483209 research-article2013
JAGXXX10.1177/0733464813483209Journal of Applied GerontologyHay and Chaudhury
Article
Exploring the Quality of Life of Younger Residents Living in Long-Term Care Facilities
Journal of Applied Gerontology XX(X) 1–16 © The Author(s) 2013 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0733464813483209 jag.sagepub.com
Kara Hay1 and Habib Chaudhury1
Abstract The purpose of this qualitative study was to explore the characteristics of “quality of life” of younger residents in long-term care facilities. This multimethod study employed in-depth interviews with younger residents, focus groups with staff members and interviews with management team members at two care facilities in British Columbia, Canada. Data analysis revealed three themes: (a) a new chapter in life, (b) experiencing quality of life, and (c) nature of social life. These themes highlight the characteristics of younger residents’ quality of life and provide insights into the salient contributing factors. Findings of this study are useful in better understanding aspects of younger residents’ quality of life and their psychosocial needs and consequently can guide decision making to provide an appropriate care environment for this population segment in long-term care settings. Keywords long-term care, younger residents, quality of life Manuscript received: August 2, 2012; final revision received: February 24, 2013; accepted: February 24, 2013. 1Simon
Fraser University, Vancouver, British Columbia, Canada
Corresponding Author: Kara Hay, Simon Fraser University, 515 West Hastings Street, Vancouver, British Columbia, V6B 5K3, Canada. Email: [email protected]
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Journal of Applied Gerontology XX(X)
Introduction It is well known that older adults comprise the majority of the population in long-term care facilities. It is rarely recognized that there is a small, yet significant segment of younger residents who are cared for in care facilities due to their similar levels of care needs. According to recent North American literature, younger adults (aged 65 or younger) are estimated to account for approximately 10% of the population of long-term care facilities (Fries, Walter, Blaum, Buttar, & Morris, 2005; Jervis, 2002; Watt & Konnert, 2007). Since the average age of long-term care facility residents is approximately 83 years (Smith, 2004), this study chose to include residents aged 70 years old or below as they are relatively younger in the resident population. Literature on younger residents in long-term care suggests that this group’s distinctive needs are often not taken into consideration, as the care services and activity programs are typically geared toward the needs of the older and more physically and/or cognitively impaired residents. The segment of younger residents is estimated to rise in the future with the increased incidence of chronic disease in middle-aged adults and the expansion of technology that prolongs the life span of people with disabilities (Fries et al., 2005; Watt & Konnert, 2007). Little research has been conducted concerning the appropriateness of the quality of care and programs offered to younger residents, and these individuals’ potentially unique physical and psychological needs. This study addresses the research gap by exploring the salient characteristics of quality of life for this population in two age-integrated long-term care facilities in Canada. Research on quality of life in long-term care facilities has focused primarily on older residents (e.g., Gerritsen, Steverink, Ooms, & Ribbe, 2004; Kane et al., 2003; Lassey & Lassey, 2001; Mozley et al., 2004; Stewart & King, 1994). There are multiple conceptual bases and domains used for assessing the quality of life of long-term care residents. In this study, the general literature on the quality of life for long-term care residents, as well as the more focused literature on younger residents in care facilities were reviewed to find similarities of themes. Eight quality of life domains were identified as being most pertinent to younger residents: autonomy, independence and control; meaningful activities or stimulation; social relationships; safety and environment; privacy; perceived physical and mental well-being; financial security; spiritual well-being (Donnelly et al., 2007; Gerritsen et al., 2004; Kane et al., 2003; Lassey & Lassey, 2001; Mozley et al., 2004; Stewart & King, 1994). The demographics of the population from previous research in this area reported an equal gender distribution with the mean age of the younger
Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
Hay and Chaudhury
3
