Identity Of Carer Research Articles

Constructions of carer identity for people supporting someone with depressive or anxiety symptoms: a qualitative study

ABSTRACT Objective Research examining mental health carers’ perceptions of their role and adoption of the carer label is rare, and non-existent for carers of a person with depressive or anxiety symptoms specifically. This study aimed to understand how carers of people with depressive or anxiety symptoms perceive their identity, how they interpret the carer label and the implications of role ambiguity. Method Using a phenomenological qualitative design, 14 carers of people with depressive or anxiety symptoms participated in semi-structured interviews between June 2022 and July 2022. Reflexive thematic analysis of transcribed interview data identified four themes. Results Carers defined their identity based on their primary objective of supporting the care recipient to lead an independent life. Carers reported that the carer label had a diminishing effect on the care recipient’s independence, which served as a barrier to carers adopting the term and self-identifying as carers. In the initial phases of caring, carers attributed their negative experiences to role ambiguity. Over time, for some carers, role ambiguity enabled deeper relationships and personal growth. Discussion Adopting the carer label is challenging for this carer group. Barriers to self-identification may limit accessibility and demand for appropriate resources and services. Future research into carer identity is still required.

Mental health and wellbeing interventions for care-experienced children and young people: Systematic review and synthesis of process evaluations

BackgroundThe mental health and well-being of care-experienced children and young people remains a concern. Despite a range of interventions, the existing evidence base is limited in scope, with a reliance on standalone outcome evaluations which limits understanding of how contextual factors influence implementation and acceptability. The Care-experienced cHildren and young people’s Interventions to improve Mental health and wEll-being outcomes Systematic review (CHIMES) aimed to synthesise evidence of intervention theory, outcome, process and economic effectiveness. This paper reports the process evaluation synthesis, exploring how system factors facilitate and inhibit implementation and acceptability of mental health and wellbeing interventions for care-experienced children and young people. MethodsSixteen databases and 22 websites were searched between 2020 and 2022 for studies published from 1990 and May 2022. This was supplemented with contacting experts in the field, citation tracking, screening of relevant systematic reviews and stakeholder consultations. We drew on framework synthesis of qualitative data and incorporated a systems lens, taking account of contextual influences across socio-ecological domains. Quality appraisal assessed reliability and usefulness. Confidence in synthesised findings was assessed with the GRADE-CERQual tool. We report the review in accordance with relevant elements of both the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA), and the Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) checklist. ResultsSearches retrieved 15,068 unique study reports, and 23 of these were eligible for process evaluation synthesis, reporting on sixteen interventions. Studies were published between 2003 and 2021. Nine interventions were from the UK and Ireland, six interventions were from the USA, and one was from Australia. They were largely classified as interpersonal, where the aim was to modify carer-child relationships. Five key context factors were identified that supported and prohibited intervention delivery: (1) lack of system resources; (2) intervention burden, which encompasses the time, cognitive, and emotional burden associated with implementation and participation; (3) interprofessional relationships between health and social care professionals; (4) care-experienced young people’s identity; and (5) carer identity. ConclusionWe identified several supportive and restrictive factors across social and health care systems that may impact intervention implementation and acceptability. Key implications include: the importance of involving diverse stakeholders in intervention development and delivery; the need to better resource and support those involved in interventions, particularly training and support for carers; and ensuring future evaluations integrate process evaluations in order to optimise interventions.

Mental health, stigma and psychologists’ lived experience of caring

PurposeMental health (MH) and caring can be demanding for those directly and indirectly impacted. An under-researched area is that of professionals’ personal experiences of caring for a loved one with MH difficulties. This study aims to provide an in-depth exploration of psychologists’ experiences of caring and its impact on clinical practice.Design/methodology/approachA total of 11 psychologists with experiences of caring for a loved one with a diagnosed MH condition and/or MH distress participated in semi-structured interviews focused on caring experiences and its impact. Transcripts were analysed using thematic analysis.FindingsThemes identified were as follows: personal and professional roles; the emergence of a carer identity; carer stress and strain; impact on professional practice; and dual positioning.Originality/valueThis study highlighted the knowledge and value of listening to professionals with lived experiences. Their ability to understand stigmatisation through personal caring experiences may facilitate the mitigation of this for vulnerable people attending clinical services.

Multiple Identities of Employed Informal Elderly Filial Carers and Their Impact on Carer Wellbeing

Relying primarily on work-family conflict theory (WFC), informal care has attracted attention by researchers, policy makers, and society, but few studies have explored specifically informal filial elderly care. Few attempts have been made to investigate the role of the multiple identities of the informal elderly filial carers, those being carer identity, employee identity and personal identity. No study has looked specifically at the impact of those identities to carer wellbeing, which incorporates their subjective and psychological wellbeing. We build on a multiple identity theoretical framework to propose that the three aforementioned identities have an impact on carer wellbeing. We further combine these identities in different configurations and propose that they vary in the ways in which they affect informal elderly filial carers’ wellbeing. Drawing from this configurational framework, we put forth a typology of employed informal elderly filial carers that postulates the possible outcomes for carer wellbeing.

