The impacts of partnering with cancer patients in palliative care research: a systematic review and meta-synthesis

Paolucci, Alessandra; Nielssen, Ingrid; Tang, Karen; Sinnarajah, Aynharan; Simon, Jessica; Santana, Maria

doi:10.1177/26323524221131581

Cited by 3 publications

(4 citation statements)

References 33 publications

(176 reference statements)

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“…In Paolucci et. al’s [ 19 ] systematic review of patient engagement in palliative care research, they only identified three studies that engaged patients with lived experience of cancer as partners in the health research process. In Abelson et.…”

Section: Discussionmentioning

confidence: 99%

“…Patients newly diagnosed with lung cancer in the study region are served by publicly funded [ 19 ] medical and radiation oncology outpatient clinics at a tertiary cancer centre, which serves 1.4 million people in a zone (Calgary, Alberta, Canada) including a metropolitan city, surrounding towns, rural areas and First Nations territories. A Lung Tumour Group Coordinator (nurse) triages new referrals to six lung-focused oncologists, and each oncologist clinic has one oncology nurse.…”

Section: Contextmentioning

confidence: 99%

“…Patient-oriented research engages patients and caregivers as partners in the research process [ 18 ]. Within palliative care research, only three articles have been published that describe how they have engaged patients as partners [ 19 ]. This paper reports a patient-oriented co-design process which included working with patient and family advisors, clinicians, and researchers to build the automatic referral process.…”

Section: Introductionmentioning

confidence: 99%

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Acceptability of automatic referrals to supportive and palliative care by patients living with advanced lung cancer: qualitative interviews and a co-design process

Ahmed,

Simon,

Biondo

et al. 2024

Res Involv Engagem

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Purpose Timely access to supportive and palliative care (PC) remains a challenge. A proposed solution is to trigger an automatic referral process to PC by pre-determined clinical criteria. This study sought to co-design with patients and providers an automatic PC referral process for patients newly diagnosed with stage IV lung cancer. Methods In Step 1 of this work, nine one on one phone interviews were conducted with advanced lung cancer patients on their perspectives on the acceptability of phone contact by a specialist PC provider triggered by an automatic referral process. Interviews were thematically analysed. Step 2: Patient advisors, healthcare providers (oncologists, nurses from oncology and PC, clinical social worker, psychologist), and researchers were invited to join a working group to provide input on the development and implementation of the automatic referral process. The group met biweekly (virtually) over the course of six months. Results From interviews, the concept of an automatic referral process was perceived to be acceptable and beneficial for patients. Participants emphasized the need for timely support, access to peer and community resources. Using these findings, the co-design working group identified eligibility criteria for identifying newly diagnosed stage IV lung cancer patients using the cancer centre electronic health record, co-developed a telephone script for specialist PC providers, handouts on supportive care, and interview and survey guides for evaluating the implemented automatic process. Conclusion A co-design process ensures stakeholders are involved in program development and implementation from the very beginning, to make outputs relevant and acceptable for stage IV lung cancer patients.

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Section: Discussionmentioning

confidence: 99%

Section: Contextmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Acceptability of automatic referrals to supportive and palliative care by patients living with advanced lung cancer: qualitative interviews and a co-design process

Ahmed,

Simon,

Biondo

et al. 2024

Res Involv Engagem

Self Cite

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“…Contributors get the satisfaction that they are offering something back to society. It can give a sense of belonging to something important and giving to the greater good [ 16 ]. Making a positive difference in research that may ultimately lead to improvement in patients’ lives is a fundamental reason why many public members get involved with research in the first place.…”

Section: What Are the Benefits Of Public Engagement?mentioning

confidence: 99%

Series: Public engagement with research. Part 1: The fundamentals of public engagement with research

Blackburn

Clinch

Wit³

et al. 2023

European Journal of General Practice

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Background In the first of a four-part series, we describe the fundamentals of public engagement in primary care research. Objectives The article’s purpose is to encourage, inform and improve the researcher’s awareness about public engagement in research. For a growing number of researchers, funders and patient organisations in Europe, public engagement is a moral and ethical imperative for conducting high-quality research. Discussion Starting with an explanation of the role of public engagement in research, we highlight its diversity and benefits to research, researchers and the public members involved. We summarise principles of good practice and provide valuable resources for researchers to use in their public engagement activities. Finally, we discuss some of the issues encountered when researchers collaborate with members of the public and provide practical steps to address them. Case studies of real-life situations are used to illustrate and aid understanding. Conclusion We hope this article and the other papers in this series will encourage researchers to better consider the role and practice of public engagement and the potential added value to research that collaborating with the public could provide.

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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 impacts of partnering with cancer patients in palliative care research: a systematic review and meta-synthesis

Cited by 3 publications

References 33 publications

Acceptability of automatic referrals to supportive and palliative care by patients living with advanced lung cancer: qualitative interviews and a co-design process

Acceptability of automatic referrals to supportive and palliative care by patients living with advanced lung cancer: qualitative interviews and a co-design process

Series: Public engagement with research. Part 1: The fundamentals of public engagement with research

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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