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.
To synthesise evidence about informal carers' (carers) experience of their support needs, facilitators and barriers regarding transitional care of older adults with multimorbidity.
Carers provide ...crucial support for older adults during care transitions. Although health practitioners are well positioned to support carers, system factors including limited healthcare resources can compromise the quality of care transitions.
Scoping review.
Searches were undertaken of the published literature. Five databases were searched including MEDLINE, CINAHL, EMBASE, PsycINFO and the Cochrane Library. Two reviewers independently screened articles to identify relevant studies. Studies were retrieved from January 2000 to July 2022. Data were extracted and tabulated for study characteristics, support needs, facilitators and barriers. Key themes and patterns were synthesised across the studies.
Eighteen studies including N = 3174 participants were retrieved. Most studies (n = 13) employed qualitative designs. Five studies used surveys. Carers reported their need to: be involved in coordinated discharge planning; advocate and be involved in decision-making; and receive community-based follow-up. Carers described facilitators and barriers in four themes: (1) relationships with the older adult and health practitioners, (2) being involved in coordinated discharge planning; (3) communication and information strategies; and (4) community-based follow-up. Synthesis of themes across all studies resulted in the identification of five areas of research: carers' health literacy; community-based care; carers' involvement in transitional care planning; inpatient and community health practitioners' communication skills; and culturally diverse carers' experiences.
The review highlights the importance of quality communication and relationships between carers, older adults, health practitioners and health organisations. Although information and education are important there is a need for further research to examine systems that support communication between carers, older adults and health practitioners and health literacy for all carers including culturally diverse carers.
Accessible summary
What is known on the subject?
People with severe mental illness (SMI) have high rates of physical illnesses, and carers are core partners in managing their physical health.
...Qualitative research on carers' views/experiences of physical health care is limited, and there is no published systematic review that synthesizes the current evidence.
What the paper adds to existing knowledge?
Carers' views from seven articles were synthesised into nine themes and six subthemes describing their perceived facilitators, barriers and roles regarding the physical health care of people with SMI.
Carers' voiced similar concerns to those previously identified by professionals and service users, particularly in relation to poor service access/responsiveness and communication difficulties with healthcare professionals.
What are the implications for practice?
Mental health nurses should be aware of the risk of diagnostic overshadowing and ensure they are both responsive and sensitive to carers concerns about the physical health of people with SMI.
It is essential for mental health nurses to actively involve carers in managing physical health, especially in formulating physical healthcare plans and providing clear practical advice/information.
Introduction
People with severe mental illness (SMI) have high rates of physical illnesses. Informal carers are core partners in addressing these issues, however research on their views/experiences is limited and there is no systematic review published on the topic.
Aim
This integrative thematic review explored the experiences and views of carers on physical health care in SMI by synthesizing the existing qualitative research findings.
Methods
Six databases were searched from 2000 to 2021. Data were extracted and synthesised using thematic integrative analysis. The quality of included studies was assessed with the JBI Critical Appraisal Checklist.
Results
Five studies were included. Nine themes were identified conceptualising carers' perceived facilitators, barriers and roles regarding physical health care for people with SMI.
Discussion
Carers felt that receiving practical help and a specialised role for mental health nurses would facilitate better physical health care. Lack of coordination/communication and poor service access/responsiveness were common barriers, often compounded by diagnostic overshadowing. Carers are involved in promoting healthy lifestyles, monitoring physical health and supporting access to services.
Implications for Practice
Mental health nurses should ensure they are responsive to carers' concerns and proactively support them to promote the physical health of people with SMI.
Young Adult Carers (YAC) are informal carers aged 18–25 years. This is an unrecognized population. The present systematic review aims to respond to: (1) how YAC are identified in research; (2) the ...prevalence of YAC; (3) the characteristics of YAC; and (4) how to support YAC. Five electronic databases (Google Scholar, PsycArticle, PsycInfo, Psychology and Behavioral Sciences Collection, and PubMed) were searched for studies, scientific articles, and gray literature on YAC published prior to January 18, 2021. The quality of included studies was assessed using the Crow Critical Appraisal Tool, and a narrative method was used to underline major findings. Twenty-three studies were included and revealed that there were several ways to identify YAC, resulting in heterogeneous prevalence. Nine themes were highlighted for YAC characteristics (way into caring; care receiver; caring responsibilities; amount of caring; self-identification as a carer; living arrangement; physical, psychological, and adaptative outcomes; interpersonal relationships; education and employment); and three for YAC support (needs, available support services, and recommendations). The findings showed the diversity of YAC experiences. Although YAC expressed several needs, there are few or no support services devoted to them. More research is needed to improve political awareness.
Systematic review registration
https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021231882
, identifier: CRD42021231882.
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.
