Mesothelioma is an incurable, asbestos related cancer with a poor prognosis. Little is known about how patients and carers living with the condition manage their mental health and wellbeing needs. ...This paper reports findings on interventions being used by patients and informal carers living with mesothelioma and those which they find most helpful.
In-depth interviews with patients (n = 10) and (informal) carers (n = 11) living with mesothelioma in the UK. We analysed our data inductively using a reflexive thematic analysis approach.
Participants described the importance of both smaller and larger actions and strategies which helped with their mental health. This included spending more time with family and friends and going on holidays. Professionals who participants said supported their mental health journey included not only specialist nurses and mental health professionals but also legal and Asbestos Support Group professionals. The latter demonstrates the unique needs and support required for this population. Exposure to asbestos as the cause of mesothelioma, has led to a social justice aspect of the experience of living with this cancer. Participants reported the importance of collective action to their mental health and wellbeing. The data indicate that patients and carers may have distinct mental health and wellbeing requirements and need to manage these in different ways at different times.
Findings have implications for nurses and other key professionals working in healthcare, community and legal settings supporting this client group, and for those living with mesothelioma who want to understand ways to enhance their own wellbeing.
•Both smaller and larger actions are of importance to mental health and wellbeing.•Patients and carers may have distinct mental health and wellbeing requirements.•Nurses provide direct and signposting support for mental health.•Mental health, Asbestos Support Group and legal professionals also provide support.•Social justice elements are pertinent in a mental health and mesothelioma context.
Abstract Introduction Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of ...people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Methods Searches on terms including “carers,” “dementia,” “family,” and “quality of life” in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes. Results A total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies ( n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer–patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future. Discussion The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it.
The study investigated the self-assessed mental and general health status of informal carers in Australia. It evaluated the influence of carer's health behaviours, namely physical activity, smoking ...and drinking status, along with their social connectedness and workforce engagement on their health status.
The study used a retrospective longitudinal design using data from the Household Income and Labour Dynamics of Australia survey, waves 5-15 (2005-2015). It included individuals aged 15 years and older from Australian households surveyed over a period of 11 years. The sample consisted of 23,251 individuals. The outcome measures included: mental health, general health and physical functioning domains of the Short Form 36 Questionnaire, a widely used multi-dimensional measure of health-related quality of life. Using fixed effects regression and following individuals over time, the analysis took care of the issue of individuals self-selecting themselves as carers due to some predisposing factors such as age, poor health, socioeconomic status and sedentary behaviour.
There were statistically significant carer-noncarer status differences in mental (Beta = - 0.587, p = 0.003) and general health (Beta = - 0.670, p = 0.001) outcomes. Aging had a modifying impact on carers' mental and general health outcomes. Older carers coped better with their caregiving responsibilities than younger ones. Moreover, while physical activities had a positive influence on both mental and general health for non-carers, with more activities generating better health outcomes, it only had a modifying impact on carers' mental health. Furthermore, the study found that moderate levels of social drinking had beneficial modifying impact on carers' mental and general health.
This study added value to the literature on informal carers' mental and general health in Australia by identifying some of the protective and risk factors. The study found the modifying effects of carers' age, health behaviours such as physical activity, smoking and drinking status on their health. Finally, the study identified an apparent beneficial link between moderate levels of social drinking and carer health that needs to be further explored with more targeted future research.
Successive interventions designed to curb the spread of COVID-19 have all served to exacerbate the demands placed upon informal carers, a population indispensable to health care systems. The need for ...breaks from caring has never been so pronounced. This paper adopts, and extends, the theory of hierarchical leisure constraints to better understand barriers to tourism respite participation. Lived experiences are collected via story-telling techniques (n = 157) from carers taking trips of one night or more away during times of palliative and end-of-life care. Three cross-cutting constraints are emergent in the data: awareness (knowing); access (doing); and anxiety (feeling). Negotiation strategies are suggested, hierarchical implications questioned and the opportunity to explore a temporal dimension to tourism constraints in future research signalled.
An extension to constraints negotiation theory: respite care. Display omitted
•COVID-19 has exacerbated the demands placed upon informal carers.•Awareness, access and anxiety limit carer participation in respite breaks•Tourism offers salutogenic benefits at a time of critical need.•Pathographies, stories of illness, offer tourism insights too
Context: With reduced access to medical and social support during the COVID-19 pandemic, the level of support provided by unpaid carers over the lockdown period in the UK was higher than ever. ...However, the experience of unpaid carers during this period is often overlooked. Objective: The aim of this study was to explore the question ‘what has been the experience of unpaid carers during lockdown?’. Method: Eighteen unpaid carers, caring for a family member(s) with physical, learning, mental health, or behavioral disabilities, were interviewed about their experience of lockdown in the UK. Thematic analysis was utilized. Findings: Three overarching themes created: (a) The value of support, (b) Non-stop care, and (c) Risk to health. A central theme of mental health was also created and discussed across the three overarching themes, rather than individually, due to its extensivity. Support for unpaid carers during the lockdown became more important than ever due to the higher risk to physical and mental health (of both the carer and dependent) and the lack of respite available. Limitations: Due to volunteer sampling, the evidence in this report is largely based on the perspectives of female carers’, with all but two participants being female. Implications: Findings raise implications for prioritizing the return of in-person medical appointments post-pandemic and ensuring the continuation of support services for unpaid carers during a pandemic.
The shift to consumer-directed aged care means that older adults need to play a more active role in navigating the complex aged care system for adequate health and social services. Challenges in the ...navigation process result in unmet needs and difficulty accessing available resources. This scoping review investigates how aged care navigation is conceptualized in literature and interrogates research on the experiences of older adults navigating community-based aged care services with or without support from their informal carers.
