The Resilience Study: Exploring Resilience in Adults with Physical Disabilities in Rural Communities

October, 2016

INTRODUCTION

Resilience is the ability to function well both mentally and physically in the face of major challenges, such as coping with a disability. It is the product of both personal factors (e.g., age when disability occurs or positive attitude) and environmental factors (e.g., education level or social support available).

The Resilience Study aims to understand why some people with disabilities have achieved a good quality of life and are able to participate in their communities despite barriers they encounter. Through this study and its larger encompassing project, we seek to understand how personal and environmental factors influence community participation for people with disabilities in rural areas. With a greater understanding of these factors and how they interact to create resiliency, service providers can take advantage of naturally occurring strategies to develop targeted programs and policies to increase quality of life and community participation for their consumers.

STUDY QUESTIONS

  • How do rural people with disabilities identified as “resilient” cope with everyday stressors associated with having a disability?
  • What personal and environmental factors promote their resilience?
  • What coping strategies and resources do they use that could inform development of interventions for others?

SAMPLE

We held two focus groups comprising rural consumers nominated by two Kansas Centers for Independent Living (CILs). The nominees were considered by the CILs to be living well and involved in their communities.

A total of 17 consumers participated in the two focus groups. Nine males and 8 females were in the group, ranging from 22 to 68 years of age, with an average age of 51. Three participants reported as American Indian/Alaska natives, 1 reported Hispanic, 1 African American, 1 declined to identify, and the remaining 11 reported their race as white.

Twelve of the 17 participants reported their primary disability was some type of physical disability resulting in a mobility impairment (e.g., multiple sclerosis, quadriplegia, back injuries); three reported a chronic disease that resulted in limitations to their daily activities such as COPD or cancer; and two reported their primary disability as a cognitive or affective impairment (autism, bi-polar disorder).

The participants reported living with their disabilities for a range of 1 to 64 years, and many of them for 10 to 12 years. Of those with mobility issues, 6 reported using wheelchairs, 3 used canes, 1 crutches and 1 a walker some or all of the time.

Three participants reported being employed, two reported volunteering in the community, one reported being a student and the remaining 11 participants did not report being involved in community activities, but cited much family and other informal community involvement.

MEASURES

The two focus groups discussed how the consumers used personal coping strategies and community resources to achieve resilience. Participants were asked questions about the following:

    • how they get through the day;
    • how they have coped with particularly stressful or challenging times;
    • how their attitudes or beliefs helped them to cope;
    • what resources they used; and
    • whether they had advice for other people with disabilities who want to live well in rural communities.

