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Purpose The purpose of this paper is to provide a literature review on what is known about unpaid family carers who are at risk of or have experienced abuse from the people they provide care for and relevant policy/legal and practice responses for affected family carers. Design/methodology/approach A literature search was carried out to locate literature relating to unpaid family carers who are at risk of or have experienced abuse from the people they provide care for. This also incorporated grey literature, including policy guidance and law, to determine the existing knowledge base, gaps in practice and areas that might require further research. Findings The findings suggest that although carer harm is serious, it is under-researched. In addition, the unique needs of unpaid family carers who are at risk of or have experienced abuse, violence and harm from the people they provide care for are subsumed in safeguarding policy/law processes and practice under the auspices of the protection of “adults at risk” rather than the protection of “carers at risk”. Research limitations/implications It is important that those who support unpaid family carers who are at risk of abuse and harm know about their unique safeguarding needs and concerns to offer appropriate support. It is also apparent that policy and law need to address the gap in provision relating to the unique safeguarding concerns involving the abuse of unpaid family carers by the people they provide care for. This paper is based on this literature review and not on other types of research. Originality/value The paper provides insights into what is known about the abuse of unpaid family carers by the people they provide care for, and the policy/legal and practice responses to affected unpaid family carers. It contributes to the body of knowledge on carer abuse and safeguarding carers from abuse and harm.

IntroductionCompared to the general population, people living with schizophrenia spectrum disorders (SSD) are more likely to perpetrate acts of violence. When this happens, family members (informal carers) are most commonly the victims. However, family violence by people with SSD is often a taboo topic and largely neglected within public discourse, research, and clinical domains. Consequently, our understanding of families’ experiences and support needs are limited.ObjectivesTo develop a detailed understanding of the subjective experiences, and impact, of patient violence towards family carers.MethodsIndividual semi-structured interviews were held with family carers of adults with SSD and a history of violence perpetration towards their family carer. Interview data were subject to thematic analyses using NVivo software.ResultsTwenty-one UK based carers that were predominately White British (90%) and female (81%) were interviewed. Key themes highlight the range of physical and mental injuries endured by carers following patient violence, and speak to carers’ experiences of suffering, living in a constant state of hypervigilance, as well as social isolation in the context of shame, stigma, and an absence of professional and informal support.ConclusionsFamily violence by people living with SSD can and does happen. Yet, too often, carers are left with no option but to continue supporting their relative in the absence of support, even in contexts where this compromises their own safety. The devastating impact of violence is far-reaching, across all levels of the family-system. The findings highlight the danger of neglecting family violence by people with SSD in research and clinical fields.DisclosureNo significant relationships.

Technology has been identified as an important strategy in making caring sustainable. This article takes the design process for carer support technology as a lens on the divergent definitions that are in play when governments, technology developers and carers contemplate ‘sustainability’. We argue that a central impediment to finding a productive point of overlap among the three perspectives is a predominant focus on carers’ needs. We contrast this needs-based approach, and its focus on doing the tasks of care, with a goal-oriented approach focused on being in relationships. Reframing the conversation around goals is important to achieving truly sustainable caring.

Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes. We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews. Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as 'Poor' (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents' QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia. Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.

This study explored parents’/carers’ knowledge, interest, and preferences towards technology devices as support mediums for autistic children, the reasoning behind any choice and the factors associated with the most preferred technology device. Technology devices were conceptualised as smartphones, iPods, tablets, virtual reality, robots, and ‘other’ for participants to list their own further interpretations of technology devices. Survey data were collected from 267 parents/carers of autistic children aged 2–18 years internationally between May to October 2020. Parents/carers of autistic children and young people were aware of, interested in and mostly preferred the use of tablets because of their convenience and ease of use. They least preferred virtual reality followed by robots due to both being overwhelming, cold, inconvenient to transport and expensive. Robots, in particular, were unknown to respondents. The data suggested that some technology devices as a support medium are not widely known to families of autistic children and young people in support programmes. Technology devices need to be financially approachable and achieve a high standard of design to engage users. Future research should focus on gathering evidence from the autistic community about their preferences and views of technology devices as a medium in autism support programmes.