residents between 40 and 50-years-old (Fries et al., 2005; Gutman & Killam, 1989; Gutman, Anderson, & Killam, 1995; Jervis, 2002; Watt & Konnert, 2007). Among the younger residents, 30% to 40% were married (Gutman et al., 1995). Studies suggest multiple comorbid conditions as the common reasons for this resident segment to live in care facilities. The most prevalent conditions were multiple sclerosis, cerebrovascular accidents, chronic mental health problems, Alzheimer’s disease, diabetes, and Parkinson’s disease (Fries et al., 2005; Gutman & Killam, 1989; Gutman et al., 1995; Jervis, 2002). Earlier research indicated that compared with the older population, younger residents were more likely to be cognitively intact, but likely to have higher physical care needs (Fries et al., 2005; Gutman et al., 1995). Previous studies also reported that many younger residents viewed living in a care facility at a young age as a nonnormative experience, which violates their perceived age norms and creates an untimely life-course timetable (Jervis, 2002; Watt & Konnert, 2007). Younger residents may struggle to make sense of their residence in a care facility and may not feel a sense of belonging. The issue of privacy related to personal space and private rooms was identified as an important issue (Jervis, 2002). This issue is particularly salient for younger residents who are married, are sexually active, or who may need privacy with a loved one. Many younger residents are also seen to be dependent on social assistance or have limited income. If disability occurred at an early stage of life, the younger resident may never have worked or may have a limited work history affecting their financial situation (Allen & Mor, 1997). Being on a tight budget and not being able to afford extra expenses or participate in leisure activities may affect their quality of life. Activity programming was highlighted in the literature for younger residents in long-term care, as most programs were found to be geared toward the older adult population and may be inappropriate for the younger population. The younger residents tend to avoid the formal activities in the care facility and prefer to be taken out into the community; however, this is not always an option due to budget and staffing issues (Jervis, 2002). It is suggested that many younger residents are disconnected from the community and may have little contact with friends and family (Watt & Konnert, 2007). Younger residents reported feeling detached from resources, places, and events in the community outside of the care facility (Watt & Konnert, 2007). The identified unmet needs of younger residents were physiotherapy, counseling, and recreation/leisure services (Gutman & Killam, 1989, Gutman et al., 1995; Jervis, 2002). The need for physiotherapy was expressed to maintain the residents’ functioning and ability to perform their activities of daily living. A variety of counseling, including marital, family, and disease management counseling, was recommended for both the residents and their
Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
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Journal of Applied Gerontology XX(X)
families (Gutman et al., 1995). Last, inadequacy of staff training to deal with the physical and mental needs of this population was reported. Most longterm care staff members are trained to deal with the older adult population and may not understand or be adequately prepared to care for the younger resident population (Gutman et al., 1995). In essence, the younger residents are being cared for in a geriatric-based system. The issues raised in the literature require an in-depth exploration to deepen their true relevance, variations, and to discover new findings. Previous research has only begun to uncover and understand the characteristics and key concepts that contribute to the quality of life of younger residents living in residential care.
Method Due to limited existing research in this topic area, a qualitative exploratory research design was used to conduct this study. Qualitative research is especially useful for exploration and discovery of topics in which the literature is scarce (Gray, 2004; Morgan, 1998). This study used previously identified issues to conduct in-depth interviews with younger residents to increase our understanding from their points of view and lived experiences (Esterberg, 2002; Patton, 2002). The study was reviewed and approved by the Office of Research Ethics at Simon Fraser University. With the small sample size, results are not generalizable; however, qualitative methods allow us to better understand a phenomenon under study in a purposefully selected group, particular problems or unique situations in great detail with rich information (Patton, 2002). In this study, two long-term care facilities in Metro Vancouver were selected. The facilities were purposely chosen based on their high percentage of younger residents. To select the younger residents, criterion sampling strategy was applied to select cases that met predetermined criteria of importance (Patton, 2002). To be eligible for this study, the participant needed to be aged 70 or below, living in the long-term care facility for 3 months or more, cognitively intact or lowmoderate cognitive impairment, able to verbally communicate in English, physically able to participate in the study and agree to participate in the study by signing a consent form. With the goal of having information rich cases, purposeful sampling was conducted in consultation with the facility’s social worker to identify and select residents based on their ability to be interviewed and willingness to provide reliable in-depth responses. Selected residents were assured that their participation was voluntary, the information gathered from them would be kept confidential and that their responses would in no way affect the care they received in the facility. At the beginning of each interview, background questions were asked regarding demographics,
