as an integral component of diabetes care, in those with serious mental illness who reside in a for-profit group home. Methods: Institutional ethnography was the approach used to explore diabetes-related care practices among 26 women in a rural residential care facility in southern Ontario. Semi-structured, in-depth interviews were conducted with residents who had diabetes as well as with care providers, field workers and health professionals. Observations and document analysis were further methods used to reveal the disjuncture between diabetes care guidelines and the actualities of living within imposed constraints of group home care. Results: The residents in this government-regulated group home were sedentary, obtaining approximately 10 minutes per day of low-intensity exercise. The overarching government interest in cost containment created a context of rationing that resulted in a lack of opportunities to exercise and fully participate in social life. Furthermore, group home policies regulated systems of safety, reporting and financial accountability, but did not promote health. Conclusions: The findings indicate an urgent need for government financial support for quality of life initiatives and amendments to group home policies that give primacy to health promotion, illness prevention and medical management of prevalent comorbid conditions such as diabetes. Ó 2013 Canadian Diabetes Association
Keywords: diabetes group home care institutional ethnography physical activity serious mental illness
r é s u m é Mots clés : diabète soins offerts en foyer de groupe ethnographie institutionnelle activité physique maladie mentale sérieuse
Objectif : Explorer les obstacles et les contraintes liés à l’activité physique, comme une composante faisant partie intégrante des soins aux diabétiques qui ont une maladie mentale sérieuse et qui résident dans un foyer de groupe à but lucratif. Méthodes : L’ethnographie institutionnelle a été utilisée comme approche pour explorer les pratiques de soins liés au diabète chez 26 femmes d’un établissement rural offrant des soins dans le sud de l’Ontario. Des entrevues en profondeur semistructurées ont été menées auprès des résidents qui avaient le diabète ainsi qu’auprès des prestataires de soins, des travailleurs sur le terrain et des professionnels de la santé. Les observations et l’analyse de document ont été les autres méthodes utilisées pour montrer l’écart entre les lignes directrices sur les soins aux diabétiques et les réalités vécues en raison des contraintes dans les soins offerts en foyer de groupe. Résultats : Les résidents de ce foyer de groupe réglementé par le gouvernement ont été sédentaires, obtenant approximativement 10 minutes par jour d’exercice de faible intensité. Les intérêts principaux du gouvernement en limitation des coûts ont créé un contexte de rationnement qui a entraîné un manque de circonstances opportunes pour faire de l’exercice et pour participer pleinement à la vie sociale. Par ailleurs, les politiques du foyer de groupe réglementent les systèmes de sécurité, la déclaration de maladie et la responsabilité comptable, mais ne promeuvent pas la santé. Conclusions : Les résultats indiquent un urgent besoin de soutien financier de la part du gouvernement pour mettre en œuvre des initiatives en matière de qualité de vie et des amendements aux politiques des foyers de groupe qui accorderont la primauté à la promotion de la santé, à la prévention de la maladie et à la prise en charge médicale des facteurs de comorbidité les plus fréquents comme le diabète. Ó 2013 Canadian Diabetes Association
* Address for correspondence: Ruth Lowndes RN, PhD, CDE, University of Toronto, Lawrence S. Bloomberg Faculty of Nursing, Toronto, Ontario M5T 1P8, Canada. E-mail address: [email protected]. 1499-2671/$ e see front matter Ó 2013 Canadian Diabetes Association http://dx.doi.org/10.1016/j.jcjd.2013.03.361
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Introduction
Methods
The aim of the study was to use qualitative methods to understand the social organization of diabetes care in a rural group home setting. Institutional ethnography (1) was used to pursue a rigorous analysis of the social arrangements and activities that shape diabetes-related care and outcomes. In institutional ethnography, three tasks are paramount to inquiry: documenting the work, identifying textually mediated discourses and mapping social relations, which are defined as people’s activities as they are coordinated with others’ activities across time and place (1). The term “work” refers to “.anything that people do that takes time, effort, and intent” (1, p. 229), such as managing a chronic illness. These everyday situated work activities are often coordinated by texts, such as guidelines or policies, that connect people to institutional processes (1). By focusing on social relations to investigate institutional processes, this method of inquiry can inform sociopolitical change (1). In this article, which represents one segment of a larger study, we focus on physical activity as a constituent of diabetes management. Although exercise is considered a key component in diabetes care (2), there is a lack of literature on the levels and types of physical activity in the seriously mentally ill, who have a high incidence of diabetes (3e5). We report findings that shed light on the current types and amount of physical activity attained in this at-risk group and the forces that constrain exercise. In Ontario, approximately 2.5% of the population, or 300 000 people, are seriously mentally ill (6), and there are 10 376 dedicated mental health beds/units (7). While diabetes affects 6% to 8% of the general population in Canada (8), people who are diagnosed with mental illness, such as schizophrenia and mood disorders, are 2 to 4 times more likely to develop diabetes due to genetic predisposition (9). This risk is heightened by the widespread use of atypical antipsychotic medications, which are associated with dramatic weight gain, the onset and worsening of diabetes and lipid abnormalities (10). There is an abundance of literature on the positive relationship between the use of second-generation antipsychotic medications and the increasing incidence and prevalence of diabetes, heart disease, overweight and obesity, hypertension and lipid abnormalities (10e15). The rate of diabetes in group homes is elevated, as reported in a community-based study of 1123 people who were being treated for schizophrenia (of which 78.7% resided in supportive housing), with 43.2% showing evidence of prediabetes or diabetes (16). Diabetes is associated with earlier mortality; lifespans may be shortened by 13 years (17). For those with serious mental illness, the lifespan is shortened by 25 years; high rates of morbidity and mortality are linked with preventable diseases, such as diabetes (18,19). There is an increased prevalence of cardiovascular risk factors, such as overweight and obesity, in this population, leading to higher rates of cardiovascular death (3). Physical activity has been demonstrated to be both feasible (4,5,20e22) and beneficial for weight loss (4,5,18,20), cardiovascular risk reduction, hypertension (20) and diabetes (18), and has also been shown to improve mood (20,22), psychosocial functioning (22) and self-esteem (5) in the mentally ill. Adults with mental illness who reside in group homes are faced with additional conditions, such as budgetary restrictions and cognitive constraints, that exacerbate risk and impede diabetes care and outcomes. Although type 2 diabetes, which accounts for 90% of the cases, is largely preventable with lifestyle modifications, such as weight loss and physical activity (23), there is little or no research that explores if and how these modifications are practised in the group home context. Such studies are needed in view of the personal costs to afflicted residents of group homes, in addition to the associated treatment costs.
