Conference Agenda

Background:

The recently published ADAPT guidance provides various approaches for adapting existing interventions to new contexts. We adapted a public health palliative care (PHPC) needs-based navigation intervention for older people with cancer experiencing declining health, called Nav-CARE, to six European countries using the ADAPT guidance. The literature to date, illustrating and reflecting on such systemic adaptation approaches of PHPC interventions, is extremely limited.

Aim:

To describe the systematic adaptation process of Nav-Care EU across diverse settings following the ADAPT guidance. Moreover, we reflect on the use of the ADAPT guidance and its suggested frameworks and provide recommendations for others seeking to transfer public health palliative care interventions across settings.

Design:

We used an iterative five-stage multi-method approach, using the ADAPT guidance and its recommended frameworks for conducting context analysis (CICI), guiding decision-making (MADI) and reporting (FRAME) on adaptations.

Methods:

Both local adaptation teams and an international adaptation team have been established to conduct and evaluate the adaptation process. The international team synthesized and discussed data from adaptation reporting sheets, adapted intervention materials, semi-structured duo-interviews with implementation agents on implementation context, adapted training material and schedules, international adaptation team meeting minutes, context reporting sheets, and questionnaires on the composition and perceived importance of the local adaptation teams.

Results:

We (1) identified core and discretionary components of the original intervention, (2) adapted implementation materials, (3) conducted a contextual analysis, (4) adapted the training for the implementation agents, and (5) conducted a feasibility review.

Conclusion:

The ADAPT guidance provides both flexibility and guidance for systematic adaptations of PHPC interventions across settings. Determining core and discretionary components can be a qualitative way of assessing intervention’s fidelity during adaptation of PHPC interventions across settings. Conducting a comprehensive contextual analysis, and involving both local and international adaptation teams safeguarded the intervention-context fit.

Funding: European Union, Horizon Europe (2022-2027)

A key remit of public health palliative care is to address inequalities at the end of life. However, little is known about the end-of-life experiences of intersectionally marginalised groups who experience multiple systems of power and oppression, such as racism, sexism and classism, simultaneously.

A method proposed to support greater access and inclusion of such individuals in research is to have community researchers as part of the core research team. We define community researchers as individuals with similar social identities, heritage and location to the research participants of interest. However, how best to work with community researchers in the context of structural inequalities at the end of life remains poorly understood.

Objectives: To elicit and test programme theories on how to effectively work with community researchers in end-of-life care research focussing on intersectional inequalities.

Design: Rapid realist review and evaluation.

Methods: A rapid realist review was conducted to elicit programme theories to understand what works for whom, under what circumstances, how and why (supported by realist methods experts and an information specialist). These theories were then evaluated through a 12-month feasibility study where three Pakistani women from a structurally disadvantaged and ethnically diverse city in the UK formed part of a research team led by two women from a similar background. The community researchers co-designed the study, conducted interviews and analysed the data on the experiences of death, dying and grief of intersectionally disadvantaged Pakistani women who had not taken part in end-of-life care research previously.

Results: Three overarching programme theories will be discussed, including (i) how power was structured, acknowledged and navigated, (ii) mechanisms of inclusion of the community researchers and participants, (iii) primacy of reciprocal relationships at different levels and the tensions this posed with academic expectations, ethics procedures and structures. How the theories related to the concept of trust will also be explored.

Conclusion: Community researchers are key community assets to enable better and safer access and inclusion of intersectionally marginalised individuals in end-of-life care research. However, addressing power imbalances at multiple levels is essential to mitigate against the extractive and reductive nature of much research practice. Recommendations on how to navigate this will be shared.

Background: Two decades ago, the three-tiered bereavement support model was put forward to improve family access to compassionate care that addresses individual needs and capacity-risk profiles. Integration of such evidence-informed bereavement support into Swiss palliative care (PC) services has been slow and fractional.

Objectives: To implement and sustain evidence-informed family bereavement support in two specialized PC services, using implementation science methods.

Design: Multimethod approach, combining intervention adaptation, qualitative contextual analysis, and implementation mapping.

Methods: Adaptation of evidence to local contexts was guided by community engagement and the ADAPT guidance, and occurred through evidence synthesis, two co-design workshops with 18 PC staff, and consultation with bereaved families. To identify barriers and enablers, a contextual analysis, guided by the Consolidate Framework for Implementation Research, was undertaken, using two focus group interviews (n=14 PC staff). Implementation mapping guided the development of a tailored implementation plan.