RESULTS FROM RESILIENCE STUDY FOCUS GROUP

How People with Disabilities Thrive in Rural Communities This poster displays different skills, strategies, and supports that help people with disabilities thrive in their rural communities. In the center of the poster is an oak tree with the word “resilience” on the trunk. Two main branches come off the trunk: the first says “coping skills,” and the second says “coping strategies.” The “coping skills” branch has seven smaller branches. These say “problem solving,” “identifying role models,” “leadership,” advocacy,” “information-seeking,” “using support,” and “using technology.” Each of the seven smaller branches has an acorn that contains a quote illustrating the corresponding skill. These skills and their associated quotes are listed below. • Problem solving: “There is a little store I can’t get into, so I have my niece go in and get stuff for me.” • Identifying role models: “There was this one guy… I watched him jump out of his wheelchair and onto a counter, and I was just, ‘I want to be like that guy.’ ” • Leadership: “They asked me if I wanted to be on the board, and I said, ‘sure!’ They send me all over the state because I am on the Diversity Council.” • Advocacy: “I am one of those people that if it’s going to benefit me and also somebody else who is disabled, I won’t take ‘no’ for an answer.” • Information-seeking: “No one is volunteering any information. I had to get on the phone and resource it and call…” • Using support: “In a rural community it’s a family, so you have to get out and make yourself part of the family… You can’t be afraid to ask.” • Using technology: “I wouldn’t be able to do half of what I do without a phone. It tells me how to get home if I get lost… I wouldn’t go out walking if I didn’t have that.” The “coping strategies” branch has ten smaller branches. These say, “taking one day at a time,” “reciprocation,” “focus on others,” “taking charge,” “positive self-image,” “sense of purpose,” “positive comparisons,” “analyzing and acknowledging limits,” “sense of independence,” and “persistence.” Each of these ten smaller branches has an acorn that contains a quote illustrating the corresponding strategies. These strategies and their associated quotes are listed below. • Taking one day at a time: “Just stay in today and live one day at a time… Make the best of it for today.” • Reciprocation: “Whenever I go to someone and ask for help, I always try to tie it to something that benefits them. [If] I ask for a cooked meal, I usually say, ‘You can have the same food as me. I’ll pay for it all.’” • Focus on others: “I’ve got four young grandkids… They call me Poppy. And that was another reason to get on the positive side too: family.” • Taking charge: “Exercise improves mood. I feel a lot more able, like I have more control over my muscles… Not only am I more able, I FEEL more able.” • Positive self-image: “I seem to have a pretty successful time doing what I need to do. I see a lot of ways in which I’m more able than I was a few years ago.” • Sense of purpose: “I’ve got two grown sons and a baby… I was thinking, ‘You’re going to have to be a role model.’ So that’s what pushed me to do the best for them.” • Positive comparisons: “I accept my disability and just kind of slow down and say, ‘It’s okay, I’m not in that nursing home no more. You know how horrible that was.’ “ • Analyzing and acknowledging limits: “The hardest thing for me was to accept the fact that I was disabled, to [the point] where I could laugh again and find things I could still do, like grow a garden.” • Sense of independence: “I am a very independent person. I try not to push my boundaries too far to where I get stuck. I know my limits, which is good.” • Persistence: “The best advice I can give is don’t give up, don’t give in. Stay strong. Find out what you can still do.” Below the ground, the oak tree’s roots reach out to water droplets with quotes that illustrate two different types of supports that contribute to resilience. On one side are Formal Supports, which include Personal Care Assistants and Centers for Independent Living and other community programs. On the other side are Informal Supports, which include family, peers, neighbors and community, and spirituality. The quotes associated with each type of support are listed below. • Formal Support, Personal Care Assistants: “Because of the medications that I’m on, I spend a lot of time in la-la land. I rely on the support of my worker to help me look things up, to help me keep track of my weekly appointments.” • Formal Supports, Centers for Independent Living and other community programs: “I think that the CIL is a lot of our biggest lifelines because if it wasn’t for them advocating I don’t think any of us would know where we would be today.” • Informal Support, Family: “Between them [my parents], the rest of the family, and extended friends, there’s like a Plan B. Okay, what do I need to do today… who’s available that I can call to do that.” • Informal Support, Peers: “He checks on me and I check on him. We’ve got another friend who checks on us… We always try to stay motivated and it helps me stay motivated when I’m helping somebody else.” • Informal Support, Neighbors and Community: “That’s one thing I like about rural communities, it is like a little family and they have little get-togethers, and you do become part of a social network.” • Informal Support, Spirituality: “I really had to let go and believe that God’s going to take care of me and that things are going to be alright.” A text box in the bottom corner of the poster contains the question “Which skills, strategies, and supports do you identify in your life?” The contents of this poster come from: Summers, JA, Nary, D. (October 2016). The Resilience Study: Exploring Resilience in Adults with Physical Disabilities in Rural Communities. Missoula, MT: The University of Montana Rural Institute for Inclusive Communities. Retrieved from http://rtc.ruralinstitute.umt.edu/research-findings/resilience-study/. Poster authors are Jean Ann Summers, PhD, Dot E. Nary, PhD, Heather Lassman, MSW, and Lauren Smith, M.S. The contents of this poster were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90RT502501400). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this poster do not necessarily represent the policy of NIDILRR, ALCL, or HHS, and you should not assume endorsement by the Federal Government.

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Text description of the above image available here

The study found that resilience was the result of combinations of two types of supports: external/environmental supports and internal/personal traits and beliefs. Primary themes and subcategories within these two constructs include the following:

  • External/environmental supports and resources include both formal and informal supports. Formal Supports mentioned by these participants were CILs and other community programs and Personal Care Attendants. Informal Supports include family, neighbors/community, peers, and spirituality.
  • Internal/personal traits and beliefs comprise two categories of Coping Skills and Coping Strategies. Coping Skills include: positive comparisons; persistence; sense of independence; sense of purpose; focus on others; reciprocation; taking one day at a time; positive self-image and confidence; analyzing and acknowledging limits and self-acceptance; and taking charge and a sense of mastery. Coping Strategies include: advocacy; leadership; problem-solving; information-seeking; using technology; identifying role models; and using support.

