Participatory curriculum development for health and independent living for disabled people: a qualitative study of participant experiences.

Participatory curriculum development is an approach that draws on participatory research philosophy by engaging members of intended audiences in the curriculum development process. This is a fairly new approach to curriculum development, which has seldom been applied in health promotion and, to our knowledge, has not previously been used to develop curriculum with disabled people. In this project, participatory curriculum development was used to both develop a new curriculum and revise an existing curriculum for in-person, web-based delivery. We engaged in this process with Center for Independent Living staff members, twelve of whom we interviewed post-engagement. We assessed the development process for equitable engagement and sharing of power and identified three relevant main themes: learning, collaborating, and empowering. Our project partners engaged collaboratively in project development and believed the curriculums would empower their intended end-users. However, they desired greater sharing of power during the process to create an equitable experience.

Hopefulness and meaning in adults with disabilities' physical activity: A qualitative study.

PURPOSE/OBJECTIVE: The body of knowledge regarding the processes involved in changing physical activity behaviors in people with disabilities is very limited. This qualitative study is a follow-up to a pilot study on an individualized health coaching intervention for adults with any type of disabilities, titled Health My Way, that used a disability-specific health-promotion curriculum. In the original study, we found that participants in the health coaching intervention experienced improved health-promoting behavior, notably physical activity. In the current follow-up study, we examined the relationships among participants' personal sense of meaning and hope and the physical activity change process. RESEARCH METHOD/DESIGN: Participants (n = 12) were a subset of participants from the original pilot study, who were adults with any type of disability, recruited by convenience sampling. These participants completed in-depth interviews to explore possible interactions among health coaching, health behavior changes (including physical activity), meaning, and hope. The curriculum-based health coaching intervention involved weekly, individual coaching for up to 12 weeks. We used thematic analysis to analyze interview data. RESULTS: We identified three main themes: tapping into sources of meaning, increasing hopefulness, and hopelessness combined with lack of meaningful engagement. CONCLUSIONS/IMPLICATIONS: In the context of health coaching for people with disabilities, identifying sources of personal meaning appears to be necessary for the initial motivation for goal-directed action regarding physical activity. Subsequent generation and maintenance of hope appear to be vital for maintaining physical activity in this population. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Health Coaching for People With Disabilities: An Exploratory Mixed-Methods Study.

PURPOSE: To expand the reach of health-promotion efforts for people with disabilities, we piloted a health-coaching intervention with a disability-specific curriculum. We evaluated the intervention's effects on health-related quality of life and health behavior change. DESIGN: Mixed-methods research design using pre-post measures and semi-structured interviews. SETTING/PARTICIPANTS: A convenience sample of community-dwelling adults with disabilities (n = 39). INTERVENTION: Participants engaged in a curriculum-based health coaching intervention, titled Health My Way, which used weekly one-on-one coaching for up to 12 weeks. METHODS: Participants completed pre- and post-intervention surveys including questions from the Health-Related Quality of Life (HRQOL) measure and the Health-Promoting Lifestyle Profile II. A subset of participants completed in-depth interviews to explore how health coaching influences health behavior change (n = 12). RESULTS: We found statistically significant effects on poor-health days due to physical and mental health, and effects on physical activity. We saw additional effects with engagement in relevant curriculum content. Qualitative main themes (tailoring of information, enthusiasm for personally meaningful goals, and social support) indicated processes by which health coaching supported health behavior changes. CONCLUSIONS: The results of this pilot study indicate health coaching appears to be effective for improving HRQOL and health behavior, especially physical activity, for people with disabilities. Apparent key factors include enthusiasm for personally meaningful goals, having tailored information, and social support.

Effects of an exercise intervention on participation reported by people with disabilities: A mixed methods randomized trial.

