School of Health & Population Sciences, University of Birmingham, Edgbaston, Birmingham, UK.
J Clin Nurs. 2010 Jan;19(1-2):192-207. doi: 10.1111/j.1365-2702.2009.02935.x.
The overall aim of this study is to determine hospice nurses' perception of the importance of genetics to hospice care provision and their personal level of confidence in carrying out genetics-related activities within an end-of-life care context.
Hospices nurses regularly care for patients and their families affected by inherited genetic conditions (e.g. some cancers). Therefore, nurses need knowledge and awareness of the implications of genetic conditions and confidence in their abilities to provide appropriate care and support for patients and families.
Survey.
Questionnaires were sent to a stratified sample of hospice nurses (n = 1149) in England and Wales. Using Likert scales, nurses were asked to rate the importance of and their confidence in undertaking a range of scenario-based activities that accompany caring for a patient and family affected by a genetic condition in the hospice setting. Open questions invited comments on their experiences of nursing patient/family in similar situations. Follow-up telephone interviews were carried out with hospice nurse educators to explore emerging issues.
Response rate was 29% (n = 328). Hospice nurses felt that all aspects of genetics-related care were 'very important' to hospice care, but lacked confidence in their ability to carry out the activities. Many respondents had not considered the relevance of genetics to hospice-care prior to completing the questionnaire but now considered it essential to end-of-life care even if they were not confident to provide it.
Hospice nurses' need genetics education focusing on the psychosocial implications of caring for patients and families affected by genetic conditions to enable them to provide the complex care and support in face of the difficult issues that arise in practice.
This study highlights the genetics education needs of hospice nurses in providing end-of life care for patients and their families affected by inherited genetic conditions.
本研究的总体目的是确定临终关怀护士对遗传学在临终关怀服务中的重要性的认识，以及他们在临终关怀背景下开展与遗传学相关活动的个人信心水平。
临终关怀护士经常照顾患有遗传性遗传疾病（例如某些癌症）的患者及其家人。因此，护士需要了解遗传疾病的影响，并对自己提供适当的护理和支持患者和家庭的能力有信心。
调查。
向英格兰和威尔士的临终关怀护士（n = 1149）进行分层抽样发送问卷。护士被要求使用李克特量表对一系列基于情景的活动的重要性及其进行这些活动的信心进行评分，这些活动伴随着在临终关怀环境中照顾受遗传条件影响的患者和家庭。开放性问题邀请他们对在类似情况下护理患者/家庭的经验发表意见。对临终关怀护士教育者进行了后续电话访谈，以探讨新出现的问题。
回应率为 29%（n = 328）。临终关怀护士认为与遗传学相关的护理的所有方面对临终关怀都“非常重要”，但对自己进行这些活动的能力缺乏信心。许多受访者在完成问卷之前没有考虑过遗传学与临终关怀的相关性，但现在认为即使他们没有信心提供该服务，遗传学也是临终关怀的重要内容。
临终关怀护士需要遗传学教育，重点是照顾受遗传条件影响的患者和家庭的心理社会影响，使他们能够在实践中面对出现的困难问题提供复杂的护理和支持。
本研究强调了临终关怀护士在为受遗传疾病影响的患者及其家人提供临终关怀方面的遗传学教育需求。
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