Results: Intervention adaptation activities resulted in a bereavement support pathway with three core components, namely assessing family situation, needs, burden, and risks; providing tailored information, communication, and support; and ensuring continuity and coordination through collaboration and referrals, delivered over four time-points (dying phase to one-year post-loss). Six domains were found to potentially influence its implementation, namely features of the intervention, staff competencies, resources, workplace culture, organizational preconditions, and project nature. Sixteen discreet implementation strategies were chosen to minimize barriers and capitalize on enablers, such as: train and educate, revise professional roles, redesign workflow, support clinicians, build on palliative care culture, or create a supportive local community. An implementation plan with a research logic model was developed in close collaboration with key partners from the PC services, which will guide actual implementation.

Conclusions: The use of implementation science methods enabled early engagement of the interprofessional PC teams and a systematic development process, which resulted in an evidence-informed bereavement support pathway and tailored implementation plan fitting to local and cultural conditions. Evaluation of the actual implementation success will now be necessary.

Background: Advance care planning (ACP) is effective in promoting care that is coherent with one’s wishes should they lose decision making capacity (DMC). ACP can be conducted ‘by proxy’ for people lacking DMC. This involves health care proxies reconstituting the person’s presumed will based on their knowledge of the person, their life and values in order to provide them with access to ACP and thus end of life care that is coherent with their wishes. ACP by proxy models are new and little is known about the ways in which a person’s presumed will is elicited in these circumstances.

Objectives: To investigate ways in which ACP by proxy discussions are conducted and the ways in which health care proxies, physicians and ACP facilitators reconstitute a person’s presumed will.

Design: mixed methods single arm intervention pilot study.

Methods: 11 ACP by proxy encounters between ACP facilitators, health care proxies and treating physicians were audio-recorded. Audio files were transcribed verbatim and selected extracts which were used for the discursive and conversational analyses were transcribed according to the Jeffersonian method.

Results: Explorations of people lacking medical DMC’s presumed wills draw upon repertoires of ‘closeness’ and ‘connection’ to the person, particularly from the health care proxy in relation to their ‘previous’ knowledge of the person, and from heath professionals in relation to their ‘current’ knowledge of the resident. These notions are corroborated and compared to work up notions of the residents’ current presumed will. Numerous discursive ‘tools’ used in this reconstruction will be presented.

Conclusions: Discursive and conversational analyses provide important insights for training health professionals to explore the presumed will of patients who no longer have DMC and thus draw upon relationships with loved ones and health professionals to improve social and structural determinants of promoting care (inc. end of life) that is consistent with their wishes.

Background

Palliative care is not equally available to all Australians. Although research can address gaps in palliative care service and delivery to underserved populations, participant recruitment is difficult, especially amongst resource poor populations with little engagement in mainstream health services. Unless researchers build sustainable trust relationships with low socioeconomic populations, these groups will remain under researched and underserved. This presentation will illustrate practical strategies to reach, enable and build sustainable relationships between researchers and low socio-economic populations with the purpose of engaging these populations in research to improve palliative care services and delivery.

Objectives

To increase the inclusion of low socio-economic populations in palliative care research.

Design

This study is part of a larger 5-year South Australian research program addressing deficits in accessing palliative care for under-served communities. The research program takes a public health perspective, underpinned by theories of integrated knowledge translation, co-design, and community engagement. Low socioeconomic research participants are identified as individuals who, over an extended period, live in a socially and/or geographically identifiable group impacted by lack of financial, educational, social, and health resources.

Methods

In line with underlying principles of integrated knowledge translation and co-design, participant recruitment involves employing deliberate strategies to build relationships and trust with the targeted population. This includes engaging in voluntary activities with community groups, repeat and sustained communication, face to face meetings onsite with prospective research participants and being flexible and responsive to community needs.

Results

Four community groups have committed to a study to improve death literacy within their communities and are implementing local, co-designed initiatives to build understanding of death and dying. Additionally, through the relationships established, recruitment of participants for a longitudinal study of end-of-life pathways is ongoing.

Conclusion

Recruitment of low-socioeconomic populations to longitudinal palliative care research is challenging, but possible. Through our experience with designing and deploying an integrated knowledge translation approach, this study demonstrates that a carefully crafted recruitment and retention strategy can be effective.