‘There’s this big fear around palliative care because it’s connected to death and dying’: A qualitative exploration of the perspectives of undergraduate students on the role of the speech and language therapist in palliative care

Background: Speech and language therapy in palliative care is a developing discipline of clinical practice. Research literature has highlighted that undergraduate palliative care education in speech and language therapy is inconsistent and inadequate. However, limited research has been carried out to date in relation to student speech and language therapists and palliative care. Aim: To explore the role of speech and language therapists in palliative care from the perspective of speech and language therapy students in Ireland. Design: A qualitative descriptive research study was conducted, involving focus group interviews. Setting/participants: Purposive sampling was used to recruit 12 student speech and language therapists from one university site for this study. Undergraduate second, third and fourth year students were eligible for inclusion. Results: This study revealed that undergraduate student speech and language therapists collectively agree that there is a role for speech and language therapy in palliative care. Although students acknowledged that speech and language therapists can make a positive difference to patients’ lives, and academic lectures were positively received, insufficient exposure to palliative care has resulted in fear, uncertainty and a lack of confidence amongst student speech and language therapists. Conclusions: A greater emphasis on palliative care is needed in undergraduate speech and language therapy education to ensure confidence and competency development. An exploration of student speech and language therapists’ experiences in a specialist palliative care unit would be advantageous to determine the appropriateness of this setting for clinical placements.

Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review

Background: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers. Aim: To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning. Design: A mixed-methods systematic review, in which quantitative and qualitative data were extracted and synthesised using thematic synthesis leading to a logic model. Prospectively registered on PROSPERO (CRD42020208143). Data sources: Primary quantitative and qualitative research regarding family-involved advance care planning for people with advanced cancer were identified using Medline, Embase, PsycINFO and CINAHL from inception to September 2020. Quality appraisal was performed with ‘QualSyst’. Results: Fourteen articles were included. The synthesis identified perceptions of individuals and family members concerning family involvement in advance care planning and presents components for family-integrated advance care planning intervention. The logic model includes (i) addressing family members’ concerns and emotions and (ii) facilitating communication between individuals and family members which are distinctive when healthcare professionals engage with individuals as well as family members. Conclusions: This review provides a comprehensive understanding of family involvement in advance care planning and could inform its assessment and implementation in clinical practice. The number of included articles was limited. Therefore future research must focus on family integration and exploration of stakeholders’ perceptions to identify additional components and linkages between them within family-integrated advance care planning.

Resilience in advanced cancer caregiving. A systematic review and meta-synthesis

Background: Close relatives provide much of the care to people with cancer. As resilience can shield family caregivers from mental health problems, there has been a burgeoning interest in resilience-promoting interventions. However, the evidence necessary for the development of these interventions is scant and unsynthesized. Aim: To create an overall picture of evidence on resilience in cancer caregiving by a theory-driven meta-synthesis. Design: In this systematically constructed review a thematic synthesis approach has been applied. The original findings were coded and structured deductively according to the theoretical framework. Consequently, the codes were organized inductively into themes and subthemes. Data sources: Through September 2019, five electronic databases were searched for qualitative studies on resilience in cancer caregiving. The search was extended by a supplementary hand search. Seventeen studies met the eligibility criteria. Results: The elements of resilience, as described in the pre-defined theoretical framework of Bonanno, are reflected in the lived experiences of family caregivers. The resilience process starts with the diagnosis of advanced cancer and may result in mental wellbeing, benefit finding, and personal growth. The process is influenced by context elements such as individual history, sociocultural background, caregiver characteristics, and the behavior of the supportive network. A repertoire of coping strategies that caregivers use throughout the caregiving process moderates the resilience process. Conclusion: This review and theoretical synthesis reveal key elements of resilience in the process of cancer caregiving, including influencing factors and outcomes. Implications and avenues for further research are discussed.

Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis

Background: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. Aims: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. Design: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. Data Sources: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. Findings: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. Conclusions: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.

Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review

Background: Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative’s care and experience high level of strain at the end of life. Aim: To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice. Design: Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach. Data sources: Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied. Results: In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers’ preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life. Conclusion: The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided.

Communication strategies and persuasion as core components of shared decision-making for children with life-limiting conditions: A multiple case study

Background: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. Aim: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. Design: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. Setting/participants: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. Findings: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child’s best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child’s psychosocial wellbeing. Conclusions: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals’ moral reasoning may assist the process of shared decision-making.

General practitioners’ evaluations of optimal timing to initiate advance care planning for patients with cancer, organ failure, or multimorbidity: A health records survey study

Background: Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings. Aim: To identify the optimal moment for, and reasons to initiate advance care planning in different illness trajectories. Design and methods: A health records survey study; health records were presented to 83 GPs with request to indicate and substantiate what they considered optimal advance care planning timing within the 2 years before death. We used quantitative and qualitative analyses. Setting and patients: We selected and anonymized 90 health records of patients who died with cancer, organ failure or multimorbidity, from a regional primary care registration database in the Netherlands. Results: The median optimal advance care planning timing according to the GPs was 228 days before death (interquartile range 392). This moment was closer to death for cancer (87.5 days before death, IQR 302) than for organ failure (266 days before death, IQR 401) and multimorbidity (290 days before death, IQR 389) ( p < 0.001). The most frequently mentioned reason for cancer was “receiving a diagnosis” (21.5%), for organ failure it was “after a period of illness” (14.7%), and for multimorbidity it was “age” and “patients” expressed wishes or reflections’ (both 12.0%). Conclusion: The optimal advance care planning timing and reasons to initiate advance care planning indicated by GPs differ between patients with cancer and other illnesses, and they also differ between GPs. This suggests that “the” optimal timing for ACP should be seen as a “window of opportunity” for the different disease trajectories.

