Young informal carers (YICs) are non-professional young individuals providing care and support in various forms, usually to immediate family members, afflicted from a diverse range of both long- and ...short-term health conditions. Although there is significant knowledge about the information needs of adult carers in general, information needs and information seeking characteristics of the YICs’ community are understudied and are different. This study aims to identify the information needs of YICs communicated over the Internet and understanding their information seeking characteristics through a three-stage qualitative content analysis of posts written by YICs on two notable Internet forums. The analysis of 323 posts dated between March 2010 and April 2019 finds YICs’ needs are categorised by two types of online expression of needs, situational and information. Situational needs are illustrations of current difficult conditions and information needs are direct requests for information. Under situational and information needs, we identify four types of needs expressed: personal and professional growth, health (self and caree), finance and relationships. In addition, the findings indicate 94.36% posts in the sample as situational needs, which depict the uncertainty experienced by YICs under caring circumstances. The findings can assist government organisations and charities by improving the indexing of advice pages of their websites appropriate to the YICs’ search words, better availability of information and advertising, in addition to building quality mobile applications or digital support tools.
•Living with dementia or severe mental illness is associated with social exclusion.•Caring for someone with these health conditions may also result in social exclusion.•Few studies have investigated ...social exclusion in these informal carers.•The review found that carer social exclusion and wellbeing are seldom investigated.•However, carers may experience stigma, financial difficulties and social isolation.
Social exclusion has a negative impact on quality of life. People living with dementia or mental health disorders as well as informal carers have been separately described as socially excluded. The objective of this systematic narrative review was to examine the extent to which social exclusion experienced by adult informal carers of people living with dementia or severe mental health disorders has been identified and described in research literature. It synthesised qualitative and quantitative evidence and included the perspectives of carers themselves and of professionals. Eight electronic databases (1997–2017) were searched. Five relevant studies published between 2010 and 2016 were identified. All were qualitative and used interviews and focus groups. Study quality was variable and most were European. Two focused on carers of people living with dementia and three on carers of people with mental health disorders. Four investigated carers’ perspectives and experiences of social exclusion directly (total of 137 carer participants, predominantly parents, spouses and adult children), while the fifth focused on the perceptions of 65 participants working in health and social care. Stigma, financial difficulties and social isolation were highlighted in four studies and the challenges for carers in engaging in leisure activities were described in the fifth. Most conceptualised social exclusion as a form of stigma, or as resulting from stigma. One presented social exclusion as an element of carer burden. Two explicitly discussed the negative effects of social exclusion on carers. The dearth of research and the lack of specificity about social exclusion in carers was surprising. Future research should investigate aspects of social exclusion that may adversely affect carer wellbeing.
This study examines factors related to sleep disturbances, and the dyadic sleep relationship, in a convenience sample of 29 persons with Parkinson disease (PD) and spouse carer dyads living in ...regional Queensland. Carers completed questionnaires on sleep, depression, anxiety, carer burden, and well-being. Regarding carers, 66% reported sleep disturbances related to nocturnally care demands. Less than half of informal carers with a disturbed sleep had informed a health professional of this problem. Medication was the most commonly advised sleep intervention (44%). Sleep disturbances in informal carers correlated with increasing carer burden, depression scores, anxiety scores, poor quality of life, negative cognitions related to their sleep disturbance, and poor sleep hygiene. Regarding patient-carer dyads, 59% reported both the individuals having problematic sleep disturbances. Patient sleep disturbance correlated with informal carer increase in depression and anxiety scores, and poor carer burden. Informal carer’s sleep disturbance correlated with patient anxiety scores and severity of complications from PD therapy. Evidence-based sleep interventions addressing such dyads in rural areas warrant future study.
To identify the themes to inform the content of a new generic measure, the EQ-HWB (EQ Health and Wellbeing), that can be used in economic evaluation across health, social care, and public health, ...based on the views of users and beneficiaries of these services including informal carers.
A qualitative review was undertaken. Systematic and citation searches were undertaken focusing on qualitative evidence of the impact on quality of life from reviews for selected health conditions, informal carers, social care users, and primary qualitative work used in the development of selected measures. A subset of studies was included in the review. Framework analysis and synthesis were undertaken based on a conceptual model.