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5
Hay and Chaudhury Table 1. Demographics of Participating Younger Residents. Participant demographics Sex Ethnicity Age range Length of stay Common conditions Activities of daily living (ADLs)
Facility A (n = 10) 5 men & 5 women All White 40-68 (average 60) 5 months-10 years (average 3.4 years) Multiple sclerosis, diabetes, substance abuse disorders 6 performed their own ADLs 4 needed assistance with ADLs
Facility B (n = 9) 9 men All White 40-68 (average 55) 1.5-10 years (average 4.7 years) Substance abuse disorders, mental health conditions, diabetes 5 performed their own ADLs 4 needed assistance with ADLs
conditions, physical challenges, and care needs. This self-reported information is summarized in Table 1. The research methods included in-depth interviews with younger residents, focus groups with care staff, and discussions with administrators (directors of care) in the two care facilities. In-depth interviews with 19 younger residents were conducted to gather their thoughts, feelings and experiences in their own words. The interview guide’s questions focused on the quality of care, staff interaction, meaningful activity, social interaction, unmet needs, and financial issues. Two to three questions were asked in each of the above areas along with the use of relevant probes to encourage the residents to elaborate on the topics. The interviews ranged from 20 to 85 min, with an average length of 47 min, depending on the residents’ willingness to discuss and elaborate on the questions. In each facility, one 60-min focus group interview with five to seven staff members was conducted with the social worker, an activity worker, care aides, and nurses. The staff were chosen and invited to the study by the director of care based on their level of interaction with the younger residents in the facility. To have information rich cases, purposeful sampling was also used in selecting staff members. Staff who had daily interactions with the participating residents were selected as key informants in the focus groups. All in-depth interviews and focus groups were conducted by the first author, who was the principal investigator of the study. The focus groups with staff took place after the in-depth interviews with the residents and completion of a preliminary analysis of the interview data. This allowed for
Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
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Journal of Applied Gerontology XX(X)
highlighting the major themes from the resident interviews as context for discussions in the focus group sessions. The discussions with the two administrators were approximately 20 min long and focused on the organizational policies and procedures with regard to younger residents. The administrators were interviewed separately to have the staff focus groups take place in a confidential atmosphere, where the staff could discuss issues and concerns without the presence of the upper management. All interviews and focus groups were tape recorded, transcribed verbatim, and analyzed throughout the data-collection process and analysis. Data analysis involved identifying, coding, categorizing, classifying, and labeling the primary patterns in the data to determine significance and core content of the interviews (Patton, 2002). Initial analysis involved line-by-line open coding to reveal potential insights, meanings and themes (Charmaz, 2002). Subsequently, focused coding refined and labeled the data by identifying and linking the data into general categories and themes (Charmaz, 2002; Esterberg, 2002). Finally, conceptually similar “focused codes” were clustered to identify higher order concepts or “themes.” Primary analyses were conducted by the first author and peer debriefing was done in consultation with the second author, who acted as an “auditor” to ensure that the identified codes and themes are indeed supported by the data (Lincoln & Guba, 1985). Data saturation was reached in the final few interviews as no additional concepts were emerging in the data analysis. As the emergent themes provided depth and significance, and given the modest scope of this study (Charmaz, 2006), additional interviews were not conducted after the 19 in-depth interviews.
Results Three themes developed from the interview data: (a) a new chapter in life, (b) experiencing quality of life, and (c) nature of social life. The first theme, a new chapter in life, evolved from two codes: “big picture on quality of life” and “adapting to a new life.” The second theme, experiencing quality of life, contains five codes: “frustrations,” “reporting on quality of care,” “environment,” “unmet needs,” and “money matters.” The third theme nature of social life, related to social activities of the residents and is based on three codes: “challenges of engagement,” “community connections,” and “interactions with other residents.” The three themes and their constituting codes are presented here.