Prevalence of grief disorders in bereaved families of cancer patients: A meta-analysis

Background: Cancer caregiving is a distressing experience and loss of a loved one can lead to intense grief and other adverse effects. However, the prevalence of grief disorders among families associated with cancer-related deaths remains unknown. Aim: This study aimed to determine the prevalence of grief disorders among families of patients with cancer to better inform clinicians, researchers, and policymakers. Design: Meta-analysis, PROSPERO number CRD42020209392. Data sources: The databases of CINAHL, Embase, MEDLINE, PubMed, Scopus, PsycINFO, and Web of Science were comprehensively searched with no language restrictions. The quality of included studies was assessed with Hoy’s criteria. Results: Among the 3046 records screened, 19 studies were eligible for meta-analysis, with a total of 14,971 participants. The pooled prevalence rate of grief disorders was estimated at 14.2% (95% CI, 11.7%–16.7%), ranging from 7% to 39%. The prevalence was higher in females (10%; 95% CI, 8.2%–12.1%), those who are religious (9.55%; 95% CI, 8.97%–10.16%), spouses of the deceased (7.78%; 95% CI, 6.08%–9.69%), and families of patients with neurological cancers (6.4%; 95% CI, 0.10%–19.9%). Educational levels, study locations, diagnosis tools, time post-after loss, and study methods seemed not to affect the prevalence of grief disorders in families of patients with cancer. Conclusions: As the prevalence of grief disorders in cancer-related bereavement is substantial, therefore, support including palliative care is important to reduce the burden of caregiving. In addition, future studies are needed to identify and explore effective strategies that can help reduce the burden caused by grief disorders after the death of the patient.

The impact on emotional well-being of being a palliative care volunteer: An interpretative phenomenological analysis

Background: Much palliative care provision relies on the support of volunteers. Attention is paid to the risks to professionals providing care, such as stress and burnout, but understanding if this is an issue for volunteers is little understood. It is important to understand the impact their role has on volunteers emotional well-being. Aim: To explore the experiences of palliative care volunteers and how the role impacted on their emotional well-being. Design: Interpretative phenomenological analysis, with data collected through semi-structured interviews. Setting/participants: Volunteers in patient-facing roles within palliative and end-of-life care services in the UK. Results: Volunteers ( n = 10) across three palliative and end-of-life care services. Four themes were developed: (1) it can be challenging; (2) it’s where I’m meant to be; (3) managing death; (4) the importance of connection. Challenges included frustrations and questioning themselves. Although difficult at times, volunteers expressed the importance of the role, doing well and that they benefitted too. They also had to manage death and discussed beliefs about life and death, acceptance and managing patients’ fears. Connection with the hospice, patients, staff and other volunteers was important, with a need for everyone to feel valued. Conclusions: Although there are psychosocial benefits for volunteers in their role, it is important to understand the challenges faced and consider ongoing support to help volunteers manage these challenges. This could be addressed through the consideration of coping mechanisms, further training and reflective practice for volunteers.

Facilitating family needs and support at the end of life in hospital: A descriptive study

Background: Caring for family members of dying patients is a vital component of end-of-life care, yet family members’ needs at the end of life may be unmet. Aim: To explore hospital clinician assessment and facilitation of family needs and practices to support families at the end of life. Design: Descriptive study utilising a retrospective medical record audit. Setting and Sample: Undertaken in a large public hospital, the sample included 200 deceased patients from four specialities; general medicine ( n = 50), intensive care ( n = 50), inpatient palliative care ( n = 50) and aged rehabilitation ( n = 50). Data were analysed according to age; under 65-years and 65-years or over. Results: Deceased patients’ mean age was 75-years, 60% were Christian and Next-of-Kin were documented in 96% of cases. 79% spoke English, yet interpreters were used in only 6% of cases. Formal family meetings were held in 64% of cases. An assessment of family needs was undertaken in 52% of cases, and more likely for those under 65-years ( p = 0.027). Cultural/religious practices were supported/facilitated in only 6% of all cases. Specialist palliative care involvement was more likely for those aged 65-years or over ( p = 0.040) and social work involvement more likely for those under 65-years ( p = 0.002). Pastoral care and bereavement support was low across the whole sample. Conclusions: Prioritising family needs should be core to end-of-life care. Anticipation of death should trigger routine referral to support personnel/services to ensure practice is guided by family needs. More research is needed to evaluate how family needs assessment can inform end-of-life care, supported by policy.