Setting
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This ethnography was conducted in a for-profit rural group home for women with serious mental illness located in southern Ontario. This country location was chosen because it is one of the original Homes for Special Care (HSC) group homes. Many farmers became the first HSC home operators because they were already taking patients in on an informal basis through the Approved Homes Program, which transferred over once the HSC Program was implemented in 1964 (24). During the period of deinstitutionalization, people reacted negatively to ex-psychiatric patients living in their neighbourhoods, better known as the ‘Not in My Backyard’ (NIMBY) phenomenon (25). Thus many group homes were opened in rural settings, where they remain today. Additionally, by purposely selecting a rural group home, it was possible to explore the accessibility of transportation for medically necessary appointments and quality of life opportunities. For-profit residential care facilities provide long-term and permanent residential care for vulnerable people with mental illness who require supervision or assistance with activities of daily living (26). In Ontario, they are funded by two programs: the HSC Program (supported by the Ministry of Health and Long-Term Care) and the Domiciliary Program (jointly supported by the Ministry of Community and Social Services and local governments). The group home studied had 17 residents in the HSC Program, 8 in the Domiciliary Program and 1 resident who paid privately. Participant selection There were 26 female residents (3 were between 18 and 29 years, 4 were between 30 and 49 years, 12 were between 50 and 64 years, and 7 were 65 years and older), of whom 10 had a diagnosis of diabetes and 2 had pre-diabetes. Inclusion criteria for the residents to be interviewed were as follows: 18 years of age or over; a diagnosis of schizophrenia, bipolar disorder, schizoaffective disorder and/or another form of mental illness; a diagnosis of diabetes; and currently living in the group home. Inclusion criteria for those providing and overseeing care were as follows: experience working in or affiliation with the group home and knowledge of day-to-day processes of operating the group home. Other interviewees provided additional information about the organization of group home care, and included the home operator, 2 field workers within the HSC Program, 1 social worker within the Domiciliary Program, 1 family physician and the Social Night Coordinator. All 26 residents were invited to be involved in observational studies, along with 2 care providers, and the home operator. Data collection Ethical approval was obtained from the University of Toronto Research Ethics Board. Informed consents were read and signed by those who agreed to participate in the study. Of the 10 resident women with diabetes, 8 participated in semi-structured interviews, which were between 0.5 and 2 hours in length and focused on “work” activities, including diabetes self-care experiences and exercise. Interviews were audio recorded and transcribed verbatim; names of participants were changed for purposes of anonymity. Ethnographic observations with 25 of the residents and 2 care providers further explored routine daily activities, including diabetes care practices and lifestyle patterns, and structured weekly outings that enabled physical activity. A total of 15 observations were conducted, ranging from 1 to 8 hours in length. Detailed observational notes that were taken during and after the
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participant observations served as further data. The role of the first author was that of a participant observer, joining in activities if invited. Analysis Institutional ethnography provides a framework for inquiry into actual social processes as they unfold in particular settings and circumstances (1). The mapping of social relations starts from and always includes people in the local site of ethnographic study, but it continues to expand outward to distal organizations, such as government ministries or professional groups, that shape the problem of interest (1). The research started with the women residents who were living with diabetes, and sought to understand what their diabetes-related experiences involved and how they were shaped by intersecting, but at times contradictory, policies used to regulate group home care and diabetes care provision. The work experiences and knowledge of various providers, including practices related to exercise attainment, were also traced to discover how they connected or did not connect to others’ socially organized activities. Texts are replicable, and they contribute to standardization and coordination of professional and organizational interests when people refer to them at different times and in various locations (1). The coordinating effects of texts were analyzed by paying close attention to sequential work activities in the group home that were being organized by certain texts that were representative of institutional interests (1). The following regulatory texts contain the policies that govern group home care: the “Ministry of Health and Long-Term Care: Operating Guidelines for HSC” (2003) and the licensing documents (“Residential Home Report,” 2007, and the “Hostel Compliance Checklist,” 2008). A textual analysis of the Canadian Diabetes Association 2008 Clinical Practice Guidelines was also performed to assess suitability of this text to inform diabetes care for the mentally ill. Results It is 7:30 a.m. and the women begin entering the kitchen for breakfast. One resident is busy making toast, one is boiling eggs and another is preparing cups of water for pill taking. Once medications are given, breakfast goes quickly and by 8:30 a.m. most people are finished. Peggy has a checklist, and is busy asking residents if they are going on today’s scheduled outing. The staff member begins organizing those who are scheduled for their baths, while grabbing clean linens. Some women go back to their bedrooms, some go outside for a cigarette, while others go into the craft room. A few of the residents carry out their “jobs” and by 9:15 a.m. the floors are mopped, dishes are done and the kitchen area is quiet. At 10 a.m. I see a few women sitting watching television. In the middle of the craft room there is a leather rocking chair, where I find Mary sitting every time I visit, like today. Rose is downstairs ironing a jacket, a couple of women are on their already made beds, and a few are sitting outside smoking. At 11:30 a.m., three residents start making bologna sandwiches for lunch, and one boils water for tea. At 11:45 a.m., the bell is rung and all of the women enter the kitchen. The staff member calls out names one at a time to take pills. People eat, drop their dirty dishes in the plastic container, and then all except those cleaning up disperse from the kitchen, with some going outside to smoke. Some women catch the bus for the afternoon outing. Afterwards, I see that a few women are resting on their beds, and one is sitting at the side of her bed doing cross-stitching. In the craft room, two women are playing a card game, two are on the couch watching television and Mary is sleeping in her chair. At snack is served and the women take their respective seats for tea and cookies.
At 5 p.m., supper is served after pills are given, and before long most are finished eating. Two women do the dishes and two clean up the tables. By 5:30 p.m., a few women are sitting in the craft room in silence with the television turned off. Mary is asleep in her chair. Three women are outside talking and having a cigarette in the smoking shelter. A couple of others are outside on the deck off the kitchen smoking, and the rest of the women are in their bedrooms. At 6 p.m., I notice two women have their pajamas on and are waiting in the kitchen for an evening snack. At 7:30 p.m., the rest of the women again enter the kitchen for pills and snack, after which most go straight to bed. A few women stay up and watch a movie on Peggy’s laptop computer, and I join them on the couch. The above notes taken from observations made during different intervals were combined to describe a composite day in the lives of the residents. Between meals, morning cleaning and bathing routines, the majority of women spent most of their time sitting, in spite of ongoing attempts to keep them active. As indicated in the vignette, some women kept busy by volunteering to do household jobs, such as meal preparation, dishes, sweeping and mopping of floors. A few others also kept journals and read, one cross-stitched, another had a laptop computer and many watched television. The in-home Quality of Life or Craft Program, in which exercise was periodically fit in, was offered twice per week. Scheduled outings, such as twice weekly shopping, weekly bowling, church, Social Night dance and biweekly movies, were anticipated events that offered engagement in enjoyable pastimes for those who chose to participate but afforded a minimal amount of exercise, depending on the resident and their physical limitations. At the study setting, the women with diabetes were encouraged every day to walk, and they were aware of its importance for illness management. “I walk.sometimes down the driveway and sometimes through the house.I’m always going back and forth.from my room to different places” (Anne, resident). However, some residents chose to not participate. Mary, a middle-aged woman who had diabetes and was also considered obese, stated, “I do not do much. I just sit down in my chair.It’s in the living room.Sometimes I read, and sometimes I just listen to the music.I should be walking, but I don’t.I don’t know why.It’s just the activity itself (I don’t like).” When asked if there is anything she would like to see included in her day that would help with activity, she stated, “I would like there to be more that I do, that’s the only thing that I would like.” The majority of residents, including those with diabetes, walked slowly a total of approximately 10 minutes per day, an observation that was confirmed by the home operator. There was consensus among those overseeing care that group home residents are inactive, and for overall health and well-being they need to increase levels of activity. It was also acknowledged that residents have few high-quality opportunities to participate in social life outside the group home. “They don’t have regular family lives.They don’t work. They don’t go to school. So this just automatically answers the question (that they have more sedentary lifestyles than the general population)” (Maria, hostel worker, Domiciliary Program). Recreational, vocational and educational opportunities that would also enable involvement in the larger community were lacking. In this particular group home, all of the residents were unemployed, and as reported by the home operator, even if they found job opportunities, barriers to transportation precluded their ability to be employed. In this rural setting, the residents were not free to choose from activities, such as going to the park or joining team sports, to get active because transportation fees and applicable program costs were not provided by the government. “We promote it but.you know, one wants to join the gym, we don’t cover that cost. The bottom line is, we say, ‘Go walking, be it a short walk. Walk to the kitchen 10 times’” (Laura, field worker, HSC Program). Another field
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worker reiterated residents of group homes have few opportunities to become physically active: “When the majority of your clients are schizophrenic it’s hard to motivate them and have people being active when in the household there’s very little to do other than going from maybe couch to kitchen, to their room and back. You know you can only.encourage so much. We can’t force anybody to do anything.” (Lolly, field worker, HSC Program) Although the right to individual choice was ostensibly endorsed by those overseeing care, this shifted the responsibility to the resident for not engaging in exercise. Field workers also recognized that urban homes have more opportunities than the rural ones. This social inequity was linked directly to cost. “In the city there’s just access and availability. You know even if there’s a cost to attend a program, it’ll be quite a bit cheaper than having a very rural setting with someone wanting to go somewhere.it’s very expensive.definitely the urban settings, much cheaper all the way around” (Lolly, field worker, HSC Program). Cost containment interests shape decision making about exercise. Residents living in urban group homes are able to walk or use inexpensive public transit to access amenities and community programs. Lack of financial support creates and sustains inequities by making similar opportunities inaccessible for residents in rural settings. Canadian weather was also perceived as a constraining element to obtaining exercise in this study setting. The women tended to walk up and down the driveway because it was a paved surface. “.you’re living out in the country. You’ve got the icy conditions. You know, it’s very, very difficult to walk on that driveway in the winter” (Susan, care provider). Rose, a resident in the home, reported, “I don’t (walk outside) in the winter time because, um, subconsciously I do always have that fear of falling.” The primary location for obtaining exercise, the driveway, was off-limits for approximately 6 months of the year, due to unsafe conditions. Physical changes and a decline in mental health were reported with the increased confinement during winter months. “I find from January ‘til April you notice a massive difference in health and mental attitudes.Blood sugars go way up, the weights go way up, because they’re not getting outside” (Carol, home operator). In view of our observations and the reported concerns in many interviews, we further examined both diabetes practice guidelines and group home care documents to see how they addressed physical activity and social participation as essential components to health and well-being in this population. We discovered that government-mandated interests, as outlined in the Ministry of Health and Long-Term Care Operating Guidelines for HSC (2003), the Residential Home Report (2007) and the Hostel Compliance Checklist (2008), such as hygiene, food handling, fire safety and financial accountability, were more highly prioritized than illness prevention, medical management of comorbid conditions and health promotion activities, including physical activity. Licensing was not contingent on resident attainment of exercise, whereas other tasks needed to be completed to meet certain regulations, and priorities were necessarily set accordingly. Routine schedules included meal preparation, medication administration, medical appointments, daily home cleaning and maintenance, laundry and coordinating resident bathing as per regulations. Documentation of these activities and finances, including per diems, personal needs allowances and other sources of income, was paramount for accountability purposes. These processes kept a sense of order and efficiency, and were orchestrated to satisfy governing bodies’ policies, which focused on cleanliness, safety, financial transparency and resident basic needs (26).
