Family and friends (family carers) provide substantial support to those with mental ill health, often affecting their own well-being. Subsequently, family carers have their own recovery journeys. Research highlights numerous benefits of attending Recovery Colleges, but whether these apply for family carers remains unexplored.

We aimed to explore family carers’ experiences of attending Recovery Colleges across England, to understand current provision and how this might better include and support family carers.

Together with lived experience researchers, this qualitative focus group study used collaborative thematic analysis of online focus groups and interviews with family carers and Recovery College staff from across England.

We generated six superordinate themes: ‘The “carer” identity is not clearcut’, ‘Recovery ethos applies to family carers too’, ‘Power of lived experience’, ‘Educational focus is appealing’, ‘Family carers deserve recognition and provision’ and ‘Reaching out and fitting around family carers’. Attending Recovery Colleges developed family carers understandings and gave them skills to navigate services and support themselves and others, which furthered their own recovery journeys. Shared learning spaces were helpful, but participants felt these were not always oriented to include family carers. Our findings revealed ways Recovery Colleges could increase their relevance and accessibility to family carers.

The unique characteristics of Recovery Colleges suited the recovery needs of family carers. However, more resources are needed to develop this potential and reach more family carers. Family carer co-researchers enriched our findings, and discussions with the Recovery College community furthered our recommendations for practice.

In the UK, access to dignified and compassionate palliative care is increasingly being reported as inadequate. This is a particular issue in South-West England, where there is an ageing population, historical lack of research, and particular challenges due to its rural and coastal location. The aim of this study was to provide a holistic view of patient and family experiences of care toward the end-of-life in this location and to collaboratively identify the challenges they face.

Six qualitative focus groups were held with people who were toward the end of their life, family/carers, and people who were bereaved. Participants were recruited via hospice networks. Most focus groups were face-to-face, and all were facilitated by two researchers.

A range of challenges were identified at different stages of the patient and family carer journey near the end-of-life. These included issues related to the delivery of care, such as communication challenges, a lack of out of hours care, and also a lack of personalized care. Patients and families also experienced everyday challenges due to the impact of living with a life-shortening condition and altered family dynamics as family members became carers. There were also some traumatic experiences of death and a sense of abandonment when care could not be accessed.

This study provides a core first step in developing partnership working with members of the public, which can be built upon to develop future research agendas. This work has identified areas for improvement, so that ultimately, end-of-life experience for the individual, their carers, and families can be improved.

According to the “Last Year of Life in Cologne” study, 68% of patients with a serious and terminal illness wanted to die at home, but 42% died in hospital. Only 1 in 5 died at home. Most people want to spend their last days and hours at home, but the reality is that this is not always possible. Recommendations are needed on how best to support families to enable people to die at home – if this is their preferred place of death. Our aim was to identify the factors that make it possible for people to die at home and to analyze factors of dying at home.

Germany-wide quantitative cross-sectional online survey of bereaved adult relatives.

The needs of 320 relatives of patients who wished to die at home were explored. Of these, 198 patients died at home and 122 did not. In the last 3 months of life, caregivers needed support in managing out-of-hours care (p < 0.001), financing (p = 0.012), preparing and organizing home care (both p < 0.001), communicating with the patient and medical staff (p = 0.012 and p = 0.009, respectively), and pain management (p < 0.001). Relatives whose next of kin did not die at home had higher needs, suggesting that these factors are key to home care of the dying.

The process of dying at home begins long before the actual dying phase. To minimize caregiver burden and improve symptom management, advanced home care plans are needed, with ongoing reassessment of family preferences and abilities.

Family carers of people living with motor neurone disease (MND) face continuous changes and losses during the progression of the disease, impacting on their emotional wellbeing. Carers’ emotions might affect their engagement in everyday activities and their caring role. However, how carers manage their emotions and which strategies they identify as useful to cope with them while caring is under researched.

To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND.

We conducted 14 semi-structured interviews with family carers currently supporting people living with MND living in the UK. Interviews were audio/video recorded and professionally transcribed verbatim. We analyzed data inductively within an interpretive descriptive approach, using reflexive thematic analysis.

Three key themes were generated from the analysis. Destabilization of diagnosis reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. Adapting to new circumstances and identifying coping strategies captured how carers experienced everyday changes and losses and how they gradually adjusted to the situation by identifying coping strategies to be able to manage arising emotions. Maintaining emotional coping encompassed how carers used individual strategies they had tried before and had worked for them to cope emotionally with the continuous changes and losses while preserving their emotional wellbeing.