A New Chapter in Life Theme, a new chapter in life, is composed of two codes: “defining quality of life” and “adapting to a new way of life.” Overall, this theme is about a new Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
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beginning in life and how quality of life is understood in this new phase of life. The first code provides an understanding of how the respondents define and understand quality of life, as well as any changes therein since moving into the care home. The second code discusses how the respondents adapted to their new chapter in life. Defining quality of life represents how the residents broadly defined what “quality of life” meant for them and the nature of their current quality of life. The majority of residents defined quality of life as being able to “do the things that you want to do” or being able to have assistance doing activities of daily living that they could no longer able to carry out independently. In defining their quality of life, responses varied in a wide range from “the quality of my life is terrible! It’s terrible!” to “in a few words . . . I would say good.” Interestingly, half of the participating residents reported a relatively negative quality of life, whereas the other half reported a somewhat positive experience. A few residents compared their life in the care facility not as bad but better than alternative negative circumstances. James put it, “now I’m not bad I suppose, it’s not great but it’s far from living under a bridge.” Several participants reported a negative lifestyle change when moving into the care facility, with a strong thread of sense of loss. Issues of loss regarding friends and family, freedom, space, privacy and belongings, and sexual relations were all mentioned. Adapting to New Life emerged as an important code, both in terms of adapting to living in a care facility, as well as the coexisting struggle of adapting to their illness or physiological conditions. The majority of participants had lived in a long-term care facility for more than a year, with the average length of stay being approximately 4 years. Four adapting strategies arose from the responses: acceptance, positive attitude, personal methods, and faith. Those who accepted their situation seemed to adapt better and, in turn, were likely to be happier in their daily life. Many participants described “making the best of it,” a phrase that Kahn (1999) used to entitle his study, Making the Best of It: Adapting to the Ambivalence of a Nursing Home Environment. One dimension that he described was the belief that the participants had “no other option” (Kahn, 1999), making it the best place to be, as they could imagine their circumstances could be much worse. This study found similar findings as many participants spoke about these same issues as they came to accept life in a care home in the absence of no better alternative. Acceptance of life in an institutional environment may not be unique to the younger population as all residents entering a care home are likely to adapt; however, the transition and adjustment process for younger residents may be atypical. The residents also talked about how their positive attitude and personality had helped them adapt to living in this situation. One resident attributed this to being able to adapt to his “deep strength,” whereas others Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
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Journal of Applied Gerontology XX(X)
attributed it to being “positive” or “happy” people. This finding corresponds with the findings from Donnelly et al.’s (2007) study with younger residents, which reported that “being adaptable, having a positive attitude, being flexible, and accepting their fate” were the qualities that the participants identified as important to their quality of life (Donnelly et al., 2007). Activities such as bringing in their own food, taking their own salad dressing to the dining room, and concentrating on their hobbies (e.g., playing the guitar or doing artwork) were mentioned as their ways of adaptation in the new environment. Finally, a few residents talked about their religious beliefs as a means to adjust to life in residential care and living with their illness. They reported that when they got diagnosed with their illness or when they moved into the care home, they turned to their faith or began a search for one. The process of adapting to a new life in a long-term care facility was reported as a process that took time; therefore duration of residence may play a role in individual responses regarding adapting to this new life. A few participants recalled that it was not easy in the beginning and it took some time to get used to their new life.