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Group homes are highly regulated and monitored for compliance to policies. In addition to keeping a clean and orderly environment, home operators are responsible for residents’ safety. Monthly fire drills were carried out and documented, and a medication management system was in place as per regulations. Staff was certified in CPR, First Aid and food handling safety. Care provider time restrictions limited the ability to look beyond mandated responsibilities, as highlighted by a social worker who oversaw home operations. “We have to remember they are very busy people because they have to run the basics of the home, the food supplies, the medication, the daily cleaning, cooking, so umm this (exercise) is just above and extra added onto their daily duties” (Maria, hostel worker, Domiciliary Program). Further, financial support for staffing in group homes is extremely low, which restricted the hiring of employees. Group home operators are paid a per diem amount of $47.75 per day for each resident, of which 59% or $28.00 is allotted to administration and program support services (26, p.33). In this home, the amount was $8 000 per month less than required to meet the recommended staffing ratio of 1:7 (26). Furthermore, although an understanding of mental disabilities is recommended (26), home operators are not required to have medical backgrounds nor is the funding allotment sufficient to hire regulated health professionals. Home operators and staff are not supported financially, or through the facilitation of formal education, to prevent or manage comorbid medical conditions, such as diabetes. Hence, the home operator could not afford sufficient qualified staff to manage or supervise an exercise program. We discovered a disconnect between text-based guidelines, both in diabetes care provision and in group home care and the actualities of living with diabetes within this context. In diabetes practice guidelines, the connection is not made between mental illness and the development of diabetes, aside from indicating genetic predisposition with schizophrenia (2). Even though this is a high-risk group, with the added risk imposed by widespread use of atypical antipsychotic agents and numerous contextual constraints, the mentally ill are not recognized in the “Canadian Diabetes Association 2008 Clinical Practice Guidelines for the Prevention and Management of Diabetes in Canada” as a special population requiring added attention. In this particular group home, 20 out of the 26 women were prescribed atypical antipsychotic medications, such as clozapine and olanzapine, and the psychiatrists did not screen for metabolic side effects (Dr. P., attending physician). Within group home care guidelines, the following is stipulated: “The Home Owner/Home Staff, in cooperation with HSC Field Staff, shall be aware of programs and activities, which .promote adequate levels of fitness within their communities.Residents are encouraged to participate in activities and programs, which are of interest and appropriate to them and their level of fitness, if they so choose.The Home Owner/Home Staff, in conjunction with the HSC Field Office, shall assist residents to access resources and activities appropriate to their needs and interests, if so requested.” (26, p. 30) Responsibility is distributed to the residents to choose to become involved in community activities, and to the home operator and field workers to facilitate this process. However, there is no written commitment by the provincial or local government to provide financial support or transportation if required. This implies a low priority on these health promoting goals, as these policies cannot be actualized in view of funding restrictions. The residents voiced their desire for a simple change in routine; this modest wish requires easy access to transportation, which is unattainable in a climate of cost containment:
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“.it’s the freedom is pretty hard.We can’t get anywhere we’d like to go ‘cause of the cost, ok? And I would love to see the bus come so that we would have the chance to go downtown (to the park that has a little lake) in an afternoon and spend a couple of hours and come back.Just to go down there and walk and have a coffee, it’s just a change. That would be nice.” (Margaret, resident) This actuality contradicts a governing principle of the HSC Program that states, “The development or enhancement of life skills shall be encouraged through a range of structured basic skills developing activities, social and recreational experiences, and vocational training which reflects individual needs, desires, interests, and abilities” (26, p. 28). The HSC Program is supposed to, “.promote and enhance quality of life” (26, p. 4) and provide environments that allow residents to, “.grow and develop” (26, p. 4). Yet, isolation and lack of opportunities to engage in physical activity and other quality of life initiatives are actual outcomes of an overarching government interest in cost containment. The numerous, multifaceted restrictions to exercise as a result of imposed social constraints, including limited care provider time and expertise, climactic conditions, rural location and transportation issues, led to physical and mental health disparities in an already high-risk, vulnerable group. Discussion There is a significant disconnect between the recommended 150 minutes per week of moderate-to-vigorous physical activity (2) and the levels and amounts of exercise observed in the group home setting. The residents obtained approximately 10 minutes per day of low-intensity exercise that declined further over winter months due to weather conditions and limited ability to use the driveway as a walking path. These findings are similar to other studies that reported lower levels of physical activity in the population of mentally ill adults (3e5,20e22,27e31). In these studies, contributing personal barriers to physical activity, such as psychological and cognitive functioning (21,30,31), depressive states (21,31), low self-efficacy, medication side effects (30,31) and poor access to physical health services (28,31) or affordable, safe places to exercise (20,30,31), were acknowledged. However, this study builds on the previous research that utilized self-report data (3,27) and intervention studies (4,5,18,20,22,29) to assess exercise, by describing and contextualizing physical activity within a group home setting. This ethnographic study adds new knowledge by showing how sociopolitical forces combine to create social and material conditions that assign low priority to particular aspects of diabetes management, such as exercise attainment. Care providers and those overseeing group home operations acknowledged the residents’ sedentary lifestyle, and voiced awareness of the benefits of exercise for weight loss and glycemic control. Exercise in the form of walking was encouraged, an activity in which some of the residents did not readily engage. However, the per diem rate did not allow for the hiring of additional qualified staff to support residents to exercise, and other government-mandated work practices overrode care provider attention to the attainment of physical activity. There was also no mandate for group home providers to be knowledgeable, nor were they supported in attaining education to prevent or manage diabetes, in spite of the heightened risk for this condition. Government financial support was lacking for a) exercise initiatives and promotion of healthy living, b) transportation to community events and programs and c) quality of life initiatives that would enable full social participation. Although field workers referred to the discourse of “freedom of choice” to assign responsibility to residents for not being physically active, in actuality few options were available. In this study, we found that all of the
