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Caring for a child with intellectual disabilities can be a very rewarding but demanding experience. Research in this area has primarily focused on mothers, with relatively little attention given to the mental health of fathers.
The purpose of this review was to summarise the evidence related to the mental health of fathers compared with mothers, and with fathers in the general population.
A meta-analysis was undertaken of all studies published by 1 July 2018 in Medline, PsycINFO, CINAHL and EMBASE, using terms on intellectual disabilities, mental health and father carers. Papers were selected based on pre-defined inclusion and exclusion criteria.
Of 5544 results, 20 studies met the inclusion criteria and 12 had appropriate data for meta-analysis. For comparisons of fathers with mothers, mothers were significantly more likely to have poor general mental health and well-being (standardised mean difference (SMD) −0.38, 95% CI −0.56 to −0.20), as well as higher levels of depression (SMD, −0.46; 95% CI −0.68 to −0.24), stress (SMD, −0.32; 95% CI −0.46 to −0.19) and anxiety (SMD, −0.30; 95% CI −0.50 to −0.10).
There is a significant difference between the mental health of father and mother carers, with fathers less likely to exhibit poor mental health. However, this is based on a small number of studies. More data is needed to determine whether the general mental health and anxiety of father carers of a child with intellectual disabilities differs from fathers in the general population.
This paper explores telecare manager and other ‘stakeholder’ perspectives on the nature, extent and impact of family and other unpaid/informal carers’ involvement in the provision of telecare equipment and services for older people. Data used in the paper are derived from a larger study on telecare provision by local councils in England. The paper aims to add to the growing evidence about carers’ engagement with electronic assistive technology and telecare, and considers this in the context of typologies of professionals’ engagement with carers. How carers are involved in telecare provision is examined primarily from the perspectives of senior managers responsible for telecare services who responded to an online survey and/or were interviewed in 2016 as part of a wider study. The perspectives of three unpaid carers were captured in a separate strand of the main study, which comprised more detailed case study interviews within four selected councils. Thematic and comparative analysis of both qualitative and quantitative survey data revealed the varied involvements and responsibilities that carers assumed during the telecare provision process, the barriers that they needed to overcome and their integration in local council strategies. Findings are discussed in the context of Twigg and Atkin's typology of carer support. They suggest that carers are mainly perceived as ‘resources’ and involvement is largely taken for granted. There are instances in which carers can be seen as ‘co-workers’: this is mainly around responding to alerts generated by the telecare user or by monitored devices, but only in those councils that fund response services. Though some participants felt that telecare devices could replace or ‘supersede’ hands-on care that involved routine monitoring of health and wellbeing, it was also acknowledged that its use might also place new responsibilities on carers. Furthermore, the study found that meeting carers’ own rights as ‘co-clients’ was little acknowledged.
Intellectual disability and autism spectrum disorder (ASD) influence the interactions of a person with their environment and generate economic and socioeconomic costs for the person, their family and society.
To estimate costs of lost workforce participation due to informal caring for people with intellectual disability or autism spectrum disorders by estimating lost income to individuals, lost taxation payments to federal government and increased welfare payments.
We used a microsimulation model based on the Australian Bureau of Statistics' Surveys of Disability, Ageing and Carers (population surveys of people aged 15–64), and projected costs of caring from 2015 in 5-year intervals to 2030.
The model estimated that informal carers of people with intellectual disability and/or ASD in Australia had aggregated lost income of AU$310 million, lost taxation of AU$100 million and increased welfare payments of AU$204 million in 2015. These are projected to increase to AU$432 million, AU$129 million and AU$254 million for income, taxation, and welfare respectively by 2030. The income gap of carers for people with intellectual disability and/or ASD is estimated to increase by 2030, meaning more financial stress for carers.
Informal carers of people with intellectual disability and/or ASD experience significant loss of income, leading to increased welfare payments and reduced taxation revenue for governments; these are all projected to increase. Strategic policies supporting informal carers wishing to return to work could improve the financial and psychological impact of having a family member with intellectual disability and/or ASD.
Timely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.
To conceptualize a “good end of life” for people with dementia from the perspectives of bereaved family caregivers in Japan.
Design and participants:
A qualitative study using in-depth, semi-structured interviews focused on the family caregivers’ perceptions of their loved one’s experiences. Family caregivers who had lost their relatives with dementia more than six months previously were recruited using maximum variation sampling by cultural subpopulation. A thematic analysis was conducted.
