Informal carers in Sweden – striving for partnership
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ABSTRACT: Purpose
Informal carers have an important role in society through their care and support of their long-term ill relatives. Providing informal care is challenging and can lead to caregiver burden; moreover, many support needs of the carers are not met, leading to confusion, disappointment and frustration. We conducted an interview study to clarify the meaning of support given and received by informal carers to relatives with chronic obstructive pulmonary disease or chronic heart failure. Methods
We purposively selected and recruited informants via participants in another study, thereby conducting interviews over the phone from June 2016 to May 2017. In total, we conducted 14 interviews with 12 informants. All interviews were transcribed verbatim and the content was analysed using a phenomenological hermeneutical approach. Result and conclusion
Our comprehensive understanding of the meaning of support for these carers is twofold: it is a self-evident struggle for the good life of their relatives and that they want to be carers in partnership. The healthcare system must recognize the efforts of carers and include them in the strategic planning and operational stages of care and treatment for people with long-term illness.
SUBMITTER: Blanck E
PROVIDER: S-EPMC8567876 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundThe world's population is ageing, resulting in rising care demands and healthcare costs, which in turn lead to a shift from formal to informal care. However, not only is the number of potential informal carers fast decreasing, but also informal caregivers are experiencing a higher caregiver burden. This literature review aims to synthesize the literature on the common determinants of caregiver burden in Western countries, to help ensure future continuation of informal care in the home context, and to improve or sustain the quality of life of caregivers and patients alike.MethodA systematic review of peer-reviewed articles included in PubMed, Scopus, and/or PsychInfo was conducted.ResultsSeventeen articles were included. The most important predictors were the duration of caregiving and the patient's dependency level, in terms of both physical and mental dependency stemming from decreased cognitive capacity or behavioural problems. Some specific illnesses and role conflicts or captivity also increased caregiver burden, whereas social support lowered it. Being a female caregiver or having an adult-child relationship led to a higher burden.ConclusionsThe most important predictors of caregiver burden are the duration of caregiving and the patient's dependency level. In addition, the patient's behavioural problems and cognitive capacity determine dependency level, and thus care burden. Interventions to relieve burden need to be adapted to the illness trajectory of specific diseases and corresponding needs for social support for both the recipient and the caregiver. Changing role expectations, leading to men being more involved, could reduce the disproportionately high burden for women.
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Project description:BackgroundProviding unpaid support to family and friends with disabling health conditions can limit a carer's capacity to participate in employment. The emotional support needs and unpredictability of caring for people with mental illness may be particularly demanding. While previous research suggests variable employment rates across carers for different conditions, there are limited data on mental health carers specifically.MethodsThis study analysed employment patterns for working-age, co-resident carers of adults with mental illness in an Australian cross-sectional household survey, the 2015 Survey of Disability, Ageing and Carers.ResultsSignificantly more mental health carers were not employed (42.3%, 95% CI: 36.6-48.1) compared to non-carers (24.0%, 95% CI: 23.5-24.6). Employed mental health carers were more likely to work fewer than 16 h per week (carers: 17.2%, 95% CI: 12.8-22.8, vs. non-carers: 11.7%, 95% CI: 11.3-12.1) and in lower skilled occupations (carers: 22.6, 95% CI: 17.5-28.7, vs. non-carers: 15.7, 95% CI: 15.1-16.2). Among the sub-group of primary mental health carers, 25.8% (95% CI: 15.6-39.5) had reduced their working hours to care and a further 26.4% (95% CI: 17.2-38.2) stopped working altogether. In corresponding comparisons between mental health carers and carers for people with other cognitive/behavioural conditions, and physical conditions with or without secondary mental illness, there were no differences except that mental health carers were more likely to be working in a lower skilled occupation than other cognitive/behavioural condition carers (14.8% of the latter, 95% CI 10.1-21.2). Multivariate logistic regression analyses revealed that female mental health carers were less likely to be employed if they were aged 35-54, had no post-secondary education, had a disability, or cared for someone with severe activity limitations. For male mental health carers, having a disability or caring for someone with severe limitations or who did not receive paid assistance were significantly associated with not being employed.ConclusionsThese results highlight the employment disadvantage experienced by mental health carers compared to non-carers, and similarities in employment patterns across carers for different conditions. Improving the availability of paid support services for people with mental illness may be an important target to assist carers to maintain their own employment.