A total of 42 reviews and 24 primary studies were selected for inclusion in the review. Extraction and synthesis resulted in 7 high-level themes (with subthemes): (1) feelings and emotions (sadness, anxiety, hope, frustration, safety, guilt/shame); (2) cognition (concentration, memory, confusion, thinking clearly); (3) self-identity (dignity/respect, self-esteem); (4) “coping, autonomy, and control” relationships; (5) social connections (loneliness, social engagement, stigma, support, friendship, belonging, burden); (6) physical sensations (pain, discomfort, sleep, fatigue); and (7) activity (self-care, meaningful activities, mobility, communication, hearing, vision). Apart from physical sensations, most of the other themes and subthemes were relevant across both health and social care, including for informal carers.
The findings from this broad review identified themes that go beyond health and that are relevant to patients, informal carers, and social care users. The themes and subthemes informed the domains for the EQ-HWB.
•Generic measures for use in economic evaluation are focused on specific aspects such as health or social care limiting their use across health and social care.•This article explored the views of the beneficiaries of interventions to inform a new broader generic measure of health and well-being. Seven broad themes relevant to the quality of life of patients, social care users, and informal carers were identified.•Themes included health and broader outcomes such as self-identity and autonomy. The findings were useful for informing the development of EQ-Health and Wellbeing.
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.
Providing a rural example of the interconnection between aging, emotion, time and place, this paper explores the intimate experiences of loss as older adults move into long-term care settings. ...Drawing on findings from a qualitative case study of transitions in care in rural Canada, we demonstrate the spatial and temporal dimensions of the experiences of older adults and their carers. In so doing, we highlight the benefits of embracing emotional geographies of care as a new lens in transitions in care research and outline emergent questions for research, policy and practice that will enhance knowledge in the field.
•There is a gap in spatial and temporal understandings of loss in later life.•Emotional geographies of care consider rural age-related loss over time and place.•This new approach will uncover key insights into research, policy and practice.
Background
Dementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a ...conceptual framework for the Quality of Life (QOL) of family carers of people with dementia.
Methods
We studied family carers of people with dementia and staff working in dementia services iteratively using in‐depth individual qualitative interviews and focus groups discussions. Analysis used constant comparison techniques underpinned by a collaborative approach with a study‐specific advisory group of family carers.
Results
We completed 41 individual interviews with 32 family carers and nine staff and two focus groups with six family carers and five staff. From the analysis, we identified 12 themes that influenced carer QOL. These were organised into three categories focussing on person with dementia, carer, and external environment.
Conclusions
For carers of people with dementia, the QOL construct was found to include condition‐specific domains which are not routinely considered in generic assessment of QOL. This has implications for researchers, policy makers, and service providers in addressing and measuring QOL in family carers of people with dementia.
The aim of this study was to explore how formal social support changed after implementation of the COVID-19 public health measures and how these restrictions affected people living with dementia and ...their informal carers in Australia. Sixteen informal carers and two people living with dementia were interviewed between August and November 2020. Participants were asked about their experiences of the pandemic and the impact that the restrictions had on their lives and care. Thematic analysis identified four overarching themes describing (a) prepandemic limitations of the aged care system, (b) the aged care system’s response to the COVID-19 restrictions, (c) changes affecting informal carers, and (d) the challenges faced by people living with dementia. The findings highlighted the challenges faced by the Australian aged care system before the pandemic and the additional burden placed on informal carers who supported people living with dementia across residential and home settings during the pandemic.
Unpaid caregivers have faced and dealt with additional challenges during the COVID-19 pandemic. Understanding the psychological processes associated with their resilience is warranted. The objective ...of this study was to examine the associations between resilience with mental distress, emotion regulation strategies (i.e., reappraisal and suppression) and interpretation bias in adult caregivers.
Participants were living in the UK, aged 18+, and consisted of 182 unpaid caregivers of an adult aged 18+ living with a long-term health condition, and 120 non-caregivers. Data were collected in an online study during the first national UK COVID-19 lockdown (May and September 2020). Hierarchical multiple regression analyses explored whether emotion regulation strategies and interpretation bias explained unique variance in levels of resilience in caregivers whilst controlling for anxiety and depression.
Compared to non-caregivers, caregivers reported higher levels of anxiety, depression, negative interpretation bias and lower levels of resilience. Emotion regulation strategies did not differ between groups. Within caregivers, greater resilience was associated with lower mood disturbance, a positive interpretation bias, and greater use of cognitive reappraisal and lower use of suppression strategies to regulate emotions. Emotion regulation and interpretation bias together predicted an additional 15% of variance in current levels of resilience.
Our findings indicate that psychological mechanisms such as emotion regulation strategies, particularly reappraisal, and interpretation bias are associated with resilience in caregivers. Although preliminary, our findings speak to exciting clinical possibilities that could form the target of interventions to improve resilience and lower mental distress in unpaid caregivers.
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