How do people in prison access palliative care? A scoping review of models of palliative care delivery for people in prison in high-income countries.

BACKGROUND: An ageing prison population with complex health needs combined with punitive sentencing practices means palliative care for incarcerated individuals is increasingly important. However, there is limited evidence regarding the models of care delivery in high-income countries, and their associated challenges and benefits. AIM: To develop a typology of models of palliative care provision for incarcerated individuals, synthesise evidence of their outcomes and describe facilitators of and challenges in delivering different models of palliative and end-of-life care in prisons. DESIGN: Scoping review following Arksey and O'Malley, with narrative synthesis. The protocol was registered prospectively (reviewregistry1260). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO, the Social Sciences Citation Index and grey literature were searched on 15th March 2023. The Mixed Methods Appraisal Tool (MMAT) was used for quality appraisal. RESULTS: A total of 16,865 records were screened; 22 peer-reviewed articles and 18 grey literature sources met the inclusion criteria. Three models were identified: Embedded Hospice, Outsourcing Care and Community Collaboration. The Embedded Hospice model shows potential benefits for patients and prisons. Outsourcing Care may miss opportunities for comprehensive care. Collaborative Care relies on proactive prison-community relationships that could be formalised for improvement. Psychosocial and bereavement needs of those dying in prison and their caregivers lack sufficient documentation. CONCLUSION: Further research is needed to evaluate prison hospice costs and examine how prison hospices impact compassionate release usage. Beyond the USA, policies might formalise care pathways and recognise best practices. Further investigation to address psychosocial needs of people in prison with life-limiting illnesses and post-death bereavement support is required.

Care Plan Templates in Adult Community Mental Health Teams in England and Wales: An Evaluation.

Adults accessing community mental health services are required to have a care plan, developed in collaboration with the person accessing the service. The variation in care plan templates in use in England and Wales, and their impact on care planning, is unknown. This study evaluates the community mental health care plan templates in use across England and Wales. Data were obtained from a Freedom of Information request to 50 NHS Mental Health Trusts. An evaluation tool was designed and used to extract data. Data were rated red, amber, or green against clinical and design standards. Forty-seven care plan templates were obtained. The clinical aspect of the care plan template had 60% adherence to the national standards, and the design aspects had 87% adherence. A 'high/low' typology is proposed against the design/clinical standards. The study identifies priority areas for improvement in the care plan templates as space to record the actions that service users and carers will take to contribute to their care plan, space to record the name and contact details for their care coordinator or lead professional, plus others involved in the person's care. This study was not registered.

Exploring the Impact of Bereavement During the COVID-19 Pandemic on Children and Young People: A Scoping Review.

Experiencing bereavement as a child or young person (CYP) can have long-lasting effects. The societal and environmental burdens of the SARS-CoV-2 pandemic exacerbated the experience of loss and grief for many CYP, who were unable to access their usual the support networks. However, it is still unclear what is currently known and not known about the experiences of CYP bereaved during the SARS-CoV-2 pandemic. This review used the framework of Arksey and O'Malley and included five stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results. The methodological quality of the included studies was also assessed using the Critical Appraisal Skills Programme tool. The PRISMA framework was used for reporting the results. The electronic databases Medline, PsychINFO, CINAHL, and PubMed were searched for relevant articles. A total of three papers meeting the inclusion criteria were included in this review and two main themes identified: (1) support (which included sub-themes; social isolation and the impact on support; support from family and friends; wider support networks); (2) Emotional impact of bereavement during a pandemic. Access to support networks is crucial for CYP to understand and process their emotions relating to their bereavement experience. The pandemic meant that many usual support networks such as family and friends were inaccessible to CYP, who struggled to deal with their experience of grief during this time. Schools are a valuable support mechanism and can help CYP understand their emotions through open discussions about their bereavement. The limited empirical evidence currently available in this area of research demonstrates an important need to further understanding of the long-term impacts of dealing with pandemic-related loss in childhood.

P3a amplitude to trauma-related stimuli reduced after successful trauma-focused PTSD treatment.