This review follows the Joanna Briggs Institute methodological guidelines. PubMed, Scopus, and ProQuest were searched for relevant literature published from 2008 to 2021, supplemented by grey literature and manual reference list searching. Data were extracted using a predefined data-extraction table and synthesized with an inductive thematic analysis.
The current conceptualization of aged care navigation focuses on the support provided to older adults, rather than actions taken by older adults themselves. Thematic analysis from the included studies (n = 26) revealed shared themes (lack of knowledge, social networks as information providers, complex care systems) among older adults and informal carers; unique challenges faced by older adults (difficulties with technology, waiting game), and informal carers (structural burden) in aged care navigation.
Findings suggest the need to comprehensively assess individual circumstances including social networks and access to informal carers as predictors of successful navigation. Changes that reduce the complexity of the aged care system and improve coordination will relieve the structural burden experienced by consumers.
•This paper adds to what is known about the support needs of older carers.•Older carers’ experiences may be particularly challenging.•These carers’ ambivalence about requesting support may compound ...their difficulties.•Loneliness and anxiety about their loved ones’ future care were highlighted.•Their specific support needs require recognition by those working with older carers.
Older informal carers play a vital, growing role in supporting others with long-term health conditions but their support needs and experiences are poorly understood. The aim of this study was to explore the perceptions of volunteers and professionals of the experiences and support needs of older carers (aged 70+ years).
Thirty-five volunteers and professionals working with older carers in the voluntary and statutory sectors participated in a series of focus groups in outer London, United Kingdom. Groups were audio recorded, transcribed and subjected to thematic analysis.
Five main themes were identified. These included participants’ perceptions of older carers’ ambivalence about asking for support, their multiple losses, often restricted lives, social isolation and loneliness and concerns for their loved ones when they can no longer care. Overall, these themes are similar to those reported for adult carers in general but older carers’ experiences were regarded as more challenging primarily because of their pride, attitudes to caring and because of their age, their own health was often declining making the physical aspects of caring and leaving their homes more difficult. Concerns about the future are thought to be particularly important for older carers of adult children with disabilities because they expect to be outlived by their children, although similar concerns were voiced by spouses of partners living with dementia.
Professionals and volunteers need to consider these additional challenges for older carers. Support with accessing services, for example from the voluntary sector, is important as is future exploration of how to support older carers in planning for the future care for their loved ones is needed.
Abstract
Background
There is a strong imperative to support people with dementia to live independently in their homes for as long as possible. A starting point is to understand how they manage ...medications on a daily basis.
Aim
To understand how people with dementia and their informal carers manage medications within the home setting to inform the identification of opportunities to improve medication management.
Methods
A qualitative study using the Functional Resonance Analysis Method (FRAM). Interview data with people with dementia and informal carers were analysed to (i) Identify and describe key functions, (ii) identify and describe variability in performing key functions, and its potential consequences and (iii) map performance variability to Resilient Healthcare capacities.
Results and discussion
A FRAM model was developed and consisted of 14 interdependent key functions. The interdependent nature of functions, and the different nature and sources of variability in how each key function was performed highlighted the level of complexity of the medication management system within the home setting. The medication system was managed almost entirely by the person with dementia and/or their informal carers. This shows the lack of system-level controls to support the safe functioning of the medication management system in the home setting.
Conclusion
Future work will develop a comprehensive FRAM model that includes the perspectives of health and social care professionals and those from the third sectors to underpin the development of a range of system recommendations to strengthen resilience in the medication management system within the home setting.
Abstract Background and purpose The caregiving’s impact on informal carers’ quality of life and gender-based stereotypes make older individuals’ informal care a complex process for which our ...knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers’ experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020. Design and methods The systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework. Results This review produced two analytical themes, the impact of gender on the caregivers’ labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers’ experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers’ healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers’ negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men’s and women’s mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role. Conclusion and implications Transgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people’s care.
In China, the risk of stroke is higher than that in developed countries such as Europe and North America. Informal caregivers play a major role in providing support to stroke survivors. Currently, ...only limited studies on changes in psychological state of the caregivers at different stages of stroke have been published.
To investigate the stress and psychological state of informal caregivers of stroke patients in different periods and to explore the factors that affect their states.
202 informal caregivers of stroke patients were selected in a 3a-grade hospital in Chengdu, Sichuan. Follow-up was conducted by face-to-face interviews, telephone calls, or home visits on days 3, 2 months, and 1 year after onset. We investigated the basic information about the caregivers, including their anxiety, depression and social support conditions. We analyzed the pressure and psychological conditions of informal caregivers at different stages of stroke and analyzed its influencing factors. The data were displayed by the number and percentage of the cases; the continuous variables were described by means and standard deviation. In addition, the data were compared by Pearson correlation analysis and logistic regression analysis.
(1) Within 3 days after the onset of stroke, the informal caregivers had the highest stress, the most severe anxiety and depression, the heaviest burden, and the lowest score of medical-social support. Over time, the pressure and burden of the caregivers are gradually decreasing, anxiety and depression are increasing, and social support is also increasing. (2) The stress and psychological status of informal stroke caregivers are affected by multiple factors, including the caregiver's age, relationship with the patient, patient's age, and patient's physical conditions.
The stress and psychological status of informal caregivers varied in the different stages of stroke, and they were affected by several factors. Medical staff should pay attention to informal caregivers while providing care for patients. Relevant interventions may be developed based on the results to improve the health of informal caregivers and thus to promote the health of patients.
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