Our findings suggest that carers of people living with MND embark on an emotional journey from the diagnosis of the disease. As the disease progresses, carers adopt coping strategies that best work for them to manage their emotions (e.g., living day by day and seeking support). Understanding the key strategies used to support emotional coping during the caring journey and how carers re-construct their emotional life around MND could help inform future practice and research to better support carers of this population.

Many patients with advanced cancer identify home as being their preferred place of death. A critical component in achieving a home death is the support of family members, who often take on responsibilities for which they feel insufficiently prepared with subsequent impacts upon their health and well-being.

This study sought to review existing qualitative literature on family carers’ experiences in providing end-of-life care at home for patients with advanced cancer, with an emphasis on exploring factors that influence how prepared they feel for their role.

A narrative review was chosen to provide an overview and analysis of qualitative findings. MEDLINE, PubMed, PsychINFO, and EMBASE databases were searched with the following search terms: “Cancer,” “Caregiver,” “End of Life Care,” “Home,” and “Qualitative.” Inclusion criteria were as follows: English language, empirical studies, adult carers, and articles published between 2011 and 2021. Data were abstracted, and study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative research.

Fourteen relevant articles were included. Three overarching themes reflecting the factors influencing family preparedness for their role were identified: “motivations for providing care,” “interactions with health-care professionals,” and “changes during the caring process.”

Inadequate preparation of family carers is apparent with regard to their role in providing end-of-life care at home for patients with advanced cancer. There is a need for health-care workers to more effectively identify the information and support needs of families, and utilize evidence-based strategies that have emerged to address these needs.

Family carers supporting an individual with psychosis often experience poorer mental health, however, little is known about specific risk factors among these carers. We investigated the associations between demographic, caregiving characteristics and mental health outcomes in family carers supporting an individual with psychosis and compared carers' outcomes with general population norms.

We analysed baseline data from the COPe-support randomised controlled trial of online psychoeducation and peer support for adult carers supporting an individual with psychosis between 2018 and 2020. We collected carers' demographic and health outcome data, including wellbeing using Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS as primary outcome), quality of life using EQ-5D-5L and caregiving experience assessed with Experience of Caregiving Inventory. We tested associations between carers' demographic and caregiving characteristics for each outcome in turn and meta-analysed carers' WEMWBS and EQ-5D-5L with Health Survey England (HSE) general population data from 2016 and 2017, respectively.

The 407 carers of people with psychosis had a mean WEMWBS score of 42.2 (s.d. 9.21) and their overall weighted pooled WEMWBS score was 7.3 (95% confidence interval (CI) −8.6 to −6.0, p < 0.01) lower than the HSE general population sample, indicating carers have poorer mental wellbeing by more than double the minimum clinically important difference of 3 points on WEMWBS. Among all caring relationships, partners had poorer wellbeing compared to parents with lower WEMWBS score (−6.8, −16.9 to 3.3, p = 0.03). Single carers had significantly poorer wellbeing (−3.6, −5.6 to −1.5, p < 0.01) and a more negative caregiving experience than those who were cohabiting. Spending more than 35 h per week caregiving increased carers' negative experience significantly (p = 0.01).

Carers of people with psychosis have poorer mental health than non-carers. Partners, lone carers and those spending more than 35 h per week on caring were found to be most at risk of poor mental health. Based on the results, we advocate that the details of carers for individuals with psychosis should be added to the existing carers or severe mental illness registers at all general practitioner surgeries and for their wellbeing screened routinely. Future large-scale prospective studies are needed to develop a predictive model to determine risk factors, hence to aid early identification of carers' support needs. Such understandings are also useful to inform tailored intervention development.

To explore the introduction of an evidence-based information intervention – the ‘Caring for Someone with Cancer’ booklet – within home care and end-of-life care, to inform future implementation and practice development within this setting.

Family carers’ contribution is crucial to enable care and death of people at home. The ‘Caring for Someone with Cancer’ booklet received positive responses from family carers and District Nurses and is an evidence-based intervention designed to support carers to deliver basic nursing tasks. Further feasibility work was required to establish how it should be implemented. Little is known about how to successfully translate interventions into practice, particularly within home care settings and end-of-life care.