An elevated P3a amplitude to trauma-related stimuli is strongly associated with posttraumatic stress disorder (PTSD), yet little is known about whether this response to trauma-related stimuli is affected by treatment that decreases PTSD symptoms. As an analysis of secondary outcome measures from a randomized controlled trial, we investigated the latency and amplitude changes of the P3a in responses in a three-condition oddball visual task that included trauma-related (combat scenes) and trauma-unrelated (threatening animals) distractors. Fifty-five U.S. veterans diagnosed with combat-related PTSD were randomized to receive either active or sham repetitive transcranial magnetic stimulation (rTMS). All received cognitive processing therapy, CPT+A, which requires a written account of the index trauma. They were tested before and 6 months after protocol completion. P3a amplitude and response time decreases were driven largely by the changes in the responses to the trauma-related stimuli, and this decrease correlated to the decrease in PTSD symptoms. The amplitude changes were greater in those who received rTMS + CPT than in those who received sham rTMS + CPT, suggesting that rTMS plays beneficial role in reducing arousal and threat bias, which may allow for more effective engagement in trauma-focused PTSD treatment.

Mortality in Patients with Parkinson's Disease-Related Psychosis Treated with Pimavanserin Compared with Other Atypical Antipsychotics: A Cohort Study.

INTRODUCTION: Pimavanserin is approved in the USA to treat hallucinations and delusions associated with Parkinson's disease psychosis (PDP). OBJECTIVES: We evaluated mortality in patients with PDP after initiation of pimavanserin or comparator atypical antipsychotics, overall, over time, and across subgroups. METHODS: A cohort of patients aged ≥65 years in the USA with PDP newly initiating pimavanserin or a comparator atypical antipsychotic (clozapine, quetiapine, risperidone, olanzapine, aripiprazole, brexpiprazole) was identified in 2016-2019 Medicare claims data. All-cause mortality in the propensity score-matched treatment groups was compared with hazard ratios (HRs) and 95% confidence intervals (CIs) estimated with Cox-proportional hazards models. Cumulative incidence curves and time period-specific models evaluated risk over time. Subgroup and sensitivity analyses were performed, including a sub-cohort of long-term care (LTC) or skilled nursing facility (SNF) residents. RESULTS: We identified 2892 pimavanserin initiators and 19,083 comparator initiators (overall 47% female, mean age = 80.9 years, LTC/SNF residents = 30%). Before matching, pimavanserin users had fewer severe comorbidities and more anti-Parkinson medication use than comparators. Matching resulted in 2891 patients in both groups, and all covariates were well balanced. In the matched cohort, the HR for mortality for pimavanserin versus comparator was 0.78 (95% CI 0.67-0.91), with the lowest time period-specific HRs in the first 180 days. Hazard ratios were similar across sensitivity analyses and subgroups. In LTC/SNF residents, the HR was 0.78 (95% CI 0.60-1.01). CONCLUSION: The observed mortality rates were lower among patients treated with pimavanserin compared with those treated with other atypical antipsychotics. STUDY REGISTRATION: European Union Post-authorization Study (EU PAS) register number 46331.

Clinical outcomes and treatment patterns of older adults with dementia-related psychosis by dementia type in the United States.

BACKGROUND: Little is known about the incidence of clinical events and treatment patterns among older adults with dementia-related psychosis. Given that dementia-related psychosis comprises various dementia types, this study describes the incidence of clinical events and treatment patterns by dementia type after patients with dementia are diagnosed with psychosis. METHODS: Adults aged ≥ 65 years with dementia and newly diagnosed with psychosis were identified in US Medicare claims during 2013-2018. Baseline characteristics were evaluated at the time of the psychosis diagnosis. After the initial psychosis diagnosis, incidence rates (IRs) of clinical events (e.g., falls/fractures, infections, healthcare utilization), mortality, and patterns of antipsychotic treatment were described for each dementia type (Alzheimer's disease [AD], Parkinson's disease dementia [PDD], dementia with Lewy bodies [DLB], frontotemporal dementia [FTD], vascular dementia [VD], and unspecified dementia). Daily mean cumulative counts were estimated to describe the incidence of recurrent events over time. Mortality was described using Kaplan-Meier survival curves. RESULTS: We identified 484,520 patients with dementia-related psychosis: mean age, 84 years (standard deviation, 7.8); female, 66%. At the time of psychosis diagnosis, the most prevalent type of dementia was unspecified dementia (56%), followed by AD (31%), VD (12%), PDD (10%), DLB (3%), and FTD (< 1%), and most patients had scores indicating severe illness on the Charlson Comorbidity Index (71%) and frailty index (62%). Across all dementia types, IRs (per 100 person-years) were high for emergency department visits, oral anti-infective use, and urinary tract infections after the initial psychosis diagnosis. Patients with DLB had the highest incidence of most clinical outcomes. After 1 year of follow-up, the cumulative probability of death was about 30% for all dementia types, and after 5 years, was about 80% among patients with DLB, VD, AD, or PDD and about 60%-65% among patients with FTD or unspecified dementia. CONCLUSIONS: Patients with dementia-related psychosis had a high burden of comorbidities, frailty, emergency department visits, infections, and death. Specifically, after DRP diagnosis, patients with DLB and VD had the highest burden of clinical events of interest.

