Music therapy for supporting informal carers of adults with life-threatening illness pre- and post-bereavement; a mixed-methods systematic review.

BACKGROUND: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). METHODS: Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. RESULTS: A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. CONCLUSIONS: Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. SYSTEMATIC REVIEW PRE-REGISTRATION: PROSPERO [CRD42021244859].

Understanding public attitudes to death talk and advance care planning in Northern Ireland using health behaviour change theory: a qualitative study.

OBJECTIVES: Advance care planning is a key preparatory step in ensuring high-quality palliative and end of life care, and should be considered as a process, beginning with community-level conversations among lay persons. There is, however, indication that death talk among community-dwelling adults is not occurring, and there is a dearth of research examining why this is the case. This study aims to provide the first examination of barriers and facilitators to talking about death and dying among the general population in a UK region (Northern Ireland), and to provide a novel application of health behaviour change theory towards developing a theoretical understanding of the sources of this behaviour. METHODS: The study involved qualitative analysis of responses (n = 381 participants) to two open-ended questions within a cross-sectional online survey, with recruitment via social media of adults currently living in Northern Ireland. Reflexive thematic analysis was conducted on open text responses per question, with the barriers and facilitators mapped on to health behaviour change models (the Behaviour Change Wheel COM-B and the Theoretical Domains Framework). RESULTS: The findings evidence a myriad of barriers and facilitators to engaging in death talk, with themes aligning to areas such as lack of acceptance of death in social contexts and fear of upsetting self or others, and a need to improve interpersonal communication skills for facilitating conversations and improve knowledge of the existing services around death and dying. A theoretical understanding of the drivers of death talk is presented with findings mapped across most components of the COM-B Behaviour Change Model and the Theoretical Domains Framework. CONCLUSIONS: This study contributes to a small but emergent research area examining barriers and facilitators to talking about death and dying. Findings from this study can be used to inform new public health programmes towards empowering adults to have these conversations with others in their community towards upstreaming advance care planning.

The need for enhanced psychological support in esophageal cancer-an exploratory study of the perception of HCPs, patients, and carers.

Esophageal cancer patients and carers report significant levels of psychological distress. Despite this, only a small number of patients and carers engage with existing psychological services. This study aims to explore the perception of esophageal cancer patients, carers, and healthcare professionals (HCPs) of psychological distress and current provision of support, the need for and format of tailored support and barriers to patient/carer engagement. Semistructured interviews were undertaken with n = 14 esophageal cancer patients, carers, and HCPs. Directed content analysis was utilized to code the transcripts according to the preconceived categories as defined by study aim. Participants reported key periods for heightened distress around diagnosis and postsurgery on discharge from hospital. Provision of existing support was not felt to be adequate. A number of patient/carer barriers to engaging with support were identified in addition to HCP barriers. Participants perceived enhanced psychological support as a priority supportive care need with a number of recommendations for tailoring existing support services more adequately to the clinical population. With reports of heightened psychological morbidity yet with few esophageal cancer patients engaging with psychological services, there is an impetus to develop detailed care pathways to facilitate meeting this prioritized support need.

Peer advice giving from posttreatment to newly diagnosed esophageal cancer patients.

The benefits of peer support in cancer care include the sharing of information and experience, supporting adjustment by providing an illness trajectory which cancer patients can use to prepare for their own cancer journey. Information from peers is prioritized by esophageal cancer patients, yet the content of this experiential information is not well understood. The purpose of this study is to understand the content of peer advice giving from posttreatment to newly diagnosed esophageal cancer patients. Esophageal cancer survivors (n = 23) at median 67-months postdiagnosis completed a single open-ended survey item which asked for advice they would give to individuals newly diagnosed with esophageal cancer on how to cope emotionally with the cancer journey (including adjusting to life after treatment). Transcripts were assessed using qualitative content analysis, with five categories of advice identified: social support, psychological approach, realistic expectations, support from healthcare professionals and self-care. The categories of advice reported were distinct from information needs prioritized by clinicians. This study demonstrates that experiential information is accessible and has the potential to identify neglected information and supportive care needs, and may have a potential use in delivery of psychological support to newly diagnosed patients.