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Providing informal care in a changing society.

ABSTRACT: The ageing of society is leading to significant reforms in long-term care policy and systems in many European countries. The cutbacks in professional care are increasing demand for informal care considerably, from both kin and non-kin. At the same time, demographic and societal developments such as changing family structures and later retirement may limit the supply of informal care. This raises the question as to whether the volume of informal care (in people) will increase in the years ahead. This paper aims to provide a theoretical answer to this question in two steps. First, based on different care models and empirical literature, we develop a behavioural model on individual caregiving, the Informal Care Model. The model states that, in response to the care recipient's need for care, the intention to provide care is based on general attitudes, quality of the relationship, normative beliefs, and perceived barriers. Whether one actually provides care also depends on the care potential of the social context, being the family, the social network, and the community. Second, we discuss how current policy and societal developments may negatively or positively impact on these mechanisms underlying the provision of informal care. Given the increased need for care among home-dwelling individuals, the model suggests that more people will take up the caregiver role in the years ahead contributing to larger and more diverse care networks. It is concluded that long-term informal care provision is a complex phenomenon including multiple actors in various contexts. More research is needed to test the Informal Care Model empirically, preferably using information on care recipients, informal caregivers and community care in a dynamic design and in different countries. Such information will increase insight in the developments in informal care provision in retrenching welfare states.

SUBMITTER: Broese van Groenou MI

PROVIDER: S-EPMC4992501 | biostudies-other | 2016

REPOSITORIES: biostudies-other

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Project description:Background and purposeThe 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 methodsThe 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.ResultsThis 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 implicationsTransgressing 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.

Project description:BackgroundIn palliative care, caring for spouses suffering from incurable diseases can provoke a range of reactions in informal caregivers that are part of the grieving process, as well as other reactions and ways of coping with a current role, which is often challenging. Anticipatory grief occurs before death and is often present in people who face the eventual loss of a loved one or their own death. This study aimed to gain insight into the anticipatory grief of informal caregivers who are providing at-home palliative care for their ill spouse. Our research questions focus on investigating the meanings caregivers ascribe to the experience of providing palliative care and the impending loss of a spouse.MethodsA qualitative study was conducted in Zagreb, Croatia, from April to June of 2021. Eight participants took part in the study. Participants in the study were informal caregivers of a spouse suffering from an incurable, terminal disease that receives at-home palliative care. Data were collected through semi-structured face-to-face interviews. Transcripts were analyzed by interpretive phenomenological analysis.ResultsThe analysis provided several meanings that represent caregivers' experiences and coping strategies. The caregivers bravely face the challenges of "living with an illness" by maintaining optimism, strong cohesion with their partner and a sense of joint destiny. They tend to repress their own personal needs and feelings while carrying the burden of care. Caregivers tend to stay positive and focus on living in the present by taking an active role in providing care for the ill spouse and family.ConclusionsAnticipatory grief presents emotional, cognitive, and spiritual challenges to spouse caregivers in palliative care. The contribution of this study was to gain insight into the meaning that caregivers ascribe to the experience and challenges they face while providing everyday care for their ill spouse. Confirming prior results, the experiences are generally similar to all caregivers, pointing to the need for substantial improvement in the quality of the support and help from the healthcare workers and other experts who provide palliative care and support for the patients' family members.

Project description:In this paper, we are going to address job satisfaction and perceived self-efficacy withinthe context of residential child-care. A joint report from the European Foundation for the Improvement on Living and Working Conditions and the European Agency for Safety and Health at Work revealed that managers in the field of health and education were the most concerned about the psychosocial risk of their employees, although concern is not automatically translated into tools to face the risk and to manage it. So, measuring and improving employees' job satisfaction and self-efficacy can be an important means for organizations to prevent the outcomes of psychosocial risk, and supporting high quality performance of workers. But profound changes are affecting the nature of work at large, and specifically social educator's in the field of residential care with minors. Globalization, radical technological and communication developments, as well as the pressure to frame care as a commodity, are quickly changing procedures and praxis at work, and even the meaning of job itself. All these changes are highly demanding for this category of professionals, as much as the fact that the organizational setting is vanishing as a resource to sustain their professional attitudes and behaviors. Under these circumstances, job satisfaction and self-efficacy can be hard to experience, and isolating their precursors is essential to develop healthy and effective work environments. This paper means to highlight the process of supporting self-efficacy and job satisfaction in the educational work in residential youth care that is still underrepresented in research. It presents data emerging from two studies, study 1 involving 268 educators and study 2 involving 472 educators belonging to different Italian residential child-care services. Study 1 consists of a quantitative study including the following measures: attachment style, job satisfaction, work-related self-efficacy, and length of service. Study 2 consist of a qualitative exploration deepening the sources of educators' work-satisfaction. Quantitative data support the identification of attachment style and length of service as antecedents of work-related self-efficacy and job satisfaction. Qualitative data show the importance of relational issues in shaping the educators' satisfaction at work.

Project description:There is an increasing prevalence of cancer in Africa with approximately 80% of cancers diagnosed at an advanced stage. High out-of-pocket healthcare costs and overstretched health systems lead to heavy reliance on informal carers for cancer care. This study aims to explore the roles and experiences of informal carers including the impact of cancer care on individuals and communities and support available for carers. We carried out a systematic review following PRISMA reporting guidelines and used critical interpretative synthesis to identify themes and develop an informal carers' experience framework. We searched nine databases and screened 8,123 articles from which 31 studies were included in the review. Most studies were from Sub-Saharan Africa (29/31, 94%), particularly Uganda (9, 29%). Carers were mostly women, aged 30-40 years, and siblings, spouses, or children. Caring roles included care coordination, fundraising, and emotional support. Caring was time-consuming with some carers reporting 121 hours/week of caring, associated with the inability to pursue paid work and depression. Four themes demonstrated carers' experiences: 1) intrapersonal factors: strong sense of familial obligation, and grappling with gender roles, 2) interpersonal factors: impact of a cancer diagnosis on households, changing social and sexual relationships, 3) community factors: navigating cultural norms on nature and location of care, and 4) health system influences: barriers to accessing healthcare services, and tensions between traditional and biomedical medicine. These themes aligned with Bronfenbrenner's social ecological model which aided our development of a framework for understanding informal carers' experiences'. Our review highlights multifaceted roles and experiences of informal carers in Africa, amidst cultural and community impacts. Carers experience a strong obligation and willingly undertake the role of carer, but at the expense of their social, economic, and psychological wellbeing. Support for carers, including flexible working hours/ carers' allowance, should be incorporated as part of universal health coverage.

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Providing informal care in a changing society.

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