Effects of adjunctive pimavanserin and current antipsychotic treatment on QT interval prolongation in patients with schizophrenia.

Background: Pimavanserin prolongs the QT interval, with mean increases in corrected QT (QTc) of 5-8 ms, and is currently being investigated for the treatment of negative symptoms of schizophrenia. Objectives: To assess QT interval prolongation in 3 studies investigating once-daily pimavanserin as an adjunct to current antipsychotic treatment in patients with schizophrenia. Methods: Electrocardiograms were unblinded from trials in which pimavanserin or placebo was added to main antipsychotics over 6 weeks (ENHANCE), 26 weeks (ADVANCE), and up to 78 weeks (ongoing 52-week, open-label extension study [study 035]) of treatment. Antipsychotic treatment was permitted throughout these studies. The 3 most frequently used antipsychotic treatments were examined-aripiprazole (including long-acting injectable), risperidone (including long-acting injectable), and olanzapine. QT intervals were corrected (QTc) using Fridericia's method, with elevated risk defined as either postbaseline value maximum of >500 ms or change from baseline to postbaseline maximum of >60 ms. Results: Of patients treated with adjunctive pimavanserin in ENHANCE, there were no postbaseline QTc values >481 ms; one patient in each of the risperidone and aripiprazole groups had change from baseline to postbaseline maximum >60 ms. More patients had change from baseline to postbaseline maximum ranging from 31 to 60 ms in the risperidone plus adjunctive placebo group (n = 5; 6.6%) than those in the risperidone plus adjunctive pimavanserin group (n = 3, 4.1%). In the pimavanserin plus antipsychotic group of ADVANCE, one patient had postbaseline QTc value >481 ms, and one patient treated with aripiprazole had change from baseline to postbaseline maximum of >60 ms. In study 035, a change from double-blind baseline to overall postbaseline maximum >60 ms occurred in one patient treated with aripiprazole and pimavanserin and in one patient treated with risperidone and pimavanserin. Similar proportions of patients had changes from double-blind baseline to post double-blind baseline maximum between 31 and 60 ms across treatments. No adverse events associated with an increase in the QTc interval were reported. Conclusions: Adjunctive pimavanserin with background antipsychotic treatment showed no evidence of QTc prolongation >500 ms postbaseline, consistent with previously reports on QT prolongation with pimavanserin.

Falls and Fractures in Patients with Parkinson's Disease-Related Psychosis Treated with Pimavanserin vs Atypical Antipsychotics: A Cohort Study.