Implementation of the ‘Caring for Someone with Cancer’ booklet, utilising a qualitative case study approach, in four home care sites. Semi-structured interviews, informed by Normalization Process Theory (NPT), were undertaken at implementation sites in May 2016–June 2017. Participants were generalist and specialist nurses, managers, and Healthcare Assistants (HCAs). A framework approach to analysis was adopted.

Forty-five members of staff participated. Failed implementation was associated with organisational-level characteristics and conditions, including workforce composition and predictability of processes. Unstable work environments meant home care providers focused on short-term rather than long-term goals, precluding practice development. Staff’s perceptions of the time available to engage with and implement the intervention inhibited adoption, as many participants were “just getting through the day”. Implementation was successful in sites with explicit management support, including proactive implementation attempts by managers, which legitimatised the change process, and if all staff groups were engaged. To encourage uptake of evidence-based interventions in home care settings, practitioners should be given opportunities to critically reflect upon taken-for-granted practices. Future implementation should focus on work pertaining to the NPT construct ‘Collective Action’, including how staff interact and build confidence in new practices.

Chronic Obstructive Pulmonary Disease (COPD) can be highly incapacitating, imposing a significant burden on family members, however, limited research has been conducted on psychological health of family carers. Thus, this study examined anxiety and depression symptoms in family carers of people with COPD and their predictors.

A cross-sectional study was conducted with family carers and respective patients with COPD. The caregiving situation and the perceived burden, through the Carers’ Assessment of Difficulties Index, were collected from family carers. Patients’ COPD severity and activities limitation were assessed. The Hospital Anxiety and Depression Scale (HADS) was used to assess anxiety and depression symptoms in family carers and patients. Scores ≥8 were considered clinically significant.

A total of 203 family carers (58.2 ± 14.8 years old; 75.4% female) and respective patients with COPD (69.2 ± 11.5 years old; 36.5% female) were included. Clinically significant anxiety symptoms (HADS-anxiety ≥8) were present in 63.5% (n = 129) of family carers, depression symptoms (HADS-depression ≥8) were in 34% (n = 69) and both were in 27.1% (n = 55). Perceived burden [odds ratio (OR) 1.04, 95% confidence intervals (CI) = 1.01–1.06; 1.05, 95% CI = 1.03–1.07] and patients’ activities limitation (OR 1.32, 95% CI = 1.01–1.79; 1.41, 95% CI = 1.01–1.96) were significant predictors of anxiety and depression symptoms. Anxiety symptoms were also predicted by female gender (OR 0.33, 95% CI = 0.16–0.66) and depression symptoms by older age (OR 1.03, 95% CI = 1.01–1.06).

Family carers of patients with COPD experience anxiety and depression symptoms. Perceived burden, female gender, older age, and patient's activities limitation were predictors of these distressing symptoms. These findings highlight the need to address family carers’ needs, namely by investigating the effectiveness of supportive interventions on family's psychological health.

Previous intervention research has shown that group education sessions for carers are effective but not always feasible due to the demands of the caregiving role and the difficulty in getting carers to attend. This project was a consumer-led research initiative to develop and evaluate a multimedia resource (DVD) providing information and support for carers of people receiving palliative care.

Eight carers were recruited from a community palliative care service to form a steering committee for the project. In collaboration with two researchers, the committee discussed the topics that would be included in the resource, developed an interview guide, participated in the filmed interviews, and developed the evaluation program. The steering committee participated in a focus group as part of the evaluation to elicit their experiences of the project. An evaluation was conducted that included the following: questionnaires for 29 carers and 17 palliative care health professionals; follow-up telephone interviews with carers; a focus group with health professionals; and a focus group with the Carer Steering Committee.

The carers and health professionals reported that the DVD was informative (93 and 94%, respectively), realistic (96 and 88%), supportive (93 and 88%), and helpful (83 and 100%). All health professionals and carers reported that they would recommend the resource to carers. Carers on the steering committee reported substantial benefits that involved the opportunity to help others and to openly discuss and reflect on their experiences.

This is an important resource that can be utilized to support family carers and introduce palliative care. Currently, 1500 copies have been distributed to palliative care services and professionals nationwide and is available online at centreforpallcare.org/index.php/resources/carer_dvd/. Development of this DVD represents a strong collaboration between carers and researchers to produce a resource that is informative, supportive, and meaningful.