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Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This chapter will share insights from an ongoing research programme to reduce family conflict in the context of dementia care while discussing the accompanying ethical considerations. Research into dementia care has primarily focused on improving outcomes for the care dyad, leaving the influence and input of the wider family unit under investigated. Family conflict can detrimentally impact the quality of care provided and leave caregivers vulnerable to psychosocial difficulties. Family conflict occurs in the context of dementia care but there is little research on how to reduce, or prevent, such conflict occurring. In this research programme, a systematic review investigated the effectiveness of interventions that include the wider family unit to reduce family conflict; only one study was included which evidenced the lack of interventions in this area. A qualitative scoping review was then conducted to explore the lived experiences of caregiving families with experience of family conflict and reported solutions. It was found that conflict occurred due to factors including care decisions and role transitions which impacted relationships and affected care provision. Solutions to conflict were less often reported, indicating an important gap in the literature. Interviews with Alzheimer's Society staff and volunteers revealed that stigma and denial surrounding dementia were prevalent, and families were often reluctant to seek external help. This research programme is currently establishing public patient involvement (PPI) to develop the research methodology and interview questions for people with dementia (PWD) and their family caregivers to explore their lived experiences and potential solutions to family conflict. To conclude, this research programme will propose a family-focused intervention aimed at systemic family conflict for those caring for someone with dementia.

This paper aims to outline the process of developing a new co-produced virtual group support programme called Positive Family Connections (PFC) aimed at family carers of children with a learning disability, or who are autistic, aged between 8 and 13 years.

Development process: family carers were recruited to develop PFC prior to a feasibility randomised controlled trial being conducted (not reported in this paper). The programme was positively oriented and family systems-focused. PFC was developed by family carers, along with the research team, and designed to be delivered by family carer facilitators. The development process included several meetings to design the format and content of the programme. An initial pilot was then delivered and further amendments made to the programme in response to the pilot participants’ feedback.

The programme: the co-produced PFC programme involved attending six weekly sessions on Zoom; each 2-h session focused on different themes (e.g. communication and activities).

Reflections on the co-production process: key ingredients of co-production included ensuring clarity on roles, positive communication and understanding of the family carers’ situation and utilising the varied skills family carers can bring to research and practise.

This is the first family systems-focused programme that the authors know of, that has been co-produced with family carers and solely delivered virtually by trained family carer facilitators from the outset.

The study aims to identify the predictors of depression and anxiety among carers of hospitalized patients with mental illness in Eradah Complex for Mental Health Hospital.

A descriptive correlational study design was conducted using a convenient sample of family carers of patients with mental illness (N = 216). The study used the Beck Depression Inventory and Anxiety Inventory scales.

The results of regression models revealed that the socio-demographic characteristics of the family carers showed that age is a statistically significant predictor of family carers depression and anxiety scores. In addition, the age of the family carers explained 36% of the variance in the family carers depression and anxiety scores, while marital status explained 64% of the total variance in the family carers’ depression and anxiety scores. Furthermore, having received support in caring significantly predicted depression and anxiety scores, and this was the case for occupation status and being diagnosed with any form of chronic illness.

Based on the findings of this study, the authors opine that evaluations of carers’ cognitive strategies and social support are needed to determine the risk of depression in carers of mental patients.

This study is the one of the limited studies conducted in Saudi Arabia to identify predictor of depression and anxiety among caregivers of hospitalized patients with mental illness. The study has used a validated scales to assess the main study outcomes.

This chapter intends to provoke thought around assumptions about young people providing care, what influences how young carers are perceived and how stigma and judgement associated with caring are discussed. We conclude by emphasising the significance of the role as an educator in creating discussion about the breadth and diversity of care experiences. This role includes both educating young people about young caring and being mindful that your students may currently be or previously been a young carer.

The purpose of this paper is to provide a commentary on Griffin et al.’s paper, “Positive family connections: Co-producing a virtual group programme for family carers of children with learning disabilities or who are autistic”.

This is a commentary on co-production, drawing on Griffin et al.’s paper and the values base of the field.

Co-production is a valuable approach which seeks to empower and include key people in research. As suggested by Griffin et al., disseminating learning about co-production is an important additional principle of co-production, which demonstrates a values-based commitment to co-production.

This commentary is aimed at professionals and researchers working in the field of learning disabilities who are keen to learn about and do co-production.

This paper is a commentary that aims to address themes arising from the article by Morgan titled “Wales and Autism: The Impact of Philanthropy Matched with Ambition”.

This opinion piece considers the broader impact of stakeholder engagement in the field of autism, including how the dissemination of evidence-based support could be made more accessible for autistic people, their families and carers and philanthropists.

This paper highlights the link between stakeholder engagement and meaningful change in policy and practice in the field of autism. It highlights the need for philanthropists to invest in evidence-based support but highlights the difficulty in identifying and accessing such support. This piece supports the use of evidence and gap maps (EGMs) to increase the accessibility of autism research and evidence.