From 30 interviews held, four main themes emerged. A good end of life for people with dementia means experiencing a “Peaceful Death” while “Maintaining Personhood” at a “Preferred Place” allowing for feelings of “Life Satisfaction.” A “Preferred Place” emerged as a basic requirement to achieving a good end of life according to the three other themes, in particular, “Maintaining Personhood.” However, the interviewees experienced difficulties in ensuring that their loved ones stayed at a “Preferred Place.”
Despite different cultural backgrounds, perceptions of a good end of life with dementia were remarkably similar between Japan and Western countries. However, recent societal changes in family structures and long-term care access in Japan may explain the theme of a comfortable place taking a central position. We suggest that these themes be considered and translated into care goals. They could supplement established end-of-life care goals for quality of life in dementia, which aim to maximize functioning and increase comfort.
TRIAL REGISTRATION NUMBER
Ethics Committee of the Graduate School and Faculty of Medicine, Kyoto University (R0808-2)
Providing care for an older family member is a common experience for women and has been linked with increased depression, anxiety, and stress for some caregivers. This study aimed to investigate the role of self-reassurance and self-efficacy for controlling upsetting thoughts in mitigating the negative effects of caregiving stressors on mental health.
Measures were collected during a pre-intervention assessment for a larger study in the U.S.A. evaluating online interventions for intergenerational caregivers. Hierarchical linear regressions were used to examine the contribution of self-reassurance and self-efficacy for controlling upsetting thoughts on mental health outcomes, after controlling for caregiving-related contextual variables and stressors.
Participants completed online questionnaires on a computer or tablet at their convenience.
Participants were 150 help-seeking adult women providing health-care assistance to older relatives living in the community.
Measures were completed for the mental health outcomes of depression, anxiety, and stress. Measures also included contextual factors of caregiving and demographics. Cognitive impairment, caregiver assistance, role overload, percentage of care provided, family conflict, self-reassurance, and self-efficacy for controlling upsetting thoughts were also measured.
Regression models revealed that both self-reassurance and self-efficacy for controlling upsetting thoughts predicted depression, anxiety, and perceived stress after controlling for caregiving contextual factors and stressors.
The results indicate that self-reassurance and self-efficacy for controlling upsetting thoughts are effective resources linked to mental health outcomes. Although results were obtained with cross-sectional data, these findings suggest the potential of targeting these resources in transdiagnostic interventions for family caregivers.
To follow-up a cohort of older people who self-harmed, their carer, and general practitioner (GP) and examine their reflections on the self-harm, care experiences, and outcomes.
Qualitative in-depth interviews.
Two teaching hospitals and associated community services.
Twelve-month follow-up of participants aged 80 or older who self-harmed, their nominated carers, and GPs.
A geriatric psychiatrist gathered data through patient and carer interviews using a narrative inquiry approach and from medical records. Interviews were audio recorded and transcribed. N-VIVO facilitated data organization for thematic analysis. Questionnaires sent to the patient’s GP examined their perspectives and aspects of care relating to the self-harm.
Nineteen patients (63% baseline sample), 29 carers (90.6%), and 11 GPs (36.7%) were available at follow-up. Themes emerging from patients were “denial and secrets;” “endless suffering;” “more invalidation;” “being heard;” and “miserable in care.” Themes from carer interviews were “denial and secrets;” “patient’s persistent wish to die;” “abandonment by clinicians;” “unending burden for the carer;” and “distress regarding placement.” General practitioner themes were “the problem is fixed;” “the troops have arrived;” and “I understand.”
Factors contributing to self-harm persisted at follow-up. Positive and negative responses were identified in the older person’s system, highlighting areas for potential intervention. A conceptual framework for understanding self-harm in the very old was derived that emphasized the importance of understanding individual needs, the interpersonal context of the older person, and carer burden. Interventions should improve communication, facilitate shared understanding of perspectives, and provide support at all levels.
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.
While the burden of caring for people living with dementia has been well documented, considerably less is known about how carers transition into post-care life. This study aimed to understand the experiences of primary family care-givers of people with dementia after the person with dementia has died. A specific focus of the research was understanding the barriers to transitioning into a positive post-care life, and facilitators that help sustain carers as they move forward after their care journey has ended. A qualitative exploratory, descriptive study was undertaken with nine primary carers for a family member who died with dementia (five spouses and four adult children). Semi-structured face-to-face or telephone interviews were conducted with carers between July and August 2016. Interview transcripts were analysed using a thematic approach. A number of factors that can act as barriers or facilitators to transition for carers were identified. Contextualising loss, restructuring identity, psychological health issues and the influence of social attitudes seemed to have a strong influence on carer outcomes. The findings highlight the need for further systematic social and informational support for carers to moderate post-care trajectories and improve carer transition.
