Intestinal ostomies and informal caregiving for colorectal cancer survivors

描述(申请人提供)：在今天的美国，有100多万人生活在肠造口，其中大多数是结直肠癌(CRC)的幸存者。结肠造口或回肠切开是一种身体损伤，会导致大便失禁，除非每天通过特殊的设备、饮食和行为进行适当的管理。失去独立管理造口的能力--无论是由于急性疾病、并存疾病或功能衰退--可能会将造口从可控的损害转变为严重的丧失权力、耻辱和残疾的根源。我们提议的民族志将使用残疾框架的社会模型，以更好地理解这一人群中残疾和照料之间的相互关系。肠道管理是一个高度个人化的问题，可能会使人蒙羞，日常造口管理涉及饮食、造口设备维护和消除方面的规则和常规。因此，我们的中心假设是，造口对残疾的经历和照顾方面有深远的影响，在造口人功能状态的变化和照顾情况的转变期间，这些影响将特别严重。 我们的研究延续了一项关于长期结直肠癌幸存者的生活质量的长期研究计划。这项研究的具体目的是调查患有肠造口的长期结直肠癌幸存者(自确诊以来至少5年)及其非正式照顾者(例如，配偶或亲属)(N=30对夫妇)的护理挑战和应对策略。我们将进行深入访谈并观察参与者，以了解以下内容：1)肠造口术如何影响残疾和护理体验；2)残疾和护理体验中的关键转变和挑战；3)造口者及其护理人员应对护理挑战的策略。 这项研究解决了对长期癌症幸存者的护理这一未被充分研究的话题，尤其是通过造口来应对老龄化带来的功能挑战。我们将提供关键信息，帮助设计有效和理想的方法，以改善患者及其家人的功能和生活质量。最后，这项研究是基于可推广到全美社区的非转诊管理型护理人群。 公共卫生相关段落：我们将研究对长期癌症幸存者的护理，特别是通过造口来应对老龄化的挑战，造口是腹部的肠道开放。除非每天使用特殊的设备、饮食和行为进行管理，否则造口会导致大小便失禁。在今天的美国，有100多万人生活在肠造口术中，其中大多数是结直肠癌(CRC)幸存者。我们的研究将提供信息，帮助设计方法来改善长期接受造口的结直肠癌幸存者及其家人的功能和生活质量。

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.