BACKGROUND: Despite a long history of research on the benefits of exercise for people with mobility impairments, little is known about how exercise affects participation in their daily activities. OBJECTIVE: This randomized mixed-methods study examined the effects of participating in a structured community-based exercise program on pain, depression, fatigue, exertion and participation in daily activities. METHOD: Study participants were recruited from a population-based sample of people who returned a survey (n = 800) and indicated they would be willing to participate in another study. The intervention group was randomly assigned to participate in a physical therapy evaluation and 30 exercise sessions within four months and the control group completed measures only. Ecological momentary assessment and a daily diary was used to evaluate treatment outcomes for the intervention relative to the control group on pain, depression, fatigue, exertion and participation in high exertion activities. We also interviewed a subset of intervention participants to solicit their lived experience from engaging in the exercise intervention. RESULTS: Exercise intervention participants reported 28% less pain and 19% less fatigue than control participants. They also reported engaging in 11% more bathing and grooming, 22% more household chores, and left their homes 13% more than control participants. These results were mirrored in qualitative interview results. CONCLUSIONS: Participating in an exercise program leads to less pain and fatigue and more participation in activities that require relatively high levels of exertion like bathing and leaving home.

Is the presence of home entrance steps associated with community participation of people with mobility impairments?

BACKGROUND: Little is known about how home entrances are related to community participation for people with mobility impairments. OBJECTIVE: This investigation explored how the need to navigate steps at the entrance of a home affects the community participation levels of people with mobility impairments. METHODS: This survey study used pre-measure data collected from three different samples. Participants were adults living independently in the community aged 18-94 years old who self-reported having a mobility impairment. Measures included the Brief Community Engagement Questionnaire to examine potential differential effects on the number of non-discretionary trips people make into the community (e.g., getting groceries, medications) versus the number of discretionary activities (e.g., socializing outside the home) people reported over seven days. RESULTS: People with mobility impairments were less likely to report a stepped entrance than people without MI, but when the entrance they use the most had steps they reported significantly higher exertion to use the entrance. The presence of steps had no effect on non-discretionary trips (p = .74), but was associated with 49% (p < .01) fewer discretionary activities reported by people with mobility impairment relative to those without MI. CONCLUSION: Steps at the home entrance of people with mobility impairment may be an important mediating factor in their level of participation. When researchers and practitioners evaluate interventions that aim to increase community participation of people with mobility impairment, they should control for the presence of steps at their home entrance.

Effects of a consumer driven home modification intervention on community participation for people with mobility disabilities.

BACKGROUND: Community participation has become a key outcome measure for people with disabilities. This has resulted in a shift in researchers focus from the individual to the environment. However, research has focused primarily on participation barriers in the community with limited research examining the role of the home environment. For people with mobility disabilities the home environment is the starting place for community participation and research is needed to understand the relationship between the home and participation outcomes. OBJECTIVE: This study explores the effects of a consumer-driven home modification intervention on community participation for people with mobility disabilities. METHODS: We conducted a randomized control trial (from June 2017-April 2019) of the effects of a consumer-directed home modification intervention on community participation. The intervention, the Home Usability Program, was implemented with consumers at two different Centers for Independent Living (N = 195) and included a self-assessment of their home environment and implementation of a home usability change. RESULTS: The Home Usability program positively affected the community participation of people with mobility disabilities. Overall, intervention participants reported a 39.5% (p < .05) increase in social and recreational activities immediately following the intervention relative to the control group after controlling for health status and month when outcome data were collected. Six months after the intervention, this effect returned to baseline. CONCLUSIONS: Community-based, consumer-driven home modification programs show promise for improving community participation outcomes among people with disabilities, however, more research is needed to understand why results did not persist.

Health status changes with transitory disability over time.

RATIONALE: The six-question disability set from the American Community Survey serves as the national standard for measuring disability across all surveys conducted by the U.S. Department of Health and Human Services. These questions are intended to identify people who experience a long-term disability, and data from these questions are frequently interpreted as capturing discrete groups of individuals. Recent research has shown that a significant proportion of individuals respond to these questions inconsistently over time, possibly indicating that the six-question set also identifies transitory disability. However, it is unclear if these inconsistent responses are associated with changes in health status. We begin to test the validity of these observations by exploring how changes in health related quality of life correspond to changes in disability status. METHODS: We recruited 525 participants to complete a longitudinal paper and pencil survey four times over 18 months that included the six disability questions, measures of health related quality of life, and mobility equipment use. We computed within person changes in health related quality of life variables to investigate how changes in disability status are associated with changes in health status. RESULTS: Among respondents who reported disability, half or less consistently reported the same disability. Additionally, respondents who changed disability responses also reported changes in health related quality of life. For example, when individuals transition into walking disability, their health-related quality of life index decreases by, on average, 0.18 s.d. (p<0.05), and when individuals transition out of walking disability their health-related quality of life index increases by, on average, 0.27 s.d. (p<0.001). CONCLUSION: The six-question set identifies people who experience both enduring and transitory disability. Changes in health related characteristics correlate with changes in disability status. This suggests that observed transitions in disability reflect real changes in perceived health and impairment.