NEXT STEPS

The information and understanding from the focus group participants will be used to create an interview guide for use in the next step of the project, which will be to have in-depth conversations with resilient people with disabilities to learn more about how they developed resilience.

Contributing Authors: Jean Ann Summers and Dot Nary

Quick Links: Health & Wellness

Current Projects

  • Ecological Decision Support for Health Promotion
    Many communities across rural America are far away from healthcare services. Rural residents with disabilities may not be able to get to those services to address their healthcare needs. This project will provide a consumer directed health program to people with disabilities in rural communities that allows them to follow their own needs and interests for health improvement. Participants will use tablet computers and work with local Centers for Independent Living in order to participate in the program.
  • Motivation for Self Management
    This developmental project will develop two multi-media products that community-based agencies can use to deliver state-of-the-art health promotion services to people with disabilities living in the community. The first product, Multi-Media Living Well with a Disability (MMLWD) will be based on the 4th edition of our Living Well with a Disability curriculum that we have developed and implemented over the past 25 years. The second product, Motivation for Self-Management will be a new multi-media health promotion module based on Self-Determination Theory that increases consumer motivation and confidence for engaging in self-management.
  • Resilience in Community Participation
    Employment, social support, health status and the environment influence a person’s ability to deal with difficult experiences. These factors also have an effect on whether or not someone participates in their community. This study will focus on rural resilience to learn more about how people deal with difficulties associated with having a disability even as they participate in the rural community.

Completed Projects

COMPLETED PROJECTS | 2014 - present

 
  • Pain Interference Patterns
    Because many people with disabilities experience significant limitations in their ability to engage in community activities (e.g., shopping, entertainment, etc.), we wanted to know how pain and environmental conditions affected participation in community activities. To help answer this question, we asked people with disabilities to complete 4 surveys over 18 months about their pain levels, environmental barriers, and participation in daily activities. About one-third of these people also completed six surveys for day for 14 days using an electronic diary that asked similar questions. We found that as people experience more fatigue and pain, their community participation decreased.

COMPLETED PROJECTS | 2008 - 2013

 
  • Consumer Self-Managed Use of Rural Healthcare Services
    In rural America, health management resources are not as available as they are in urban areas which makes managing complex health needs more difficult. One way of improving health status for rural Americans with disabilities is to use existing healthcare services that serve rural communities to promote effective health-related self-management.
  • Nursing Home Emancipation
    Many people with disabilities are institutionalized in nursing homes when they could live independently. Nearly forty percent of nursing homes are located in rural communities with limited access to services, family and oversight. Centers for Independent Living (CILs) have worked to move people from nursing home facilities into independent living situations with great success. Few people, once they leave a nursing home, ever return.
  • Peer Support for Rural Mental Health
    People with disabilities have poor access to mental health services in rural areas, a gap that may be decreased through peer specialist services. Peer specialist providers offer a variety of services to people with disabilities and share similar experiences to those they are serving. They provide peer counseling, advocacy and can help in accessing resources. This project developed and offered a peer support training program to Centers for Independent Living staff and peers to help identify and provide support for mental health needs among CIL consumers. Results showed that people sought peer services when they experienced an increase in mental health symptoms which subsequently were reduced back to normal.
  • Peer Support for Secondary Mental Health Conditions
    When people with disabilities experience mental health symptoms, participation in community life can be reduced. This study surveyed people with disabilities in rural communities to see what kinds of mental health conditions they experience. Implementation of a peer specialist training curriculum for CIL staff and peers indicated that people experiencing elevated mental health symptoms presented for peer support. Subsequently, their symptom levels returned to normal.

COMPLETED PROJECTS | prior to 2008

 
  • Living Well with a Disability
    The Living Well with a Disability workshop is a ten-week evidence-based program designed to improve the health and wellness of people with disabilities. People who have taken the workshop report better health, lower medical costs and improved quality of life.
  • Nutrition
    Good nutrition can be facilitated and supported by organizing the home environment. This line of research describes methods for assessing the environment and the ways in which it promotes healthy eating.
  • Secondary Conditions
    Health problems that come as a result of having a disability, such as high blood pressure and weight gain, can limit people from participating in life activities. This project focused on these secondary health conditions and led to the development of the Living Well with a Disability program.

Products & Training

  • Living Well with a Disability Living Well with a Disability is a peer-led health promotion workshop that focuses on improved quality of life through the development of a healthy lifestyle. Training is available.

External Resources