Frontotemporal lobar degeneration (FTLD) is the second-most common cause of young-onset dementia. Personality and behavior changes lead to high caregiver stress and burden, but little support is available. Our aim is to present the evidence on the characteristics, challenges and unmet needs of caregivers as well as on possible interventions.
We conducted a scoping review on caregiver burden using PubMed, Web of Science and ScienceDirect. A total of 69 articles were considered eligible and were analyzed in the present study.
Through the analysis of 69 empirical articles, our results show that caregivers of patients with FTLD are often younger in age, have children and find behavioral disturbances to be the most burdensome. Nine studies assessed the needs of and support for caregivers. Ten studies compared the burden in different forms of FTLD, 19 compared FTLD to other types of dementia, and one compared the caregiver burden between two countries. Eight studies reported on interventions for caregivers or interventions taking burden into account. One study assessed the support structure for caregivers of FTLD patients. Five case reports, eight research overviews and three reviews addressed specific needs and challenges.
Further research should reproduce and validate efficacious interventions and focus on underage children of FTLD patients and findings from non-Western countries. Additionally, support structures for FTLD caregivers should be assessed and extended. Awareness both in the wider population and among healthcare professionals is an urgent need for the future.
First-episode psychosis (FEP) is a major life event and can have an adverse impact on the diagnosed individual and their families. The importance of intervening early and providing optimal treatments is widely acknowledged. In comparison to patient groups, literature is scarce on identifying treatment predictors and moderators of caregiver outcomes. This study aimed to identify pre-treatment characteristics predicting and/or moderating carer outcomes, based on data from a multi-element psychosocial intervention to FEP patients and carers (GET-UP PIANO trial).
Carer demography, type of family relationship, patient contact hours, pre-treatment carer burden, patient perceptions of parental caregiving and expressed emotion (EE) were selected, a priori, as potential predictors/moderators of carer burden and emotional distress at 9 months post treatment. Outcomes were analysed separately in mixed-effects random regression models.
Analyses were performed on 260 carers. Only patient perceptions of early maternal criticism predicted reports of lower carer burden at follow-up. However, multiple imputation analysis failed to confirm this result. For treatment moderators: higher levels of carer burden at baseline yielded greater reductions in carer emotional distress at follow-up in the experimental group compared with treatment as usual (TAU). Higher levels of perceived EE moderated greater reductions in carer reports of tension in experimental group, compared with TAU, at follow-up. In younger caregivers (<51 years old), there were greater reductions in levels of worry during the baseline to follow-up period, within the experimental group compared with TAU.
The study failed to identify significant treatment predictors of FEP carer outcomes. However, our preliminary findings suggest that optimal treatment outcomes for carers at first episode might be moderated by younger carer age, and carers reporting higher baseline levels of burden, and where patients perceive higher levels of negative effect from caregivers.
The paper focuses on temporal aspects of informal caring for older people. Limitations of large-scale surveys in capturing such data are noted and time-use methodology, despite its own limitations, is proposed as a promising alternative. Adopting a critical perspective on time that includes carers’ own conceptualisations, we report the findings of a qualitative study of carers’ time use. Sixty-two interviews with carers, male/female, co-resident/not co-resident, employed/not employed, and located across Great Britain were conducted. Analysis considered people's own diverse and ambiguous views of their care activities. Carers’ accounts of their time revealed non-linear experiences and a sense of being permanently on call. Interviewees often travelled distances to engage in support activities with or for older people. Changes over time were pervasive, increasing or reducing care requirements. Unanticipated events could precipitate radical changes in time use. Managing time, exercising temporal agency, was particularly apparent in accounts of care, employment, other family responsibilities and choices about friendship. Measurement of carers’ time use which draws on the conceptual foundation of carers’ own perspectives on time may provide more effective quantitative understanding of the temporal aspects of caring. It should not pre-define time, must grasp a variety of tasks, take account of intermittent activity, incorporate the 24–7 experience of many carers and demonstrate how caring time interacts with other time.