Experiencing Quality of Life Throughout the interviews, several quality of life factors were perceived as important and often referenced by the residents. In this thematic cluster, the constituting codes are “frustrations,” “quality of care,” “environment,” “unmet needs,” and “money matters” as they reflect various experiential aspects of the quality of life of younger residents. Frustrations with other residents and living with the ill and dying were reported by numerous participants. Frustrations with other residents were mainly due to living with residents with dementia, which was described as sometimes challenging. For the younger and often more able-bodied residents, it was also challenging to live with older individuals who were ill. From their perspective, it was like having an unwelcome preview of what their lives might be like in the future, as one resident expressed, “I feel like I’m going to be like that. I’m going to be one of those patients.” Mullins and Lopez (1982) compared the incidence of death anxiety among the young-old (>75) and old-old (
JAGXXX10.1177/0733464813483209Journal of Applied GerontologyHay and Chaudhury
Article
Exploring the Quality of Life of Younger Residents Living in Long-Term Care Facilities
Journal of Applied Gerontology XX(X) 1–16 © The Author(s) 2013 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0733464813483209 jag.sagepub.com
Kara Hay1 and Habib Chaudhury1
Abstract The purpose of this qualitative study was to explore the characteristics of “quality of life” of younger residents in long-term care facilities. This multimethod study employed in-depth interviews with younger residents, focus groups with staff members and interviews with management team members at two care facilities in British Columbia, Canada. Data analysis revealed three themes: (a) a new chapter in life, (b) experiencing quality of life, and (c) nature of social life. These themes highlight the characteristics of younger residents’ quality of life and provide insights into the salient contributing factors. Findings of this study are useful in better understanding aspects of younger residents’ quality of life and their psychosocial needs and consequently can guide decision making to provide an appropriate care environment for this population segment in long-term care settings. Keywords long-term care, younger residents, quality of life Manuscript received: August 2, 2012; final revision received: February 24, 2013; accepted: February 24, 2013. 1Simon
Fraser University, Vancouver, British Columbia, Canada
Corresponding Author: Kara Hay, Simon Fraser University, 515 West Hastings Street, Vancouver, British Columbia, V6B 5K3, Canada. Email: [email protected]
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Journal of Applied Gerontology XX(X)
Introduction It is well known that older adults comprise the majority of the population in long-term care facilities. It is rarely recognized that there is a small, yet significant segment of younger residents who are cared for in care facilities due to their similar levels of care needs. According to recent North American literature, younger adults (aged 65 or younger) are estimated to account for approximately 10% of the population of long-term care facilities (Fries, Walter, Blaum, Buttar, & Morris, 2005; Jervis, 2002; Watt & Konnert, 2007). Since the average age of long-term care facility residents is approximately 83 years (Smith, 2004), this study chose to include residents aged 70 years old or below as they are relatively younger in the resident population. Literature on younger residents in long-term care suggests that this group’s distinctive needs are often not taken into consideration, as the care services and activity programs are typically geared toward the needs of the older and more physically and/or cognitively impaired residents. The segment of younger residents is estimated to rise in the future with the increased incidence of chronic disease in middle-aged adults and the expansion of technology that prolongs the life span of people with disabilities (Fries et al., 2005; Watt & Konnert, 2007). Little research has been conducted concerning the appropriateness of the quality of care and programs offered to younger residents, and these individuals’ potentially unique physical and psychological needs. This study addresses the research gap by exploring the salient characteristics of quality of life for this population in two age-integrated long-term care facilities in Canada. Research on quality of life in long-term care facilities has focused primarily on older residents (e.g., Gerritsen, Steverink, Ooms, & Ribbe, 2004; Kane et al., 2003; Lassey & Lassey, 2001; Mozley et al., 2004; Stewart & King, 1994). There are multiple conceptual bases and domains used for assessing the quality of life of long-term care residents. In this study, the general literature on the quality of life for long-term care residents, as well as the more focused literature on younger residents in care facilities were reviewed to find similarities of themes. Eight quality of life domains were identified as being most pertinent to younger residents: autonomy, independence and control; meaningful activities or stimulation; social relationships; safety and environment; privacy; perceived physical and mental well-being; financial security; spiritual well-being (Donnelly et al., 2007; Gerritsen et al., 2004; Kane et al., 2003; Lassey & Lassey, 2001; Mozley et al., 2004; Stewart & King, 1994). The demographics of the population from previous research in this area reported an equal gender distribution with the mean age of the younger
Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
Hay and Chaudhury
3
residents between 40 and 50-years-old (Fries et al., 2005; Gutman & Killam, 1989; Gutman, Anderson, & Killam, 1995; Jervis, 2002; Watt & Konnert, 2007). Among the younger residents, 30% to 40% were married (Gutman et al., 1995). Studies suggest multiple comorbid conditions as the common reasons for this resident segment to live in care facilities. The most prevalent conditions were multiple sclerosis, cerebrovascular accidents, chronic mental health problems, Alzheimer’s disease, diabetes, and Parkinson’s disease (Fries et al., 2005; Gutman & Killam, 1989; Gutman et al., 1995; Jervis, 2002). Earlier research indicated that compared with the older population, younger residents were more likely to be cognitively intact, but likely to have higher physical care needs (Fries et al., 2005; Gutman et al., 1995). Previous studies also reported that many younger residents viewed living in a care facility at a young age as a nonnormative experience, which violates their perceived age norms and creates an untimely life-course timetable (Jervis, 2002; Watt & Konnert, 2007). Younger residents may struggle to make sense of their residence in a care facility and may not feel a sense of belonging. The issue of privacy related to personal space and private rooms was identified as an important issue (Jervis, 2002). This issue is particularly salient for younger residents who are married, are sexually active, or who may need privacy with a loved one. Many younger residents are also seen to be dependent on social assistance or have limited income. If disability occurred at an early stage of life, the younger resident may never have worked or may have a limited work history affecting their financial situation (Allen & Mor, 1997). Being on a tight budget and not being able to afford extra expenses or participate in leisure activities may affect their quality of life. Activity programming was highlighted in the literature for younger residents in long-term care, as most programs were found to be geared toward the older adult population and may be inappropriate for the younger population. The younger residents tend to avoid the formal activities in the care facility and prefer to be taken out into the community; however, this is not always an option due to budget and staffing issues (Jervis, 2002). It is suggested that many younger residents are disconnected from the community and may have little contact with friends and family (Watt & Konnert, 2007). Younger residents reported feeling detached from resources, places, and events in the community outside of the care facility (Watt & Konnert, 2007). The identified unmet needs of younger residents were physiotherapy, counseling, and recreation/leisure services (Gutman & Killam, 1989, Gutman et al., 1995; Jervis, 2002). The need for physiotherapy was expressed to maintain the residents’ functioning and ability to perform their activities of daily living. A variety of counseling, including marital, family, and disease management counseling, was recommended for both the residents and their
Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
4
Journal of Applied Gerontology XX(X)
families (Gutman et al., 1995). Last, inadequacy of staff training to deal with the physical and mental needs of this population was reported. Most longterm care staff members are trained to deal with the older adult population and may not understand or be adequately prepared to care for the younger resident population (Gutman et al., 1995). In essence, the younger residents are being cared for in a geriatric-based system. The issues raised in the literature require an in-depth exploration to deepen their true relevance, variations, and to discover new findings. Previous research has only begun to uncover and understand the characteristics and key concepts that contribute to the quality of life of younger residents living in residential care.
Method Due to limited existing research in this topic area, a qualitative exploratory research design was used to conduct this study. Qualitative research is especially useful for exploration and discovery of topics in which the literature is scarce (Gray, 2004; Morgan, 1998). This study used previously identified issues to conduct in-depth interviews with younger residents to increase our understanding from their points of view and lived experiences (Esterberg, 2002; Patton, 2002). The study was reviewed and approved by the Office of Research Ethics at Simon Fraser University. With the small sample size, results are not generalizable; however, qualitative methods allow us to better understand a phenomenon under study in a purposefully selected group, particular problems or unique situations in great detail with rich information (Patton, 2002). In this study, two long-term care facilities in Metro Vancouver were selected. The facilities were purposely chosen based on their high percentage of younger residents. To select the younger residents, criterion sampling strategy was applied to select cases that met predetermined criteria of importance (Patton, 2002). To be eligible for this study, the participant needed to be aged 70 or below, living in the long-term care facility for 3 months or more, cognitively intact or lowmoderate cognitive impairment, able to verbally communicate in English, physically able to participate in the study and agree to participate in the study by signing a consent form. With the goal of having information rich cases, purposeful sampling was conducted in consultation with the facility’s social worker to identify and select residents based on their ability to be interviewed and willingness to provide reliable in-depth responses. Selected residents were assured that their participation was voluntary, the information gathered from them would be kept confidential and that their responses would in no way affect the care they received in the facility. At the beginning of each interview, background questions were asked regarding demographics,
Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
5
Hay and Chaudhury Table 1. Demographics of Participating Younger Residents. Participant demographics Sex Ethnicity Age range Length of stay Common conditions Activities of daily living (ADLs)
Facility A (n = 10) 5 men & 5 women All White 40-68 (average 60) 5 months-10 years (average 3.4 years) Multiple sclerosis, diabetes, substance abuse disorders 6 performed their own ADLs 4 needed assistance with ADLs
Facility B (n = 9) 9 men All White 40-68 (average 55) 1.5-10 years (average 4.7 years) Substance abuse disorders, mental health conditions, diabetes 5 performed their own ADLs 4 needed assistance with ADLs
conditions, physical challenges, and care needs. This self-reported information is summarized in Table 1. The research methods included in-depth interviews with younger residents, focus groups with care staff, and discussions with administrators (directors of care) in the two care facilities. In-depth interviews with 19 younger residents were conducted to gather their thoughts, feelings and experiences in their own words. The interview guide’s questions focused on the quality of care, staff interaction, meaningful activity, social interaction, unmet needs, and financial issues. Two to three questions were asked in each of the above areas along with the use of relevant probes to encourage the residents to elaborate on the topics. The interviews ranged from 20 to 85 min, with an average length of 47 min, depending on the residents’ willingness to discuss and elaborate on the questions. In each facility, one 60-min focus group interview with five to seven staff members was conducted with the social worker, an activity worker, care aides, and nurses. The staff were chosen and invited to the study by the director of care based on their level of interaction with the younger residents in the facility. To have information rich cases, purposeful sampling was also used in selecting staff members. Staff who had daily interactions with the participating residents were selected as key informants in the focus groups. All in-depth interviews and focus groups were conducted by the first author, who was the principal investigator of the study. The focus groups with staff took place after the in-depth interviews with the residents and completion of a preliminary analysis of the interview data. This allowed for
Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
6
Journal of Applied Gerontology XX(X)
highlighting the major themes from the resident interviews as context for discussions in the focus group sessions. The discussions with the two administrators were approximately 20 min long and focused on the organizational policies and procedures with regard to younger residents. The administrators were interviewed separately to have the staff focus groups take place in a confidential atmosphere, where the staff could discuss issues and concerns without the presence of the upper management. All interviews and focus groups were tape recorded, transcribed verbatim, and analyzed throughout the data-collection process and analysis. Data analysis involved identifying, coding, categorizing, classifying, and labeling the primary patterns in the data to determine significance and core content of the interviews (Patton, 2002). Initial analysis involved line-by-line open coding to reveal potential insights, meanings and themes (Charmaz, 2002). Subsequently, focused coding refined and labeled the data by identifying and linking the data into general categories and themes (Charmaz, 2002; Esterberg, 2002). Finally, conceptually similar “focused codes” were clustered to identify higher order concepts or “themes.” Primary analyses were conducted by the first author and peer debriefing was done in consultation with the second author, who acted as an “auditor” to ensure that the identified codes and themes are indeed supported by the data (Lincoln & Guba, 1985). Data saturation was reached in the final few interviews as no additional concepts were emerging in the data analysis. As the emergent themes provided depth and significance, and given the modest scope of this study (Charmaz, 2006), additional interviews were not conducted after the 19 in-depth interviews.
Results Three themes developed from the interview data: (a) a new chapter in life, (b) experiencing quality of life, and (c) nature of social life. The first theme, a new chapter in life, evolved from two codes: “big picture on quality of life” and “adapting to a new life.” The second theme, experiencing quality of life, contains five codes: “frustrations,” “reporting on quality of care,” “environment,” “unmet needs,” and “money matters.” The third theme nature of social life, related to social activities of the residents and is based on three codes: “challenges of engagement,” “community connections,” and “interactions with other residents.” The three themes and their constituting codes are presented here.
