After viewing the power point presentations and reading the journal article:Pathways of Change Experienced by People Aging with Disability:a focus group study, students willanswer the5questions:
For full credit the student must answer all five
questions. Please number the questions as you answer each one.
- What is the title of the article and who is the author or authors?
- What is the purpose or focus of the article?
- How was the information gathered?
- What are the main findings?
- What is your opinion of the article?
TIDS_A_468353 1697..1704 ++ RESEARCH PAPER Pathways of change experienced by people aging with disability: a focus group study KATHRYN M. YORKSTON, KARA A. MCMULLAN, IVAN MOLTON & MARK P. JENSEN Department of Rehabilitation Medicine, University of Washington, Box 356490, Seattle 98195-6490, WA, USA Accepted February 2010 Abstract Purpose. To examine the issues related to aging with disability from the perspective of the person with the disabilities. Method. Twelve community-dwelling adults with spinal cord injury (SCI), post-polio syndrome (PPS) or multiple sclerosis (MS) participated in focus groups where they were asked open-ended questions about changes related to aging with disability, accommodations made and perspectives on the future. Results. Results of qualitative analysis suggested five major themes related to aging with a disability: (1) Participant identity, including comments about how participants described themselves and their lives with a long-standing disability; (2) Physical pathways including comments about the progression of physical symptoms; (3) Psychosocial pathways, including descriptions of adaptations to disability, the development of emotional well-being and strategies to deal with disability; (4) Changing health care, reflecting improvement noted over time in health care services; and (5) Concerns about the future, including comments reflecting participant uncertainty about the potential course of disability. Conclusions. The process of aging with disability was characterised by multiple pathways. Some, including positive psychosocial adjustment and medical advancements, were favourable, while others, including physical decline, were not. The co-existence of high quality of life in the presence of physical decline is consistent with a larger literature in older adults, and future research should focus on identifying aging factors that may contribute to the buffering the psychological impact of physical decline. Keywords: Aging, qualitative research, adjustment Introduction Disability and aging are processes that are charac- terised by pathways of development or change. The pathways of disability and aging interact in complex ways across the life span. On one hand, people who are free of disability until late in life experience ‘disability with age’ [1]. This includes both people who experience the sudden onset of disability such as stroke or spinal cord injury (SCI) later in life as well as those who experience a decline in function resulting from the cumulative effects of multiple health conditions associated with aging. On the other hand, individuals growing older with long-standing, early-onset disabilities are said to ‘age with disability’ [1]. This includes, for example, middle-aged and older people who experienced the onset of multiple sclerosis (MS) in young adulthood. People ‘aging with disability’ and those who experience ‘disability with age’ differ on a number of key attributes, including age at disability onset, chronologic age and duration of disability, and these differences may work in combination to create distinct pathways of physical and psychological health. Although some processes related to disability with aging have received considerable attention [2,3], far less is known about the pathways of aging with disability. This lack of knowledge creates important gaps in our ability to serve the rehabilitation needs of this population. The lack is the result of a number of factors. First, until relatively recently, people with disabilities were not expected to live into old age. However, recent advances in medical science mean that those with long-standing physical disabilities are living longer. For example, people with SCI are now expected to live *85% of a normal life span (*68 years), and in the past 50 years the survival rate for these individuals has increased nearly 2000% [4,5]. Correspondence: Dr. Kathryn M. Yorkston, Department of Rehabilitation Medicine, University of Washington, Box 356490, Seattle 98195-6490, WA, USA. E-mail:
[email protected] Disability and Rehabilitation, 2010; 32(20): 1697–1704 ISSN 0963-8288 print/ISSN 1464-5165 online ª 2010 Informa UK, Ltd. DOI: 10.3109/09638281003678317 Similarly, although MS is often associated with considerable functional impairment, overall life expectancy is not dramatically altered for these individuals, and 85–90% can expect to live as long as their peers [6]. A second reason that the pathways of aging with disability are only partially understood is its com- plexity. Some elements of the experience of aging with disability, such as declining physical function, have a progressive course, while others, such as psychological well-being and general quality of life, may not. In terms of physical functioning, worsening of physical symptoms is expected in conditions such as MS or post-polio syndrome (PPS) where the disease process is progressive. However, a more rapid decline (relative to those without disabilities) in physical function may be seen in SCI, where increases in the rate of aging of organ systems have been described, and are associated with early development of conditions such as diabetes and cardiovascular disease [4]. Aging with disability is also associated with long-term overuse of parts of the body needed for mobility, leading to symptoms such as shoulder deterioration, postural problems and the increased likelihood of other medical conditions due to the disability itself, such as osteoporosis [4]. The pathways of psychosocial adjustment in people aging with disability are not completely understood. Generally, aging adults report good mental health and adjustment relative to their younger peers, despite an ongoing decline in physical function. A large