residents in the group home were unemployed, which coincides with the existing body of literature reporting that mentally ill adults have low income (32) and difficulty finding and maintaining employment (33). Even if employment was secured, the provincial or local governments would not pay for transportation from this rural location, making such opportunities unavailable. The physical and mental health disparities created by the above social circumstances were not addressed by the governing bodies, who maintained the stance that these are housing programs. This group was also omitted as a special population requiring added attention in the diabetes practice guidelines, and as such health providers may have been unaware of their heightened risk and how best to offer support. This study only investigated one group home, which may limit our ability to generalize these results. For example, other group home operators across Ontario may have access to low-cost fitness facilities or recreational programs that could impact the amount of exercise in which residents engage. Future research is required to determine similarities and differences among residential care facilities within these programs. However, the fact remains that the per diem amount for each resident is the same, and policies regulating group home practices are issued provincially. In conclusion, adults with serious mental illness who reside in for-profit, government-regulated group homes are faced with numerous social forces that combine to create multifaceted barriers and constraints to the prevention and management of diabetes. These findings suggest an urgent need for financial support for exercise programming and quality of life opportunities, and amendments to policies to give priority to health promotion, illness prevention and medical management, so this high-risk group can realize overall health and well-being. The linking of medical and psychiatric care in policies and in clinical practice is required to reduce health care inequalities in this vulnerable population that is at an intersection, requiring both medical and mental health care. Moreover, health care providers must recognize social inequalities faced by some groups, like the seriously mentally ill, and provide services that are sensitive to their needs. Future research is also recommended to investigate and implement exercise initiatives that are tailored to individual particularities. Author Disclosures Ruth Lowndes was financially supported during doctoral studies by the Canadian Diabetes Association, the Registered Nurses’ Foundation of Ontario, Southlake Regional Health Centre and the University of Toronto. References 1. Smith D. Institutional ethnography: A sociology for people. Lanham, MD: Altamira Press; 2005. 2. Canadian Diabetes Association Clinical Practice Guidelines Expert Committee. Canadian Diabetes Association 2008 clinical practice guidelines for the prevention and management of diabetes in Canada. Can J Diabetes 2008; 27(Suppl 2):S1e201. 3. Daumit GL, Goldberg RW, Anthony C, et al. Physical activity patterns in adults with severe mental illness. J Nerv Ment Dis 2005;193:641e6. 4. Richardson C, Avripas S, Neal D, Marcus S. Increasing lifestyle physical activity in patients with depression or other serious mental illness. J Psych Pract 2005; 11:379e88. 5. Ohlsen R, Peacock G, Smith S. Developing a service to monitor and improve physical health in people with serious mental illness. J Psych Ment Health Nurs 2005;12:614e9. 6. Government of Ontario. Annual report of the office of the provincial auditor of Ontario. Toronto, ON: Queen’s Printer for Ontario; 2004. 7. Centre for Addiction and Mental Health. Turning the key: Assessing housing and related supports for persons living with mental health problems and illness. http://www.mentalhealthcommission.ca/SiteCollectionDocuments/AtHome-Ch ezSoi/TurningTheKey_Full_ENG_NEW.pdf; 2012. Accessed April 27, 2012. 8. Canadian Diabetes Association. The prevalence and costs of diabetes. www. diabetes.ca/Section_About/prevalence.asp; 2006. Accessed January 2, 2007.
R. Lowndes et al. / Can J Diabetes 37 (2013) 220e225 9. Dombrovski A, Rosenstock J. Bridging general medicine and psychiatry: Providing general medical and preventive care for the severely mentally ill. Curr Opin Psychiatr 2004;17:523e9. 10. American Diabetes Association. Consensus development conference on antipsychotic drugs and obesity and diabetes. Diabetes Care 2004;27:596e601. 11. Henderson D, Cagliero E, Gray C, et al. Clozapine, diabetes mellitus, weight gain, and lipid abnormalities: A five-year naturalistic study. Am J Psychiat 2000;157:975e81. 12. Citrome L, Jaffe A, Levine J, Allingham B, Robinson J. Relationship between antipsychotic medication treatment and new cases of diabetes among psychiatric inpatients. Psychiatr Serv 2004;55:1006e13. 13. Amiel JM, Mangurian CV, Ganguli R, Newcomer JW. Addressing cardiometabolic risk during treatment with antipsychotic medications. Curr Opin Psychiatr 2008;21:613e8. 14. Newcomer J. Antipsychotic medications: Metabolic and cardiovascular risk. J Clin Psychiatry 2007;68(Suppl 4):8e13. 15. Woo V, Harris S, Houlden R. Canadian Diabetes Association position paper: Antipsychotic medications and associated risks of weight gain and diabetes. Can J Diabetes 2005;29:111e2. 16. Voruganti LP, Punthakee Z, VanLieshout RJ, et al. Dysglycemia in a community sample of people treated for schizophrenia: The Diabetes in Schizophrenia in Central-south Ontario (DiSCO) study. Schiz Res 2007;96:215e22. 17. Canadian Diabetes Association Clinical Practice Guidelines Expert Committee. Canadian Diabetes Association 2003 clinical practice guidelines for the prevention and management of diabetes in Canada. Can J Diabetes 2003; 27(Suppl 2):S1e140. 18. Teachout A, Kaiser S, Wilkniss S, Moore H. Paxton House: Integrating mental health and diabetes care for people with serious mental illnesses in a residential setting. Psychiat Rehab J 2011;34:324e7. 19. National Association of State Mental Health Program Directors (NASMHPD) Medical Directors Council. Morbidity and mortality in people with serious mental illness. www.dsamh.utah.gov/docs/mortality-morbidity_nasmhpd.pdf; 2006. Accessed October 25, 2012. 20. Daumit G, Dalcin A, Jerome G, Young D, Charleston J, Crum R, et al. A behavioural weight-loss intervention for persons with serious mental illness in psychiatric rehabilitation centers. Int J Obes 2011;35:1114e23.
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21. Jerome G, Rohm Young D, Dalcin A, et al. Physical activity levels of persons with mental illness attending psychiatric rehabilitation programs. Schizophr Res 2009;108:252e7. 22. McDevitt J, Wilbur J, Kogan J, Briller J. A walking program for outpatients in psychiatric rehabilitation: Pilot study. Biol Res Nurs 2005;7:87e97. 23. Ontario Ministry of Health and Long-Term Care website. Diabetes Facts. http:// www.health.gov.on.ca/english/public/pub/diabetes/diabetes.html. Accessed September 13, 2009. 24. Quinsey R. Homes for Special Care Program. Toronto, ON: Government of Ontario; 1985. 25. Piat M. The NIMBY phenomenon: Community residents’ concerns about housing for deinstitutionalized people. Health Soc Work 2000;25:127e38. 26. Ministry of Health and Long-Term Care. Operating Guidelines for Homes for Special Care. http://www.health.gov.on.ca/english/providers/pub/hsc/hsc_ manual; 2003. Accessed September 24, 2009. 27. Xiong G, Ziegahn L, Schuyler B, Rowlett A, Cassady D. Improving dietary and physical activity practices in group homes serving residents with severe mental illness. Prog Community Health Partnersh 2010;4:279e88. 28. Vreeland B. Bridging the gap between mental and physical health: A multidisciplinary approach. J Clin Psychiat 2007;68(Suppl 4):26e33. 29. Knol L, Pritchett K, Dunkin J. Institutional policy changes aimed at addressing obesity among mental health clients. Prev Chronic Dis 2010;7:1e7. 30. McDevitt J, Snyder M, Miller A, Wilbur J. Perceptions of barriers and benefits to physical activity among outpatients in psychiatric rehabilitation. J Nurs Scholarsh 2006;38:50e5. 31. Vancampfort D, De Hert M, Helvik Skjerven L, et al. International organization of physical therapy in mental health consensus on physical activity within multidisciplinary rehabilitation programmes for minimising cardio-metabolic risk in patients with schizophrenia. Disabil Rehabil 2012; 34:1e22. 32. Wilton R. Putting policy into practice? Poverty and people with serious mental illness. Soc Sci Med 2004;58:25e39. 33. Canadian Mental Health Association and the Centre for Addiction and Mental Health. Employment and education for people with mental illness. http://www.camh.net/Public_policy/Public_policy_papers/employment_di scussion_paper_jan10.pdf; 2010. Accessed on May 20, 2012.