While stakeholder engagement is encouragingly rising in this field, most of the evidence is held in academic journals, which are behind paywalls and, therefore, inaccessible to many autistic people, their families, carers and associated professionals. Displaying evidence using EGMs provides an accessible way for autistic people and those who support them to identify possible avenues of support quickly and allows philanthropists to direct research funding to areas of high priority.

Deaf people, who are British Sign Language (BSL) users, are, at times, carers for their parent or spouse when they have dementia. This can be a challenging role for the wider population, but if the common language in service provision is not one you share, then this care can be impacted by the lack of formal structures that support the Deaf caring role. This study aims to explore the experiences of Deaf carers supporting people with dementia, in an unpaid role, during the COVID-19 pandemic to understand more about their potential support preferences.

Online interviews with seven Deaf carers sharing their experiences of supporting their family member with dementia happened during the first year of the COVID-19 pandemic. Interpretive phenomenological analysis was used to qualitatively examine each Deaf carers’ stories.

Findings included Deaf carers’ lack of access to information, surrendering their autonomy to hearing family members to communicate with health-care professionals, with overarching isolation within local communities and online. Findings show a widespread infrastructural failure to meet the linguistic and specific support needs of this minority population.

Seven Deaf carers took part in this study. This means the findings may not be generalisable.

Health-care professionals and social care structures need to develop robust clear communication pathways for Deaf carers to receive the support needed to provide effective care.

If health-care professionals undertake training about Deaf people and BSL, that will mean Deaf carers will receive effective support to be able to care for a person living with dementia. This means that their Deaf identity will be recognised within the mainstream and the care provided will be much more effective for the person with dementia.

To the best of the authors’ knowledge, these are the first interviews undertaken with Deaf carers of people with dementia during the COVID-19 pandemic and its subsequent lockdowns. Understanding everyday barriers and social care limitations in terms of language access will enable Deaf carers to assert their rights and for care professionals to adapt their communication to match the individuals involved in the care package.

The COVID-19 pandemic caused major disruption in community support for vulnerable older people and is thought to have exacerbated existing issues within UK adult social care. This study aims to examine the legacy of that disruption on how meeting centres for people affected by dementia have been impacted in continually evolving circumstances.

Semi-structured interviews and focus group discussions were conducted at three meeting centre case study sites. Ninety-eight participants, including people living with dementia, family carers, staff, volunteers, trustees and external partners, were asked about the impact and legacy of the pandemic upon meeting centres. A thematic analysis was carried out on the data.

Ten themes were identified: ability to re-open venues; increased health decline and loss of members due to isolation; closure or halting of linking services and dementia community support; disruption to diagnosis and referrals; increase in outreach, building communities and overall reach; digital access and use of technology (boom and decline); changes to carer involvement and engagement; continued uncertainty and changes to funding, resources and governance; staff and volunteer recruitment issues; and relief at/wish for return to pre-pandemic norms.

This paper offers new insight into a still-developing situation, namely, the legacy effects of the pandemic upon third-sector community support for people affected by dementia and the health and social care services that support it. The reduction in maintenance of pandemic-era technological innovations is a key finding.

This preliminary study aims to examine the use of a co-designed immersive virtual reality intervention programme in improving access to health care for people with intellectual disability.

A co-production approach was used to design a virtual reality intervention in collaboration with people with intellectual disability, their families and carers. A mixed-method single sample pre-test-post-test design examined using a virtual reality intervention simulating health-care environments to improve access of attending health-care appointments. Qualitative feedback was used to understand participants’ experience and opinions of using the digital technology.

The study found that the intervention did help people access health-care appointment and reduced their fear. Improvements were also found in quality-of-life post intervention. Positive feedback was provided from participants on using digital technologies indicating the novelty of the approach and potential further applications.

To the best of the authors’ knowledge, this is the first study which has used virtual reality to support people with intellectual disability access health care.

Institutional abuse is a worldwide phenomenon with the UK also subject to several high-profile abuse scandals perpetuated on people with learning disabilities and/or mental health conditions living within institutional settings. This study aims to provide a broad perspective of safeguarding practices within institutional care to inform practice and service development in this area.

A narrative overview was undertaken of a range of empirical evidence, discussion papers, enquiry reports, reports from regulatory bodies and professional guidance to explore safeguarding practices within institutional care for individuals with learning disabilities and/or mental health conditions.

A range of literature was identified that exposed and explored abuse in this context. Three key themes were identified: failings within institutional care; safeguarding issues and concerns; and good practice within institutional care. Whilst guidance is available, standards are explicit and protocols facilitate improvement potential in this area, a consistent message was that statutory recommendations for reform have not been effective.

This paper provides an important resource for practitioners and service providers involved in institutional care. An accessible overview of both the empirical evidence and grey literature on adult safeguarding within institutional settings is provided, along with a range of standards and resources that specify practice in these settings.