body of research related to aging demonstrates a decline in perceived stress and increase in well-being with increasing age, believed to be associated with an attentional bias towards positive emotions and a shift towards more emo- tionally meaningful goals [7–10]. Likewise, many adults with serious, long-term disabilities report a good or an excellent quality of life, despite obvious limitations in physical function. For example, in one recent 25-year longitudinal study, people with SCI reported diminished satisfaction with health and social activity over time, but also an increase in self-reported ‘adjustment’ over time [11]. This discrepancy between changes in physical functioning and quality of life over time has been called the disability paradox [12]. However, it is unclear if high quality of life in the presence of disability continues into old age [13]. For people aging with physical disability, physical decline often occurs in the context of other uncontrollable aging related stressors, including retirement, financial strain, bereavement, and changes in social support [8,11,14]. Generally, increasing time since injury is associated with better psychological adjustment in people with disability and both chronological age and time post onset are correlated with some aspects of life satisfaction [15]. Few studies are able to control for the confounding effects of these age-related variables. A third reason for the incomplete understanding of the pathways of disability in those aging with disability relates to the usual methods of study. With the exception of SCI [15–17], most of the research examining the issues related to aging with disability is cross sectional rather than longitudinal. This is of concern because some research suggests that out- comes of cross sectional comparisons may differ from those identified longitudinally [18]. Qualitative methods in which participants tell the story of their experience may provide a useful indication the long- term course of disability. Longitudinal methods are also needed for the development of predictive models of various outcomes [17]. Different models may need to be developed that are specific to each disability diagnosis because the pathways of SCI, the most investigated diagnostic group, may differ from other less studied conditions such as PPS or MS. In summary, despite the increasing number of people aging with long-standing disability, little research has examined changes that occur as one ages with disability. Knowledge of the patterns of aging with disability is critical for provision of the medical, rehabilitative and psychosocial support needed for successful aging. The purpose of this project was to examine the pathways of disability in people aging with long-standing conditions from the perspective of the person with the disability. Methods Participants Participants were recruited through the Aging and Disability, Rehabilitation Research and Training Center, at the University of Washington Medical Center. Three disability populations, SCI, PPS or MS, were studied in order to obtain a variety of experiences related to symptoms, age of onset and progression of disability. Potential participants were identified through participation in previous research or attendance at rehabilitation clinics at the Uni- versity of Washington, and through advertisements with organisations such as the local chapter of the National MS Society. Research participants were included if they were: (1) at least 45 years of age; (2) diagnosed with either SCI, PPS or MS; (3) had lived with their disability for at least 8 years; (4) were able to speak and read English; and (5) provided written informed consent prior to study entry. Additional inclusion criterion included ability to attend a focus group meeting at a location at the University of Washington. Parking and accommodations were covered by the project, and participants received 1698 K. M. Yorkston et al. $25 for their participation. All recruiting and focus group methods were approved by the University of Washington Human Subjects Review Committee. A total of 66 potential participants were contacted. Of these, 20 met inclusion criteria and 15 were scheduled to attend a focus group. Twelve adults with chronic disabling conditions participated in two focus groups1. See Table I for demographics and clinical diagnoses of the study participants. Focus groups data collection One potentially useful tool for understanding the needs of those aging with disability is the focus group. Participants in focus groups are able to provide long-term perspective on issues of concern to them. Additionally, qualitative methods such as focus groups may serve to generate hypotheses for future research. These methods have been fairly widely used to understand issues related to disability in the healthy aging population. Two focus groups, each approximately 2 h in length, were conducted at the University of Wa- shington in Seattle, Washington, a facility that is both centrally located and accessible to people with disabilities. Groups were conducted by three re- searchers (K. M. Y., I. M. & M. P. J.) with two additional staff members who served as note takers. Focus groups were recorded using real-time tran- scription by a court reporter with digital audio recording for verification and backup. After initial clarification of the project, purpose and exploring issues related to protection of confidentiality, the facilitators used a semi-structured interview protocol including open-ended questions to elicit group participation and discussion on a specific topic area. The overarching goal of the focus groups was to elicit information from the study participants around issues of aging with a disability. The following are examples of open ended prompts used: What has changed over time since the onset of your disability or re-occurrence of symptoms? What has changed as you have gotten older? How has your disability affected this, if at all? Have you made any important changes to accommodate your disability as you have gotten older, and if so, what helped you to make those changes? What, if anything, are you doing now to help plan for the future? The facilitators focused the discussion on the topic at hand, attempted to