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Project description:Introduction Cancer patients face a variety of challenges in understanding their diagnosis and treatment options. Making informed decisions requires health literacy. There is scant research on how colorectal cancer (CRC) survivors and their caregivers engage with healthcare systems and obtain cancer-related knowledge to maintain proper health literacy, which is crucial for enhancing their outcomes. Materials and methods In-depth semi-structured interviews (IDIs) with CRC survivors (n = 15) and online focus groups (FG) with informal caregivers (ICs) were held in Amman between Jan-June 2020. In-depth interviews were conducted using semi-structured interview protocol that addressed the healthcare experience of CRC cancer survivors. FGs evaluated ICs' perspectives of e-health for cancer care support. IDIs and FGs were done in the local Jordanian Arabic dialect, which was then translated into English. Transcribed audio-recordings were thematically coded and framework analysis was used. Results The findings are organized around a central concept of “exploring the level of literacy and its impact.” From the overarching theme, three themes and subthemes emerged, including: (1) The current state of counseling and information provision, (2) The impact of lack of information, awareness, and literacy and (3) The health system's influence on literacy. Conclusions Poor cancer literacy hinders patients throughout their cancer journey. Empowering cancer patients is crucial for a more timely and positive patient experience. Increased cancer literacy together with the creation of health-literate organizations and systems have the potential to improve patients' treatment throughout the continuum of care.
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Project description: Not available
| S-EPMC7433299 | biostudies-literature
Project description:Background: The aim of the study was to develop a multidimensional quality of life instrument suitable for use among individuals across cultures who have an informal care role for older persons. Methods: Participants were informal carers of older adults in the United Kingdom (n = 308), United States (n = 164), and China (n = 131). We carried out exploratory and confirmatory factor analyses of 61 items derived from the eight-factor Adult Carers Quality of Life Questionnaire with newly added items to define both traditional and nontraditional informal care roles. Results: Findings suggest a 24-item quality of life scale with a six-factor structure to caring for older adults that assesses (a) exhaustion, (b) adoption of a traditional carer role, (c) personal growth, (d) management and performance, (e) level of support, and (f) financial matters. Conclusion: We present a new scale to assess the multidimensional aspects of quality of life among those caring for older adults.
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Project description:ObjectivesTo identify, critically appraise and synthesise the qualitative literature on the experiences of informal carers of people with long-term conditions during the COVID-19 pandemic.DesignA qualitative systematic literature review.Data sourcesEight electronic databases were systematically searched (Medline, Embase, CINAHL, PubMed, PsychINFO, Web of Science, Nursing and Allied Health and ASSIA) along with Google Scholar and handsearching via secondary sources.Study selectionEligible studies had to include the experiences of informal carers (adults who are 65 or older), use a qualitative methodology and had to be written in English.Data extraction and synthesisRetrieved papers were quality assessed using the Critical Appraisal Skills Programme qualitative checklist and ranked for quality. Thematic analysis was used to synthesise the findings.ResultsFourteen studies were included, all from medical or nursing journals (n = 5 specifically gerontology). Four main themes were identified: (i) fear, (ii) uncertainty, (iii) burden and (iv) staying connected. Caregiving demands have increased for carers during the pandemic, as well as negative emotions such as fear and uncertainty. At the same time, less social support has been available, leading to concerns about carers' wellbeing and ability to cope.ConclusionCarers' needs have been exacerbated by the COVID-19 pandemic. Greater practical and emotional support is needed for carers from both formal services and community sources that considers their changing needs and offers educational and emotional support for long-term wellbeing. Strengths and Limitations: (1) This is the first systematic review to explore in depth the experiences of informal carers caring for people with a range of long-term conditions and from an international context. (2) The review includes an analysis of the quality of the studies, as well as a study of their relative contributions. (3) Further research is needed to explore the physical, emotional and financial impact of the pandemic for bereaved carers which is not captured in this review due to the lack of empirical data available at the time of review.
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Project description:BackgroundTo improve prerequisites for better health development among children growing up in multicultural suburbs in Stockholm County, where poorer health is displayed in several aspects including child health, early support was initiated for first-time parents in one of the suburbs. An extended postnatal home visiting program during the child's first 15 months was offered to families with first-time mothers during 2013-2014 and consisted of six home visits by a child health care nurse and a parental advisor from social services. Almost all invited families (94%) participated in the program and the program evaluation. Fathers' participation in two or more home visits within the program was 53%. The aim of this study was to explore the experiences of fathers participating in the program, with respect to their role as a first-time parent from a resilience perspective.MethodsIn-depth interviews were conducted with nine fathers. Constructivist grounded theory (GT) was applied in the analysis.ResultsThe fathers' experiences formed the core category of the study, 'striving for stability in living conditions', as well as three categories: 'everyday life conditions', 'adjustment to fatherhood in Sweden' and 'channels of support'. The fathers perceived that the home visiting program strengthened their parental confidence and increased their knowledge of societal services and local resources for their family.ConclusionsIn terms of resilience, the extended postnatal home visiting program benefitted the interviewed migrant fathers on an individual level by meeting part of their need for support regarding knowledge and parental confidence; on a structural level the program helped fathers gain information about available societal services and resources in their local area.Trial registrationThe study was retrospectively registered (11 August 2016) in the ISRCTN registry (ISRCTN11832097 DOI: https://doi.org/10.1186/ISRCTN11832097 ).
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