Intestinal ostomies and informal caregiving for colorectal cancer survivors

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DESCRIPTION (provided by applicant): In the US today, over one million people are living with intestinal ostomies, most of whom are colorectal cancer (CRC) survivors. A colostomy or ileosotomy is a physical impairment that leads to bowel incontinence unless it is properly managed on a daily basis with special equipment, diet, and behavior. Losing the ability to manage one's ostomy independently -- whether due to acute illness, co-morbidities, or functional declines -- can transform an ostomy from a manageable impairment to a source of profound disempowerment, stigma, and disability. Our proposed ethnography will use a social model of disability framework to better understand the interrelationships among disability and caregiving in this population. Bowel management is a highly personal and potentially stigmatizing issue, and daily ostomy management involves regulation and routines around diet, ostomy equipment maintenance, and elimination. Therefore, our central hypothesis is that having an ostomy profoundly impacts experiences of disability and aspects of caregiving, and that these impacts will be especially acute during changes in ostomates' functional status and transitions in their caregiving situations. Our study continues a long-standing research program on the quality of life of long-term colorectal cancer survivors. This study's specific aims are to examine the caregiving challenges and coping strategies of long- term CRC survivors with intestinal stomas (at least 5 years since diagnosis) and their informal caregivers (e.g., spouse or relative) (N=30 dyads). We will conduct in-depth interviews and observe participants to discover the following: 1) how an intestinal ostomy affects experiences of disability and care giving; 2) key transitions and challenges in disability and caregiving experiences; and 3) strategies that ostomates and their caregivers employ to cope with caregiving challenges. This study addresses the understudied topic of care giving for long-term cancer survivors and, in particular, the functional challenges of aging with an ostomy. We will provide critical information that will help design effective and desired ways to improve the function and quality of life of patients and their families. Finally, this study is based in a non-referral managed care population that is generalizable to communities across the US. Public Health Relevance Paragraph: We will study caring for long-term cancer survivors and, in particular, the challenges of aging with an ostomy, which is a bowel opening at the abdomen. An ostomy can lead to incontinence unless it is managed daily with special equipment, diet, and behavior. In the US today, over one million people, most of whom are colorectal cancer (CRC) survivors, live with intestinal ostomies. Our study will provide information that will help design ways to improve the function and quality of life of long-term CRC survivors with ostomies and their families.