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Canadian Journal of Diabetes journal homepage: www.canadianjournalofdiabetes.com
Original Research
Diabetes Care and Mental Illness: Constraining Elements to Physical Activity and Social Participation in a Residential Care Facility Ruth Lowndes RN, PhD, CDE *, Jan Angus RN, PhD, Elizabeth Peter RN, PhD University of Toronto, Lawrence S. Bloomberg Faculty of Nursing, Toronto, Ontario, Canada
a r t i c l e i n f o
a b s t r a c t
Article history: Received 1 August 2012 Received in revised form 25 February 2013 Accepted 15 March 2013
Objective: To explore barriers and constraints to physical activity, as an integral component of diabetes care, in those with serious mental illness who reside in a for-profit group home. Methods: Institutional ethnography was the approach used to explore diabetes-related care practices among 26 women in a rural residential care facility in southern Ontario. Semi-structured, in-depth interviews were conducted with residents who had diabetes as well as with care providers, field workers and health professionals. Observations and document analysis were further methods used to reveal the disjuncture between diabetes care guidelines and the actualities of living within imposed constraints of group home care. Results: The residents in this government-regulated group home were sedentary, obtaining approximately 10 minutes per day of low-intensity exercise. The overarching government interest in cost containment created a context of rationing that resulted in a lack of opportunities to exercise and fully participate in social life. Furthermore, group home policies regulated systems of safety, reporting and financial accountability, but did not promote health. Conclusions: The findings indicate an urgent need for government financial support for quality of life initiatives and amendments to group home policies that give primacy to health promotion, illness prevention and medical management of prevalent comorbid conditions such as diabetes. Ó 2013 Canadian Diabetes Association
Keywords: diabetes group home care institutional ethnography physical activity serious mental illness
r é s u m é Mots clés : diabète soins offerts en foyer de groupe ethnographie institutionnelle activité physique maladie mentale sérieuse
Objectif : Explorer les obstacles et les contraintes liés à l’activité physique, comme une composante faisant partie intégrante des soins aux diabétiques qui ont une maladie mentale sérieuse et qui résident dans un foyer de groupe à but lucratif. Méthodes : L’ethnographie institutionnelle a été utilisée comme approche pour explorer les pratiques de soins liés au diabète chez 26 femmes d’un établissement rural offrant des soins dans le sud de l’Ontario. Des entrevues en profondeur semistructurées ont été menées auprès des résidents qui avaient le diabète ainsi qu’auprès des prestataires de soins, des travailleurs sur le terrain et des professionnels de la santé. Les observations et l’analyse de document ont été les autres méthodes utilisées pour montrer l’écart entre les lignes directrices sur les soins aux diabétiques et les réalités vécues en raison des contraintes dans les soins offerts en foyer de groupe. Résultats : Les résidents de ce foyer de groupe réglementé par le gouvernement ont été sédentaires, obtenant approximativement 10 minutes par jour d’exercice de faible intensité. Les intérêts principaux du gouvernement en limitation des coûts ont créé un contexte de rationnement qui a entraîné un manque de circonstances opportunes pour faire de l’exercice et pour participer pleinement à la vie sociale. Par ailleurs, les politiques du foyer de groupe réglementent les systèmes de sécurité, la déclaration de maladie et la responsabilité comptable, mais ne promeuvent pas la santé. Conclusions : Les résultats indiquent un urgent besoin de soutien financier de la part du gouvernement pour mettre en œuvre des initiatives en matière de qualité de vie et des amendements aux politiques des foyers de groupe qui accorderont la primauté à la promotion de la santé, à la prévention de la maladie et à la prise en charge médicale des facteurs de comorbidité les plus fréquents comme le diabète. Ó 2013 Canadian Diabetes Association
* Address for correspondence: Ruth Lowndes RN, PhD, CDE, University of Toronto, Lawrence S. Bloomberg Faculty of Nursing, Toronto, Ontario M5T 1P8, Canada. E-mail address: [email protected]. 1499-2671/$ e see front matter Ó 2013 Canadian Diabetes Association http://dx.doi.org/10.1016/j.jcjd.2013.03.361
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Introduction
Methods
The aim of the study was to use qualitative methods to understand the social organization of diabetes care in a rural group home setting. Institutional ethnography (1) was used to pursue a rigorous analysis of the social arrangements and activities that shape diabetes-related care and outcomes. In institutional ethnography, three tasks are paramount to inquiry: documenting the work, identifying textually mediated discourses and mapping social relations, which are defined as people’s activities as they are coordinated with others’ activities across time and place (1). The term “work” refers to “.anything that people do that takes time, effort, and intent” (1, p. 229), such as managing a chronic illness. These everyday situated work activities are often coordinated by texts, such as guidelines or policies, that connect people to institutional processes (1). By focusing on social relations to investigate institutional processes, this method of inquiry can inform sociopolitical change (1). In this article, which represents one segment of a larger study, we focus on physical activity as a constituent of diabetes management. Although exercise is considered a key component in diabetes care (2), there is a lack of literature on the levels and types of physical activity in the seriously mentally ill, who have a high incidence of diabetes (3e5). We report findings that shed light on the current types and amount of physical activity attained in this at-risk group and the forces that constrain exercise. In Ontario, approximately 2.5% of the population, or 300 000 people, are seriously mentally ill (6), and there are 10 376 dedicated mental health beds/units (7). While diabetes affects 6% to 8% of the general population in Canada (8), people who are diagnosed with mental illness, such as schizophrenia and mood disorders, are 2 to 4 times more likely to develop diabetes due to genetic predisposition (9). This risk is heightened by the widespread use of atypical antipsychotic medications, which are associated with dramatic weight gain, the onset and worsening of diabetes and lipid abnormalities (10). There is an abundance of literature on the positive relationship between the use of second-generation antipsychotic medications and the increasing incidence and prevalence of diabetes, heart disease, overweight and obesity, hypertension and lipid abnormalities (10e15). The rate of diabetes in group homes is elevated, as reported in a community-based study of 1123 people who were being treated for schizophrenia (of which 78.7% resided in supportive housing), with 43.2% showing evidence of prediabetes or diabetes (16). Diabetes is associated with earlier mortality; lifespans may be shortened by 13 years (17). For those with serious mental illness, the lifespan is shortened by 25 years; high rates of morbidity and mortality are linked with preventable diseases, such as diabetes (18,19). There is an increased prevalence of cardiovascular risk factors, such as overweight and obesity, in this population, leading to higher rates of cardiovascular death (3). Physical activity has been demonstrated to be both feasible (4,5,20e22) and beneficial for weight loss (4,5,18,20), cardiovascular risk reduction, hypertension (20) and diabetes (18), and has also been shown to improve mood (20,22), psychosocial functioning (22) and self-esteem (5) in the mentally ill. Adults with mental illness who reside in group homes are faced with additional conditions, such as budgetary restrictions and cognitive constraints, that exacerbate risk and impede diabetes care and outcomes. Although type 2 diabetes, which accounts for 90% of the cases, is largely preventable with lifestyle modifications, such as weight loss and physical activity (23), there is little or no research that explores if and how these modifications are practised in the group home context. Such studies are needed in view of the personal costs to afflicted residents of group homes, in addition to the associated treatment costs.