BACKGROUND: Parkinson's disease-related psychosis increases patients' risk of falls. Pimavanserin is an atypical antipsychotic approved in the USA in 2016 for the treatment of hallucinations and delusions associated with Parkinson's disease-related psychosis. OBJECTIVE: We aimed to compare the risk of falls/fractures among patients with Parkinson's disease-related psychosis treated with pimavanserin vs other atypical antipsychotics. PATIENTS AND METHODS: We identified a cohort of patients with Parkinson's disease-related psychosis aged ≥ 40 years initiating either pimavanserin or a comparator antipsychotic (clozapine, quetiapine, risperidone, olanzapine, aripiprazole, brexpiprazole) in US commercial insurance and supplementary Medicare claims (2015-2019). Comparators were propensity score matched 2:1 with pimavanserin initiators; incidence rates of falls/fractures were compared using incidence rate ratios (IRRs) and 95% confidence intervals (CIs). RESULTS: We identified 112 eligible pimavanserin initiators and 982 comparators. Pimavanserin initiators were younger and had fewer severe comorbidities, indicators of impairment, and healthcare encounters, though they had higher Parkinson's disease medication use. The crude incidence rates [cases/100 person-years] (95% CI) for composite falls/fractures were 17.8 (7.7-35.0) for pimavanserin and 40.8 (35.0-47.4) for comparators. Matching retained 108 pimavanserin initiators and 216 comparators-all characteristics were well balanced after matching-with a matched IRR (pimavanserin vs comparator) of 0.71 (95% CI 0.27-1.67). Sensitivity analysis IRR estimates were consistently below 1.00, with a sensitivity analysis not requiring a diagnosis of psychosis resulting in an IRR estimate of 0.55 (95% CI 0.34-0.86). CONCLUSIONS: The results of this study do not suggest an increase in the risk of falls or fractures associated with pimavanserin compared with other antipsychotics in patients with Parkinson's disease-related psychosis. Sensitivity analyses suggest a decreased risk.

A Qualitative Study Exploring International Experiences of Seeking Treatment for Adults With Trichotillomania: A Story of Frustration and Unmet Need.

Trichotillomania (TTM) is a poorly understood disorder with no consensus on aetiology or epidemiology; often overlooked due to high comorbidity rates. Cross-cultural qualitative research is sparse; therefore, an international qualitative study was conducted. A generic qualitative approach with thematic analysis was used to explore data from asynchronous email interviews. The aim of this article is to report participant experiences of seeking treatment. Using a sample of 20 adults (18-55 years) from 15 different countries, this article highlights lack of access and unmet healthcare needs signifying an inadequate supply of TTM expertise globally and the need for more robust clinical guidance.

Well-being programmes in prisons in England and Wales: a mixed-methods study.

PURPOSE: In the past decade, there has been growing awareness of well-being and its importance and an increase in the development of activities or programmes aimed at improving well-being. The purpose of this study is to investigate what well-being programmes were being offered to prisoners in England and Wales and what benefits and other outcomes were experienced. DESIGN/METHODOLOGY/APPROACH: The study used a mixed-methods exploratory design in two phases. Phase 1 was a questionnaire survey of all adult prisons in England and Wales, completed by prison staff. In Phase 2, a sample of survey respondents took part in in-depth interviews. FINDINGS: The programmes identified in Phase 1 included physical activities, creative arts, mindfulness, horticulture, reading and animal-assisted activities. Prison staff reported a range of universally positive outcomes shared by all programmes, including enthusiasm from prisoners, enjoyment of the activities and being able to do something different from the usual prison routine. However, in Phase 2, interviewees rarely mentioned direct health and well-being benefits. The impetus for programmes was varied and there was little reference to national policy on health and well-being; this reflected the ad hoc way in which programmes are developed, with a key role being played by the Well-being Officer, where these were funded. ORIGINALITY/VALUE: The literature on well-being programmes in prisons is limited and tends to focus on specific types of initiatives, often in a single prison. This study contributes by highlighting the range of activities across prisons and elucidating the perspectives of those involved in running such programmes.

Mapping palliative care provision in European prisons: an EAPC Task Force Survey.

OBJECTIVES: Prison populations around the world are ageing and numbers are rising, leading to greater demand for palliative care for prisoners approaching the end of life. This paper reports a survey that was undertaken by the European Association for Palliative Care Task Force on mapping palliative care provision for prisoners in Europe. The Task Force was established to begin to address the gap in research knowledge by exploring prison systems and care provision across different countries. METHODS: The survey, developed by the Task Force Steering Committee, consisted of 40 questions in six sections. It was completed through online searches; only data that were publicly available on the internet were included. Numerical data were analysed using descriptive statistics, and thematic comparisons were made of free-text data. FINDINGS: The survey was completed for eight countries: Australia, Belgium, Czech Republic, England and Wales, France, Portugal, Scotland and Slovakia. Three main findings are reported here: healthcare and palliative care provision in prisons, deaths in custody and compassionate release. Despite increasing numbers of older prisoners, relatively few prisons provide inpatient care, and only one country has any prisons that provide dedicated palliative care services. Early release on compassionate grounds is extremely rare in most countries. CONCLUSION: For the principle of equivalence to be adhered to, facilities for sick and dying prisoners need to be improved, or many more people need to be released on compassionate grounds at the end of life. This mapping study has identified key issues in relation to palliative care in prison and provides the basis for further international research.