Supporting family carers in Ireland: the role of the general practitioner

BackgroundIreland has over half a million family carers who provide care to a family member or loved one. Internationally, it is recognised that general practitioners (GPs) have a critical role to play in the identification and support of family carers, but, to date, no guidelines exist in Ireland to support GPs in this role.AimsThe aim of this study was to examine how carers are currently supported (or not) by healthcare professionals in Ireland, with a particular focus on the role of the GP.MethodsA mixed method design was used, involving a national online survey (N = 132) of family carers in Ireland and one-to-one interviews with 10 stakeholders (4 GPs; 6 carers). The quantitative data were analysed using a series of descriptive and inferential statistics; the interview data were analysed using framework analysis.ResultsSixty-one per cent of the carer sample reported experiencing psychological distress, more than two-thirds of whom (69%) reported ‘rarely’ or ‘never’ being asked about their own health and wellbeing. Sixty-one per cent also felt misunderstood in terms of the challenges they face in their caring role. Three key themes were identified from the interview data including (1) GP role ambiguity; (2) navigating informal processes and (3) changing needs along the care trajectory.ConclusionsThe findings suggest important gaps in terms of the role of GPs vis-à-vis their support of family carers. GPs themselves indicated that they need both greater clarity regarding their role with family carers and more training and resources in this regard. A requirement for more streamlined communication and information provision was also highlighted by both GPs and carers. Carers reported a need for more information on the role of GPs in supporting carers as well as more support in addressing, in particular, the psychological complexities of carer identity and help seeking.

Problematising carer identification: A narrative study with older partner's providing end-of-life care

Internationally health and social care policies have increasingly promoted carer selfidentification as the best way to target and support people in caring roles.There has been remarkably little research concerning how people adopt the identity. This paper explores the carer identification practices of older partners providing end-of-life care.A narrative interview study comprising 41 interviews with 20 participants from 17 couples were conducted between in August 2018–August 2019 in the United Kingdom.This paper coins the term carering to denote the co-constructive practices of policy makers, researchers and broader cultural narratives calling forth the carer identity and the unfolding practices of people interacting with the carer identity in relation to their sense of self.Through three narrative case studies, this paper captures the diversity of older partners carering with three categories defined as engaged, ambivalent and disengaged carering.The carer identity was only taken-up when participants felt that the qualities assigned to being a carer, such as experiencing social isolation and providing 24/7 care, reflected their own personal experience. Given that not every older partner wants to, or will, self-identify as a carer, this paper suggests that carer selfidentification should not be the only strategy to identify and support people involved in caring. Qualitative health researchers also need to be reflexive in their use of the carer identity when studying caring-related topics.

Developing a carer identity and negotiating everyday life through social networking sites: an explorative study on identity constructions in an online Swedish carer community

ABSTRACTAn overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers’ capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.

Worry and time: the unseen costs of informal care.

The objective of this study is to examine the experiences of informal carers in terms of how their time spent caring is related to worry. Is worry about a care recipient a care practice, and if so, to what extent it can be understood temporally? Classical phenomenology underpinned this study. Three qualitative studies of people living with chronic illness in Australia were conducted between 2009 and 2013. Semi-structured interviews were conducted. Interviews were audio recorded and transcribed verbatim. Phenomenological thematic analysis of the data was undertaken. Twenty-five informal carers participated. The findings pivot around three interconnected themes: time, worry and cost. Worry was identified as a temporally bound unseen cost to carers that informs carer identity irrespective of culture, ethnicity, or social status. Worry is a practice that most carers report engaging in and it is one that comes with a temporal cost-it keeps people busy looking after the needs of others during the day and it keeps some people awake when they would rather be sleeping. Worry takes time and effort, it informs people's construction of their own sense of self, motivates acts of care, and informs carers' imaginings of what their future and that of their loved one(s) may entail.