Setting
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This ethnography was conducted in a for-profit rural group home for women with serious mental illness located in southern Ontario. This country location was chosen because it is one of the original Homes for Special Care (HSC) group homes. Many farmers became the first HSC home operators because they were already taking patients in on an informal basis through the Approved Homes Program, which transferred over once the HSC Program was implemented in 1964 (24). During the period of deinstitutionalization, people reacted negatively to ex-psychiatric patients living in their neighbourhoods, better known as the ‘Not in My Backyard’ (NIMBY) phenomenon (25). Thus many group homes were opened in rural settings, where they remain today. Additionally, by purposely selecting a rural group home, it was possible to explore the accessibility of transportation for medically necessary appointments and quality of life opportunities. For-profit residential care facilities provide long-term and permanent residential care for vulnerable people with mental illness who require supervision or assistance with activities of daily living (26). In Ontario, they are funded by two programs: the HSC Program (supported by the Ministry of Health and Long-Term Care) and the Domiciliary Program (jointly supported by the Ministry of Community and Social Services and local governments). The group home studied had 17 residents in the HSC Program, 8 in the Domiciliary Program and 1 resident who paid privately. Participant selection There were 26 female residents (3 were between 18 and 29 years, 4 were between 30 and 49 years, 12 were between 50 and 64 years, and 7 were 65 years and older), of whom 10 had a diagnosis of diabetes and 2 had pre-diabetes. Inclusion criteria for the residents to be interviewed were as follows: 18 years of age or over; a diagnosis of schizophrenia, bipolar disorder, schizoaffective disorder and/or another form of mental illness; a diagnosis of diabetes; and currently living in the group home. Inclusion criteria for those providing and overseeing care were as follows: experience working in or affiliation with the group home and knowledge of day-to-day processes of operating the group home. Other interviewees provided additional information about the organization of group home care, and included the home operator, 2 field workers within the HSC Program, 1 social worker within the Domiciliary Program, 1 family physician and the Social Night Coordinator. All 26 residents were invited to be involved in observational studies, along with 2 care providers, and the home operator. Data collection Ethical approval was obtained from the University of Toronto Research Ethics Board. Informed consents were read and signed by those who agreed to participate in the study. Of the 10 resident women with diabetes, 8 participated in semi-structured interviews, which were between 0.5 and 2 hours in length and focused on “work” activities, including diabetes self-care experiences and exercise. Interviews were audio recorded and transcribed verbatim; names of participants were changed for purposes of anonymity. Ethnographic observations with 25 of the residents and 2 care providers further explored routine daily activities, including diabetes care practices and lifestyle patterns, and structured weekly outings that enabled physical activity. A total of 15 observations were conducted, ranging from 1 to 8 hours in length. Detailed observational notes that were taken during and after the
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participant observations served as further data. The role of the first author was that of a participant observer, joining in activities if invited. Analysis Institutional ethnography provides a framework for inquiry into actual social processes as they unfold in particular settings and circumstances (1). The mapping of social relations starts from and always includes people in the local site of ethnographic study, but it continues to expand outward to distal organizations, such as government ministries or professional groups, that shape the problem of interest (1). The research started with the women residents who were living with diabetes, and sought to understand what their diabetes-related experiences involved and how they were shaped by intersecting, but at times contradictory, policies used to regulate group home care and diabetes care provision. The work experiences and knowledge of various providers, including practices related to exercise attainment, were also traced to discover how they connected or did not connect to others’ socially organized activities. Texts are replicable, and they contribute to standardization and coordination of professional and organizational interests when people refer to them at different times and in various locations (1). The coordinating effects of texts were analyzed by paying close attention to sequential work activities in the group home that were being organized by certain texts that were representative of institutional interests (1). The following regulatory texts contain the policies that govern group home care: the “Ministry of Health and Long-Term Care: Operating Guidelines for HSC” (2003) and the licensing documents (“Residential Home Report,” 2007, and the “Hostel Compliance Checklist,” 2008). A textual analysis of the Canadian Diabetes Association 2008 Clinical Practice Guidelines was also performed to assess suitability of this text to inform diabetes care for the mentally ill. Results It is 7:30 a.m. and the women begin entering the kitchen for breakfast. One resident is busy making toast, one is boiling eggs and another is preparing cups of water for pill taking. Once medications are given, breakfast goes quickly and by 8:30 a.m. most people are finished. Peggy has a checklist, and is busy asking residents if they are going on today’s scheduled outing. The staff member begins organizing those who are scheduled for their baths, while grabbing clean linens. Some women go back to their bedrooms, some go outside for a cigarette, while others go into the craft room. A few of the residents carry out their “jobs” and by 9:15 a.m. the floors are mopped, dishes are done and the kitchen area is quiet. At 10 a.m. I see a few women sitting watching television. In the middle of the craft room there is a leather rocking chair, where I find Mary sitting every time I visit, like today. Rose is downstairs ironing a jacket, a couple of women are on their already made beds, and a few are sitting outside smoking. At 11:30 a.m., three residents start making bologna sandwiches for lunch, and one boils water for tea. At 11:45 a.m., the bell is rung and all of the women enter the kitchen. The staff member calls out names one at a time to take pills. People eat, drop their dirty dishes in the plastic container, and then all except those cleaning up disperse from the kitchen, with some going outside to smoke. Some women catch the bus for the afternoon outing. Afterwards, I see that a few women are resting on their beds, and one is sitting at the side of her bed doing cross-stitching. In the craft room, two women are playing a card game, two are on the couch watching television and Mary is sleeping in her chair. At snack is served and the women take their respective seats for tea and cookies.
At 5 p.m., supper is served after pills are given, and before long most are finished eating. Two women do the dishes and two clean up the tables. By 5:30 p.m., a few women are sitting in the craft room in silence with the television turned off. Mary is asleep in her chair. Three women are outside talking and having a cigarette in the smoking shelter. A couple of others are outside on the deck off the kitchen smoking, and the rest of the women are in their bedrooms. At 6 p.m., I notice two women have their pajamas on and are waiting in the kitchen for an evening snack. At 7:30 p.m., the rest of the women again enter the kitchen for pills and snack, after which most go straight to bed. A few women stay up and watch a movie on Peggy’s laptop computer, and I join them on the couch. The above notes taken from observations made during different intervals were combined to describe a composite day in the lives of the residents. Between meals, morning cleaning and bathing routines, the majority of women spent most of their time sitting, in spite of ongoing attempts to keep them active. As indicated in the vignette, some women kept busy by volunteering to do household jobs, such as meal preparation, dishes, sweeping and mopping of floors. A few others also kept journals and read, one cross-stitched, another had a laptop computer and many watched television. The in-home Quality of Life or Craft Program, in which exercise was periodically fit in, was offered twice per week. Scheduled outings, such as twice weekly shopping, weekly bowling, church, Social Night dance and biweekly movies, were anticipated events that offered engagement in enjoyable pastimes for those who chose to participate but afforded a minimal amount of exercise, depending on the resident and their physical limitations. At the study setting, the women with diabetes were encouraged every day to walk, and they were aware of its importance for illness management. “I walk.sometimes down the driveway and sometimes through the house.I’m always going back and forth.from my room to different places” (Anne, resident). However, some residents chose to not participate. Mary, a middle-aged woman who had diabetes and was also considered obese, stated, “I do not do much. I just sit down in my chair.It’s in the living room.Sometimes I read, and sometimes I just listen to the music.I should be walking, but I don’t.I don’t know why.It’s just the activity itself (I don’t like).” When asked if there is anything she would like to see included in her day that would help with activity, she stated, “I would like there to be more that I do, that’s the only thing that I would like.” The majority of residents, including those with diabetes, walked slowly a total of approximately 10 minutes per day, an observation that was confirmed by the home operator. There was consensus among those overseeing care that group home residents are inactive, and for overall health and well-being they need to increase levels of activity. It was also acknowledged that residents have few high-quality opportunities to participate in social life outside the group home. “They don’t have regular family lives.They don’t work. They don’t go to school. So this just automatically answers the question (that they have more sedentary lifestyles than the general population)” (Maria, hostel worker, Domiciliary Program). Recreational, vocational and educational opportunities that would also enable involvement in the larger community were lacking. In this particular group home, all of the residents were unemployed, and as reported by the home operator, even if they found job opportunities, barriers to transportation precluded their ability to be employed. In this rural setting, the residents were not free to choose from activities, such as going to the park or joining team sports, to get active because transportation fees and applicable program costs were not provided by the government. “We promote it but.you know, one wants to join the gym, we don’t cover that cost. The bottom line is, we say, ‘Go walking, be it a short walk. Walk to the kitchen 10 times’” (Laura, field worker, HSC Program). Another field
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worker reiterated residents of group homes have few opportunities to become physically active: “When the majority of your clients are schizophrenic it’s hard to motivate them and have people being active when in the household there’s very little to do other than going from maybe couch to kitchen, to their room and back. You know you can only.encourage so much. We can’t force anybody to do anything.” (Lolly, field worker, HSC Program) Although the right to individual choice was ostensibly endorsed by those overseeing care, this shifted the responsibility to the resident for not engaging in exercise. Field workers also recognized that urban homes have more opportunities than the rural ones. This social inequity was linked directly to cost. “In the city there’s just access and availability. You know even if there’s a cost to attend a program, it’ll be quite a bit cheaper than having a very rural setting with someone wanting to go somewhere.it’s very expensive.definitely the urban settings, much cheaper all the way around” (Lolly, field worker, HSC Program). Cost containment interests shape decision making about exercise. Residents living in urban group homes are able to walk or use inexpensive public transit to access amenities and community programs. Lack of financial support creates and sustains inequities by making similar opportunities inaccessible for residents in rural settings. Canadian weather was also perceived as a constraining element to obtaining exercise in this study setting. The women tended to walk up and down the driveway because it was a paved surface. “.you’re living out in the country. You’ve got the icy conditions. You know, it’s very, very difficult to walk on that driveway in the winter” (Susan, care provider). Rose, a resident in the home, reported, “I don’t (walk outside) in the winter time because, um, subconsciously I do always have that fear of falling.” The primary location for obtaining exercise, the driveway, was off-limits for approximately 6 months of the year, due to unsafe conditions. Physical changes and a decline in mental health were reported with the increased confinement during winter months. “I find from January ‘til April you notice a massive difference in health and mental attitudes.Blood sugars go way up, the weights go way up, because they’re not getting outside” (Carol, home operator). In view of our observations and the reported concerns in many interviews, we further examined both diabetes practice guidelines and group home care documents to see how they addressed physical activity and social participation as essential components to health and well-being in this population. We discovered that government-mandated interests, as outlined in the Ministry of Health and Long-Term Care Operating Guidelines for HSC (2003), the Residential Home Report (2007) and the Hostel Compliance Checklist (2008), such as hygiene, food handling, fire safety and financial accountability, were more highly prioritized than illness prevention, medical management of comorbid conditions and health promotion activities, including physical activity. Licensing was not contingent on resident attainment of exercise, whereas other tasks needed to be completed to meet certain regulations, and priorities were necessarily set accordingly. Routine schedules included meal preparation, medication administration, medical appointments, daily home cleaning and maintenance, laundry and coordinating resident bathing as per regulations. Documentation of these activities and finances, including per diems, personal needs allowances and other sources of income, was paramount for accountability purposes. These processes kept a sense of order and efficiency, and were orchestrated to satisfy governing bodies’ policies, which focused on cleanliness, safety, financial transparency and resident basic needs (26).