Personhood has been a key influence on the development of person-centred care models in dementia. However, there is ambiguity around the concept and interpretation of personhood, and what it means in practical terms for the delivery of care to people with dementia. This study examines the conceptualisation of personhood within the formal care system for people with dementia in Ireland. A multiple perspective study design examines the experiences of personhood in dementia from the perspectives of people with dementia, family carers and a range of formal carers. Semi-structured interviews with participants were conducted in both community and long-term care settings. Interpretative phenomenological analysis is used to examine the data. A total of 31 participants were interviewed: eight people with dementia, eight family carers and 15 formal carers. There is general consensus on the core elements of personhood among all participants: interests and preferences; lifecourse experiences; social interaction; family; and place. However, there is ambiguity among family carers and formal carers in the interpretation of changes to personhood as the disease progresses. Interpersonal and structural barriers to supporting personhood are identified by all participants. The findings provide guidance on the traits of personhood-enhancing care, including effective communication skills, and the potential of health and social care reform to support the core elements of personhood among people with dementia.

Amidst population ageing trends and epidemiological transitions, there has been a growing emergence of young family caregivers, about whom most studies have been conducted in Western countries. Their subjective experiences and perceptions toward caregiving remain underexplored in Asia. This qualitative study explored the lived experiences of caregiving for older family members by young caregivers in Singapore. Interpretative phenomenological analysis was employed to collect and analyse data from semi-structured, in-depth interviews with six young adult caregivers aged between 23 and 29. Interviews were supplemented with photo-elicitation techniques to deepen interview discussions and uncover experiential significance. Findings illustrated transitions into caregiving, challenges across role conflicts and expectations amidst developmental tasks and transitions, and navigation of intergenerational conflicts and ambivalence. Although no definitive conclusions can be reached from this small-scale study, the findings offer important insights into the convergence and intensity of young caregivers’ experiences. Given that caregiving challenges are likely to continue amidst Singapore’s rapidly ageing population, these necessitate further in-depth research efforts. Implications for policy and practice across multiple stakeholders interfacing with youth and older adults are presented. A whole-of-society approach is called for to enable young caregivers to realise their full potential while contributing to their ageing families and nation.

Caregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers. This study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants. In response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators. There are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage.

This meta-analysis examined the prevalence of depression and burden among informal care-givers of people with dementia (PwD) and compared the prevalence of depression between male and female, and spousal and non-spousal, care-givers. The quality of studies was evaluated and moderator variables explored. A search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science and ProQuest) was conducted from the first available date to the 31 October 2017. Inclusion criteria involved observational studies on the prevalence of burden or depression among informal care-givers of PwD. Forty-three studies were examined with a total of 16,911 participants. The adjusted pooled prevalence of depression was 31.24 per cent (95% confidence interval (CI) = 27.70, 35.01) and burden was 49.26 per cent (95% CI = 37.15, 61.46), although heterogeneity among prevalence estimates was high. Depression prevalence estimates differed according to the instrument used and the continent where the study was conducted. The odds of having depression were almost one and a half times higher in female compared to male care-givers. No significant difference was observed between spouses and non-spouses. Most studies had a medium risk of bias. Results suggest a great need within this population for interventions that are effective at reducing burden and depressive symptoms. It therefore appears imperative for dementia services that are not providing such interventions to do so.

Caring for an ill or disabled relative can present significant challenges that may exceed the personal resources of the caregiver. Young carers (YCs) often take on this role, providing support to family members or friends, which can have far-reaching effects on various aspects of their lives. This study involved 235 adolescents, 106 YCs, and 129 non-carers (NCs), who completed questionnaires assessing life satisfaction, satisfaction with social support, family functioning, academic functioning, and caregiving activities. Tests of group differences (MANOVA and MANCOVA controlling for age) showed YCs had more caregiving activities than NCs (as expected) and, critically, significantly lower life satisfaction. Hierarchical regressions with the YCS subsample showed academic functioning, social support, and the negative impact of caregiving were associated with life satisfaction, and that the negative influence of caregiving was linked to family functioning and the quantity of caregiving activities. For NCs, academic functioning, satisfaction with social support, and family functioning were associated with life satisfaction. In conclusion, caregiving in adolescents appears to be linked to lower life satisfaction, but this effect is determined by their social support, academic functioning, and negative impact of caring, which in turn depends on their family functioning and amount of caring activities.