Planning and designing a self-compassion intervention for family carers of people living with dementia: a person-based and co-design approach

Background This article describes the research activities undertaken to plan and design a self-compassion intervention for family carers of people living with dementia using a person-based and co-design approach. In providing this example, our aim is two-fold: to highlight the value of using qualitative research and co-design processes within intervention development; and to showcase systematic reporting of an intervention’s early planning and design stages. Methods A person-based and co-design approach informed the planning and design of the self-compassion intervention. In Stage 1, qualitative interviews were undertaken with 14 family carers of people living with dementia and 14 professional stakeholders. In Stage 2, intervention guiding principles were developed, psychological theory was incorporated, and six family carers of people living with dementia were engaged as co-designers. Results Knowledge generated during intervention planning identified that the intervention should be situated within the concept of compassion more broadly; address misperceptions, fears, blocks, and resistances to self-compassion; and target feelings of shame, guilt, and self-criticism. Subsequent intervention design activities determined that the needs of family carers of people living with dementia were best met by tailoring an existing intervention, namely group-based Compassion-Focused Therapy. Conclusions Our systematic approach highlights the value of incorporating in-depth qualitative research and co-design within the intervention development process to prioritise the perspectives and lived experiences of family carers of people living with dementia. The planning and design process outlined provides insight that is applicable to the development of our intervention and complex health interventions within gerontology and beyond.

What constitutes ‘good’ home care for people with dementia? An investigation of the views of home care service recipients and providers

Background Our objective was to explore what people receiving and providing care consider to be ‘good’ in-home care for people living with dementia. Methods We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke’s six-step approach. Results Consensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers’ understanding of dementia and its impact; 2) Home care workers’ demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers’ knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers. Conclusions It is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services. Trial registration ACTRN 12619000251123.

How to support working family carers? British initiatives as a practical means to reduce loneliness in everyday life of family caregivers in Poland

Among various publications regarding end-of-life care in Poland there is one piece of important research that shows a difficult situation for family caregivers in end-of-life care in Poland, who often lack recognition and support and face a lonely struggle, especially in home care settings (Janowicz, 2019a). The Polish Government published documents in support of family caregivers for the first time in 2019, recognizing respite care and allocating money to some of them. Poland has successfully implemented British standards of hospice and palliative care, making it the best in Central-Eastern Europe; the same could be done in supporting carers in family settings (Krakowiak, 2020a). We have already learnt and benefited from the experience of the British organisation Carers UK, who have been operating successfully for more than 50 years and working towards inclusion of formal and informal care (Klimek, 2020). But how can we move forward in helping those who face loneliness and feelings of helplessness as family carers? We can learn from those who have already developed tools and created strategies supporting family caregivers. Exploring the educational strategies of supporting organizations from the UK, will help to point towards possible solutions to this social and educational challenge in Poland, helping to reduce the loneliness of carers in the home care settings. Most families still feel isolated, while most of our local communities do not support those who care, often for many months and years. Social educators and social workers need to tackle the questions of loneliness and isolation that many family caregivers face. First steps have been made and first publications issued, but more robust strategies and practical solutions are needed. Newest facts and figures from Carers UK documents and Best Practice In Supporting Carers by Carer Positive Employer in Scotland (2020) will help to show existing strategies used for and by employers. Among many existing initiatives this one regarding combining care and work could be very important to recognise the needs of working carers, sharing their job with the duty of constant care at home. Action is urgently needed in Poland, where many people do a full-time job alongside caring at home. Recognition of family carers’ needs by their workplace, support from employers and flexibility in working hours is still a rare exception, and it should be changed. The Covid-19 pandemic has fully exposed the problems of carers of dependent people around the world and also in Poland, especially difficult for those who combine care with work.