A New Chapter in Life Theme, a new chapter in life, is composed of two codes: “defining quality of life” and “adapting to a new way of life.” Overall, this theme is about a new Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
Hay and Chaudhury
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beginning in life and how quality of life is understood in this new phase of life. The first code provides an understanding of how the respondents define and understand quality of life, as well as any changes therein since moving into the care home. The second code discusses how the respondents adapted to their new chapter in life. Defining quality of life represents how the residents broadly defined what “quality of life” meant for them and the nature of their current quality of life. The majority of residents defined quality of life as being able to “do the things that you want to do” or being able to have assistance doing activities of daily living that they could no longer able to carry out independently. In defining their quality of life, responses varied in a wide range from “the quality of my life is terrible! It’s terrible!” to “in a few words . . . I would say good.” Interestingly, half of the participating residents reported a relatively negative quality of life, whereas the other half reported a somewhat positive experience. A few residents compared their life in the care facility not as bad but better than alternative negative circumstances. James put it, “now I’m not bad I suppose, it’s not great but it’s far from living under a bridge.” Several participants reported a negative lifestyle change when moving into the care facility, with a strong thread of sense of loss. Issues of loss regarding friends and family, freedom, space, privacy and belongings, and sexual relations were all mentioned. Adapting to New Life emerged as an important code, both in terms of adapting to living in a care facility, as well as the coexisting struggle of adapting to their illness or physiological conditions. The majority of participants had lived in a long-term care facility for more than a year, with the average length of stay being approximately 4 years. Four adapting strategies arose from the responses: acceptance, positive attitude, personal methods, and faith. Those who accepted their situation seemed to adapt better and, in turn, were likely to be happier in their daily life. Many participants described “making the best of it,” a phrase that Kahn (1999) used to entitle his study, Making the Best of It: Adapting to the Ambivalence of a Nursing Home Environment. One dimension that he described was the belief that the participants had “no other option” (Kahn, 1999), making it the best place to be, as they could imagine their circumstances could be much worse. This study found similar findings as many participants spoke about these same issues as they came to accept life in a care home in the absence of no better alternative. Acceptance of life in an institutional environment may not be unique to the younger population as all residents entering a care home are likely to adapt; however, the transition and adjustment process for younger residents may be atypical. The residents also talked about how their positive attitude and personality had helped them adapt to living in this situation. One resident attributed this to being able to adapt to his “deep strength,” whereas others Downloaded from jag.sagepub.com at UNIV CALIFORNIA SAN DIEGO on September 6, 2015
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Journal of Applied Gerontology XX(X)
attributed it to being “positive” or “happy” people. This finding corresponds with the findings from Donnelly et al.’s (2007) study with younger residents, which reported that “being adaptable, having a positive attitude, being flexible, and accepting their fate” were the qualities that the participants identified as important to their quality of life (Donnelly et al., 2007). Activities such as bringing in their own food, taking their own salad dressing to the dining room, and concentrating on their hobbies (e.g., playing the guitar or doing artwork) were mentioned as their ways of adaptation in the new environment. Finally, a few residents talked about their religious beliefs as a means to adjust to life in residential care and living with their illness. They reported that when they got diagnosed with their illness or when they moved into the care home, they turned to their faith or began a search for one. The process of adapting to a new life in a long-term care facility was reported as a process that took time; therefore duration of residence may play a role in individual responses regarding adapting to this new life. A few participants recalled that it was not easy in the beginning and it took some time to get used to their new life.
Experiencing Quality of Life Throughout the interviews, several quality of life factors were perceived as important and often referenced by the residents. In this thematic cluster, the constituting codes are “frustrations,” “quality of care,” “environment,” “unmet needs,” and “money matters” as they reflect various experiential aspects of the quality of life of younger residents. Frustrations with other residents and living with the ill and dying were reported by numerous participants. Frustrations with other residents were mainly due to living with residents with dementia, which was described as sometimes challenging. For the younger and often more able-bodied residents, it was also challenging to live with older individuals who were ill. From their perspective, it was like having an unwelcome preview of what their lives might be like in the future, as one resident expressed, “I feel like I’m going to be like that. I’m going to be one of those patients.” Mullins and Lopez (1982) compared the incidence of death anxiety among the young-old (>75) and old-old (