Transitory and Enduring Disability Among Urban and Rural People.

BACKGROUND: Disabilities are not evenly distributed across geography or age, yet few studies on disability have considered these factors. The purpose of this study was to explore rural-urban differences in disability rates, particularly related to gender and race, and what other rural-urban disparities help explain these differences. METHODS: Utilizing the 2008-2016 Current Population Survey (CPS), we first examined rural and urban disability trends by gender and race, estimating means and rural-urban percentage differences for men and women by race and conducting t test analysis to test group differences by age cohort (eg, comparing white, non-Hispanic, rural 15- to 24-year-old women to white, non-Hispanic, urban 15- to 24-year-old women). We then conducted a logistic regression to explore whether or not the effects of rurality on disability rates could be explained by rural-urban differences in demographic and socioeconomic characteristics. RESULTS: Descriptively, rural people report disability at higher rates than urban people across nearly all age category, gender, and racial combinations. These differences are more pronounced for nonwhite respondents in middle to older age categories. Additionally, while some of the rural disability disparity can be explained by adding demographic and socioeconomic variables to the logistic regression model, the effect of rurality remains significant. CONCLUSIONS: Our findings suggest that when researchers, policy makers, and service providers are addressing rural and urban differences in health and well-being, self-reported disability is another factor to consider. Future work should be mindful of how disability and space intersect with gender and race, creating significant disparities for people of color in rural places.

Life Starts at Home: Bathing, Exertion and Participation for People With Mobility Impairment.

OBJECTIVE: To investigate the relationship between perceived exertion while bathing/dressing/grooming and associations with social-recreational activities outside the home for individuals with mobility impairment (MI). DESIGN: A 2-study approach was used to examine data from the American Time Use Survey (ATUS) and primary data from the Health and Home Survey (HHS). The relationship between bathing/dressing/grooming and engagement in social-recreational activities was explored, as well as the role that exertion in the bathroom may play in participation in these activities. SETTING: General community setting. PARTICIPANTS: For the ATUS survey, participants (n=6002) included individuals who reported an MI. For the HHS, 2 mail-based recruitment methods were used to recruit a sample of individuals with MI (n=170) across 3 geographically diverse U.S. communities. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participation in social and recreational activities. RESULTS: People with MI (relative to those without MI) were less likely to report spending any time bathing/dressing/grooming on a given day, but spent more time when they did. People with MI reported higher exertion while bathing/dressing/grooming than people without. People with MI were less likely to leave the house or engage in social-recreational activities on days where they did not engage in bathing activities. People who reported greater exertion in the bathroom engaged in fewer social-recreational activities. CONCLUSIONS: Exertion in the bathroom may present a barrier to participation, indicating a relationship between exertion in the bathroom and social-recreational participation. Research that examines the impact of home modifications on exertion and participation is needed.

Disability Items From the Current Population Survey (2008-2015) and Permanent Versus Temporary Disability Status.

OBJECTIVES: To examine longitudinal responses to the disability indicator questions that have been adopted as the standard across national surveys sponsored by the US Department of Health and Human Services. METHODS: Data from the Current Population Survey between 2008 and 2015 were linked to create a longitudinal sample of 721 178 individual respondents. RESULTS: Responses to the disability questions fluctuated significantly. Although 17% of all respondents reported a disability at some point, only 3% consistently reported the same set of disabilities. Demographic differences were found between people who always reported a consistent set of disabilities and those whose responses fluctuated. CONCLUSIONS: The disability questions capture 2 discrete groups: people who experience a permanent disability and those who experience a temporary disability. Demographic differences between these groups suggest that this is not simply due to measurement error.

