Chronic Illness, Cascading Crises & the Importance of Social Support
By Theresa Sangram
A newly published longitudinal study explored the lives of individuals who face challenges dealing with multiple chronic conditions. Using a narrative interview protocol, the study explored participants’ experience of their illnesses, daily lives, and relationships with family and friends. The participants showed a pattern of escalating physical difficulties often accompanied by psychological and/or social challenges. The narratives were punctuated by a “cascading” occurrence of illness-related difficulties, which led to subsequent functioning loss, increased efforts toward adaptation, and the receipt as well as provision of social support.
The study involved three qualitative interviews with participants over one year, at approximately four-month intervals. Patients from an urban primary care clinic (associated with a teaching hospital) were invited to describe their experience of illnesses, the efforts they took to adapt to multiple diseases, and social support. Ninety people were selected for this study, which focused on participants’ experiences irrespective of their health care utilization or cost; 38 responded, but five dropped out, resulting in a sample of 33 patients. The final sample included 23 women and 10 men, with an overall mean age of 50.5 years. Twenty-one participants identified themselves as Caucasian, 12 as African-American, and nine as Hispanic. All participants carried multiple medical diagnoses.
In several instances, participants could recall vividly the precise moment in which their lives changed with respect to their illness. For some, this moment was remembered almost as a triggering blow preceding a subsequent avalanche of difficulties; e.g., a 49-year old African-American woman with diabetes, hypertension, menorrhagia, an external iliac artery clot, anemia, and a history of depression and musculoskeletal difficulties stated that her medical difficulties were initially spurred by an accident: slipping down the stairs of a bus due to icy slush.
Participants described common experiences of limitations and difficulties following illness onset and how these accrued. It’s fairly often that the limitations resulted in the loss of the valued roles, relationships, and/or independence, having a marked impact on many participants’ lives. For others, daily routines became dominated by attending medical appointments. The limitations imposed by chronic illness often took significant tolls on important personal relationships and lead to the inability to maintain previously expected familial and social roles, the inability to continue working, the inability to fulfill a long-time ambition, and even loss of income. Other participants emphasized the loss of personal power to manage their own lives.
Despite such challenges, participants made concerted efforts to redress illness-imposed limitations, at times simply by dint of determination, realizing that although they staggered while they walked, they were still able to walk. Spirituality also played a strong role in coming to terms with limitations. Many stories included adapting to and overcoming major limitations by exhibiting a strong will to regain active participation.
Social support also played a key role for many participants, who were able to better function through the support they either received from or gave to others. The findings lean toward a promising source of participant strength through the notion of providing support to others. A person’s recognition of experiential and self-worth—intrinsic to caring for others—may prove an even more potent means toward personal empowerment and resilience in the face of chronic illness.
Source: Sells, D., Sledge, W., Wieland, M., Walden, D., Flanagan, E., Miller, R., Davidson, L. Cascading crises, resilience and social support within the onset and development of chronic conditions. Chronic Illness 5:92-102.
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