Constructing a new role for family carers and volunteers providing care towards the end of life: an action research approach exploring a new model of hospice care.

The objective of this study was to understand the conceptualisation and development of a novel way of providing end-of-life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information. Data collection (2017-2018) included documents (e.g., meeting minutes) and interviews (individual and group) with external (e.g., GPs) and internal (e.g., staff, managers, volunteers, patients, family carers) stakeholders. These were followed by action cycles conducted by a core action group which explored issues related to family and young carers, the relationship between the main and Cottage Hospices and workforce engagement with the change process. Iterative, inductive, thematic analysis was followed by axial coding facilitated within NVivo. Twenty-six individual and eight follow-up interviews, two group interviews and five discrete action cycles were completed. At the core was a focus on disruption of the norm of professionally provided and mediated care, with three main themes: imagining the future of Cottage Hospice (growing demand, a home-like space, innovative roles for families and volunteers); developing the role of family caregivers (making agreements, meeting needs, social inclusion and the 'unknown' expectations) and quality and safety issues (negative perceptions, personalised care and volunteer roles). Change was viewed as both a threat and an opportunity. Cottage Hospice represents the possibility of a truly new way of meeting the needs of dying people and their families, and could act as a template for progressive service developments elsewhere.

Increased risk of falls and fractures in patients with psychosis and Parkinson disease.

OBJECTIVE: Evaluate whether the risk of falls and fractures differs between patients with Parkinson disease with psychosis (PDP) and patients with Parkinson disease (PD) without psychosis at similar disease stages. METHODS: Patients with PD without psychosis were identified in the Medicare claims databases (2008-2018) and followed from the first PD diagnosis date during the study period. Patients with a subsequent diagnosis of psychosis were included in the PDP group. Patients with PDP and PD without psychosis were propensity score-matched based on characteristics within blocks of time since cohort entry. The incidence rates (IRs), expressed per 100 person-years, and 95% confidence intervals (CIs) of falls and fractures were evaluated as composite and separate outcomes. Incidence rate ratios (IRRs) were used to compare patients with PDP and PD without psychosis in the matched cohort. RESULTS: 154,306 patients had PD without psychosis and no falls or fractures before cohort entry; the IR for falls and fractures was 11.41 events (95% CI, 11.29-11.53). 12,127 patients (7.8%) had a subsequent PDP diagnosis. PDP patients had a higher prevalence of most comorbidities and risk factors for falls and fractures than those without psychosis. The crude IR for falls and fractures among PDP patients was 29.03 events (95% CI, 28.27-29.81). PD without psychosis and PDP groups had more falls than fractures. After matching, 24,144 PD patients without psychosis (15.6%) and 12,077 PDP patients (99.6%) were retained. Matched PDP patients had a higher incidence of falls and fractures than PD patients without psychosis (IRR = 1.44; 95% CI, 1.39-1.49). The higher increased rate was noted separately for falls (IRR = 1.48; 95% CI, 1.43-1.54) and any fractures (IRR = 1.17; 95% CI, 1.08-1.27) as well as within specific types of fracture, including pelvis and hip fractures. CONCLUSIONS: Our findings suggest a modest but consistently higher increased risk of falls and fractures in PDP patients compared with PD patients without psychosis.

Utilization of Multiparametric MRI of Prostate in Patients under Consideration for or Already in Active Surveillance: Correlation with Imaging Guided Target Biopsy.

