Intestinal ostomies and informal caregiving for colorectal cancer survivors

描述（由申请人提供）：今天在美国，超过一百万人患有肠造口，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身体损伤，导致肠失禁，除非每天使用特殊设备，饮食和行为进行适当管理。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-都可以将造口术从可管理的损害转变为深刻的剥夺权力，耻辱和残疾的来源。我们提出的人种学将使用残疾框架的社会模型，以更好地了解残疾和残疾之间的相互关系，在这个人口。肠道管理是一个高度个人化和潜在的污名化问题，日常造口术管理涉及饮食，造口术设备维护和消除周围的监管和例程。因此，我们的中心假设是，造口深刻影响残疾和康复方面的经验，这些影响在造口者的功能状态变化和康复情况的转变过程中尤其严重。 我们的研究延续了一项关于长期结直肠癌幸存者生活质量的长期研究计划。本研究的具体目的是检查患有肠造口的长期CRC幸存者（自诊断以来至少5年）及其非正式照顾者（例如，配偶或亲属）（N=30对）。我们将进行深入访谈并观察参与者，以发现以下内容：1）肠造口术如何影响残疾和护理体验; 2）残疾和康复体验的关键转变和挑战; 3）造口者及其护理人员科普康复挑战的策略。 这项研究解决了长期癌症幸存者的护理问题，特别是造口术对衰老的功能挑战。我们将提供关键信息，帮助设计有效和理想的方法来改善患者及其家属的功能和生活质量。最后，这项研究是基于非转诊管理的护理人群，是概括到整个美国的社区。 公共卫生相关性段落：我们将研究长期癌症幸存者的护理，特别是造口术的老龄化挑战，造口术是腹部的肠道开口。造口术可能导致失禁，除非每天使用特殊设备，饮食和行为进行管理。在今天的美国，超过100万人，其中大多数是结直肠癌（CRC）幸存者，生活在肠造口术。我们的研究将提供信息，这将有助于设计方法，以改善功能和生活质量的长期CRC幸存者与造口和他们的家庭。

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.