A comparative analysis of Center for Independent Living staff and board of directors regarding CIL services and consumer participation.

Community living of people with disabilities spans independent living and community engagement. Consumer choice and control of their level of community participation requires community accessibility, resources and supports. Some people with disabilities have difficulties procuring and maintaining these resources. Centers for Independent Living (CIL) are advocacy and service agencies that have been empowering consumers to meet their needs for over 40 years. Despite this history, little is known about the value of CIL services for increasing community participation of people with disabilities. We administered the CIL Participation Service Survey to 420 CIL staff members and 107 CIL board members to examine their opinions about the relative value of different CIL services for increasing community participation of their consumers. Results indicated that both staff and board members have very high regard for the value and quality of CIL services. The Independent Living (IL) philosophy of consumer choice and control was among the most highly rated aspects of CIL service delivery for both staff and board members. Overall, staff and board member responses were very consistent in terms of the top-rated strengths and weaknesses of CIL services for increasing participation among consumers. Differences appeared to reflect the daily staff focus on specific consumer need versus board members' view of larger community issues.

Can people catastrophize barriers? An exploratory analysis of the association between pain catastrophizing and perceptions of environmental factors.

BACKGROUND: Measurement of the environment is taking on increased importance for understanding variability in participation. Most measures of the environment use subjective ratings, yet little is known about how people appraise the environment. OBJECTIVE: /Hypothesis: We conducted this post-hoc study to examine whether or not catastrophizing, an important variable for understanding how pain contributes to disability, may be related to ratings of the environment. We hypothesized higher pain catastrophizing scores would be associated with greater environmental barriers and fewer facilitators. METHODS: Individuals with functional impairments (N = 525) were recruited from a population-based random sample of households in a small western city in the United States to complete a paper-based survey about their health and community living experiences. We conducted exploratory regression analyses to investigate associations with environmental factor ratings. RESULTS: We found substantial associations between pain catastrophizing and both environmental barriers and personal factor problems after controlling for demographics, participation assessed by community trips per week, health conditions, impairment and pain level. The models accounted for 28% of the variance in environmental factor ratings and 52% of the variability personal factor ratings. We also present odds ratios for the association between personal characteristics and the likelihood of endorsing EF and PF. CONCLUSIONS: A variety of individual characteristics are associated with ratings of both environmental and personal factors that impact participation. Among these, pain catastrophizing is a robust predictor of EF and PF ratings which suggests future research designed specifically to test this relationship may generate useful results for developing interventions to increase participation.

Living Well with a Disability, a Self-Management Program.

Approximately 56.7 million persons in the United States have functional impairments that can lead to disability. As a group, persons with disabilities show disparities in measures of overall health when compared with the general population. Much of this can be attributed to secondary conditions rather than to the impairment itself. Persons with disabilities can prevent and manage many of the conditions that contribute to these disparities. The Living Well with a Disability program was developed to support persons with disabilities to manage their health. The curriculum helps participants achieve early success in self-management of quality-of-life goals to build confidence for making health behavior changes; it includes 11 chapters that facilitators use to conduct an orientation session and 10 weekly, 2-hour sessions. The program has been implemented by 279 community-based agencies in 46 states. On the basis of the data from the field trial, these community applications have served approximately 8,900 persons since 1995, resulting in an estimated savings of $6.4-$28.8 million for health care payers. Persons with disabilities have unique needs that can be addressed through multiple levels of intervention to reduce health disparities. The Living Well with a Disability program is a promising intervention that has demonstrated improvements in health-related quality of life and health care use.

Why stay home? Temporal association of pain, fatigue and depression with being at home.