Family carer needs in advanced disease: systematic review of reviews

BackgroundFamily carers are vital in the management and delivery of home-based palliative care. Decision-makers need to know what the most commonly expressed unmet needs of family carers are to target available support services.AimTo identify the most commonly expressed needs of family carers of people with an advanced disease, assess the quality of current evidence, and set an agenda for future research and clinical practice.DesignA systematic review of reviews, prospectively registered on PROSPERO. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklist for systematic reviews and research syntheses.Data sourcesMEDLINE, Embase, Emcare, PsycINFO, CINAHL, Informit and Cochrane Library were searched for reviews about the needs of carers looking after patients with advanced disease from 2010 to 2020.ResultsFindings from 21 reviews identified emotional support, disease-specific knowledge, carer role responsibilities, self-care and general practical support as the most commonly expressed needs expressed by family carers. Additionally, access to professional services, formal education opportunities and communication with health professionals were identified as caregivers’ preferred ways of having these needs met. Extraction of carer-specific needs was challenging at times as results were often combined with patient results in reviews.ConclusionPractical difficulties exist in effectively resourcing services to meet the needs of family carers. Information regarding the most commonly expressed needs shared by caregivers and their preferred delivery source can provide an opportunity to focus available support services to achieve the highest possible impact for carers of patients with advanced disease.PROSPERO registration numberCRD42018088678.

Mindfulness-Based Cognitive Therapy for Stress Reduction in Family Carers of People Living with Dementia: A Systematic Review

The prevalence of dementia is increasing and the care needs of people living with dementia are rising. Family carers of people living with dementia are a high-risk group for psychological and physical health comorbidities. Mindfulness-based interventions such as mindfulness-based cognitive therapy show potential for reducing stress experienced by family carers of people living with dementia. This study aims to systematically assess the efficacy of mindfulness-based cognitive therapy in reducing stress experienced by family carers of people living with dementia. Electronic databases including MEDLINE, APA PsycINFO, EMBASE, CINAHL, Scopus, Web of Science, Cochrane Library, AMED, ICTRP, and ALOIS were searched for relevant studies up to August 2020. All types of intervention studies were included. Quantitative findings were explored. Seven studies were eligible for inclusion. The analysis showed that there was a statistically significant reduction in self-rated carer stress in four studies for the mindfulness-based cognitive therapy group compared to controls. One study that was adequately powered also showed reductions in carer burden, depression, and anxiety compared to control. Mindfulness-based cognitive therapy appears to be a potentially effective intervention for family carers of people living with dementia, but large, high-quality randomized controlled trials in ethnically diverse populations are required to evaluate its effectiveness.

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.

Tensions and polarities in the autonomy of family carers in the context of the COVID-19 pandemic in France

This article analyses the impact of the COVID-19 lockdown on ‘monetised’ family carers’ understanding of their own autonomy in a long-term care relation at home. The reduction or suspension of medico-social service deteriorated the situation of family carers of frail older people or people with disability. We develop and apply an analytical grid of 15 interviews of monetised family carers about the reorganisation of care systems and their situation as carers. We identify three types of understandings of autonomy among family carers in the context of the COVID-19 pandemic: preventive autonomy; health protection autonomy; and supported autonomy.

Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers

ObjectivesMen living with prostate cancer have supportive and palliative needs. However, few studies detail unmet needs (vs quality of life measurement) or include data from those with advanced disease. We aimed to identify unmet needs of people living with prostate cancer (men, family carers), including those with advanced disease.MethodsMixed-methods national survey (patient Supportive Care Needs Survey; Carer Support Needs Assessment Tool) and health status (EuroQol Visual Analogue Scale). Quantitative data were explored using regression analysis. Free text data were subjected to thematic analysis.Results216 men (mean age 65±8.5 years; active cancer 136 [63%]) and 97 carers (68 (70%) spouse/partner) provided data. 133 men (62%) reported moderate-to-high need which was more likely in advanced disease. Men’s health status was worse with active vs remitted disease (mean difference −11; 95% CI −17 to −5; p<0.001). 85 (88%) carers reported at least one unmet need relating to ‘enabling them to care’ and 83 (86%) relating to ‘their own well-being’. Carers with chronic illnesses had more unmet needs (p=0.01 to p=0.04) and patient receipt of palliative care independently predicted higher unmet carer needs (p=0.02).Free text data demonstrated widespread burden with: (1) poor communication/information, including about palliative care; (2) poorly managed symptoms/concerns and (3) poor care co-ordination. Incontinence, sexual dysfunction and hormone side-effects were serious problems, often left unaddressed.ConclusionsMany living with prostate cancer continue with wide-ranging concerns. Lack of systematic, ongoing needs assessment and poor communication compound inadequate clinical pathways. Person-centred care, interdisciplinary working and integrated palliative care should be resourced.

Co-designing complex interventions with people living with dementia and their supporters

Background and objectives We engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). Research design and methods Over October 2019–March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings. Results Most (15/20; 75%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group. Discussion and implications We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.