The COVID‐19 pandemic has led to the closure or reduction in support services for family carers, resulting in increased social isolation and stress for this population. The current scoping review ...aimed to identify the impact of COVID‐19 upon carers and support provided for them during the pandemic. Four online databases (CINAHL, Medline, PsycINFO and PubMed) were systematically searched on 16th December 2020 and updated on 16th July 2021 for articles written in English and published after January 2020, focused on the carer and the impact of COVID‐19. Google scholar and reference lists of relevant papers were checked, and key authors were contacted for further relevant information. The database searches identified 976 citations, which resulted in 670 unique articles following the removal of duplicates. Title and screening identified 63 articles for full‐text review, 11 of which were subsequently excluded, leaving 52 articles which were subject to inductive thematic analysis. Four key themes were identified. Whilst a number of issues were identified that were exacerbated by the pandemic, others directly resulting from it were revealed. Few studies discussed support measures for carers and only one trial evaluated an intervention. This review identifies the impact of COVID‐19 on carers, but there is a dearth of evidence to inform appropriate tailored support. Governments need to identify carers as a priority group in social care reform and commission co‐produced, evidence and experience informed pathways to reinstate support services, potentially modelled on pandemic plans following the example currently being considered for the paid healthcare workforce.
Purpose of Review
In spite of recent advances in treatment, many people with multiple sclerosis (MS) require ongoing care and support. Informal caregivers can experience burden as a result of their ...role, with possible implications for quality of life (QOL). We review recent research examining MS caregiver experience to (1) understand current risk factors for caregiver burden and (2) identify possible strategies for increasing carer well-being.
Recent Findings
MS caregiver experience is highly variable and can be predicted by a variety of care recipient, caregiver and contextual factors. Burden is not the only characteristic associated with care, with positive consequences also reported. Emerging research suggests a number of ways in which carers can be better supported.
Summary
Identifying and meeting the needs of MS caregivers offers the best way of delivering tailored support. Future research should focus on the development of psychosocial supports, while acknowledging the needs of those caring for different MS patient populations.
This systematic review and meta-analysis aimed to determine the prevalence of loneliness and social isolation among informal carers of individuals with dementia and to identify potential influencing ...factors.
We conducted a comprehensive search across 10 electronic databases, including PubMed, Cochrane, Embase, Web of Science, PsycINFO, CINAHL, Scopus, Chinese Biomedical, China National Knowledge Internet, and WANFANG. Our search strategy covered the inception of the databases up to September 16, 2023, with an updated search conducted on March 8, 2024. Prevalence estimates of loneliness and social isolation, presented with 95% confidence intervals, were synthesized through meta-analysis. Subgroup analyses and meta-regression were employed to explore potential moderating variables and heterogeneity.
The study encompassed 27 research papers involving 11,134 informal carers from 17 different countries. The pooled prevalence of loneliness among informal carers of individuals with dementia was 50.8% (95% CI: 41.8%-59.8%), while the pooled prevalence of social isolation was 37.1% (95% CI: 26.7%-47.6%). Subgroup analyses and meta-regression indicated that various factors significantly influenced the prevalence of loneliness and social isolation. These factors included the caregiving setting, study design, the intensity of loneliness, geographical location (continent), data collection time, and the choice of assessment tools.
This study underscores the substantial prevalence of loneliness and social isolation among informal carers of individuals with dementia. It suggests that policymakers and healthcare providers should prioritize the development of targeted interventions and support systems to alleviate loneliness and social isolation within this vulnerable population.
This literature review focuses on the complexities and inequalities of informal caregiving in the UK and was inspired by the story of the following individual: EL is a 68-year-old Caucasian lady who ...attended Movement Disorder Clinic and was diagnosed with Parkinson's Disease Dementia following many years of symptoms. The diagnosis came as a big relief to EL and her daughter (SL) who were eager to get treatment started as soon as possible. EL lives alone with SL and solely relies on her for care and support. SL does not have children and devotes her daily routine to looking after her mother, never spending more than a few hours away from her. SL has found this situation very challenging, while EL has felt she has lost her independence. This frustration on a background of mutual love and concern was evident from both parties during the appointment. Informal carers play a crucial role in looking after individuals and provide massive relief to healthcare systems but are often left without support. This puts themselves and the people they care for at risk of poor physical and psychological outcomes. The number of informal carers continues to rise but staggering rates of burnout are still observed. By understanding the complexities and emotional impact of this role, together with the inadequacies of current social care policies, we can strive to reveal areas of improvement that can grant carers the support they deserve to carry on performing their invaluable roles. Experience Framework This article is associated with the Staff & Provider Engagement lens of The Beryl Institute Experience Framework ( https://theberylinstitute.org/experience-framework/ ). Access other PXJ articles related to this lens. Access other resources related to this lens.
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