Co‐production with “vulnerable” groups: Balancing protection and participation

Liabo, Kristin; Ingold, Anne; Roberts, Helen

doi:10.1002/hsr2.19

Cited by 22 publications

(25 citation statements)

References 45 publications

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“…Consulting with people considered vulnerable may be motivated by recognition and the inclusion of ‘marginal perspectives’ in building resilience (Bottrell, 2009), but the encounter with ethical governance brings in protection as a consideration. Depending on the individual, recognition may be more or less personally important compared with protection at a given research moment and this balance cannot be prescribed by ethics committees in advance (Liabo et al, submitted). The interviewer has to develop a sense of when it is appropriate to ask and when to remain silent – an ethical solidarity.…”

Section: Discussionmentioning

confidence: 99%

“…We had no concerns that the risks of participating in the study would be greater than those experienced in everyday life by these young people. However, all research carries risks (including the risk of not being ‘heard’), and we have written elsewhere about the need to operate an ‘ethical radar’ in research with vulnerable populations (Liabo et al, submitted). The interviews took place in a familiar environment, and by the time of the second interview, the young people knew their interviewer and could assess her trustworthiness.…”

Section: Methodsmentioning

confidence: 99%

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Visibility, resilience, vulnerability in young migrants

Bradby

Liabo

Ingold³

et al. 2017

Health (London)

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Young unaccompanied asylum seekers have been portrayed as vulnerable, resilient or both. Those granted residency in Europe are offered support by health and social care systems, but once they leave the care system to make independent lives, what part can these services play? Our review of research with migrants who have been in care in Sweden and the UK found evidence of unmet need, but little research describing their own views of services. The limited published evidence, supplemented by interviews with care-leavers in a UK inner city suggests that in defining health needs, young people emphasize housing, education, employment and friendship over clinical or preventative services. Some felt well-supported while others described feeling vulnerable, anxious, angry or sad. These experiences, if linked with the insensitivity of even one professional, could lower young people's expectations of healthcare to the extent that they avoided contact with service providers. In supporting young migrants' resilience to meet everyday challenges, friendly support from peers, carers and professionals was important. They needed determined advocacy at key moments. The different challenges for the Swedish and UK health and welfare systems along with the resilience/vulnerability trajectory are described. KeywordsUnaccompanied asylum seekers healthcare services children and youth social care resilience expectations migration advocacy Visibility, resilience, vulnerability, Bradby et al, https://doi

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Visibility, resilience, vulnerability in young migrants

Bradby

Liabo

Ingold³

et al. 2017

Health (London)

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“…Prominent themes of power, diversity and emotions could be explored further, including the apparent reluctance of professionals to undertake involvement. Although involvement was shown to have developed over time, as elsewhere, [137][138][139] there is a need for education or guidance to improve both improvement practice and organisational culture.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

et al. 2019

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Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base. Design: Qualitative evidence synthesis using an integrative review approach and thematic analysis. Data sources: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken. Results: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement. Conclusion: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.

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“…Additionally, it could prevent ethical concerns with the practice, such as tokenistic involvement of patients in research (i.e., patient inclusion purely motivated by pursuing research funding, without commitment to true research partnership [3,40]). As shown through the use of participatory research methods, the very process of patient engagement in research can promote equity in the research process, such that patient voices are heard and research outcomes remain relevant to the intended beneficiaries [41,42]. Additionally, in some LMIC contexts, where research ethics infrastructure is less robustly developed than in HICs, patient partnership to develop research ethics policies and tools (e.g., informed consent protocols) could have a significant impact in promoting equity and protecting vulnerable groups [41,42].…”

Section: Uncertain Rolesmentioning

confidence: 99%

Lessons for Patient Engagement in Research in Low- and Middle-Income Countries

Janic

Kimani

Olembo³

et al. 2020

Ophthalmol Ther

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Patient engagement in research is marked by partnership between clinicians, scientists, and people with lived experience of a disease, who jointly develop and implement research and disseminate results. Patient engagement in research has been shown to lead to more impactful and relevant findings. There is a global need for quality research contextualized for lowand middle-income countries (LMICs). Patient involvement in research could address this need, yet it remains a practice more commonly employed in high income countries. In this paper, the authors explore LMIC-specific challenges and opportunities for patient engagement in research. Limitations to patient engagement in research include gaps in health infrastructure, socioeconomic status, cultural stigma, and uncertain roles. Potential solutions to address these challenges include strategic national and international research partnerships, initiatives to combat stigma, and sensitization and training of stakeholders in patient engagement in research.Reflecting on their patient engagement experience with eye cancer research in Canada and Kenya, and supported by evidence of patient engagement in other low-resource settings, the authors provide a roadmap for patient engagement in research in LMICs.

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Co‐production with “vulnerable” groups: Balancing protection and participation

Abstract: Background and aim: This paper explores the tension between participation and protection

Cited by 22 publications

References 45 publications

Visibility, resilience, vulnerability in young migrants

Visibility, resilience, vulnerability in young migrants

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Lessons for Patient Engagement in Research in Low- and Middle-Income Countries

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