The Patients Changing Things Together (PATCHATT) ethics pack: A tool to support inclusive ethical decision-making in the development of a community-based palliative care intervention

Roberts, Amanda

doi:10.1177/14777509221091093

Cited by 4 publications

(5 citation statements)

References 38 publications

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“…There are only a few examples of ethics support tools in the literature. They vary from developing a moral compass tool for questions of client autonomy, to an ethics support tool supporting care providers in gender care with questions concerning the competency of young clients, and an ethics support tool to help individual patients with life-limiting illnesses to take action and guide them through ethical decision making [21][22][23][24][25].…”

Section: Incentives For Developing An Ethics Support Toolmentioning

confidence: 99%

Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation

Ligtenberg,

Stolper,

Molewijk

2024

BMC Med Ethics

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Background Confidentiality is one of the central preconditions for clinical ethics support (CES). CES cases which generate moral questions for CES staff concerning (breaching) confidentiality of what has been discussed during CES can cause moral challenges. Currently, there seems to be no clear policy or guidance regarding how CES staff can or should deal with these moral challenges related to (not) breaching confidentiality within CES. Moral case deliberation is a specific kind of CES. Method Based on experiences and research into MCD facilitators’ needs for ethics support in this regard, we jointly developed an ethics support tool for MCD facilitators: the Confidentiality Compass. This paper describes the iterative developmental process, including our theoretical viewpoints and reflections on characteristics of CES tools in general. Results The content and goals of the ethics support tool, which contains four elements, is described. Part A is about providing information on the concept of confidentiality in MCD, part B is a moral compass with reflective questions, part C focuses on courses of action for careful handling of moral challenges related to confidentiality. Part D contains general lessons, best practices and tips for dealing with confidentiality in future cases. Conclusions This paper concludes with providing some lessons-learned related to developing ethics support tools and some reflections on issues of quality and normativity of ethics support tools.

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Section: Incentives For Developing An Ethics Support Toolmentioning

confidence: 99%

Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation

Ligtenberg,

Stolper,

Molewijk

2024

BMC Med Ethics

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“…[12][13][14] Recommendations to support researchers to involve people in their research include the recent 'Patients Changing Things Together' -a programme to support individuals with terminal illness 'to lead change that matters to them'. 15 Further, there is some evidence of co-production with people experiencing homelessness, through community based participatory research. 16 In Canada, the Lived Experience Advisory Council (LEAC) developed seven principles to underpin inclusion in organisations and initiatives.…”

Section: Introductionmentioning

confidence: 99%

“… 12 – 14 Recommendations to support researchers to involve people in their research include the recent ‘Patients Changing Things Together’ – a programme to support individuals with terminal illness ‘to lead change that matters to them’. 15 …”

Section: Introductionmentioning

confidence: 99%

Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study

Crooks,

Flemming,

Shulman

et al. 2024

Palliat Med

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Background: Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed. Aim: To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness. Design: A qualitative study comprising semi-structured interviews and focus groups. Data were analysed using iterative, reflexive thematic analysis. Setting/participants: Twenty-seven participants were recruited. Sixteen professionals with experience of co-producing research with people with lived experience of homelessness; eleven people with lived experience of homelessness. Results: Six key themes were developed: transparency, importance of engagement and rapport, facilitating equitable involvement via person centred approach, financial recognition of involvement, involvement and growth through a trauma-informed approach and navigating institutional resistance and attitudes. Recommendations corresponding to the core themes were developed (TIFFIN recommendations). Conclusions: Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research.

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“…Co-research methodologies have been key in developing culturally sensitive palliative care interventions, bereavement drop in services, and pediatric palliative care [ 48 – 50 ]. Published recently, the Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to become involved in research with the aim of “leading a change that matters to them” [ 51 ]. Efforts have been made to produce guidance for involving individuals with lived experience of a condition in PEoLC research, that is sensitive to the additional ethical and practical considerations that must be taken with terminally ill individuals [ 52 ].…”

Section: Introductionmentioning

confidence: 99%

Opportunities and challenges in involving people with lived experience of inclusion health as co-researchers in palliative and end of life research: a rapid review and thematic synthesis

et al. 2023

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Background Co-research is a collaborative approach to research, promoting involvement of individuals with lived experience of a research area as experts by experience. Recently, the importance of co-research within palliative and end of life care (PEoLC) has been highlighted, yet few recommendations exist regarding best practice for involving inclusion health groups (i.e., groups that are socially excluded, typically experiencing multiple disadvantages that contribute to poor health outcomes). Aims To identify and synthesise qualitative literature outlining barriers and facilitators for involving four inclusion health groups (individuals with lived experience of: homelessness, substance use disorder, incarceration or exchanging sex for money) in PEoLC research, from the perspectives of both the researchers and individuals with lived experience. Methods This report is a rapid review with thematic synthesis methodology. Three electronic databases were searched (2012–30th August 2022). Thematic synthesis was used to generate themes across qualitative studies. Results Three qualitative studies were eligible for inclusion. Two involved individuals with lived experience of incarceration, and one lived experience of homelessness. No papers outlined best-practice guidance for co-research; all offered reflections on the co-research process. Challenges for involvement included: facilitating appropriate reimbursement; overcoming stigma; fear of tokenism; pre-conceived views and the emotional burden of research. Successes and benefits included: advanced level of insight, a two-way learning opportunity and relatability of lived experience co-researchers. Conclusions This review did not identify any best-practice guidance for co-production of PEoLC research with inclusion health groups. There are few, good quality, qualitative studies offering insight into challenges and facilitators for lived experience co-researcher involvement. Further research and formal policy development is required to produce formal best-practice guidance to support safe, impactful inclusion in PEoLC research. Plain English Summary It is important that researchers work together with people who have lived experience of the topic they are researching. Palliative care is specialised medical care for people living with a terminal illness. There is some collaboration between researchers and people with lived experience in palliative and end-of-life care research. However, some groups of people have been excluded. This includes people experiencing homelessness, or people with drug or alcohol addictions. This review aimed to understand what works and what doesn’t work when involving four excluded groups in palliative and end-of-life research. These groups were people experiencing homelessness, those who had spent time in prison, people with drug or alcohol disorders, and people who exchanged sex for money. This review used a shortened methodology, which allowed it to be done quickly. Three online academic databases (Medline, PubMed, PsychINFO) were searched for research projects: three papers were included in the review. No clear guidance for working with these groups was found. Analysis identified themes across papers. Challenges for collaboration included: appropriate payment methods; overcoming stigma; fear of being talked down to,; assumptions made before meeting people, and the potential of becoming upset. Successes and benefits included: better understanding of the research topic, the opportunity to learn from one another, and how research participants could relate to lived experience co-researchers. There are few, good quality papers, but more research is needed to produce guidance to support safe, impactful collaboration.

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The Patients Changing Things Together (PATCHATT) ethics pack: A tool to support inclusive ethical decision-making in the development of a community-based palliative care intervention

Cited by 4 publications

References 38 publications

Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation

Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation

Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study

Opportunities and challenges in involving people with lived experience of inclusion health as co-researchers in palliative and end of life research: a rapid review and thematic synthesis

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