BACKGROUND: Community participation is important to most people with disabilities despite the fact that common secondary conditions like pain, fatigue and depression may increase the difficulty of leaving home. Despite decades of research on these secondary conditions, little is known about how they are associated with being at home. OBJECTIVE: We used Ecological Momentary Assessment data to examine within subject fluctuation in these secondary conditions to examine their effect on the likelihood that participants remain at or return home. METHODS: Participants (n = 139) were recruited from a population based sampling frame to complete an Ecological Momentary Assessment that queried their location and experience with secondary conditions six times a day for two weeks. RESULTS: Between subjects secondary condition ratings averaged across time periods indicated that pain and depression were associated with the share of measurement periods that respondents reported being at home. Within subject results indicated that a standard unit increase in pain, fatigue and depression was associated with being home one to two days later. Within day results indicated that increases in pain and fatigue were associated with increased likelihood of being home later, but increases in depression were associated with lower likelihood of being home later. CONCLUSION: These results suggest there may be a complicated relationship among these secondary conditions and community participation with effects observed both across and within days. One interpretation suggests that secondary condition severity is tempered by adjusting participation. These results may have implications for intervening on these secondary conditions.

An investigation into the temporal scaling of community participation measurement.

PURPOSE: Community participation remains fundamental to contemporary models of disability. However, the effect of temporal scaling on the measurement of participation has not been explored. This study examined the similarities and differences between two different temporal scales (i.e., seven-day recall vs. in situ) on participation measurement. RESEARCH METHOD: We collected seven-day retrospective recall data using a self-report paper-and-pencil measure (i.e., the Brief Community Engagement Questionnaire) from a community-based sample (N = 525) of individuals who endorsed one or more items of the American Community Survey disability screening questions. A subset of these participants (n = 148) completed an ancillary ecological momentary assessment (EMA) study, which involved repeated, in situ, daily measurements of participation for two weeks. Corresponding participation items from each method were compared. RESULTS: Survey and EMA participation data were relatively consistent over repeated measurements, suggesting reliability across methods and temporal scaling. Consistency across activities was most evident for major activities that tend to require regular behavior (e.g., work and volunteering). Conversely, lower base rate behavior demonstrated less stability regardless of temporal resolution. CONCLUSION: Understanding the implications of temporal resolution for participation measures is valuable for advancing ecological participation models. Future research is needed to develop consensus on participation measurement and provide a solid basis for developing ecological models of participation.

Happiness, Pain Intensity, Pain Interference, and Distress in Individuals with Physical Disabilities.

OBJECTIVES: The aim of this study was to examine how the construct of happiness is related to pain intensity, pain interference, and distress in individuals with physical disabilities. DESIGN: This study involves cross-sectional analyses of 471 individuals with a variety of health conditions reporting at least mild pain. RESULTS: The first hypothesis that happiness mediates the relationship between pain intensity and two outcomes, pain interference and distress, was not supported. The second hypothesis was supported by a good fitting model (χ2(10) = 12.83, P = 0.23, root-mean-square error of approximation = 0.025) and indicated that pain intensity significantly mediated the effect of happiness on pain interference (indirect effect: ß = -0.13, P < 0.001) and on distress (indirect effect: ß = 0.10, P = 0.01). Happiness showed a significant direct effect on pain intensity (ß = -0.20, P < 0.001). A third model exploring the happiness components meaning, pleasure, and engagement fitted well (χ2(4) = 9.65, P = 0.05, root-mean-square error of approximation = 0.055). Pain intensity acted as a significant mediator but only mediated the effect of meaning on pain interference (indirect effect: ß = -0.07, P = 0.05) and on distress (indirect effect via pain interference: ß = -0.04, P = 0.05). Only meaning (ß = -0.10, P = 0.05), but neither pleasure nor engagement, had a significant direct effect on pain intensity. CONCLUSIONS: Participants who reported greater happiness reported lower pain interference and distress through happiness' effects on pain intensity. Experiencing meaning and purpose in life seems to be most closely (and negatively) associated with pain intensity, pain interference, and distress. Findings from this study can lay the groundwork for intervention studies to better understand how to more effectively decrease pain intensity, pain interference, and distress.

Association between age, distress, and orientations to happiness in individuals with disabilities.

