Informal caregivers play a vital role in caring for individuals who choose to spend the end of their life at home. However, this caregiving role often imposes considerable physical, emotional, social and financial burdens that can negatively impact caregivers’ quality of life. A comprehensive understanding of the breadth of interventions designed to support caregivers of individuals receiving home-based palliative and end-of-life care is essential, along with insights into how these interventions are perceived by those who have received them. The objective of this review is to synthesise existing evidence on the effectiveness and appropriateness of interventions that support informal caregivers of patients receiving home-based palliative care in order to address the caregivers’ needs and improve their quality of life. Additionally, this review aims to explore the acceptability and perceived benefits of these interventions from the perspectives of informal caregivers who have received them.
A comprehensive search will be performed in the following databases: MEDLINE (PubMed), CINAHL, PsycINFO, Web of Science, Scopus, Cairn.info, EMBASE and the Cochrane Central Register of Controlled Trials (CENTRAL). This review will include studies that focus on adult informal caregivers of adult patients with serious life-threatening illnesses receiving home-based palliative care. Interventional studies that employed quantitative, qualitative and mixed-methods approaches will be considered. Quantitative studies will include randomised controlled trials (RCTs) and experimental and quasi-experimental designs. Qualitative studies will encompass research that explores informal caregivers’ experiences with the interventions, perceived benefits and barriers and enablers influencing intervention effectiveness. Mixed-methods studies using convergent, embedded or sequential designs will also be included.
The search will include studies published in English or French, with no restrictions on the publication period. Study selection, critical appraisal and data extraction will be conducted independently by two reviewers to ensure methodological rigour. This review will adhere to the Joanna Briggs Institute guidelines for mixed-methods systematic reviews, using a convergent segregated approach. Findings will be reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines.
Ethical review is not required for this study, as it is a literature review that does not involve the collection of primary data. The findings of this review will be disseminated to the scientific community through conference presentations and peer-reviewed publications. Additionally, lay summaries will be prepared and shared with the general public and relevant stakeholders.
PROSPERO, registration number CRD420251006612.
While digital technologies can increase the availability and access to evidence-based interventions, little is known about how users engage with them and the mechanisms associated with effective outcomes. Process evaluations are an important component in understanding the aforementioned factors. The ‘SPARX-UK’ study is a randomised controlled pilot and feasibility trial evaluating personalised human-supported (from an ‘eCoach’) vs a self-directed computerised cognitive behavioural therapy intervention (cCBT), called SPARX (Smart, Positive, Active, Realistic, X-factor thoughts), aimed at adolescents with mild to moderate depression. We are comparing supported vs self-directed delivery of SPARX to establish which format should be used in a proposed definitive trial of SPARX. The control is a waitlist group. We will conduct a process evaluation alongside the trial to determine how the intervention is implemented and provide context for interpreting the feasibility trial outcomes. We will also look at the acceptability of SPARX and how users engage with the intervention. This protocol paper describes the rationale, aims and methodology of the SPARX-UK trial process evaluation.
The process evaluation will use a mixed-methods design following the UK Medical Research Council’s 2015 guidelines, comprising quantitative and qualitative data collection. This will include analysing data usage of participants in the intervention arms; purposively sampled, semi-structured interviews of adolescents, parents/guardians, eCoaches and clinicians/practitioners from the SPARX-UK trial; and analysis of qualitative comments from a survey from those who dropped out early from the trial. Quantitative data will be analysed descriptively. We will use thematic analysis in a framework approach to analyse qualitative data. Quantitative and qualitative data will be mixed and integrated to provide an understanding of how the intervention was implemented and how adolescents interacted with the intervention. This process evaluation will explore the experiences of adolescent participants, parents/guardians, eCoaches and clinicians/practitioners in relation to a complex digital intervention.
Ethical approval was granted by the National Health Service (NHS) Health Research Authority South West - Cornwall & Plymouth Research Ethics Committee (Ethics Ref: 22/SW/0149).
Contextualising how the intervention was implemented, and the variations in uptake and engagement, will help us to understand the trial findings in greater depth. The findings from this process evaluation will also inform the decision about whether and how to proceed with a full randomised controlled trial, as well as the development of more effective interventions which can be personalised more precisely via varying levels of human support. We plan to publish the findings of the process evaluation and the wider project in peer-reviewed journals, as well as disseminate via academic conferences.
ISRCTN: ISRCTN15124804. Registered on 16 January 2023,
To explore the experience of primary healthcare (PHC) professionals in their professional role during the pandemic and to describe collective coping strategies.
We conducted a qualitative study using interviews, focus groups and photovoice techniques from February to September 2021. The qualitative data were transcribed, aggregated and analysed, from a hermeneutic perspective, using applied thematic analysis and ethnographic approaches.
Primary Care Health Madrid region (Spain).
Convenience sampling was used to select 71 multidisciplinary primary care professionals who were working in 12 PHCs representing diverse socioeconomic, social vulnerability and COVID impact levels in the Madrid region (Spain).
Findings from this study show how lack of protection in the early days, uncertainty about how the disease would evolve and the daily challenges they faced have had an impact on the participants’ perceptions of their professional role. Nuanced differences in impact were found between men and women, age groups, professional roles and territories. The questioning of the basic foundations of primary care and the lack of prospects led to a feeling of demotivation. They perceive a wide gap between their levels of involvement and commitment, the recognition they receive and the attention to resources they need to do their work to a high standard. The support of their colleagues was seen as the most valuable resource for coping with the crisis.
The practitioners’ discourses offer knowledge that could help to face new global health threats; they also identify an urgent need to restore the role and motivation of PHC professionals as part of a wider regeneration of health systems.