Intestinal ostomies and informal caregiving for colorectal cancer survivors

描述（由申请人提供）：在今天的美国，超过100万人生活在肠造口术中，其中大多数是结直肠癌（CRC）幸存者。结肠造口术或回肠切开术是一种导致肠失禁的生理损伤，除非在日常的基础上通过特殊的设备、饮食和行为进行适当的管理。失去独立管理造口术的能力——无论是由于急性疾病、合并症还是功能下降——都可能使造口术从一种可控制的损伤转变为一种严重的丧失权力、耻辱和残疾的根源。我们提出的人种学将使用残疾框架的社会模型来更好地理解这一人群中残疾和护理之间的相互关系。肠道管理是一个高度个人化和潜在污名化的问题，日常造口管理涉及饮食、造口设备维护和消除方面的规定和惯例。因此，我们的中心假设是，造口术深刻地影响了残疾体验和护理方面，并且这些影响将在造口者功能状态的变化和护理情境的转变中尤为严重。

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.