The National Institute for Health and Care Excellence recommends involving the families of patients admitted to psychiatric hospital care, without specific guidance on how to do it. To improve family involvement in a National Health Service psychiatric intensive care unit, a relatives' and carers' clinic was set up. Fifty family members attended and completed questionnaires. Nine went on to take part in interviews, the results of which were analysed using thematic analysis.
Families felt more informed and found the increased access to information useful. They felt that the process showed respect for them and their family member, and that their contribution was valued. Running throughout the interviews was the contrast with previous experiences; families reported feeling heard and understood and attributed this in part to timing and environment.
The clinic was viewed positively by families and met the trust's commitment to including carers, as well as national guidance which suggests it should be part of routine practice.
To understand the experience of companions of patients seen in the emergency department by liaison psychiatry teams. Participants were recruited via purposive sampling following a recent visit to the emergency department of an inner- or outer-London hospital. Semi-structured interviews were administered to all participants.
Two major themes were generated. The first concerned the appropriateness of the clinical space, in which ‘noise’, ‘privacy’ and the ‘waiting area’ were subthemes. The second was communication with staff, including subthemes of ‘wanting more information’ and a ‘desire to be more involved’.
Liaison psychiatry services should consider appropriateness of the clinical space, promoting improved communication between staff and patients' companions, and a review of the information provided to companions in the emergency department. This research offers a novel perspective on liaison psychiatry and will enhance current understanding and clinical practice.
In light of current pressures within formal social care services, informal carers assume an important role in meeting the care needs of a growing number of older people. Research suggests relationships between care-giving and health are complex and not yet fully understood. Recently, wide-ranging associations between sleep and health have been identified, however, our understanding of the links between care-giving and sleep is limited at present. This study assesses longitudinal patterns in co-resident care-giving and problematic sleep among older people in the United Kingdom. Our sample included 2,470 adults aged 65 years and older from the UK Household Longitudinal Study. Problematic sleep was defined as two or more problems in going to sleep, staying asleep or sleep quality. Using logistic regression models, we assessed how co-resident care-giving status, intensity and transitions influence the likelihood of problematic sleep in the following year, adjusting for potential confounding factors. Adjusted analyses found co-resident care-givers were 1.49 (95% confidence interval = 1.06–2.08) times more likely to report problematic sleep in the following year, relative to those not providing care. Care-giving over 20 hours per week and continuous co-resident care-giving also significantly increased the odds of problematic sleep. This suggests older co-resident care-givers may be at greater risk of incurring sleep problems than non-care-givers. Further longitudinal research is needed to investigate care-giver-specific consequences of poor sleep.
Perspectives of young people with eating disorders and their parents on helpful aspects of care should be incorporated into evidence-based practice and service design, but data are limited.
To explore patient and parent perspectives on positive and negative aspects of care for young people with eating disorders.
Six online focus groups with 19 young people aged 16–25 years with existing or past eating disorders and 11 parents.
Thematic analysis identified three key themes: the need to (a) shift from a weight-focused to a more holistic, individualised and consistent care approach, with a better balance in targeting psychological and physical problems from an early stage; (b) improve professionals' knowledge and attitude towards patients and their families at all levels of care from primary to ‘truly specialist’; (c) enhance peer and family support.
Young people and parents identified an array of limitations in approaches to care for young people with eating disorders and raised the need for change, particularly a move away from a primarily weight-focused treatment and a stronger emphasis on psychological needs and individualised care.
There is a need to improve dementia education to prepare future generations of healthcare professionals to deal with the increasing challenges they will face. Time for Dementia is an innovative undergraduate education program for medical, nursing, and paramedic students in the south of England. Success of the program is dependent upon the participation of families (people with dementia and their carers). This qualitative study seeks to explore the motivation and experiences of the families taking part in the program.
A topic guide was developed to understand factors influencing motivation and retention. A purposeful sample of participant families, who had at least 12 months of involvement in the program, were selected from a cohort of 282 families and were invited to take part in an in-depth qualitative interview. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. This was subsequently refined in an on-going process of analysis aided by the use of Nvivo 11. Interviewing stopped when thematic saturation was reached.
Eighteen families took part in an in-depth qualitative interviews. Four themes were identified from the analysis. These themes were motivators, value to family, value to the person with dementia, and student factors.
This study identifies underpinning factors that motivate families to join dementia education programs and the impact of such programs upon them. We found that engagement in such programs can have therapeutic benefits to participants, and do not cause harm. These findings can be used to strengthen recruitment and enhance family involvement in similar programs.