Jean Ann Summers and Dot Nary
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.
- 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?
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.
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
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.
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.