PURPOSE/OBJECTIVE: To determine how age and distress are associated in individuals with disabilities, and how happiness and its components (meaning, pleasure, and engagement) mediate or moderate this relationship. RESEARCH METHOD/DESIGN: These were cross-sectional analyses of survey data from 508 community-dwelling adults with a variety of self-reported health conditions and functional disabilities. Measures included the Orientations to Happiness Questionnaire and items from the Behavior Risk Factor Surveillance System. RESULTS: Greater distress was associated with lower global happiness in both mediation and moderation models. The mediation model showed that middle-aged participants (age: 45-64) scored lowest in global happiness, and the effect of age on distress was partially mediated by happiness. None of the happiness components mediated the relationship of age on distress. The moderation model showed a significant interaction effect for age and global happiness on distress, where younger participants low on happiness were significantly more distressed. Of the three happiness components, only meaning was significantly associated with distress. There was a significant interaction between age and meaning, where participants who were younger and scored low on the meaning scale reported significantly higher distress. CONCLUSIONS/IMPLICATIONS: Findings from this study lay groundwork for the development of clinical interventions to address distress in individuals with functional disabilities. Middle-aged and younger people with disabilities may be particularly affected by lower levels of happiness and might benefit from psychological interventions that focus on increasing overall well-being and providing meaning and purpose in life.

Working well with a disability: health promotion as a means to employment.

PURPOSE/OBJECTIVE: The purpose of this study was to test the utility of the Working Well with a Disability health-promotion program with vocational rehabilitation (VR) clients. Health-promotion interventions have been shown to reduce limitation from secondary conditions, which can be a significant barrier to labor force participation among people with disabilities. The state and federal VR system represents a potential access point for delivery of health-promotion activities. RESEARCH METHOD/DESIGN: A total of 297 VR clients participated in a randomized trial of the Working Well health promotion program. Control and intervention participants provided baseline and four waves of quarterly follow-up data. Data were analyzed with repeated-measures ANOVA. RESULTS: Intervention-group participants who attended over half of the Working Well sessions reported significantly lower rates of limitation from secondary conditions over the 1-year study span, F(1, 124) = 4.11, p = .004. Control-group participants also experienced significantly lower rates of limitation, but pre- to postdifferences were less dramatic, F(1, 308) = 4.19, p = .006. CONCLUSIONS/IMPLICATIONS: Overall, health data indicated that the Working Well program may be particularly helpful to VR clients with higher rates of secondary health conditions and may represent one strategy for overcoming barriers to employment.

Nursing home emancipation: A preliminary study of efforts by centers for independent living in urban and rural areas.

BACKGROUND: The U.S. Supreme Court's Olmstead decision affirmed the right of individual with disabilities to live in the community. Centers for independent living (CILs) and other disability advocacy organizations have initiated a wide range of efforts to emancipate (i.e., transition) adults with disabilities from undesired nursing home placements to community living. There is, however, a paucity of published information about the nursing home transition process for adults with disabilities. OBJECTIVE/HYPOTHESIS: The objectives of this research were to: (1) assess the levels of nursing home emancipation services and barriers to nursing home transitions, including the role of secondary health conditions, and (2) to assess nursing home transition policies and procedures. METHODS: We conducted 2 studies. First, we surveyed 165 CILs operating nursing home emancipation programs. Second, we reviewed the written transition policy and procedures documents of 28 CILs from 14 states. RESULTS: Respondents reported transitioning a total of 2,389 residents from nursing homes back to community living arrangements during the previous year, with only 4% of those returning to a nursing home for any reason. While most of the policies reflected many components of a standard model, several components appeared underrepresented. CONCLUSIONS: Findings suggest the need to expand on established programs to build evidence-based practices.

Disability and health behavior change.

OBJECTIVE/HYPOTHESIS: We conducted a review of four health behavior change (HBC) theories (Health Belief, Theory of Planned Behavior, Social Cognitive, and Transtheoretical) to consider how these theories conceptually apply to people with disabilities. METHODS: We identified five common constructs across HBC theories and examined how these commonalities fit within the International Classification of Function (ICF). RESULTS: Four of the HBC constructs appear to be Personal Factors within the ICF, while the fifth represents Environmental Factors. CONCLUSIONS: Using the ICF framework to understand disability and HBC, we propose that including a sense of meaning as another personal factor will further develop HBC theories that lead to more effective HBC interventions for people with disabilities.