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Group homes are highly regulated and monitored for compliance to policies. In addition to keeping a clean and orderly environment, home operators are responsible for residents’ safety. Monthly fire drills were carried out and documented, and a medication management system was in place as per regulations. Staff was certified in CPR, First Aid and food handling safety. Care provider time restrictions limited the ability to look beyond mandated responsibilities, as highlighted by a social worker who oversaw home operations. “We have to remember they are very busy people because they have to run the basics of the home, the food supplies, the medication, the daily cleaning, cooking, so umm this (exercise) is just above and extra added onto their daily duties” (Maria, hostel worker, Domiciliary Program). Further, financial support for staffing in group homes is extremely low, which restricted the hiring of employees. Group home operators are paid a per diem amount of $47.75 per day for each resident, of which 59% or $28.00 is allotted to administration and program support services (26, p.33). In this home, the amount was $8 000 per month less than required to meet the recommended staffing ratio of 1:7 (26). Furthermore, although an understanding of mental disabilities is recommended (26), home operators are not required to have medical backgrounds nor is the funding allotment sufficient to hire regulated health professionals. Home operators and staff are not supported financially, or through the facilitation of formal education, to prevent or manage comorbid medical conditions, such as diabetes. Hence, the home operator could not afford sufficient qualified staff to manage or supervise an exercise program. We discovered a disconnect between text-based guidelines, both in diabetes care provision and in group home care and the actualities of living with diabetes within this context. In diabetes practice guidelines, the connection is not made between mental illness and the development of diabetes, aside from indicating genetic predisposition with schizophrenia (2). Even though this is a high-risk group, with the added risk imposed by widespread use of atypical antipsychotic agents and numerous contextual constraints, the mentally ill are not recognized in the “Canadian Diabetes Association 2008 Clinical Practice Guidelines for the Prevention and Management of Diabetes in Canada” as a special population requiring added attention. In this particular group home, 20 out of the 26 women were prescribed atypical antipsychotic medications, such as clozapine and olanzapine, and the psychiatrists did not screen for metabolic side effects (Dr. P., attending physician). Within group home care guidelines, the following is stipulated: “The Home Owner/Home Staff, in cooperation with HSC Field Staff, shall be aware of programs and activities, which .promote adequate levels of fitness within their communities.Residents are encouraged to participate in activities and programs, which are of interest and appropriate to them and their level of fitness, if they so choose.The Home Owner/Home Staff, in conjunction with the HSC Field Office, shall assist residents to access resources and activities appropriate to their needs and interests, if so requested.” (26, p. 30) Responsibility is distributed to the residents to choose to become involved in community activities, and to the home operator and field workers to facilitate this process. However, there is no written commitment by the provincial or local government to provide financial support or transportation if required. This implies a low priority on these health promoting goals, as these policies cannot be actualized in view of funding restrictions. The residents voiced their desire for a simple change in routine; this modest wish requires easy access to transportation, which is unattainable in a climate of cost containment:
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“.it’s the freedom is pretty hard.We can’t get anywhere we’d like to go ‘cause of the cost, ok? And I would love to see the bus come so that we would have the chance to go downtown (to the park that has a little lake) in an afternoon and spend a couple of hours and come back.Just to go down there and walk and have a coffee, it’s just a change. That would be nice.” (Margaret, resident) This actuality contradicts a governing principle of the HSC Program that states, “The development or enhancement of life skills shall be encouraged through a range of structured basic skills developing activities, social and recreational experiences, and vocational training which reflects individual needs, desires, interests, and abilities” (26, p. 28). The HSC Program is supposed to, “.promote and enhance quality of life” (26, p. 4) and provide environments that allow residents to, “.grow and develop” (26, p. 4). Yet, isolation and lack of opportunities to engage in physical activity and other quality of life initiatives are actual outcomes of an overarching government interest in cost containment. The numerous, multifaceted restrictions to exercise as a result of imposed social constraints, including limited care provider time and expertise, climactic conditions, rural location and transportation issues, led to physical and mental health disparities in an already high-risk, vulnerable group. Discussion There is a significant disconnect between the recommended 150 minutes per week of moderate-to-vigorous physical activity (2) and the levels and amounts of exercise observed in the group home setting. The residents obtained approximately 10 minutes per day of low-intensity exercise that declined further over winter months due to weather conditions and limited ability to use the driveway as a walking path. These findings are similar to other studies that reported lower levels of physical activity in the population of mentally ill adults (3e5,20e22,27e31). In these studies, contributing personal barriers to physical activity, such as psychological and cognitive functioning (21,30,31), depressive states (21,31), low self-efficacy, medication side effects (30,31) and poor access to physical health services (28,31) or affordable, safe places to exercise (20,30,31), were acknowledged. However, this study builds on the previous research that utilized self-report data (3,27) and intervention studies (4,5,18,20,22,29) to assess exercise, by describing and contextualizing physical activity within a group home setting. This ethnographic study adds new knowledge by showing how sociopolitical forces combine to create social and material conditions that assign low priority to particular aspects of diabetes management, such as exercise attainment. Care providers and those overseeing group home operations acknowledged the residents’ sedentary lifestyle, and voiced awareness of the benefits of exercise for weight loss and glycemic control. Exercise in the form of walking was encouraged, an activity in which some of the residents did not readily engage. However, the per diem rate did not allow for the hiring of additional qualified staff to support residents to exercise, and other government-mandated work practices overrode care provider attention to the attainment of physical activity. There was also no mandate for group home providers to be knowledgeable, nor were they supported in attaining education to prevent or manage diabetes, in spite of the heightened risk for this condition. Government financial support was lacking for a) exercise initiatives and promotion of healthy living, b) transportation to community events and programs and c) quality of life initiatives that would enable full social participation. Although field workers referred to the discourse of “freedom of choice” to assign responsibility to residents for not being physically active, in actuality few options were available. In this study, we found that all of the