Sacrifice for the family: representation and practice of stay-at-home fathers in the intersection of masculinity and class in Hong Kong

With changing socio-economic conditions, some men choose to become stay-at-home fathers in Hong Kong. Although they constitute only about .5% of the total male population, they have captured widespread media attention in recent years. This paper is an exploratory study on the gender representation of stay-at-home fathers in newspapers, and their identity and practice in real life in relation to the construction of masculinity in the Asian context, with particular focus on the intersection of masculinity and social class. Although stay-at-home fathers have given up their traditional breadwinner role, the media continue to portray them in terms of conventional masculinity. Contrary to the findings in Western society, this paper, which is based on Bourdieu’s practice theory, reports that middle-class men in Hong Kong with social and cultural capital are less reflexive in their gender habitus to accept their carer identity, whereas working-class fathers, who lack the appropriate capital to resume their provider status, define themselves as carers who are responsible to the family. As the identity of provider is still central to men, the emergence of this new fatherhood is only a refashioning of the traditional role of fathers and thus does not challenge the existing gender structure.

Caring for a Person With Amnestic Mild Cognitive Impairment.

While much of the literature on caregiver burden has focused on caregiving for people living with Alzheimer's disease (AD) there is little information on the experience of caring for a loved one living with amnestic Mild Cognitive Impairment (aMCI), the group most likely to convert to AD. A hermeneutic phenomenological approach was used to understand the organizing principles that give experiences of being form and meaning in the lifeworld. Study findings highlight the precarious nature of caregiver role acquisition and the heterogeneity that is present among informal care providers. Specifically, the findings suggest that the wearing of multiple situational masks is required by the carer to cope with accumulated progressive losses suffered as they continually adjust to their new and evolving carer identity. Support groups specific to the carers of those living with aMCI are needed in an effort to remove these masks and to validate this unique caregiving experience.

Personal identity and the role of ‘carer’ among relatives and friends of people with multiple sclerosis

Informal caregiving continues to be a crucial part of health and social care provision in the developed world, but the processes by which the identity of informal caregiver is conferred, or assumed, remain unclear. In this article we draw on data from a qualitative research study which examined the experiences of family members and friends of people with multiple sclerosis (pwMS) to explore how they interpret the label ‘carer’. We conducted narrative interviews with forty people throughout the United Kingdom between June 2011 and January 2012. Participants were spouses, partners, parents, children, siblings or friends of people who have had multiple sclerosis between 6 months and fifty years. We carried out thematic analysis of the interviews, informed by identity theory. Identity theory illuminated variation in peoples' perceptions of themselves as carers, suggesting that self-identification with the role and label of carer is nuanced, shifting and variable. We propose a taxonomy of caring activity including emotional support, personal care, physical care, household tasks, advocacy and activism and describe four categories, with fluid and overlapping boundaries, in which the identity of carer was apparently embraced, enforced, absorbed or rejected. Variability and fluidity in self-identification as a carer are related to apparent expectations about whether one should assume a caring role. Those who were caring from the more tangential (and less taken for granted) relationship of sibling or ex-partner were among those who apparently embraced the role. Those who were expected to assume the caring role (typically spouses) were not always comfortable with doing so. It may be difficult to gain acknowledgement from family members and others that they occupy the role of carer if people resist the label as a bureaucratisation of their personal relationships.

‘I think a lot of it is common sense. …’ Early years students, professionalism and the development of a ‘vocational habitus’

This paper reports on research from a small-scale project investigating the vocational training of students in Early Childhood Education and Care (ECEC) in England. We draw on data from interviews with 42 students and five tutors in order to explore the students’ understandings of professionalism in early years. In the paper, we discuss first, the then Labour Government’s drive to ‘professionalise’ the workforce and second, critically analyse the concept of professionalism, drawing on sociological literature. We then turn to the data, and argue that students’ understandings of professionalism are limited to generic understandings of ‘professional’ behaviour (reliability, politeness, punctuality and so on). The idea of their occupation being a repository of a particular knowledge and skills set is undercut by the students’ emphasis on work with young children being largely a matter of ‘common sense’. Our fourth point is to highlight the processes by which students are inducted into a respectable and responsible carer identity, as illustrated by an emphasis on clothes and appearance. We conclude that the version of professionalism offered to students training at this level is highly constrained, and discuss the implications of this.

A study of family carers of people with a life-threatening illness. 2: Implications of the needs assessment.

This is the second of two articles that consider the findings of a Carers' Assessment of Difficulties Index (CADI) (Nolan et al, 1998) delivered in a palliative care context. It analyses the implications of these findings for practitioners concerned with the delivery of palliative care to such carers and their families. The development of support strategies and services addressing their needs are also presented against a backdrop of transactional stress theory. For people new to caring, recommendations for the local service include early intervention through informational support and validation of their emotional responses to caring; for longer-term carers they include assistance with cognitive reappraisal of the stressfulness of caring and regular 'respite' and socializing opportunities. These are taking place in a political climate that finally recognizes the contribution and value of carers (Department of Health, 1999). The research behind these carer identity and recognition initiatives aims to apply the spirit of public recognition and practical wisdom of palliative care expertise by responding sensitively to the specific needs of carers of people with a life-threatening illness.