家庭与医疗保健专业人员对儿童居家临终关怀试点项目的看法：一项定性研究。
Family and healthcare professionals' perceptions of a pilot hospice at home programme for children: a qualitative study.
作者信息
Brenner Maria, Connolly Michael, Cawley Des, Howlin Frances, Berry Jay, Quinn Claire
机构信息
School of Nursing and Midwifery, Trinity College Dublin, 24 D'Olier Street,, Dublin 2, Ireland.
School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland.
出版信息
BMC Palliat Care. 2016 Oct 28;15(1):89. doi: 10.1186/s12904-016-0161-0.
BACKGROUND
Parents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the experiences of families receiving a nurse led pilot hospice at home programme and the experiences of healthcare professionals delivering and engaging with the programme.
METHODS
An exploratory, qualitative study was conducted, including telephone interviews with parents and focus groups and individual interviews with healthcare professionals. All parents of families who received the programme of care between June 2014 and September 2015 and healthcare professionals delivering and engaging with the programme were invited to participate.
RESULTS
Seven parents participated in telephone interviews. Four focus groups took place, two with external stakeholders (18 participants in total), one with in-patient hospice staff (13 participants) and one with the hospice at home team (8 participants). Two additional interviews took place with individual stakeholders who were unable to attend a scheduled focus group. Themes from interviews with parents focused on the value of having consistent and expert care. The findings from healthcare professionals centred on communication within and across services, education and training and lone working.
CONCLUSIONS
The pilot hospice at home programme was welcomed by all those who took part in the study. The programme may be improved by enhanced clarification of roles, enhanced access to multi-disciplinary services, greater communication across services and improved information provision to families.
背景
家长们普遍表示，在接受临终关怀和支持性护理后，生活质量有显著改善，并指出在家中需要这样的服务。本研究的目的是了解接受由护士主导的居家临终关怀试点项目的家庭的经历，以及提供该项目并参与其中的医疗保健专业人员的经历。
方法
进行了一项探索性的定性研究，包括对家长的电话访谈、焦点小组讨论以及对医疗保健专业人员的个人访谈。邀请了2014年6月至2015年9月期间接受护理项目的所有家庭的家长，以及提供该项目并参与其中的医疗保健专业人员参与。
结果
7名家长参与了电话访谈。进行了4次焦点小组讨论，两次与外部利益相关者（共18名参与者），一次与住院临终关怀工作人员（13名参与者），一次与居家临终关怀团队（8名参与者）。另外对两名无法参加预定焦点小组的个人利益相关者进行了访谈。与家长访谈的主题集中在获得持续和专业护理的价值上。医疗保健专业人员的调查结果集中在服务内部和跨服务的沟通、教育和培训以及独自工作方面。
结论
参与研究的所有人都对居家临终关怀试点项目表示欢迎。该项目可通过进一步明确角色、增加获得多学科服务的机会、加强跨服务沟通以及改善向家庭提供信息的方式来改进。
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