residents in the group home were unemployed, which coincides with the existing body of literature reporting that mentally ill adults have low income (32) and difficulty finding and maintaining employment (33). Even if employment was secured, the provincial or local governments would not pay for transportation from this rural location, making such opportunities unavailable. The physical and mental health disparities created by the above social circumstances were not addressed by the governing bodies, who maintained the stance that these are housing programs. This group was also omitted as a special population requiring added attention in the diabetes practice guidelines, and as such health providers may have been unaware of their heightened risk and how best to offer support. This study only investigated one group home, which may limit our ability to generalize these results. For example, other group home operators across Ontario may have access to low-cost fitness facilities or recreational programs that could impact the amount of exercise in which residents engage. Future research is required to determine similarities and differences among residential care facilities within these programs. However, the fact remains that the per diem amount for each resident is the same, and policies regulating group home practices are issued provincially. In conclusion, adults with serious mental illness who reside in for-profit, government-regulated group homes are faced with numerous social forces that combine to create multifaceted barriers and constraints to the prevention and management of diabetes. These findings suggest an urgent need for financial support for exercise programming and quality of life opportunities, and amendments to policies to give priority to health promotion, illness prevention and medical management, so this high-risk group can realize overall health and well-being. The linking of medical and psychiatric care in policies and in clinical practice is required to reduce health care inequalities in this vulnerable population that is at an intersection, requiring both medical and mental health care. Moreover, health care providers must recognize social inequalities faced by some groups, like the seriously mentally ill, and provide services that are sensitive to their needs. Future research is also recommended to investigate and implement exercise initiatives that are tailored to individual particularities. Author Disclosures Ruth Lowndes was financially supported during doctoral studies by the Canadian Diabetes Association, the Registered Nurses’ Foundation of Ontario, Southlake Regional Health Centre and the University of Toronto. References 1. Smith D. Institutional ethnography: A sociology for people. Lanham, MD: Altamira Press; 2005. 2. Canadian Diabetes Association Clinical Practice Guidelines Expert Committee. Canadian Diabetes Association 2008 clinical practice guidelines for the prevention and management of diabetes in Canada. Can J Diabetes 2008; 27(Suppl 2):S1e201. 3. Daumit GL, Goldberg RW, Anthony C, et al. Physical activity patterns in adults with severe mental illness. J Nerv Ment Dis 2005;193:641e6. 4. Richardson C, Avripas S, Neal D, Marcus S. Increasing lifestyle physical activity in patients with depression or other serious mental illness. J Psych Pract 2005; 11:379e88. 5. Ohlsen R, Peacock G, Smith S. Developing a service to monitor and improve physical health in people with serious mental illness. J Psych Ment Health Nurs 2005;12:614e9. 6. Government of Ontario. Annual report of the office of the provincial auditor of Ontario. Toronto, ON: Queen’s Printer for Ontario; 2004. 7. Centre for Addiction and Mental Health. Turning the key: Assessing housing and related supports for persons living with mental health problems and illness. http://www.mentalhealthcommission.ca/SiteCollectionDocuments/AtHome-Ch ezSoi/TurningTheKey_Full_ENG_NEW.pdf; 2012. Accessed April 27, 2012. 8. Canadian Diabetes Association. The prevalence and costs of diabetes. www. diabetes.ca/Section_About/prevalence.asp; 2006. Accessed January 2, 2007.
R. Lowndes et al. / Can J Diabetes 37 (2013) 220e225 9. Dombrovski A, Rosenstock J. Bridging general medicine and psychiatry: Providing general medical and preventive care for the severely mentally ill. Curr Opin Psychiatr 2004;17:523e9. 10. American Diabetes Association. Consensus development conference on antipsychotic drugs and obesity and diabetes. Diabetes Care 2004;27:596e601. 11. Henderson D, Cagliero E, Gray C, et al. Clozapine, diabetes mellitus, weight gain, and lipid abnormalities: A five-year naturalistic study. Am J Psychiat 2000;157:975e81. 12. Citrome L, Jaffe A, Levine J, Allingham B, Robinson J. Relationship between antipsychotic medication treatment and new cases of diabetes among psychiatric inpatients. Psychiatr Serv 2004;55:1006e13. 13. Amiel JM, Mangurian CV, Ganguli R, Newcomer JW. Addressing cardiometabolic risk during treatment with antipsychotic medications. Curr Opin Psychiatr 2008;21:613e8. 14. Newcomer J. Antipsychotic medications: Metabolic and cardiovascular risk. J Clin Psychiatry 2007;68(Suppl 4):8e13. 15. Woo V, Harris S, Houlden R. Canadian Diabetes Association position paper: Antipsychotic medications and associated risks of weight gain and diabetes. Can J Diabetes 2005;29:111e2. 16. Voruganti LP, Punthakee Z, VanLieshout RJ, et al. Dysglycemia in a community sample of people treated for schizophrenia: The Diabetes in Schizophrenia in Central-south Ontario (DiSCO) study. Schiz Res 2007;96:215e22. 17. Canadian Diabetes Association Clinical Practice Guidelines Expert Committee. Canadian Diabetes Association 2003 clinical practice guidelines for the prevention and management of diabetes in Canada. Can J Diabetes 2003; 27(Suppl 2):S1e140. 18. Teachout A, Kaiser S, Wilkniss S, Moore H. Paxton House: Integrating mental health and diabetes care for people with serious mental illnesses in a residential setting. Psychiat Rehab J 2011;34:324e7. 19. National Association of State Mental Health Program Directors (NASMHPD) Medical Directors Council. Morbidity and mortality in people with serious mental illness. www.dsamh.utah.gov/docs/mortality-morbidity_nasmhpd.pdf; 2006. Accessed October 25, 2012. 20. Daumit G, Dalcin A, Jerome G, Young D, Charleston J, Crum R, et al. A behavioural weight-loss intervention for persons with serious mental illness in psychiatric rehabilitation centers. Int J Obes 2011;35:1114e23.
225
21. Jerome G, Rohm Young D, Dalcin A, et al. Physical activity levels of persons with mental illness attending psychiatric rehabilitation programs. Schizophr Res 2009;108:252e7. 22. McDevitt J, Wilbur J, Kogan J, Briller J. A walking program for outpatients in psychiatric rehabilitation: Pilot study. Biol Res Nurs 2005;7:87e97. 23. Ontario Ministry of Health and Long-Term Care website. Diabetes Facts. http:// www.health.gov.on.ca/english/public/pub/diabetes/diabetes.html. Accessed September 13, 2009. 24. Quinsey R. Homes for Special Care Program. Toronto, ON: Government of Ontario; 1985. 25. Piat M. The NIMBY phenomenon: Community residents’ concerns about housing for deinstitutionalized people. Health Soc Work 2000;25:127e38. 26. Ministry of Health and Long-Term Care. Operating Guidelines for Homes for Special Care. http://www.health.gov.on.ca/english/providers/pub/hsc/hsc_ manual; 2003. Accessed September 24, 2009. 27. Xiong G, Ziegahn L, Schuyler B, Rowlett A, Cassady D. Improving dietary and physical activity practices in group homes serving residents with severe mental illness. Prog Community Health Partnersh 2010;4:279e88. 28. Vreeland B. Bridging the gap between mental and physical health: A multidisciplinary approach. J Clin Psychiat 2007;68(Suppl 4):26e33. 29. Knol L, Pritchett K, Dunkin J. Institutional policy changes aimed at addressing obesity among mental health clients. Prev Chronic Dis 2010;7:1e7. 30. McDevitt J, Snyder M, Miller A, Wilbur J. Perceptions of barriers and benefits to physical activity among outpatients in psychiatric rehabilitation. J Nurs Scholarsh 2006;38:50e5. 31. Vancampfort D, De Hert M, Helvik Skjerven L, et al. International organization of physical therapy in mental health consensus on physical activity within multidisciplinary rehabilitation programmes for minimising cardio-metabolic risk in patients with schizophrenia. Disabil Rehabil 2012; 34:1e22. 32. Wilton R. Putting policy into practice? Poverty and people with serious mental illness. Soc Sci Med 2004;58:25e39. 33. Canadian Mental Health Association and the Centre for Addiction and Mental Health. Employment and education for people with mental illness. http://www.camh.net/Public_policy/Public_policy_papers/employment_di scussion_paper_jan10.pdf; 2010. Accessed on May 20, 2012.