Centre for Research in Primary and Community Care, University of Hertfordshire, College Lane, Hatfield, AL10 9AB UK.
BMC Palliat Care. 2011 Nov 23;10:20. doi: 10.1186/1472-684X-10-20.
Public involvement in research on sensitive subjects, such as death and dying, can help to ensure that questions are framed to reflect the interests of their peers, develop a shared understanding of issues raised, and moderate the often unequal power relationship between researcher and participant. This paper describes the contribution and impact of older members of a Public Involvement in Research group (PIRg) to a study on living and dying in care homes.
A longitudinal study, with a mixed method approach, its aims were to capture key experiences, events and change over one year, of older people resident in participating care homes in the East of England. Residents were interviewed up to three times and their case notes were reviewed four times over the year. Interviews were semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg) contributed to preliminary discussions about the research and three were involved with many of the subsequent stages of the research process including the facilitation of discussion groups with residents.
There were three areas where the involvement of the Public Involvement in Research group (PIRg) positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration with the residents in the care homes, the discussion and interpretation of emergent findings. PIRg members were of similar age to the residents and their involvement provided different and often more reflective insights of the significance of the findings for the participants. There were examples where decision making about the range of PIRg participation was not always negotiable, and this raised issues about power relationships within the team. Nevertheless, PIRg members expressed personal benefit and satisfaction through participating in the research and a commitment to continue to support research with this older age group.
The contribution of the PIRg supported a successful recruitment process that exceeded response rates of other studies in care homes. It safeguarded residents during the conduct of research on a sensitive topic and helped in validating the interview data gathered by the researchers through the discussion groups facilitated by the PIRg. There were power differentials that persisted and affected PIRg participation. The study has showed the value of developing job descriptions and a more formal means of setting out respective expectations. Future research may wish to elicit the views of focal participants in such studies about the mediation of research by public involvement in research.
公众参与敏感主题的研究，如死亡和临终，有助于确保问题的框架反映同行的利益，对提出的问题形成共同的理解，并缓和研究人员与参与者之间经常不平等的权力关系。本文描述了研究小组中较年长成员（PIRg）对一项关于护理院生活和死亡的研究的贡献和影响。
这是一项纵向研究，采用混合方法，旨在在东英格兰参与护理院的老年人中，一年内捕捉他们的关键经历、事件和变化。居民接受了最多三次访谈，并在一年内四次审查他们的病历。访谈采用半结构化方式进行，并进行记录。研究小组中的 4 名公众参与成员（PIRg）参与了初步讨论，其中 3 名成员参与了研究过程的许多后续阶段，包括与居民一起组织讨论小组。
公众参与研究小组（PIRg）的参与在三个方面对研究过程产生了积极影响。这三个方面是招募、治理和保障，以及与护理院的居民合作，对新出现的研究结果进行讨论和解释。PIRg 成员与居民年龄相仿，他们的参与提供了不同的、往往更具反思性的见解，了解这些发现对参与者的意义。有一些例子表明，并非所有关于 PIRg 参与范围的决策都是可以协商的，这引发了团队内部权力关系的问题。然而，PIRg 成员表示，通过参与研究获得了个人利益和满足感，并承诺继续支持这一年龄组的研究。
PIRg 的贡献支持了一项成功的招募过程，该过程的回应率超过了其他护理院研究。它在对敏感话题进行研究期间保护了居民的安全，并通过 PIRg 组织的讨论小组帮助验证了研究人员收集的访谈数据。存在持续存在并影响 PIRg 参与的权力差异。该研究表明，制定工作描述和更正式的方式来确定各自的期望是有价值的。未来的研究可能希望征求此类研究中重点参与者对公众参与研究对研究的调解的意见。