This study sought to assess the value of multiparametric magnetic resonance image (mp-MRI) in patients with a prostate cancer (PCa) Gleason score of 6 or less under consideration for or already in active surveillance and to determine the rate of upgrading by target biopsy. Three hundred and fifty-four consecutive men with an initial transrectal ultrasound-guided (TRUS) biopsy-confirmed PCa Gleason score of 6 or less under clinical consideration for or already in active surveillance underwent mp-MRI and were retrospectively reviewed. One hundred and nineteen of 354 patients had cancer-suspicious regions (CSRs) at mp-MRI. Each CSR was assigned a Prostate Imaging Reporting and Data System (PI-RADS) score based on PI-RADS v2. One hundred and eight of 119 patients underwent confirmatory imaging-guided biopsy for CSRs. Pathology results including Gleason score (GS) and percentage of specimens positive for PCa were recorded. Associations between PI-RADS scores and findings at target biopsy were evaluated using logistic regression. At target biopsy, 81 of 108 patients had PCa (75%). Among them, 77 patients had upgrading (22%, 77 of 354 patients). One hundred and forty-six CSRs in 108 patients had PI-RADS 3 n = 28, 4 n = 66, and 5 n = 52. The upgraded rate for each category of CSR was for PI-RADS 3 (5 of 28, 18%), 4 (47 of 66, 71%) and 5 (49 of 52, 94%). Using logistic regression analysis, differences in PI-RADS scores from 3 to 5 are significantly associated with the probability of disease upgrade (20%, 73%, and 96% for PI-RADS score of 3, 4, and 5, respectively). Adding mp-MRI to patients under consideration for or already in active surveillance helps to identify undiagnosed PCa of a higher GS or higher volume resulting in upgrading in 22%.

'We Call it Jail Craft': The Erosion of the Protective Discourses Drawn on by Prison Officers Dealing with Ageing and Dying Prisoners in the Neoliberal, Carceral System.

The UK prison population has doubled in the last decade, with the greatest increases among prisoners over the age of 60 years, many of whom are sex offenders imprisoned late in life for 'historical' offences. Occurring in a context of 'austerity' and the wider neoliberal project, an under-researched consequence of this increase has been the rising numbers of 'anticipated' prison deaths; that is, deaths that are foreseeable and that require end of life care. We focus here on 'jail craft'; a nostalgic, multi-layered, narrative or discourse, and set of tacit practices which are drawn on by officers to manage the affective and practical challenges of working with the demands of this changed prison environment. Utilising findings from an empirical study of end of life care in prisons, we propose that the erosion of jail craft depletes protective resources and sharpens the practical consequences of neoliberal penal policies.

Ageing and dying in the contemporary neoliberal prison system: Exploring the 'double burden' for older prisoners.

Prison populations across the world are increasing. In the United Kingdom, numbers have doubled in the last two decades, and older prisoners now constitute the fastest growing section of the prison population. One key reason for this shifting prisoner demographic is the growing numbers of men convicted of 'historic' sexual offences, many of whom are imprisoned for the first time in old age, and housed in prisons not suited to their needs. These demographic changes have profound consequences, including increased demand for health and social care in prison, and rising numbers of anticipated deaths in custody. Using the findings from a recently completed study of palliative care in prison, this paper proposes that older prisoners face a 'double burden' when incarcerated. This double burden means that as well as being deprived of their liberty, older people experience additional suffering by not having their health and wellbeing needs met. For some, this double burden includes a 'de facto life sentence', whereby because of their advanced age and the likelihood that they will die in prison, they effectively receive a life sentence for a crime that would not normally carry a life sentence. There has been little popular or academic debate concerning the ethical and justice questions that this double burden raises. Drawing on the work of Wacquant and others, the paper proposes that these changes are best understood as unplanned but reasonably foreseeable consequences of neoliberal penal policies. Although the paper focuses on the UK (which by comparison with other European countries has high rates of imprisonment), many of the challenges discussed are emerging in other countries across the world. This paper illustrates starkly how neoliberal policies and discourses have shaped the expansion and composition of the prison population with its consequent implications for health and justice.

Family carers' experiences of coping with the deaths of adults in home settings: A narrative analysis of carers' relevant background worries.

BACKGROUND: Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. AIM: To illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult. DESIGN: A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011-2013 on the experiences of adult family carers ( n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions. Interviews occurred post-bereavement. This article reports on a subset of participants' interview transcripts ( n = 30) where narrative analysis was undertaken. SETTING/PARTICIPANTS: Carers were interviewed in their home setting, having been purposively recruited via general practitioner practices in two study sites in England. The subset of participants ( n = 30) was purposively selected from the parent sample with reference to carers' age, relationship to the patient, family circumstances and study sites. RESULTS: Evidence is provided on the importance of what we conceptualise as carers' 'relevant background worries'; these varied in nature, significance and impact. Four case studies are presented where these worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. CONCLUSION: It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries.