Background: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones. Methods: Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified. Results: Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research. Conclusions: Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.
Objectives: To develop understanding of the lived experiences of children of people living with young onset dementia, defined as individuals both under and over the age of 18 years whose parent was diagnosed with dementia before the age of 65 years. Method: A critical appraisal and thematic synthesis of the available qualitative literature regarding the lived experience of individuals whose parent has a diagnosis of young onset dementia. A three-stage approach for conducing thematic synthesis was followed. Results: 15 articles were included in the review. Four analytical themes and 11 subthemes were found. The analytical themes were ‘making sense of dementia’, ‘impact of dementia’, ‘coping’ and ‘support’. Conclusions: The experiences of those affected by parental young onset dementia vary widely. There is a lack of knowledge and understanding of young onset dementia by professionals and the public, and a scarcity of appropriate support. This has clinical implications for professionals working with families affected by young onset dementia, in particular with regards to service design and delivery.
Background: Carers (including young carers) experiencing negative outcomes due to their caring role are more likely to report a lower sense of coherence. This article explores young carers' support needs for support provided by professionals. Methods: A total of 20 interviews with young carers and the persons for whom they provide care were analysed by applying Antonovsky's paradigm of salutogenesis. The dimensions of manageability, comprehensibility and meaningfulness served to categorise the data. Findings: The findings show various needs for support within all three dimensions of the sense of coherence. Conclusions: The results outline key support strategies that professionals can use to build the competencies, confidence and resilience of young carers and their families.
Background: Across the world, many young people are supplying unpaid, informal care. There is growing evidence of the impact of this caring role on the lives of young informal carers, however there has been little quantitative analysis of the mental health impacts. This research aimed to estimate the effect of informal caring at age 14/15 years on mental health at age 18/19 years. Method: Data was drawn from Waves 5, 6, 8 (2012-2018) of the Longitudinal Study of Australian Children. Effects of caring on mental health were assessed using augmented inverse probability weighting, with adjustment for potential confounders, and using the Kessler-10 measure of mental health. Caring was assessed with both a binary (any caring vs none), and a three category variable (no caring, less than daily caring, daily caring). Multiple imputation was carried out using chained equations, and analysis was conducted on both complete case (n=2165) and the imputed dataset (n=3341). Outcomes: In complete case models, any caring at age 14/15 years was associated with poorer mental health at age 18/19 years compared to those reporting no caring, with an average treatment effect (ATE) of 1.10 (95%CI 0.37, 1.83). The ATE of daily caring compared to no caring at age 14/15 years of age was 1.94 (95%CI 0.48, 3.39), and caring less than daily (compared to no caring) was associated with a treatment effect of 0.83(95%CI 0.06, 1.61). Associations were robust to several sensitivity analyses. Conclusions: These results suggest there is a mental health impact of caring in adolescence on mental health four years later. This highlights the need for support for young informal carers, particularly for those providing more intensive caring.
Objectives: The purpose of this study was to explore youth experiences and perspectives on family caregiving to improve programs and policies that impact the well-being of youth. Methods: In August 2020, we asked three open-ended questions about current and anticipated caregiving responsibilities, impact, and needs using MyVoice, a national text message poll of youth. Content and thematic analysis was conducted to evaluate qualitative responses. Results: In our sample (n = 1,076), 35% of respondents reported previously or currently providing care for an adult relative either independently or by helping another relative. Participants believed caregiving had or would hinder their educational or career goals and that specific training would better prepare them to be a caregiver. Conclusions: The prevalence of youth caregiving may be higher than previous estimates. Healthcare professionals should evaluate youth for caregiving responsibilities and support them in identifying resources or interventions to reduce potential impacts of caregiving burden on health outcomes.
Background: Much literature about kinship care has focused on grandparents, with limited attention to other kinship carers. Methods: This article describes results from the second part of an Australian research project that explored the prevalence, experiences and support needs of kinship carers aged 18-30 years through interviews with 41 kinship carers. Most were sisters or aunts. Results: Findings included deep commitment of the carers to children in their care and the children's positive development over time. Young kinship carers described personal costs of caring, including sudden adjustment to the task of parenting distressed children, suspension of studies, jobs and career development, pressures of intrafamilial conflict, a lack of recognition of their existence and support needs, and above all, financial stress. Conclusion: The need for multifaceted support to be available to this group of kinship carers is identified.
Background: Amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) remains under-resourced across much of the world, including the global south. The lack of supports for ALS/MND is underscored, given the barriers to care, stigma associated, and need for intensive, 24-hour care, primarily provided by family, including vulnerable children and youth, 'young carers'. With little information of the care experience in ALS/MND in South Africa, this study sought to explore family characteristics and identify caregiving experiences and need of young carers in families living with ALS/MND. Methods: Using an exploratory mixed-methods approach, participants (N = 40) from 20 familes, were recruited from the two ALS/MND clinics in Cape Town and Johannesburg areas. Separate audiotaped interviews with adults living with ALS, adult caregivers and young carers were conducted. Findings: Young carers, both genders, ages 9–19, provided care up to 50 or more hours per week, including administering medications, toileting, and feeding the person with ALS/MND, with the majority reporting no training. Stigma, fear and lack of knowledge about ALS/MND limited how families discussed both ALS/MND and care provided by young carers. Families highlighted transportation barriers, and inconsistent access to care across regions. Parents identified emotional support, and in-home help to alleviate the burden of care on youth, acknowledging reliance on young carers due to cost of care. Young carers identified the need for education and people their age to talk to about ALS/MND. Conclusions: Results highlight the complex needs and interaction among families living with ALS/MND in South Africa. Data support the development of targeted support and education programs to address the need for culturally relevant interventions for families and their young carers living with ALS/MND.
Minimal research has been undertaken into needs of partners of adolescents and young adults with cancer. However, it is understood to be important for adolescents and young adults with cancer to maintain a connection with healthy peers and that they regard their loved ones, including partners, as valuable to them during their cancer treatment. Research has also suggested that adolescents and young adults consider that loved ones and partners also need support and that this support is lacking in cancer services. A recent research project by the first author (JD) examined the experience and role of partners in meeting the support needs of adolescents and young adults with cancer. A vital aspect of the project was the use of patient and public involvement in the development of a young adult advisory group – consisting of couples where one person in the relationship had been treated for cancer – to inform all aspects of the research. This article provides a brief summary of the completed research, and describes the development and work of the advisory group.
Background: It is unknown how Swiss professionals support for young carers. Previous national research suggests a lack of support services for young carers. Professionals do provide individual as well as a family-centred support. Social services seem to be most inclined to initiating interdisciplinary support. The situation of children, adolescents, young adults with caring responsibilities and their families has only recently been addressed in the Swiss context. Initial findings show a low level of awareness among professionals towards young people with caring responsibilities, and also a lack of specific support services nationally for young carers. This might suggest that the support needs of young carers and young adult carers are not currently being recognised or met in Switzerland. Objectives: The purpose of this analysis was to explore to what degree young carers' needs for support are currently met by professionals. We evaluated how professionals in Switzerland currently support young carers in their occupational context; what kind of organisations they refer young carers to; and if the current support approaches meet international recommendations (drawn from research and policy in other countries). Methods: Data from a cross-sectional online survey completed by 2142 professionals from education, healthcare and social services in Switzerland were analysed. The data included respondents' demographics, professional background, awareness of young carers' situations and circumstances, ability to support young carers, referrals to other organisations, as well as approaches to support young carers. We conducted text analysis of the open-ended answers according to Kuckartz (2014) as well as descriptive statistical analysis and Chi-Square independence tests. Just over half (55.8%) of the professionals in our study reported being able to support young carers. Findings: Five different categories of support interventions were identified: counselling ; connecting with others ; emotional support ; including the family/network; and providing practical skills & illness-related knowledge. Professionals who reported that they themselves had a caring role when they were young were more likely to be able to support young carers (p <.001). Professionals familiar with the term 'young carers' more often mentioned systemic support approaches (such as family-centred procedures and coordination/interdisciplinary cooperation) than those who were not familiar with the term. Study results show that many professionals in Switzerland address relevant realms and specific challenges for young people with caring responsibilities without being familiar with the experiences or needs of young carers. How they support young carers and young adult carers, perhaps surprisingly given their lack of awareness and specific knowledge, correspond with the main approaches currently found in the international literature recommendations for professionals working with young carers. The fact that systemic approaches of support were less often described, especially by professionals unfamiliar with the term 'young carer', raises the question whether appropriate sustainable and long-term support can be provided without having a clear understanding of the concept, experiences and specific needs of young carers. Conclusions: The study results provide a national starting point to develop support provisions and interventions for young carers. The results also offer relevant data for policy recommendations.
Aims and Methods: This qualitative, systematic review explored the influence of gender on children's and young people's caring roles. Findings: However, there was very limited research in this area. Eight studies were included and the synthesis yielded seven global themes. The meta- ethnography produced a higher- order concept— the gendered reproduction of children's and young people's caring. Conclusions: The review shows that children and young people are relied on as a caring resource in the global North and South. We emphasise that gender equality in caring, particularly among adults, is necessary to enhance the lifechances of girls and young women.
Background: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. Methods: This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones. Methods Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified. Results: Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research. Conclusions: Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.
Background: Young adults are increasingly taking on caregiving roles in the United States, and cancer caregivers often experience a greater burden than other caregivers. An unexpected caregiving role may disrupt caregiver employment, leading to lost earning potential and workforce re-entry challenges. Methods: We examined caregiving employment among young adult caregivers (i.e., family or friends) using the 2015 Behavioral Risk Factor Surveillance System (BRFSS), which included caregiving, employment, and sociodemographic variables. Respondents’ ages varied between 18 and 39, and they were categorized as non-caregivers (n = 16,009), other caregivers (n = 3512), and cancer caregivers (n = 325). Current employment was compared using Poisson regressions to estimate adjusted incidence rate ratios (aIRR) and 95% confidence intervals (95% CI), including gender-stratified models. We estimated employment by cancer caregiving intensity (low, moderate, high). Results: Cancer caregivers at all other income levels were more likely to be employed than those earning below USD 20,000 (aIRR ranged: 1.88–2.10, all p < 0.015). Female cancer caregivers who were 25–29 (aIRR = 0.71, 95% CI = 0.51–1.00) and single (aIRR = 0.70, 95% CI = 0.52–0.95) were less likely to be employed than their counterparts. College-educated males were 19% less likely to be employed than high school-educated caregivers (95% CI = 0.68–0.98). Conclusions: Evaluating caregiver employment goals and personal financial situations may help identify those at risk for employment detriments, especially among females, those with lower educational attainment, and those earning below USD 20,000 annually.
Objective: The objective of this study was to understand the conceptualisation and development of a novel way of providing end‐of‐life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. Methods: A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information. Data collection (2017–2018) included documents (e.g., meeting minutes) and interviews (individual and group) with external (e.g., GPs) and internal (e.g., staff, managers, volunteers, patients, family carers) stakeholders. These were followed by action cycles conducted by a core action group which explored issues related to family and young carers, the relationship between the main and Cottage Hospices and workforce engagement with the change process. Iterative, inductive, thematic analysis was followed by axial coding facilitated within NVivo. Twenty‐six individual and eight follow‐up interviews, two group interviews and five discrete action cycles were completed. Findings: At the core was a focus on disruption of the norm of professionally provided and mediated care, with three main themes: imagining the future of Cottage Hospice (growing demand, a home‐like space, innovative roles for families and volunteers); developing the role of family caregivers (making agreements, meeting needs, social inclusion and the 'unknown' expectations) and quality and safety issues (negative perceptions, personalised care and volunteer roles). Change was viewed as both a threat and an opportunity. Cottage Hospice represents the possibility of a truly new way of meeting the needs of dying people and their families, and could act as a template for progressive service developments elsewhere.
Objective: To characterize informal caregivers of dependent older people after a stroke related to aspects of care, and to describe the activities performed and the difficulties faced by these caregivers. Methods: Cross-sectional, descriptive study, held in southern Brazil with 190 informal caregivers of older adults after stroke. The sociodemographic data instrument and the Capacity Scale for Informal Caregivers of Elderly Stroke Patients (ECCIID-AVC), adapted and validated for use in Brazil by Dal Pizzol et al., were used. Results: Most caregivers were women (82.6%) or children (56.3%), had average schooling of 9.6 years, and the majority (68.3%) provided care for people with moderate to severe disability. The main activities carried out included: providing materials and/or support for eating (99%), dressing (98.4%), and administering medications (96.2%). Caregivers had the most difficulty with transferring and positioning activities. Conclusion: Most caregivers have adequate capacity to provide essential care to the dependent older adult after a stroke. However, a significant portion had difficulty in the activities of transferring and positioning the older person due to the lack of guidance regarding the posture to carry out these activities. The assessment of nurses regarding the activities performed and the difficulties faced by caregivers is an important strategy to identify problems and effectively attend to the needs of these individuals at all levels of health care.
Background: This article presents an analysis of policies on young carers in England, considering both the design but also the lived experience of policy subjects. Method: Drawing on affect theory we can increase understanding of the reach of these policies into family life and the nature of English policy‐making focussed on this group. This analytic framework presents the opportunity to draw on the use of affect theory developed in other disciplines but less so in the discipline of social policy. Findings: The article argues, firstly, that normative messages through policy design are conveyed to families through affects. Secondly, it argues that hierarchies of subject positions established within policy design are reaching and impacting on young carers and their families through affective pressures. Conclusion: This article demonstrates that affect theory contributes to the analysis of social policies on young carers and also illuminates the impacts of policies in the context of limited formal implementation.
This briefing looks at Black, Asian and Minority Ethnic (BAME) young carers and their specific and unique needs. BAME young carers have long been recognised as particularly vulnerable. The term BAME is inclusive of those who may have vastly different issues and vulnerabilities including within their own communities. For example, there are differences within Black, Minority Ethnic and many Asian families and communities. Asian communities themselves vary drastically also depending on their country of origin and time spent in the UK. Much of our research is focused on issues within Asian communities, predominantly South Asian, as that is the highest BAME demographic within our young carers’ services. The sheer breadth of different communities we work with is demonstrated in the chart below. Therefore, in this report the term BAME relates mostly to South Asian families.
Caring for their chronically ill or disabled family members is a responsibility that may be assumed by children and adolescents ("young carers") and may affect young carers' lives in many ways. Some young carers may experience long-term adverse health effects related to their early caring responsibilities and others may demonstrate healthy adaptation. Little research applying nonretrospective designs, however, has been done from the perspective of young carers regarding the psychosocial resources that enable them to handle the responsibility of caring for chronically ill or disabled family members. The aim of the present study, therefore, was to identify psychosocial resources used by young carers in Austria. Ten children and adolescents (aged 9-17) took photographs to illustrate their everyday lives. The photographs were then used to guide subsequent interviews. Data were analyzed following the principles of directed qualitative content analysis and using the theoretical lens of resilience. We identified two sets of psychosocial resources: (1) Personal resources comprising (a) being able to spend leisure time and (b) finding distraction from sorrows and problems. (2) Interpersonal resources comprising (a) fostering meaningful friendships, (b) receiving support from the family, and (c) bonding with the ill or disabled family member. Young carers largely have the same repertoire of resources as other children and can use them specifically to respond to the care burden. Interventions to support young carers must focus on promoting peer contact and cohesion within the nuclear family as well as bonding with the ill or disabled relative.
Extract from Executive summary: Australians who care for people with a disability, illness, or a broader need often embody many of the qualities sought by universities. In providing unpaid labour to support family members and friends, carers typically demonstrate resilience, selflessness, and a commitment to societal health, wellbeing, and cohesion. Provision of this critical support is often required while simultaneously managing high demands on time and limited financial resources (ABS 2018a, 2018b). Young carers in particular have been identified as holding relatively low levels of education (Department of Social Services [DSS], 2019). The COVID-19 pandemic has only exacerbated the challenges for carers. Collectively, evidence suggests both a need and an opportunity for universities to develop specific policies to attract and support those who care for others.... Through our national survey, we found student carers were highly motivated to succeed in higher education. Student carers identified a range of skills developed through their caring roles that were beneficial to themselves and their peers at university. These skills include time management, empathy, compassion and patience, as well as specific expertise with relevance to areas of study, including nursing skills and knowledge of disabilities. Carers also improved the broader student experience by sharing different perspectives, advocating for students, and providing direct assistance with coursework. Despite these strengths, juggling caring and study produced considerable time pressure, financial hardship, and lower levels of wellbeing compared with their non-caring peers. Circumstances were often made more difficult by the rigidity of course structures and study requirements.... Another notable finding was that a quarter of student carers never disclosed their carer status to anyone at university. This trend leaves many student carers invisible and makes it more difficult to provide appropriate and timely support where required. Among the most common reasons for not disclosing carer status were never being asked and seeing no benefit to disclosure. It is likely some carers also feared being stigmatised and/or defined by their caring role. These findings highlight the importance of increasing awareness and understanding of carers within the university community.
Carers Trust Wales, in partnership with local authorities from across Wales, is supporting a new Welsh Government funded ID card scheme to help young carers in Wales to be identified, feel validated, and receive the support they deserve.
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Findings from international research emphasis the need of these young people to be identified and recognised. Therefore, a nationwide quantitative study of professionals' awareness was conducted in the Swiss context. Data were collected from professionals working in education, healthcare and social services. The study examined professionals’ familiarity with the terms used to describe young people with caring responsibilities; their ability to identify the population in their professional context; their perception of the relevance of the issue; their ability to support them; and their own training needs. Potential study participants were contacted via email. Data were collected using an online survey, which was open for 14 weeks during the period of September to December 2016. Survey data from 2,311 professionals, who reported being regularly in contact with young people with caring responsibilities in their occupational context, were included for analysis. Of all terms presented in the survey, young carer (YC) was the term most familiar to all professionals. Among healthcare and education sector, the percentage of professionals familiar with this term was higher than that among professionals from social services. Professionals from social services were the most likely to consider the issue relevant to their work, those from education were the least likely. Professionals who were familiar with the terms describing YC were more likely to consider the issue relevant to their work. Study results showed that more than half of the respondents had not identified young people with caring responsibilities, and that the ability of participants to identify YC was related to their occupational sector. The perceived ability to support YC was related to their reported ability to recognise them. In order to enable professionals to support YC, raising awareness, providing training for professionals and a national network of existing organisations should be well considered.
This research explores the eco-systemic factors impacting on the educational inclusion of young carers (UK) that defines a young carer as anyone under the age of 18 years old who provides, or intends to provide, care for another person of any age. The literature has indicated that young carers with additional needs are a population more vulnerable to poorer outcomes in educational attainment, employment opportunities, and psychological wellbeing. The current research draws on qualitative research methods to identify the systemic factors that strengthen the educational inclusion of young carers with additional needs. Findings suggest important factors at different systemic levels around the carer, such as the role of the key person within the educational setting, the role of external support and social support in strengthening a young carer's inclusion in their educational setting. The implications for practice are discussed.
Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15-17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient. Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.
This publication relating to “Carers and Social Supports” provides data and insights on Carers in Ireland (who they are, how many hours of caring they provide, etc.) and the extent to which people in Ireland can rely on informal social supports (assistance from neighbours for example). The publication also outlines, for those aged 65 years and older, the extent to which they experience difficulties with certain personal care and household activities.
The data in this publication was collected as part of the “Irish Health Survey” in 2019 and early 2020. The first health survey was collected for reference year 2015, but in a different way to how the data was collected for this publication – more detail on this follows. The detail in this publication is a subset of the broader data collected, and the “Main Results” publication is to be published on December 11th. This publication will outline various aspects of health in Ireland (health status of people in Ireland, their engagement with the health system and health determinants). Finally, on December 14th there will be a publication on the health experience of persons with disabilities. Again, this last publication is a subset of the main data collection for the Irish Health Survey.
The survey is based on self-reported data from persons aged 15 years and over, and outlines their view of their health status, the informal social supports available to them, and the extent to which they encounter (for persons aged 65 years and over) difficulties in performing personal care (for example, eating, dressing themselves, showering) or household activities (for example, performing housework or shopping). The data collection for this publication was conducted between July 2019 and February 2020 and accordingly relates to the pre-pandemic health and other experiences of respondents.
This House of Commons Library briefing paper provides information about the number of informal carers in the UK and the issues they face. It also explains the rights, benefits and support available to informal carers as well as current and previous Government policy on caring.
There is a lack of evidence on the health-related impacts of being a young carer. This article takes a population approach to young carer research specifically to investigate the prevalence of young carers and explore differences in their health, well-being and future expectations. This is a cross-sectional regression analysis. Secondary analysis of a representative Scottish secondary school survey was undertaken. Pupils with caring responsibilities were identified, and their outcomes in terms of physical and mental health and postschool expectations were analysed. Almost one in eight (12%) surveyed reported caring for someone in the household. Young carers' physical and mental health and psychosocial outcomes were significantly poorer, and they were significantly less likely to see themselves entering further or higher education. This research suggests that Glasgow could have many more young carers than previously thought and provides clear evidence that young people's outcomes are influenced by carer status. • The number of young carers in Glasgow, Scotland, was higher than previously thought. • One in twelve of the school pupils surveyed provided informal care. • Young carers are significantly less likely to see themselves going on to further or higher education. • Young carers are more likely to report psychosocial difficulties and mental health problems.
A large proportion of long-term care for people with disabilities and/or long-term health conditions is provided by unpaid carers, including young people, with potential impacts on their education, employment and health. Supporting carers is a focus of long-term care practice and policy in many countries. A key part of this support in England is through provision of services to the person with care needs (often called 'replacement' care). We aimed to explore the role of replacement care services in supporting young adult carers' health, education, and employment. We used a mixed-methods approach: self-completed questionnaires and in-depth follow-on interviews. We found ways in which services supported young adult carers but, contrary to previous research, receipt of services by the person with care needs was not associated with better reported carer outcomes in our survey. One key reason for this finding was that not enough services were received to meet care needs and alleviate unpaid caring to a level or type compatible with better outcomes. The wider economic and political context of our study, during fiscal austerity and cuts to social care budgets, and the particular circumstances of young adult carers may offer further explanations.
This qualitative study aims to describe the experiences of adults with caring responsibilities during their childhood. 16 semi-structured interviews with former young carers were conducted and analyzed using open and axial coding procedures and constant comparison techniques. Being responsible as a child in terms of caregiving has an impact on every person concerned. When entering adulthood, most former young carers maintain the responsibility for the ill person. They feel torn between the effort of trying to arrange their life in a different way and holding on to a life where responsibility is still a dominant concern. They remain silent about caregiving due to the fear of painful memories, or the inability to recognize themselves as former young carers. Knowledge of former young carers’ situation can improve the understanding of how caring shapes the transition into adulthood and can help to prevent an inappropriate caring role of actual caregiving children.
Background: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17 years old. Methods: A two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs. Results: Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care. Conclusions: In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.
Based on findings from a Canadian-based study, this article examines the stories of young adult women carers. Young adult women caring for a parent or grandparent were interviewed using social network maps, participant-driven photography and care timelines. The findings reveal numerous impacts on the women's lives, which we categorise according to three temporal periods: the past (how they came to be carers); the present (their daily realities of care); and the future (how they imagine what is ahead). We conclude with a discussion regarding the tensions between the women's personal stories and the social forces that shape young women's caring.
This guidance is for anyone under 25 who cares for a family member who cannot cope without their support. This may be because they have a lifelong condition, illness, disability, serious injury, a mental health condition or an addiction.
The research illuminates the lived experiences of student carers across Scotland’s colleges and universities, including the perspectives of those supporting them. Through an investigation of the challenges student carers face, and the barriers to accessing support, the research makes recommendations and suggestions to improve the studying experience for carers.
The results of a Carers Trust Scotland survey into the impact of Coronavirus on young carers aged 12 to 17 and young adult carers aged 18 to 25 was published in July 2020. They point to a steep decline in the mental health and wellbeing of thousands of young people across Scotland who provide unpaid care at home for family members or friends.
Key points: With 214 responses from across Scotland, our survey provides a base of evidence. It shows how worries relating to Coronavirus and increased isolation caused by the lockdown have affected the mental health and wellbeing of Scotland's young people with caring responsibilities. Even before the outbreak of Coronavirus, young carers and young adult carers were all too often spending significant amounts of time caring for a relative in addition to the time they needed to spend on education, work and time for themselves. Coronavirus has significantly increased those pressures.
The families of people diagnosed with dementia are commonly first-in-line caregivers. This can have a considerable effect on their lives, health, and relationships. However, few studies have focused on the children in such families. Therefore, the aim of this study was to describe how children, in their own narratives, construct themselves as subjects growing up and caring for a parent with dementia. The study applies discourse analysis. The findings show three subject positions: parent to your parent(s), orphan with parents, and time traveler stuck in time. There is a need to support these children, both as children and as young adults. More knowledge is necessary regarding the kind of support they might want or need. For health care professionals, it is important to know that it might not always be easy to ask for information or support as a child caring for a sick parent.
Objective The aim of the present study was to examine prevalence, characteristics and health outcomes among young adults (18 to 25 years) who provide informal care to family members or others with physical or mental illnesses, substance misuse or disabilities. Design The sample was obtained from a national survey in Norway from 2018 among students in higher education (the SHoT2018-study). The current sample comprise 40,205 participants, 70.2% women, mean age 22 years (SD = 1.7). Outcome Measures Participants answered questions on care responsibilities, mental health problems (The Hopkins Symptoms Checklist-25), insomnia (sleep questionnaire), somatic health (Somatic Symptom Scale-8), and life satisfaction (Satisfaction With Life Scale). Results 5.5% of the respondents reported having care responsibilities. Caring was associated with being female, single, having divorced parents, being an immigrant, and having financial difficulties. More mental health problems, insomnia, somatic symptoms, and lower life satisfaction were found among respondents with care responsibilities. Number of hours of caring was associated with negative health outcomes in a dose-response pattern. Conclusion Professionals within health care, social services and the educational system should be sensitized to the needs of young adults with care responsibilities for family members or others with illness, substance misuse, or disabilities. The negative health problems among these young adult carers (YACs) should be acknowledged, and adequate support made available.
There has been increasing research on the experience and needs of caregivers for persons with YOD, who are mainly spouses. Yet one little-explored area is their evolving parental role. As the person with YOD becomes less able to parent, the partner must take on more and more parental responsibilities. This occurs in much-changed familial context, with children often asked to assume caretaking roles and experiencing strong feelings such as grief, anger, and fear. How do the parents without YOD understand and negotiate their ever-changing parenting role, and how do their children experience it? We conducted in-depth, semi-structured interviews with four parents without YOD (coincidentally all mothers) and eight children ages 16–20 (3–18 when parent was diagnosed) regarding the changing nature of the parental-child relationship. These data were analyzed using thematic narrative analysis, in which respondents' material is closely read as it is gathered and analyzed for patterns. Three primary themes emerged. First, there are significant changes in family structures and role. Mothers increasingly assume all parental responsability. Children assume roles of carers and earners, and at times reluctant decision-making partners. Such responsabilities can feel overwhelming at times. However, the children discribed not wanting to burden mother with their feelings and experience, a second prominent theme. Finally, such muting of their experience likely contributes to mothers feeling they are managing the YOD so as to minimize the impact on their children, creating divergent experiences of the YOD on family life. Facilitating family members' articulation of what feel like “inadmissible” feelings, improving familial communication, and developing a range of support and resources are all important areas for intervention.
A number of recent studies have highlighted the challenges facing young people as a result of the COVID-19 pandemic. Like their peers, young people aged 16 to 25 who are caring for a family member or friend have experienced significant change and instability during this unprecedented period.
During the peak of the COVID-19 lockdown, Carers NSW conducted online interviews and focus groups with 28 young carers to better understand their experiences and support needs and to learn how to engage with them more effectively. This summary report includes powerful stories of young people caring for loved ones while juggling study, work, family and social responsibilities.
This report shares insights from young carers across a range of themes, including education, employment, service provision and relationships, embedding the young carer voice throughout. These insights will help to inform ongoing and future service provision, research and systemic advocacy conducted by Carers NSW and our partners and stakeholders.
A review of existing research literature (see Appendix I) and internal consultation with Carers NSW staff working with young carers, conducted in the scoping phase of this project, identified that young carers are often isolated and experience socio-economic disadvantage as a result of their caring responsibilities. However, they are often reluctant to disclose their caring responsibilities to others and commonly perceive their own needs and experiences as less important than those of the person they care for. These factors can make it more difficult for researchers and others to successfully engage with young carers.
This guidance is for commissioners, providers and others involved in the planning, shaping and delivery of support for young carers and young adult carers in transition, primarily in England. This guidance supplements the carers’ breaks guidance for adult carers. It will be of interest to commissioners within local authorities (including public health), and may be of interest to clinical commissioning groups (CCGs) and partners within both health and education such as GPs and schools. It will also be of interest to a wide range of providers – including those from the voluntary, community, private and public sectors, and not just those already providing young carers’ breaks and support.
This paper draws on findings from a qualitative study of the social wellbeing of young people caring for a close family member. The research makes a novel contribution to the international literature by examining the moral resilience of young adult carers. Focus groups or individual, semi-structured interviews were undertaken with fifteen young people in South-East England during 2018?2019. The paper explores whether young people with a seriously ill or disabled family member define and conduct themselves in moral terms and how they respond to the moral challenges of a caring life. It was found that the participants saw moral value in their caring role and their actions reflected a desire to provide compassionate care. Previous research into young adult carers had indicated that the caring role stimulated their political consciousness, but this study suggests that the role also strengthens their moral consciousness. However, designating girls as carers in early life shifts the moral responsibility to females and compounds gender inequity in caring. Hence, there is a need to address social and gender inequalities in care. In addition, healthcare professionals should recognise when statutory input is necessary to facilitate young people's broader lifeplans.
Background: Providing informal care for a relative or friend with medical or mental needs can extol a physical burden on the caregiver, including impaired aspects of sleep quality such as suboptimal sleep duration, lengthened sleep latency, frequent awakenings, daytime sleepiness, and poor self-rated sleep quality. Diminished sleep quality can worsen the health in the caregiver, including dysregulation of hypothalamic-pituitary-adrenal axis (HPA) activity. Few studies have attempted to describe sleep in young adults who provide regular informal care. This study examines subjective and objective indicators of sleep quality and diurnal cortisol rhythms among young adult caregivers relative to non-caregiving peers. We expect that caregivers will exhibit poorer objective and subjective sleep quality and greater dysregulation in diurnal cortisol indices, than demographically similar non-caregivers, and that caregivers with poorer sleep will exhibit pronounced cortisol dysregulation.; Methods: Participant self-reported sleep quality over the prior month via the Pittsburgh Sleep Quality Index and objective sleep quality was observed via wrist actigraph for three consecutive days. Diurnal salivary cortisol was also measured across the three days of actigraph monitoring.; Results: Informal caregivers exhibited more self-reported sleep disturbance and greater sleep latency than non-caregivers, as well as more objectively measured sleep fragmentation. Caregivers with a shorter sleep duration were observed to have flatter diurnal cortisol slopes than caregivers with a relatively longer sleep duration.; Conclusions: Young adult caregivers appear to be at risk for impairment in sleep quality, which in turn might impact health through HPA axis dysregulation. Longitudinal research is needed to identify these relationships across time.
Awareness of young carers' experiences and needs is low on governmental and societal levels in Denmark. This article presents findings from the first evaluation of a Danish respite programme, the Buddy Programme, which aims to provide support to young carers aged 5–15 years who experience serious, chronic or mental health problems and/or death of a parent or sibling. Over a four‐six month period, volunteer students from University College Copenhagen offer young carers the opportunity of respite through participating in ordinary activities such as play and sports. In 2017–2018, based on a child‐centred approach, we conducted a qualitative study with interviews focusing on how the Buddy programme affected the children. The interviews took place at programme start, halfway through, and after completion with 22 children and 21 parents, as well as single interviews with 20 Buddies assigned to families after completion. Three main themes were identified: (1) the Buddy programme as an activity, (2) how the Buddy Programme affected the children and (3) ending the Buddy programme and wanting to continue the friendship. Our findings emphasise the importance of fun and cosy activities that provide children with respite from the serious concerns that otherwise fill the lives of young carers. Being with a Buddy created a free space, allowing children to play undisturbed and to temporarily keep concerns and a guilty conscience at a distance. By offering friendship, Buddies provided opportunities for young carers to feel special, be seen, acknowledged and taken seriously as a child with valid and specific needs and interests. Our findings may help increase awareness of the needs and interests of young carers on governmental and societal levels.
Evidence suggests that young carers are less likely to complete or do well in secondary school compared with young people without caring responsibilities. Positive engagement at school is an important correlate of school outcomes, yet quantitative evidence on the factors contributing to young carers’ school engagement is lacking. Drawing on the results of a national school-based survey of Australian children aged 8–14 years (N = 5220) in which about 9% of the sample identified as carers (N = 465), this paper compares the school engagement of non-carers, young carers of a family member with disability, and young carers of a family member with a mental illness or using alcohol/drugs. The analysis shows that school engagement of young carers of people with disability is not significantly different from that of non-carers, but school engagement among young carers of people with a mental illness or using alcohol/drugs is significantly lower. Among this latter group, young carers who are themselves with disability report particularly low levels of engagement. The study concludes that improved support focused on young carers of people with a mental illness or using alcohol/drugs is needed to improve their school engagement.
Youth provide significant contributions to their families, ranging from completing household chores to taking care of members of the family. Researchers have examined correlates, predictors, and consequences of the variation in youth's contributions to their families. One body of work has examined family assistance—youth's help with household chores. Another has looked at youth caregivers who provide significant, ongoing care to family members with health needs. This research has been disaggregated across various theoretical models, methods, and terms, making it difficult to investigate and understand the full spectrum of youth's contributions to the family. In this article, we summarize evidence about youth's help and care for the family across a fuller spectrum of behaviors and intensity, and review the challenges and strengths of myriad methods and conceptual models. We propose a unifying approach for investigating youth's contributions to the family that capitalizes on the strengths of each discipline and prioritizes interdisciplinary sharing of resources.
Background: Students living with a chronically ill family member may experience significant pressure, stress, and depression due to their caregiving situation. This may also lead to them delaying or dropping out of school when the combination of being a caregiver and their education program are too demanding. This survey study aims to explore the consequences for students of bachelor or vocational education programs when they are growing up with a chronically ill family member and the influence of various background characteristics and risk factors.; Methods: A survey was sent to 5997 students (aged 16-25 years) enrolled in bachelor or vocational education programs in the north of the Netherlands. The content of the survey was based on a literature study and consultation with experts. Descriptive statistics, Chi-square tests, and logistic regression analyses were performed.; Results: A total of 1237 students (21%) responded to the survey. A sub group of 237 (19%) students (mean age 21(2.2); 87% female) identified themselves as growing up with a chronically ill family member. More than half (54.9%) of these students indicated that they experienced negative consequences in daily life. A significant association (OR .42, p < .02) was found for these consequences and the level of education for which attending vocational education yields a higher risk. In addition, growing up with a mentally ill family member was associated with a 2.74 (p = .04) greater risk of experiencing negative consequences in daily life compared to students living with a family member with a physical disorder or multiple disorders.; Conclusion: Since a substantial number of students growing up with a chronically ill family member indicate serious physical, mental, and social consequences as a result of this care situation, awareness for this specific age-group is needed. Students with a mentally ill family member and students undertaking vocational education appear to be especially at risk. Further research is required in order to gain insight that is more in-depth into the exact type of problems that these students encounter and the specific needs that they have regarding support.
Background: Children and adolescents who provide care, assistance or support for a chronically ill family member are called young carers. While there is a growing body of research about their specific situation, needs and impact of caring, only very few studies provide information on prevalence rates.; Objectives: The aim was to provide prevalence data for young carers in Germany, and to describe and quantify the nature and extent of their help.; Design: A cross-sectional study.; Settings: Data collection took place between 2016 and 2017 in 44 secondary schools (fifth to 13th grade) in North Rhine-Westphalia, Germany.; Participants: A total of 6313 students aged from 10 to 22 years participated in this study. They represent 0.5% of the basic population.; Methods: Based on the results of a preliminary qualitative study, a standardised electronic questionnaire was developed, which comprised four subject areas: socio-demographic information, general daily aids, health-related quality of life and chronic illness within the family. Statistical analyses included chi-square tests for nominal data and univariate analyses of variance for metrical data together with 95% confidence intervals.; Results: 19.6% (n = 1238) of all respondents state that someone in their family needs help due to a chronic illness. Nevertheless, not all of them are involved in caring activities. The prevalence of those defined as young carers in this study is 6.1% (n = 383), 64% are girls. They take on a wide range of activities. In addition to domestic work, they help their ill relatives with mobility, dressing and undressing, medication, feeding, personal hygiene and with intimate care.; Conclusions: The data provide a good insight into the situation of young carers. The prevalence rate is higher than expected. It refers to the social relevance of this topic and the need for further investigations.
Aims and Method: To review the literature on the emotional and mental health needs of young carers of parents with mental illness and the extent to which such needs are recognised and supported by professionals. Three databases were systematically searched from 2008 to 2018, and five studies met the inclusion criteria.; Results: The key findings were that young caregivers had a significantly higher dose-response mortality risk than their peers; were at increased risk of mental health difficulties, especially where the ill family member was a parent and had mental illness or misused substances; were overlooked by professionals owing to a lack of awareness; but could derive benefits from their caring role when appropriately supported.; Clinical Implications: Young carers are at increased risk regarding emotional and mental health needs; this risk could be mitigated by professionals recognising the young carer's role and including them in their parent's treatment plan.
Internationally, there is a growing body of knowledge about young carers, but there is a lack of research about their experiences in later life and about how their caregiving responsibility influences their transition into adulthood and affects them in their future life. The aim of this literature review is to present the experiences of young adult carers in the phase of life in which many decisions are made for one's own life as an adult. In addition, the retrospective perspective of former caregivers will be described, too. Thirteen studies, published in English or German, were included after critical appraisal. Of these, six focused on the phase of transition and seven gave their attention to the retrospective. The analysis was performed explorative in line with the Grounded Theory Method. The findings of the literature review provide insights into the family situations at the time of caregiving and into the tasks of former young carers. They also impart the positive and negative effects. Former young carers assumed responsibilities they did not want to take over. They often took on the parental role. In retrospective, especially older female siblings felt that they had to change roles, often taking over the mother's role. In this role, they sometimes felt overwhelmed and left alone. Adult former carers feel mentally less healthy and insufficiently strengthened due to the long-term care or support they have given. But there are also positive effects pointed out by former young carers. Many of them are distinguished by outstanding social skills in adulthood. They feel well prepared for life through the care experiences and appreciate the practical skills they have learned. The results of this literature review show that the caring experiences influence the life of former young carers and determine their further life course.
A substantial body of research documents the impact of informal care on adult caregivers' wellbeing, but little is known of the experiences of young carers who attend postsecondary schools in Canada. Despite the estimated 1.25 million young people ages 15–24 assuming caregiving roles in Canada, young carers are a hidden and largely unsupported demographic in Canada. To gain a better understanding of young caregiving in Canada, the current study explores the role of communal orientation, benefit-finding, life satisfaction, and family satisfaction among young student carers. Further, we examine the mediating role of diverse coping strategies to better understand how communal orientation may be associated with wellbeing. One hundred and thirty-seven participants were recruited from two Canadian universities, and data were collected through online surveys. Results showed that while communal orientation and the use of coping strategies were positively associated with benefit finding, communal orientation was negatively associated with life satisfaction and family satisfaction. Use of instrumental support mediated the association of communal orientation with benefit finding. The findings suggest a communal orientation may help young carers find benefit in the caregiving role by enhancing the use of instrumental support coping strategies.
Recreational camps for children play an important role in coping with the illness of a family member. This paper aims to describe the experience of a young-carer summer camp in Austria from the perspective of the attending children who care for a parent with severe physical illness as well as their diagnosed and non-diagnosed parents who remained at home. Nineteen qualitative interviews with children and their parents were conducted and analyzed according to qualitative summarizing content analysis procedure. The findings show a familial decision-making process and the ambivalent expectations and feelings of the children prior to the camp. The camp itself is a place where children feel looked after and where they can enjoy adventure activities. It is also a place where they are among themselves and can make friends and talk about their feelings in a secure and private environment. During the camp, the remaining parents try to spend most of their time focusing on themselves and their partnership. The camp also gives the children a glimpse of another way of living with new freedoms that cannot be maintained when they come home. These findings indicate that camps can make an important contribution to addressing young carers’ needs but should also initiate a debate on more sustainable relief measures for children with care responsibilities.
Darling et al discusses the UK's Children and Families Act 2014, Section 96 which defines a young carer as a person under 18 who provides or intends to provide care for another person. A survey in 2018 asking 925 children in England to outline if they provide care, and to describe the care provided and to whom, reveals the extent of caring by children is much higher than previous estimates. If results of the research reflect the country as a whole, then there are thousands of secondary school children (aged 11 to 16 years) in England caring for an individual at home, and that approximately 7% of young people have a significant caring role in the home for an ill or disabled relative.
Since 2002, thanks to extensive lobbying and representation by the family carers movement, there has been a formal state-endorsed approach to quantifying the number of individuals in the Republic of Ireland who are providing unpaid care to a relative or friend. Initially, the Census of Population provided this data every five years. More recently a number of other large-scale surveys have been undertaken in an attempt to capture the prevalence of family caring in Ireland. This document seeks to summarise this new data and draws on the population data published by the Central Statistics Office in August 2019.
Many children, adolescents, teenagers, and young adults have caring responsibilities for parents and family members. These young carers and young adult carers are present in every country. Their responsibilities include domestic chores as well as intimate personal care and other forms of helping which are generally seen as the responsibility of adult professionals. First, this article provides an overview and critical perspective on young carers research. Research suggests that 2–8% of children and young people are carers and that the caring role has an impact on their education, health, wellbeing, social opportunities and employment prospects. Various countries have responded differently with regards to policy: some have well developed services and recognition in law whilst others are only just beginning to recognise the problem. Second, we discuss the issues and challenges for research and propose a new agenda for the development of policy, research rigour, more theoretical sophistication, and a greater awareness of the need for interdisciplinary and multiagency working. Furthermore, we call for participatory and action led research that can provide greater insights into the lived experiences of young people, their needs and how these can be met.
Unpaid carers are the backbone of our society who often go unrecognised for their dedication and compassion. They face a range of challenges as they attempt to juggle their work-life-care responsibilities. That’s why we decided to commission YouGov to conduct a UK-wide research project focused on identifying gaps in support and sought to understand the views of unpaid carers.
The impacts of loneliness, poor mental and physical health, financial worries and a lack of flexibility to learn or train are placing unpaid carers under increasing strain.
When carers were asked about their support needs, a sizable majority (74%) of carers felt that further support in some form would be useful to them, with a common desire for emotional support (33%). Carers also sought information and advice about the support available, respite care, and finances. Our report also found that there was a need for advice about maintaining good mental and emotional health, shining a light on the often unexpected levels of stress, isolation and despondency felt by unpaid carers.
Children who have parents with any kind of illness may become young carers who take a responsibility not expected of children for household tasks, or personal or emotional care for parents and siblings. So far, little is known about children in Sweden who are at risk of becoming young carers. The aim of this article is therefore to explore the extent and impact of children's caring activities as reported in a pilot study by a sample of children in Sweden. A number of international questionnaires measuring the amount of caring activities, impact of caring, quality of life, and psychological well‐being were translated and combined into a survey. The pilot survey was completed by 30 children 10–18 years of age. Also, when completing the survey, the children were interviewed concerning their experiences of caregiving. The participants report on a group level emotional symptoms such as fear and nervousness above the clinical cut‐off value. They also rate a lower level of caring compared with findings from the United Kingdom, but they report a higher degree of negative impact of caring than young carers in the United Kingdom.
The prevalence of terminally ill patients, who die at home, is increasing. The aim of this study was to address the meaning of being young adults, who were the caregivers of their dying parents. In-depth, semistructured interviews were conducted with 14 Israeli Jewish young adults, who had been the primary caregivers for parents who had cancer and eventually died at home. Three themes emerged: (a) "I was Chosen and was led into that situation": modes of taking on and performing the role of a caregiver, (b) "My life was on hold": the experience of performing the caregiving role, and (c) "I underwent . . . the real school of life": caring for the dying parent as an imprint on self-development. Participants integrated compassionate caring into their identity, reflecting an empowering encounter of young carers with their dying parents as a process of growth in the face of harsh, stressful experiences.
Aims: When experiencing mental health difficulties, university students turn to their friends for support. This study assessed the consequences of caregiving among a university sample, identifying predictors of caregiving burden among students. Methods: A total of 79 students with experience of supporting a friend with mental health difficulties were recruited through a UK student mental health charity to complete an online survey. Alongside qualitative data, the online survey used the Experience of Caregiving Inventory and the Involvement Evaluation Questionnaire as measures of the consequences of caregiving. Results: Students supporting friends, housemates or partners were found to experience significant consequences of caregiving. Frequency of face‐to‐face contact and duration of illness predicted more negative consequences of caregiving, but these relationships were not straightforward. The presence and intensity of professional support did not influence the experience of caregiving. Conclusions: The study suggests that the impact of supporting friends with mental health difficulties is not insubstantial for students. Broadening the network of informal social support may help improve the experience for students supporting a friend, but currently, contact with professional services appears to have a limited effect.
Purpose: The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF). Design: This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers. Methods: Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes. Findings: Five major themes were identified: caregiver resources, role management, caregiver–parent relationships, filial responsibility , and personal benefits and challenges. Conclusions: These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.
Purpose The purpose of this paper is to examine the structural relationship between the emotional and social support provided for individuals with caring responsibilities for elderly relatives, and the quality of care actually delivered. In addition, the moderating role of gender is explored. Design/methodology/approach A quantitative research design was utilised in which 200 usable questionnaires were collected from 250 respondents comprised of young adults who adopt a caregiving roles in respect of elderly parents or other close elderly relatives. The structural equation modelling (SEM) technique was selected for data analysis, and the Analysis of moment structure software version 21 was used. Findings The SEM results revealed that emotional support for caregivers was the most important predictor affecting the intergenerational care of multi-ethnic elderly people. Additionally, a moderation analysis revealed that the relative influence in this connection was more pronounced among female caregivers. An increase in the emotional support received by the recipient was found to enhance the level of the relationship, and to result in closer intergenerational ties in the care of the multi-ethnic elderly. Furthermore, the receipt of social support positively influences the judgement of an individual, and expands that person's social network, which can subsequently have a favourable impact on the way in which one fulfils their caring role. The significant effect of social support provided for intergenerational caregivers in the context of the multi-ethnic elderly was higher in the group of male caregivers than in the group of female caregivers. Practical implications This study sends a strong message to policy-makers in developing countries about the need to consider within their National Policy for the Elderly, improvements in the national action plan for a holistic and integrated approach to ensure the well-being of caregivers and the elderly. Originality/value The results of the study help young adults to understand the importance of emotional and social support in boosting their relationships with parents and families and motivating intergenerational efforts in the care of the multi-ethnic elderly. Harmony within families is an important ideal in any circumstance, but in the scenario of ageing family members it may be even more essential to try to achieve it.
This research contributes a first-hand account of the experiences of youth’s substantial unpaid familial caregiving in the context of long-term illness, disability or problems related to alcohol and/or other drugs. A qualitative focus group methodology explored the benefits and challenges of youth’s caregiving via a sample of 15 youth caregivers (or young carers) from both the Greater Toronto area and the Niagara Region of Southern Ontario. The findings reveal evidence for a unique “young carer penalty,” a term coined by this research to build upon the gendered “care penalty” experienced by adult women (especially mothers) when performing care work.
Study aims were to explore differences in predictors of respite care use between older (aged 65+) and younger caregivers (aged 18–64 years), and associations between caregiving load and respite care use using multivariate logistic regression analysis and unpaid caregiver (n= 10,500) data from the 2009 California Health Interview Survey. Caregiving load comprised number of care recipients, weekly hours in caregiving, and caregiving duration. Variables with a significant association with respite care for older caregivers were female gender, income, and health insurance. For younger caregivers, respite care use associations were with ethnicity, caregiving relationship, education, and availability of substitute help.
Young carers often provide care because they have always done so for the people they care about, and because they believe that the care recipient could not manage without them. For many young carers, looking after their own health, combining caring with schoolwork, getting access to training or having time off from carer duties can be a major challenge (Department of Health [DH], 2008). This paper presents evidence from a literature review that builds a substantial body of knowledge to suggest that community nursing teams must develop supportive approaches towards increasing an awareness of young carers' needs. Identification of young carers by community nurses will encourage referral to appropriate services and agencies. The aim of this study was to appraise, for the Queen's Nursing Institute, the published evidence base to explore young carers' needs and how community nurses could support young carers' needs in England. Databases were systematically searched. Title and abstract reviews found 606 potential studies (see Figure 1), which were identified around topics corresponding to the headings of three distinct categories: mental health and wellbeing; education needs and resilience; and development of coping strategies. Full-text review resulted in 26 publications that met the study's inclusion criteria. The results of this work show that there is a scarcity of publications around the community nursing needs of young carers. However, studies consistently report young carers are hidden from view and have a significant requirement for support and information. Therefore, effective ways of delivering community nursing support and information to young carers needs to be developed by service providers as a matter of priority, and implemented to give the support that young carers need.
Research has commonly explored siblings of people with disabilities’ roles in care for their brothers or sisters with disabilities. Social policy has also commonly framed young adult siblings of people with disabilities as ‘young carers’. However, there has been less consideration of the implications of care for the relationship shared between young adult siblings with and without disabilities and of what this may mean for social policy. What do different types of care mean for sibling relationships? What are the relational and social policy implications of care between siblings? Drawing on a qualitative study of 25 siblings with disabilities and 21 siblings without disabilities aged 15–29, this article explores how young adult siblings perceive, talk and act with regard to the different types of care enacted between them. The article identifies how, during young adulthood, some types of care can endanger siblings’ capacity to feel like siblings and discusses ways that young adult siblings talk and act in order to – as best they can – keep their role within the bounds of a normative sibling relationship. The findings are discussed in light of implications for social policy, particularly with regard to seeing siblings of people with disabilities as ‘young carers’.
This article uses data from the 2015 Young Life and Times and Kids' Life and Times surveys to discuss the methodological challenges of identifying young carers in surveys. The article considers how children's interpretation of 'caring' might not correspond with the definition of 'young carer' that adults wish to capture. This article discusses how prior consultation with young carers to improve understanding did not have the outcome anticipated. It advises that consultation should be carried out with young carers and their non-caregiving peers together, allowing space for 'co-reflexive practice'.
Caring for dependent relatives has become a normative challenge for families in the USA and throughout the world. The study objective was to examine the relationship of family caregiving responsibilities and the mental health and well-being of individuals, ages 18–24 years, referred to as emerging young adults. It was hypothesized that young adult caregivers with past and present responsibilities would report significantly more symptoms of depression and anxiety, have lower self-esteem, and use less adaptive coping styles than non-caregiving peers. The sample consisted of 353 undergraduates (81 past caregivers, 76 current/past caregivers, and 196 non-caregivers). Caregivers were also evaluated in terms of care recipients, duration of caregiving, tasks, and hours of effort. Caregivers had significantly higher levels of symptoms of depression and anxiety than non-caregivers. Research to clarify how caregiving interacts with other stressors in emerging young adults and influences behavioral health should be a priority.
Due to the focus of studies about caregiving responsibilities on older caregivers, there has been a deficit of research on young caregivers. We aimed to investigate the association between caregiving and health/mortality risk in young caregivers when compared with their noncaregiving peers and older caregivers. A census-based record linkage was implemented, linking all residents enumerated in the 2011 Northern Ireland Census with subsequently registered deaths data, until the end of 2015. Among those aged 5–24 years at the 2011 Census, approximately 4.5% (19,621) of the cohort reported that they were caregivers. The presence of a chronic physical condition (such as mobility difficulties) and/or mental health condition was measured through the Census; all-cause mortality was assessed by official mortality records. Young caregivers were less likely than their noncaregiving peers to report chronic mobility problems (adjusted odds ratio (OR) = 0.84, 95% confidence interval (CI): 0.73, 0.96) but more likely to report chronic poor mental health (adjusted OR = 1.44, 95% CI: 1.31, 1.58). They also differed from older caregivers (P < 0.001) and were at significantly higher mortality risk than their peers (adjusted hazard ratio = 1.54, 95% CI: 1.10, 2.14). A dose-response relationship between hours devoted to caregiving duties and mortality risk was evident. We found that young caregivers were at significantly increased risk of poor health outcomes.
Research has shown that young people who care for parents and relatives (young carers and young adult carers) are at greater risk of mental and emotional difficulties and are more likely to do badly at school or college. To explore the difficulties faced by young adult carers (aged 14–25) in the UK, an online survey was conducted. Almost half (45%) of the 295 respondents reported having a mental health problem. The relationship between the extent of caring and perceived mental health problems and the impact of caring responsibilities on work and education were investigated.
Introduction: Children take on the role of family caregiver throughout the world. No prior published research exists surrounding the particular circumstances of the task of medication administration and management by these youth, which was explored in this study. Methods: A series of focus groups were conducted using semi-structured interviews of 28 previously identified caregiving youth ages 12–19 years old who live in the United States. Data analysis followed guidelines of conventional content analysis. Results: The following categories emerged about youth caregivers handling medications: 1) tasks involve organizational and administrative responsibilities; 2) youth have varying degrees of knowledge pertaining to these medications; 3) most share responsibility with other family members; 4) they lack formal education about their responsibilities; 5) multiple challenges exist relating to this task; 6) managing medications is associated with emotional responses; and 7) possible safety issues exist. Conclusions: These responsibilities represent a unique hardship and merit support and research from the medical, healthcare, legislative, and public health communities, among others.
There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14-25 years (N = 13), from Western Australia through in-depth semi-structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes. "Lessons from the experience" articulates the perceived benefits of the role and the themes: "navigating competing demands," "desire for normalcy" and "lost in the system" capture the struggles and complexities associated with being a young carer. Although there are challenges to being a young carer, it is something that young carers report can be beneficial and something that is done for those they love.
Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS. Objectives: To assess the feasibility of a multidisciplinary young caregiver group training protocol for children and youth who provide care to a family member with ALS. Method: Peer group experiential young caregiver model based on theories of self-management and self-efficacy. Training conducted by a multidisciplinary team of therapists in ALS (PT, OT, Speech and social work), as well as assistive device vendors. Demographic data, caregiving tasks and evaluations were collected. Results: The model is feasible for both youth and therapists. Youth found benefit, skill acquisition, and mastery by asking questions, teaching back skills to the group and engaging with peers. Conclusion: This project demonstrates young caregivers will participate in training, and engage with “like” peer group. Future projects will focus on developing a structured survey and observation, testing efficacy in larger groups.
Rationale Previous studies have shown that children may take on higher extents of caring activities if their parents are affected by severe illness or disability, especially when their parents lack access to formal and informal care. Aims and objectives This study examined the extent and nature of caring activities done by patients’ children; differences in caring activities between different types of parental illness; factors associated with caring activities. Design An explorative cross‐sectional multicentre study. Methods Parents as patients in specialised healthcare services, and their children, were recruited from five health trusts in Norway. The sample included 246 children aged 8–17 years and their 238 parents with severe physical illness (neurological disease or cancer) (n = 135), mental illness (n = 75) or substance abuse (n = 28). Main outcome measure Multidimensional Assessment of Caring Activities (MACA‐YC18). Results A large number of children with ill parents are performing various caring activities. Increased caring activities among children due to their parent's illness were confirmed by their parents, especially with regard to personal care. We found no significant differences in the extent of caring activities between illness types, but there were some differences in the nature of these activities. Factors significantly associated with the extent and nature of caring activities were as follows: better social skills and higher external locus of control among the children and poorer physical parental health. Parent's access to home‐based services was limited. Study limitations In recruitment of participants for the study, a sampling bias may have occurred. Conclusion To promote coping and to prevent inappropriate or extensive caring activities among children with ill parents, there is a need for increased access to flexible home‐based services adapted to the type of parental illness.
Textile-based crafts were used to engage young carers (under 18s providing care for another person) and accompanying adults in learning about underlying chemistry concepts, in an economically deprived area of northwest England; the region of the United Kingdom with the highest number of young carers. This science-crafts collaboration was supported by the Royal Society of Chemistry Outreach Fund and a British Science Week Community Grant. Feedback from participants indicated strong positive impacts on interest in and understanding of chemistry and its relevance to everyday life, social benefits, and, for accompanying adults, increased confidence in engaging young people with learning about chemistry.
Background Most young carer studies on parentification, resilience and coping concentrated on child carers up to age 18 years, whereas the group of young adult caregivers (18–24 years) has been neglected. In our study, we focused on these young adult caregivers, who are in a life phase in which young people usually are distancing themselves from their families and are striving for autonomy and freedom. Aim To explore young adult carers’ perceptions of parentification, resilience and coping compared to young adult noncarers. Design Cross‐sectional. Methods In 2014/2015, data were collected on 297 healthcare students from a school for vocational education and a university in the Netherlands. A fully structured questionnaire was used. Young adult carers were compared with young adult noncarers on parentification, resilience and coping. Results Fifty‐six students identified themselves as a carer: 40 vocational education students and 16 university students. Carers scored significantly higher than noncarers on three out of six parentification dimensions. No differences were found for resilience and problem‐focused coping behaviour, whereas results for emotion‐focused coping demonstrated a higher score for the carers compared to the noncarers. Conclusion Although it is important to take care of the needs of all young carers, special attention should be given to those who are at the start of their adult lives, undergoing extensive changes and taking major decisions on study and career issues. Home‐care professionals and school counsellors should be able to recognise this group and their needs and activate support from specialised services and significant others.
Rationale: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. Objectives: (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. Design: This was mixed method interviews in study one informed measure development in study two. Inclusion criteria were as follows: having a parent with a chronic condition and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16 18.65, SD = 1.25). Main outcome measures OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Results: Interviews communicated that the impact of their parent's condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. Conclusions: The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately. References
In ‘Western’ contexts, school attendance is considered central for an ‘ideal’ childhood. However, many young people engage with home roles that conflict with school expectations. This article explores perceptions of that process in relation to two home activities – language brokering and young caring. We interviewed 46 young people and asked them to reflect on what the teacher would think when a child had to miss school to help a family member. This article discusses the young people’s overall need to keep their out-of-school lives private from their teachers.
Councils in England receive 1.8 million new requests for adult social care a year – the equivalent of nearly 5,000 a day – and despite some helpful extra funding there is still a £3.5 billion funding gap facing adult social care by 2025 just to maintain existing standards of care. Despite these tremendous pressures this publication demonstrates current examples of how councils support adult and young carers locally in a range of different ways from respite breaks to discount cards to tailored information and advice.
The following case studies show how local authorities are supporting carers across England. It identifies the challenges authorities face and how they address them, often in partnership. It highlights the impact of services and lessons learned that will be of interest to all councils. The case studies were compiled following discussions with the lead officers and members in the areas.
An online survey of children in school grades 4–9 (mostly aged 10–15) was conducted in order to determine the prevalence of young carers in Switzerland using a 2-stage stratified sampling approach. 4082 respondents were drawn from 230 schools. A total of 3991 respondents were included in the analysis and of these 307 (7.7%) were identified as young carers. The population estimate of prevalence was 7.9 per cent. This suggests that there are around 38 400 young carers in school grades 4–9 in Switzerland. Extrapolating to the 9–16 age group gives a figure of almost 51 500.
Although there is already general recognition of the fact that many relatives provide unpaid care for family members, there is still little awareness that children, adolescents and young adults under 25 also provide such care. Until recently, the situation of young carers and young adult carers, as those young persons are referred to in international research, has not been in the focus of professionals, research and the public in Switzerland. Between September 2015 and October 2016, 30 interviews in seven cantons were conducted with 16 young carers aged 10–17 and 14 young adult carers aged 18–25. The interviews were recorded, transcribed and analysed following a grounded theory approach. This paper now presents the first qualitative data on Swiss young carers and young adult carers. It explores their sociodemographic backgrounds, the nature and intensity of caring tasks they carry out, their pathways into caring as well as the role of communication with family members, extended family, professionals and peers. Our findings provide a first insight in the lives of young carers and young adult carers in Switzerland and illustrate, as well, the challenges they face.
Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers’ personal needs. However, knowledge and understanding are limited regarding the needs of young carers’ families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles. A qualitative research approach was used to investigate the needs of young carers’ families in terms of managing daily caring demands. Nine family interviews were conducted with 34 individuals including 15 young carers during spring/summer 2015 in eastern Austria. Open and axial coding procedures and constant comparison method were used to analyse the data. The findings revealed that young carers’ families need to live in accordance with their inherent family logic. Family logic is generated and maintained via (i) family reciprocity that involves the natural help within the family, (ii) individual developmental space that allows family members to be perceived and act as individuals and (iii) network cooperation that offers formal and informal support and recognition from society in general. The findings contribute to understanding how families with caring children manage the caring demands of their everyday lives. The findings also indicate that formal support for families with young carers should consider the individuality of caring arrangements with respect to the holistic and personal needs and avoid stigmatising families that integrate children into caring.
It is more than 25 years since the critical dialogue on young carers was played out in the pages of this journal (see Morris and Keith, 1995; Aldridge and Becker, 1996). Since that time, research evidence has given us a clearer picture of the extent of young caring in the UK and its consequences for children and families, including two new national studies that focus on the prevalence and impact of young caring in England. The introduction of the Care Act, 2014 and the Children and Families Act, 2014 also places new duties on professionals to identify and support young carers and their families. However, this increased focus, not only in policy and practice but also in terms of public awareness, has created a number of dilemmas and challenges for health and social care professionals, whose duty it is to identify and support young carers. These challenges, to a large extent, both mirror and advance issues raised in the original dialogue on young carers in the mid-1990s. They centre on the drive to generate data on the numbers of young carers to support policy directives and service delivery and, some have argued – in the current climate of serious fiscal retrenchment and cuts to youth services – on promoting the needs of one group of vulnerable children and young people over other groups of children in need. This article considers some of these challenges and dilemmas.
In Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation.
The project is comprised of three stages:
1. A national Swiss-wide online survey to examine awareness of the issue of younger carers amongst professional populations in the education, health and social services sectors;
2. An online survey of 4800 Swiss pupils in schools using standardised instruments to identify the proportion and characteristics of pupils who are carers; and
3. Semi-structured interviews with 20 families comprising family members with care needs and younger carers, to consolidate and validate the other stages of the study; and to hear directly from care-dependent family members and younger carers about their experiences of the issues identified in the surveys and in previous published research.
The needs of younger carers and their ill and disabled family members in Switzerland have not been systematically investigated. This will be the first study in the country to investigate these issues and to develop evidence-based recommendations for policy and practice, drawing also on international research.
The present study therefore fills an important national and international research gap. It will collect important data on the awareness, extent, kind and impact of caring amongst children and young people in Switzerland, and cross-link these findings with robust evidence from other countries. The study will reveal (a) the extent of awareness of the issue of young carers amongst medical, social, health, educational, and other groups in Switzerland; (b) the proportion and number of young carers amongst a normative child population, and what these young carers ‘do’ in terms of their caring roles; and (c) direct accounts by families of their care-giving and receiving experiences.
While political and public interest in providing support for family carers is growing, so called young carers and young adult carers—young persons under the ages of 18 and 25 respectively—mostly remain unrecognised. Yet, this vulnerable group is in need of special attention and support from professionals in order to get along with the situation of an ill family member and the caring duties they perform. This paper presents the results from a focus group study on the level of awareness among professionals from healthcare, education and social services concerning the topic of caring children, adolescents and young adults; and on the practice tools they consider necessary and helpful in order to support young carers and young adult carers. Twenty‐seven professionals from the German‐ and French‐speaking parts of Switzerland participated in five focus groups. The focus groups were recorded and transcribed verbatim, and the transcripts were analysed using qualitative content analysis. Our findings show that the professionals have a low level of awareness of the issue of young carers and young adult carers and also highlight the professionals’ willingness to engage with the subject. The results also show that professionals consider that practice tools (such as standardised questionnaires and check lists) could be important devices in providing support for young carers and young adult carers. These tools could be helpful in identifying this group, enabling them to identify themselves as such, and would ensure that they received appropriate support.
FACS development of the NSW Carers Strategy (the Strategy), with assistance from the Ministry for Health and Carers NSW.
Information about the implementation of the Strategy will be published on this page regularly, so please come back to find out what FACS and our partners have been doing for carers. Links to our latest news
The reality for many families where there is chronic illness, mental health problems, disability, alcohol or substance misuse is that children under the age of 18 are involved in caring. Many of these children - known as 'young carers' - will be providing regular and significant care, either episodically or over many years, often 'hidden' to health, social care and other welfare professionals and services. These children have most often been invisible in social policy and professional practice. What are the reasons why some countries recognize young carers as a priority for social policy while others (most) do not? What are the key factors that influence a country?s awareness and responses to these children? This article provides an original classification and analysis of country-level responses to young carers, drawing on published research, grey literature, policy documents and the authors? extensive engagement in policy and practice networks for young carers and their families in a wide range of countries. The analysis identifies two of the key factors that influence the extent and nature of these policy responses, focusing on the importance of a reliable in-country research base and the contribution of influential national NGOs and their networks.
The article reviews the report "National Mental Health Development Unit 2010" highlighting the importance of involving carers particularly in crisis resolution and home treatment teams (CRHT), in managing medicines during a mental health crisis. The authors note the report's recommendation of developing training packages to help carers understand issues and enhance their understanding of mental health conditions and treatment options. They also recommend investigating the needs of young carers.
This article draws on research with children who provide care for parents with serious mental health problems and signals ongoing research that uses photographic participation methods with these groups of vulnerable children. The intention of this article is to highlight the need to move away from popular and simplistic representations of children with caring responsibilities (young carers) as victims of their parents’ illnesses, as ‘little angels’ whose caring work is condoned through rewards or as (exploited) informal domestic workers whose childhoods are inevitably compromised by the caring activity they undertake. Recommendations are made for generating deeper understanding about the lives and needs of children who are affected by parental impairment that is congruent with the thrust of current UK policy, Every Child Matters and the 2004 Children Act.
Book Description: Little is known about the experiences of children living in families affected by severe and enduring mental illness. This is the first in-depth study of children and young people caring for parents affected in this way. Drawing on primary research data collected from 40 families, the book presents the perspectives of children (young carers), their parents and the key professionals in contact with them. Children caring for parents with mental illness makes an invaluable contribution to the growing evidence base on parental mental illness and outcomes for children. It: · is the first research-based text to examine the experiences and needs of children caring for parents with severe mental illness; · provides the perspectives of children, parents and key professionals in contact with these families; · reviews existing medical, social, child protection and young carers literatures on parental mental illness and consequences for children; · provides a chronology and guide to relevant law and policy affecting young carers and parents with severe mental illness; · makes concrete recommendations and suggestions for improving policy and professional practice; · contributes to the growing evidence base on parental mental illness and outcomes for children and families.This is the first in-depth study of children and young people caring for parents affected by severe and enduring mental illness. Drawing on primary research data collected from 40 families, the book presents the perspectives of children (young carers), their parents and the key professionals in contact with them.
With a growing body of research on the situation of adult family caregivers in Germany, hardly anything is known about the situation of children who are involved into the care of their relatives. This literature study is part of a research project that intends to close this gap. Primarily, English literature of the last 15 years was analysed to gain insight into specific characteristics of young carers and their families. There is no standard definition of young carers. The prevalence of young carers has been underestimated for a long time; for Great Britain it is 1.5% of all children under the age of 18. Children provide caregiving tasks at any age, and the amount of their help grows with their age. The majority of young carers live in single-parent families, and the single parents are mostly mothers. More than half of the family members in need of care suffer from chronic illnesses that affect the body. There is a wide range of caregiving tasks described in the literature; young carers do the same as adult informal carers. However no uniform categorical system could be found, which makes comparisons between studies almost impossible. This might be due to a lack of a theoretical framework in most of the studies. Since it can be assumed, that children in Germany may become young carers as well, their situation needs to be studied under the specific circumstances of the German health care system.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North West region. In 2001 there were 722,122 carers in the North West region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North West region.
Tara Purdy never dreamed she would one day see her articles in print. But she was one of the lucky ones whose article was chosen to appear in the pages of an annual glossy magazine.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the West Midlands region. In 2001 there were 556,689 carers in the West Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the West Midlands region.
The number of young carers in the UK is increasing. The official figure is 175,000 but this is likely to be a massive underestimate.
Barnardo’s, the children’s charity, has produced a revised version of its resource pack, Keeping the Family in Mind, after the first 500 packs sold out.
This compendium of good practice and carers and young carers stories accompanies Caring Together and Getting it Right for Young Carers. Earlier in the year the Scottish Government invited local authorities, Health Boards, the Third Sector and other organisations in Scotland to submit examples of good practice about support for carers and young carers. They also invited personal ‘stories’ from carers and young carers. Many examples and stories were received and these form the subject of this compendium produced by the Scottish Government and the Convention of Scottish Local Authorities (COSLA). The compendium contains 45 examples of good practice and 24 carers’ and young carers’ stories. Available online only.
This paper reports on a research study which explored the worries and problems of young carers in Edinburgh. Sixty-one young carers took part in the study, conducted between April and June 2002. Findings indicate that young carers identify significant worries and problems in relation to their well-being, and that these come over and above any 'normal' adolescent difficulties. It is suggested that these findings may have important implications for young carers' mental health, now and in the future, and contain important lessons for child and family social work in general.
This consultation seeks the views of interested parties on the draft Young Carers' (Needs Assessments) (England) Regulations to put into effect Section of the Children and Families Act 2014. A local authority must assess whether a young carer within their area has needs for support and, if so, what those needs are, if - (a) it appears to the authority that the young carer may have needs for support, or; (b) the authority receives a request from the young carer or a parent of the young carer to assess the young carer's needs for support. The draft regulations set out: the matters to which a local authority must have regard in carrying out a young carer's needs assessment; the manner and form of a young carer's needs assessment; the matters which a local authority must take into account when carrying out a young carer's needs assessment; and, the definition of the term 'whole family approach'. The consultation closes on 26 January 2015.
Background: In contrast to a growing body of research on the situation of adult family care givers, in Germany hardly anything is known about the situation of children and teenagers who are involved in the care of their relatives.
Methods: In this Grounded Theory study 81 semi structured interviews have been carried out with children and their parents in 34 families, in which one member is chronically ill. 41 children and 41 parents participated and the sample is heterogeneous and diverse.
Results: On the one hand, there is the phenomenon 'keeping the family together", which describes how families themselves cope with the chronic illness and also, which tasks to what extent are being shifted and redistributed within the family in order to manage daily life. Influencing factors, the children's motives as well as the impact on the children also belong to this phenomenon. The second phenomenon 'to live a normal course of life' describes concrete wishes and expectations of support for the family to manage the hindered daily life. These two phenomena linked together constitute the 'model of experience and construction of familial care, in which children take over an active role'.
Conclusion: It will be discussed, that the more families are in dire need of support, the more their distress becomes invisible, furthermore, that management of chronic illness is a process, in which the entire family is involved, and thus needs to be considered, and finally, that young carer's relief is not possible without relief of their parents.
Although recent initiatives in Australia have attempted to respond to the needs of children and young people with care responsibilities, many continue to be unable to access responsive supports. A qualitative, exploratory study was conducted to identify the current needs and barriers to services for young carers and their families in Canberra, Australia. This paper focuses on a range of family, service and systems level issues that impede young carers' access to services. The findings are based on semistructured, face-to-face interviews conducted with 50 children and young people with care responsibilities. Purposive and snowballing sampling were used to recruit the sample. Peer researchers were involved in the development of the research parameters and conducted and analysed interviews. Young carers in this sample reported high levels of need but low levels of support provided formally and informally by their extended families and the service sector. Major barriers to support included reluctance within families to seek assistance for fear of child removal, negative intervention and increased scrutiny; the families' lack of awareness of available services; a lack of flexibility and responsiveness to the holistic needs of families; and a lack of service collaboration. The importance of recognising the specific needs of each member within the family unit was particularly highlighted as was the need for responsive and co-ordinated service supports.
The article discusses the call of six leading charities for teaching professionals to take note of the huge number of young carers and young adult carers who are providing practical and emotional support to their sick or disabled family members and show how they are building carer-friendly communities. The charities, during Carers Week 2015, highlighted the lack of identification of young carers and young adult carers which leaves them without support.
This strategy sets the government agenda for supporting carers over the next 10 years ranging across the span of government’s responsibilities. Short-term changes are to be implemented over the next three years, and longer-term priorities are identified for the next 10 years. The strategy addresses breaks, personalisation of services, income, information and advice, the workplace, training for the workforce, access to employment, emotional support, the health of carers and the specific needs of young carers. . The strategy is based on the views and concerns of carers themselves, drawn from consultation across the country.
The aim of this meta-synthesis was to explore young carers' accounts of caring for a family member with an illness, difficulty or disability, and to promote a phenomenological understanding of their experiences. A meta-ethnographic method of meta-synthesis was adopted, utilising the process of reciprocal translation to synthesise 11 qualitative studies. The synthesis yielded four main concepts: (1) becoming a caring person; (2) the adult child - the marks of being different; (3) who is a carer? - others' expectations and stigmatisation; and (4) keeping caring as a secret - protecting the caring role and identity. The synthesis of translation generated the higher-order concept of 'integrating caring into an emerging identity'. This concept considers the experiences of young carers as a process of identity formation in the face of persistent stressful experiences from both within and outside the caring role. The clinical implications of these findings are discussed.
These photographs are just some of nearly 300 taken by young carers to describe their lives. Jo Aldridge and Darren Sharpe report.
The Oxford Friends and Family Empowerment (OFAFE) service is a carer support service that originated in a collaboration between the Oxfordshire Complex Needs Service and the national mental health charity Rethink. OFAFE provides support and education for adults supporting an individual with a personality disorder. This paper describes the background and operation of the OFAFE service, along with the early stages of the development of a similar service for young carers, the Young Friends and Family Empowerment (YFAFE) service.
The article focuses on the Young Carers Program of Hospice Toronto, a non-profit group that provides volunteer-based, in-home hospice and palliative care services. Information on the key objectives of the program is provided. Both children and youth who assumes a caregiving role for a family member are supported by the program. A variety of weekly activities, workshops and special events are facilitated by the program throughout Toronto, Ontario.
The article reviews the web site www.youngcarer.com. Young carers have specific needs that are not being met and this initiative provides information advice and training to anyone who works with young carers and their families. The website provides an online forum for those working with young carers, sharing ideas and experiences and identifying scope for collaborative project work.
This strategy sets out the key actions the Welsh Government intends to take for the remainder of this Assembly Term, up to 2016. It provides a framework for agencies to work together to deliver services and support to carers. Five priority areas are explained: health and social care; identification, information and consultation; young carers and young adult carers; support and a life outside of the caring role; and carers and employment. The strategy contains 18 key actions, which will form the basis of a report to be published by the end of 2013.
Findings of a two year study by the Young Carers Research Group (in partnership with Rethink, formerly National Schizophrenia Fellowship) which looks at the experiences and needs of children who care for parents with mental illness, their caring and filial relationships and the nature of professional interventions in these families.
The article discusses the difficulties experienced by young carers and how to develop and strengthen their caregiver skills and experience. It says that young carers are children, adolescents, and younger members of the family below the age of 25 who has become the primary caregiver of the family and takes adult responsibilities in managing the family due to parental absence. It says that due to their young age, most young carers experience psychological and physical stress in their lives, social isolation from their peers, and educational delays. However, many young carers also see positive outcomes of their role like heightened sense of self-worth, satisfaction from caregiving tasks, and belief that they are more mature.
The article discusses the British Young Carers in School program which is designed to provide information, staff training, and other resources to schools to help them improve the support which they provide to students who have caregiving responsibilities. It notes the program is led by the nonprofit groups Carers Trust and The Children's Society and cites an award under the program received by Applemore College secondary school, Hampshire, England.
This study aimed to (1) examine relations between youth adjustment and three sets of predictors: parental illness/disability characteristics, caregiving, and parent–child attachment, and (2) explore differences on these variables between youths of parental physical illness/disability and youths of parental mental illness. Eighty-one youths between 10 and 25 years of a parent with a physical illness/disability (35%) or a mental illness (43%) completed a series of self-report measures assessing perceived characteristics of the parent's illness/disability, caregiving experiences, and adjustment outcomes. Results revealed a set of predictors of poorer youth adjustment: Gradual illness/disability onset, being male, isolation, lower perceived maturity, and less choice in caregiving. Youths of parental mental illness differed from youths of parental physical illness/disability on emotional distress (worry and discomfort) dimensions of caregiving. Youth–parent attachment security was associated with youth caregiving and there was a trend for attachment to vary according to parental illness/disability type. Findings highlight young caregiving as an important target for service and policy planning.
Aim Guidelines describing how to carry out a randomised controlled trial (RCT) provide no advice concerning when to measure an intervention effect. Possibly as a result, most papers give no rationales for the time frames chosen for data collection. This paper discusses four general strategies to identify when to collect data. Furthermore, an additional individual strategy concerning the current German young carers project is presented.
Background The first German young carers project is being implemented and evaluated in a pilot study’s RCT. Organisational difficulties as well as problems accessing the field led to a delay in the research and ended with a change to the overall timeframe for data assessment. This process resulted in a discussion by the research team about whether the shorter timeframe would lead to biased data.
Discussion The authors discuss how they reviewed the literature and decided how to determine the best point to conduct follow ups with their study participants.
Conclusion The authors conclude that the standard three-month intervals used in RCTs are not necessarily applicable to psychosocial interventions and researchers should determine more appropriate intervals where possible.
Report of the independent analysis of the responses to the Carers Legislation public consultation. The consultation sought views on a number of matters for carers and young carers. These included renaming carer assessments 'Carers Support Plans' and removal of the substantial and regular test as eligibility for assessment. Questions were included on support for carers, including information and advice and short breaks; carers/young carers involvement in the planning of services and identification of carer by public services. There were 165 responses from organisations and individuals and 1,422 generated by surveys distributed by two stakeholder organisations submitted to the Scottish Government. This report contains analysis of the views from the consultation responses.
This article provides the first cross-national review and synthesis of available statistical and research evidence from three developed countries, the UK, Australia and the USA, and from sub-Saharan Africa, on children who provide substantial, regular or significant unpaid care to other family members (‘young carers/caregivers’). It uses the issue of young carers as a window on the formulation and delivery of social policy in a global context. The article examines the extent of children’s informal caregiving in each country; how young carers differ from other children; and how children’s caring has been explained in research from both developed and developing countries. The article includes a review of the research, social policy and service developments for young carers in each country. National levels of awareness and policy response are characterized as ‘advanced’, ‘intermediate’, ‘preliminary’ or ‘emerging’. Explanations are provided for variations in national policy and practice drawing on themes from the globalization literature. Global opportunities and constraints to progress, particularly in Africa, are identified. The article suggests that children’s informal caring roles in both developed and developing nations can be located along a ‘caregiving continuum’ and that young carers, globally, have much in common irrespective of where they live or how developed are their national welfare systems. There is a need in all countries for young carers to be recognized, identified, analysed and supported as a distinct group of ‘vulnerable children’.
This study describes the transition towards independent living of 123 former fostered young people reared for long periods in a private French organisation, SOS Children’s Villages. Three generations of care leavers were analysed through a postal survey and interviews. Their narratives show typical pathways after leaving care. Two-thirds became independent without major problems by the age of 24–25. Analyses have shown that the absence of severe emotional and behavioural disorders, and diplomas obtained, improved their odds of becoming independent. Results suggest a vital need to implement appropriate therapeutic care during placement and to develop care leaver support well beyond the age of 18, in order to help them personally and academically and to ensure their successful transition to adulthood.
The aim of this study was to gain knowledge about the specific needs that a web-based support system for young carers (YCs) must meet. Twelve young people with experience of caring for and supporting a close friend, partner or relative with mental illness (MI) were interviewed about their life situation, support needs and opinions about a hypothetical web-based support system. The transcribed interviews were analysed using content analysis. The analysed data were organised into three themes relating to support needs, each including a number of sub-themes: knowledge – understanding MI, managing the mentally ill person and self-care; communication – shared experiences, advice and feedback, and befriending; and outside involvement – acute relief, structured help and health care commitments. Web-based support for YCs may be a suitable way to meet the need for knowledge and to meet some of the needs for communication. We have outlined a concept of a geographically anchored web support to meet the need for befriending, facilitate connections to health and social care, and increase understanding and interaction between the parties involved. Further research is needed to corroborate the results.
Package of measures aimed at local authorities and other agencies to provide more support to carers in Wales. Contents include: health and social care; information; support; young carers; carers and employment; quality assurance, monitoring and evaluation.
A major developmental task in adolescence is identity exploration. Some young carers, due to the level of care being provided, may not have an opportunity to explore who they are outside of being a caregiver. This qualitative study explored the lives of 14 young carers (4 males, 10 females) to reveal impacts within their lives and on their identity development. Results revealed that psychological, family, and social impacts interacted and influenced the degree to which the young carer adopted a caregiver identity.
The article provides an overview on young carers the services they need within their community. It notes that young carers are individuals under 18 who provide primary care in their families due to parental addiction, disability, illness. Further, it states that parental absence due to divorce, desertion, or overseas military service can also serve as a ground for youth to become young carers. It mentions the negative impact of caregiving among young carers including the loss of childhood through having to provide care for other family members, poor social skills, and stress caused by conflicting needs and situations.
In Canada, a growing number of young people (i.e., young carers) provide an increasing level of unpaid care to family member(s) with a chronic illness, disability, mental health or substance use issue and/or problems related to old age. Despite young carers occupying a central role in public policy and social service programming in other countries, very little attention has been paid to these youth in Canada, with no dedicated policies acknowledging their care-work and only a handful of non-profit organisations struggling to support their needs. This article provides the first known qualitative review of existing young carer programmes in Canada, using interview data with staff at each operational site to: (1) review the range of services offered to young carers and, (2) document barriers to improving their scope and reach. Findings show that available support services are in a preliminary assistance–mitigation phase, with various constraints related to funding and reach that impede their movement to a model of prevention.
Background: Over 30,000 people in the U.S. have Huntington’s disease (HD), a disorder with numerous complicated, long-lasting and stigmatizing symptoms. Caregiving typically falls to the family, yet little is known about the caregiving experience of children and adolescents in the home.
Objective: Guided by the stress process model, this exploratory study sought to describe children and adolescents who care for a parent with HD and their caregiving experience, by detailing previously unknown relationships between caregiving, parent/child conflict, school problems, and psychological well-being of child/adolescent caregivers.
Methods: This cross-sectional study used semi-structured interviews with a purposive sample of 40 children and adolescents, aged 12–20, who care for a parent with HD. Data was analyzed using descriptive and correlational statistics. Measures included the Children’s’ Depression Inventory, The Conflict Behavior Questionnaire, and the Multidimensional Assessment of Caring Activities.
Results: Study participants have substantial caregiving responsibilities (>11), with half providing personal care to a parent. The majority experienced school problems and conflict with parents (60 and 92 % respectively). Caregiving tasks were associated with problems with school and conflict with the ill parent. Furthermore, parental symptoms were associated with poor psychological wellbeing, parental conflict, and school problems for the caregivers.
Conclusion: Children and adolescents are involved in numerous tasks and describe difficulties with their daily life and well-being. Results highlight the need for the development of support services for caregivers, as well best care practices for problematic HD symptoms. Study outcomes address minimizing the potential for negative caregiving experiences of these vulnerable caregivers.
Presents a list of medicine and health research sources selected by the editorial board for the October 2004 to April 2005 issue of the magazine "Research Matters." "A Better Life: Private Sheltered Housing and Independent Living for Older People"; "New Lifestyles in Old Age: Health, Identity and Well-Being in Berryhill Retirement Village"; "Young Carers in the UK: The 2004 Report"; The Commercial Exploitation of Children and Young People: An Overview of Key Literature and Data; "Images of Abuse: A Review of the Evidence in Child Pornography."
This study explored youth caregiving for a parent with multiple sclerosis (MS) from multiple perspectives, and examined associations between caregiving and child negative (behavioural emotional difficulties, somatisation) and positive (life satisfaction, positive affect, prosocial behaviour) adjustment outcomes overtime. A total of 88 families participated; 85 parents with MS, 55 partners and 130 children completed questionnaires at Time 1. Child caregiving was assessed by the Youth Activities of Caregiving Scale (YACS). Child and parent questionnaire data were collected at Time 1 and child data were collected 12 months later (Time 2). Factor analysis of the child and parent YACS data replicated the four factors (instrumental, social-emotional, personal-intimate, domestic-household care), all of which were psychometrically sound. The YACS factors were related to parental illness and caregiving context variables that reflected increased caregiving demands. The Time 1 instrumental and social-emotional care domains were associated with poorer Time 2 adjustment, whereas personal-intimate was related to better adjustment and domestic-household care was unrelated to adjustment. Children and their parents exhibited highest agreement on personal-intimate, instrumental and total caregiving, and least on domestic-household and social-emotional care. Findings delineate the key dimensions of young caregiving in MS and the differential links between caregiving activities and youth adjustment.
Using grounded theory methodology, members of nine families with 'young carers' were interviewed to explore their experiences of caring. A dynamic theory of change and adaptation emerged in relation to changes in who cares within families, in external support and in the attitudes of young carers towards caring. Adaptations included becoming used to the way life is, knowing how to care, balancing and trading off, rewarding care, and anticipating future adaptations. A model has been developed to offer an explanation of factors which influence young caring in families. These include family expectations about caring; who is available to care; the willingness and capability of young carers to help; and the degree of choice or obligation they experience. Formal and informal support services from outside the family, and environmental adaptations, can reduce the amount of family caregiving required, increase choice and contribute to balancing life for carers.
Community-based organizations (CBOs) have the potential to provide high quality services for orphaned and vulnerable children in resource-limited settings. However, evidence is lacking as to whether CBOs are reaching those who are most vulnerable, whether attending these organizations is associated with greater psychosocial wellbeing, and how they might work. This study addressed these three questions using cross-sectional data from 1848 South African children aged 9–13. Data were obtained from the Young Carers and Child Community Care studies, which both investigated child wellbeing in South Africa using standardized self-report measures. Children from the Child Community Care study were all CBO attenders, whereas children from Young Carers were not receiving any CBO services, thereby serving as a comparison group. Multivariable regression analyses were used to test whether children attending CBOs were more deprived on socio-demographic variables (e.g., housing), and whether CBO attendance was in turn associated with better psychosocial outcomes (e.g., child depression). Mediation analysis was conducted to test whether more positive home environments mediated the association between CBO attendance and significantly higher psychological wellbeing. Overall, children attending CBOs did show greater vulnerability on most socio-demographic variables. For example, compared to children not attending any CBO, CBO-attending children tended to live in more crowded households (OR 1.22) and have been exposed to more community violence (OR 2.06). Despite their heightened vulnerability, however, children attending CBOs tended to perform better on psychosocial measures: for instance, showing fewer depressive symptoms (B = − 0.33) and lower odds of experiencing physical (OR 0.07) or emotional abuse (OR 0.22). Indirect effects of CBO attendance on significantly better child psychological wellbeing (lower depressive symptoms) was observed via lower rates of child abuse (B = − 0.07) and domestic conflict/violence (B = − 0.03) and higher rates of parental praise (B = − 0.03). Null associations were observed between CBO attendance and severe psychopathology (e.g., suicidality). These cross-sectional results provide promising evidence regarding the potential success of CBO reach and impact but also highlight areas for improvement.
Summarises the Government's progress in supporting carers since the publication of Recognised, valued and supported: next steps for the Carers Strategy' in 2010. It provides an overview of evidence gathered over the last few years and explains the main achievements in recognising and supporting carers during that time. It focuses specifically on progress in four priority areas: early identification and recognition of carers; realising and releasing potential and enabling carers to fulfil their educational and employment potential; providing support to enable carers to have a family and community life alongside caring; and supporting carers to stay mentally and physically well. The report also identifies key actions for the Government for the next 2 years. Examples of initiatives and good practice are included throughout.
The editorial on child maltreatment in the September issue of the BJGP prompted me to think again about young carers. It talked about the fact that many maltreated and vulnerable children do not have an administratively competent carer and that often parents have health issues such as alcohol misuse or physical or mental health problems that can affect their children. In general practice it is not uncommon for us to see the parents but not see the young people themselves. However, young carers are at risk of social isolation and bullying, under-achievement, absenteeism from school, and physical and mental ill health. Having a holistic approach to family medicine should include supporting the young people in their caring role. We can do this by explaining to parents we are happy to support their children too. We can also signpost them to useful websites like www.youngcarers.net or local groups for young carers that can provide youth worker support, youth clubs and days out depending on the area. Perhaps I can set a challenge to GP’s reading this and suggest a way to double their CPD points? Find out what is available in your area to support young carers and next time you see a patient with health issues who has children at home think also about what support their children may need.
Helping people to understand what mental illness is and means to people who are affected by it can be difficult, but a set of resources has been developed by a person with bipolar disorder to help address the problem. The 'Choices Method' consists of a series of boards covering a range of mental health conditions which are designed to promote a free exchange of feelings and information between those experiencing mental illness and those supporting them. The method has been independently tested by a UK university and has been found to improve learning and knowledge retention as opposed to other methods. Future projects include the development of a board game for young carers which targets bullying and a board game for people with dementia which charts a day in the life of a person with dementia and those who care for them.
Bettina Cass, with Deborah Brennan, Ilan Katz, Catherine Thomson and Deborah Mitchell, and 10 Partner organisations in NSW and South Australia, are undertaking a three-year ARC Linkage Grant project on 'Young Carers: Social Policy impacts of the caring responsibilities of children and young people'. Located at the Social Policy Research Centre (UNSW), the investigators are exploring the interplay between the socio-economic and socio-cultural circumstances in which young people take up caring responsibilities; the policy settings that affect the level and types of care which they provide; and the impacts of care-giving on their participation in education, employment and friendship/social networks. The project will map the gaps in service provision which young carers, their care recipients and service providers identify.
The study's rationale: Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children.
Aims and objectives: To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS.
Methodological design and justification: Phenomenology was the methodological approach of the study since it gives an inside information of the lived experience.
Ethical issues and approval: The study was approved by the National Bioethics Committee and reported to the Data Protection Authority.
Research methods: We explored in 21 interviews the lived experience of 11 young caregivers who had cared for single chronically ill parents, diagnosed with MS.
Results: The participants felt silent, invisible and unacknowledged as caregivers and received limited professional assistance. They were left to provide their parents with intimate physical and emotional care and support that was demanding, embarrassing and quite difficult while feeling unsupported, excluded and abandoned. Their caring responsibilities lead to severe restrictions in life as their parents' disease progressed and they lived without a true childhood; left to manage far too many responsibilities completely on their own and at a young age. At the time of the interviews, most of the participants had left their post as primary caregivers. They were learning to let go of the emotional pain, some of them with a welcomed partner. Most of them were experiencing a healthy transition and personal growth, existentially moving from feeling abandoned towards feeling independent. However, some of them were still hurting.
Study limitations: In choosing participants for the study a sampling bias may have occurred.
Conclusions: Health professionals are urged to provide information, support and guidance for young carers in a culturally sensitive way and to take on the leading role of helping and empowering children and adolescents in similar situations.
Concern has been mounting about the health and welfare of people who provide informal care for family or friends with chronic illness. In particular, young and elderly people - vulnerable groups in their own right - may be carrying a heavy burden. The extent of the problem is not well known because estimates have been pieced together from ad hoc local studies and household sample surveys. These estimated that young carers in the United Kingdom numbered between 10,000 and 50,000, and that about one in 20 older people in Great Britain spent long hours caring for sick family members. In 2001, for the first time the decennial UK census asked the entire population about caring responsibilities and general self rated health. We analysed the answers to these two questions to explore carers' wellbeing.
Explores the importance of the Children Bill for both young carers and young adult carers in England and Wales. Scope of the Children Bill; Number of children and young people under 18 that are young carers, according to the 2001 census data; Reason many of the young adult carers preferred to seek support and information from the person who ran the young carers service when they are involved.
A major issue in research, policy and professional practice is the social exclusion of carers, in particular carers for people with mental health problems. In order to address the issue of social exclusion from the perspectives of professionals, 65 participants were interviewed. The sample included directors, managers and senior staff from the social care, health and voluntary sectors. Respondents were asked to comment at length on the social exclusion of carers. Findings highlight four main types of exclusion: first, personal exclusions, including stigma; keeping mental health problems ‘a secret’; and taboos surrounding mental health care; second, social exclusions, such as isolation; narrowing of social networks; restrictions due to time commitments; exclusions relating to education, training, employment and leisure; and young carers; third, service exclusions involving carers being taken for granted and having difficulties with access to appropriate services; and fourth, financial or economic exclusions that lead to carers paying for care. This paper documents patterns of exclusion and draws out implications for research, policy and professional practice. In conclusion this paper also considers the ways in which professionals and services may better promote the social inclusion of carers for people with mental health problems in the future.
Caring for a chronically ill relative takes a physical and mental toll on young carers, suggests a study in Austria.
The article focuses on a strategy meant for providing support for carers across Northern Ireland. The strategy quotes census figures indicating that there are more than 185,000 unpaid carers in Northern Ireland, equating to about 11 percent of the population. Carers need some help and support to enable them to continue in their caring role. The strategy include the identification of those acting in a caring role, information for carers, support services, the special needs of young carers and training and employment.
Statutory guidance on social care assessment for adults, children, young carers and adult carers in Scotland which explains who those duties are affected by the introduction of the Social Care (Self-directed Support) (Scotland) Act 2013. It provides guidance on each stage of the person's pathway through support, including: the provision of information, support and advocacy; assessment and eligibility criteria; the duty to provide choice; support planning; and the role of the NHS and combined budgets.
In 2005 the United Kingdom departments of health added 'carers' to the list of people that should be offered seasonal influenza immunisation by their general practice. We surveyed a sample of carers registered for care assistance with the charity Crossroads Caring for Carers. Over half (58%) were not aware that they are eligible for free influenza immunisation. Young carers without a chronic disease, were least likely to be offered immunisation and least likely to be immunised.
Background: Approximately one in ten of the UK population are unpaid carers supporting a family member or friend who could not manage without their help, saving the UK economy an estimated £87 billion. This role is known to sometimes have a negative impact on carers and to require support both informally and from statutory services. General practice is a first point of contact for carers but research investigating general practitioners' (GPs') attitudes towards carers and awareness of issues facing carers is rare. This study therefore aimed to identify GPs' attitudes, awareness of issues, and perceptions of the barriers and enablers to provision of services.
Methods: Using a self-completion questionnaire distributed at a series of workshops, this study investigates GPs' attitudes to carers; awareness and knowledge of carers' issues; services offered in general practice and barriers to supporting carers.
Results: Seventy eight out of a total of 95 GPs (82% response rate) from a variety of areas in England completed the questionnaires. The GPs identified time, resources and lack of knowledge as barriers, but only 9% agreed with the statement that there is little support they can offer carers. However, nine in ten GPs (89%) feel they have insufficient training here and approximately half of them (47%) lack confidence that they are meeting carers' needs. Confidence in identifying carers is also low (45%). Issues that GPs would look out for amongst carers include emotional and physical health problems and financial and isolation difficulties. GPs specifically highlighted educational and isolation issues for young carers. Few services were described that targeted carers.
Conclusions: GPs recognise that they have an important role to play in supporting carers but would like training and support. Further investigation is needed both to determine how best to train and facilitate GPs and general practice teams in their role in supporting carers and to identify what carers need and want from general practice. Identifying carers' leads or carers' champions amongst practice staff is possibly one way forward. Given the proposed greater commissioning role for primary care, greater understanding here is particularly important.
Reviews the book "Children Caring for Parents With Mental Illness: Perspectives of Young Carers, Parents and Professionals," by Jo Aldridge and Sarah Becker.
This resource aims to provide practitioners working with children and families affected by ill health and disability with information, resources and links to help develop and implement best policy and practice for services to identify and support black and minority ethnic young carers and their families.
This site was originally funded by the Department of Health in order to provide an understanding of the needs of black and minority ethnic family carers and best practice support.
Despite a growing number of studies comparing the experiences of young carers in the global North and South, little has been done to explore young carers' representations of their global peers. In this paper we examine the reflections of British young carers after having visited an exhibition displaying photos and stories articulating the caregiving experiences of young carers in Zimbabwe and Kenya. We do this to explore the role of safe and transformative social spaces in facilitating positive identity constructions. We draw on the essays and workshop material of 19 British young carers as well as 8 follow-up interviews. A thematic network analysis of the data reveals that British young carers, upon being confronted with the experiences of African young carers, saw their African peers as more marginalised, with heavier duties and with less state support. Their responses echoed victimising representations of Africa as poor and ‘underdeveloped’. However, the exhibition material was balanced and also highlighted the strengths and agency of African young carers, which provided some of the British young carers with opportunities to reassess their own circumstances in a more positive way. We conclude that creating social spaces for young carers to reflect on self and others can contribute towards the development of positive young carer identities and resilience.
While there is a growing body of literature regarding young carers, there are a number of gaps in our knowledge about these young people. In this study we attempted to fill these gaps by asking: 1) Do young people who care for a parent feel greater or lesser attachment security and relationship efficacy than adolescents who do not care for a parent?, 2) Is there a difference between young people who care for a parent and those who care for another family member? and 3) Do young carers feel more or less overwhelmed, greater or lesser attachment security, and relationship efficacy than their non-caregiving peers?
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This paper presents the findings from a project investigating the circumstances, experiences, perspectives and service needs of young people caring for a family member with a disability or long-term illness. Using qualitative methods, our research explored the experiences of two cohorts of young carers – younger carers aged 7 to 17 years and young adult carers aged 18 to 25 years. The concept of ‘bounded agency’ offers an explanation for the way that younger carers' and young adult carers' decisions and aspirations can be shaped by the barriers and contexts in which they find themselves. The study compares the impacts of caring on the participants' education, employment, health and social life. Important differences are identified, particularly relating to young adult carers' future aspirations as they approach key normative transitions into young adulthood. The paper concludes with implications for services and policy for young carers. [ABSTRACT FROM AUTHOR];Copyright of Journal of Youth Studies
The article discusses issues being debated in Great Britain's House of Commons in July 2010. Health Minister Paul Burstow observes that young carers of parents or siblings needed an integrated support programme from schools, social services and community groups. Education Minister Michael Gove stated that the number of teachers under the Teach First Programme will be doubled to 1,140 a year. Chris Leslie of Lab/Co-op, Nottingham East, asked that funding for mental health services for deprived children in Nottingham be maintained.
This guidance provides a framework for recording and measuring progress against personal outcomes for individuals during the care and support process. It applies to individuals who are eligible for a care and support plan and carers eligible for a support plan under the Social Services and Well-being (Wales) Act 2014. These personal outcomes should link to the 24 national wellbeing outcomes. This guidance provides information on defining, recording and measuring personal outcomes; information on measuring progress; and dealing with different interpretations of scoring and measuring. Examples of tools to measure progress against personal outcomes are included.
Original document (pdf) on socialcare.wales website.
The 2011 census suggested that 244,000 young people in England and Wales under 19 provide unpaid care for someone with an illness or disability (Office for National Statistics, 2013). Young carers are not a homogeneous population; they represent children and young people from a variety of backgrounds with diverse experiences. Young carers are described as a 'hidden population' (H.M Government, 2010) hence the prevalence of young carers may be larger than data sources reveal. Previous research has identified negative aspects of caregiving and the impact on education, social, emotional, physical health and wellbeing. Young carers seem to be a vulnerable group and marginalised population, yet there is little reference to young carers in educational psychology literature. This research sought to listen to the voices of this hidden population from a strengths-based perspective to consider if this adds to our understanding of their resilience. The research adopted an inductive constructionist approach using Interpretative Phenomenological Analysis (IPA). Six participants aged between 11 and 13 years were recruited from a large rural Young Carers Project to attend three separate interviews. Participants were caring for a parent with a mental illness. Findings illustrated these young carers had very individual and complex lives, full of tensions, yet they found ways of managing and adapting to their situations. Implications for raising the profile of individuals with complex lives are discussed and consideration given to a sensitive, individualised and flexible response.
This is the report of the third national survey of young carers who are being supported by specialist young carers projects across the UK. Throughout the report, where appropriate and for comparison, we refer to the two previous surveys conducted in 1995 and 1997 (Dearden and Becker, 1995, 1998). The 2004 Report is based on data collected from 87 projects concerning a total of 6,178 young carers – the largest survey of its kind.
The article discusses the legislative statement issued by Deputy Minister for Social Services, Gwenda Thomas on the Carers Legislative Competence Order in the Welsh Assembly on December 9, 2008. Thomas said there were still key areas that were not being consistently addressed across Wales including young carers who wants recognition and support where possible. But Thomas clarified that young carers should not have the responsibility that was inappropriate to their age or capacity. Thomas also proposed to include all ages in the definition of carers.
Drawing on an interview-based case study of young people caring for dependent adult members of their households in Harare, this paper connects the experiences of young carers in Zimbabwe to global forces—namely the HIV/AIDS pandemic and economic liberalisation. It is argued, firstly, that care-giving by young people is a largely hidden and unappreciated aspect of national economies which is growing as an outcome of conservative macroeconomic policies and the HIV/AIDS explosion. Secondly, that young people have a right to recognition of their work as work. Thirdly, while acknowledging that conceptualising childhood is problematic, there needs to be less emphasis on northern myths of childhood as a time of play and innocence and more attention on defending children's rights to work as well as to be supported in their work under appropriate circumstances. The articulation between global processes and the localised experiences of individual children as providers of care within the home contributes to efforts to re-introduce social reproduction as an important (but often missing) aspect of debates around globalisation. In addition, this article adds to the growing literature on the geographies of childhood while tackling the imbalance within that literature, whereby working young people and those of the global South are relatively neglected. Suggestions are offered in the conclusions for policy recommendations to recognise and support young carers in Africa, while calling for further research.
The article offers information on free evening play sessions entitled "My Time" offered by Dorking and Ewell United Reformed churches and Soroptimist International for young carers in England.
An estimated 50,000 children in Britain today regularly take on the hard work and responsibility of caring for a relative who is ill or disabled. These ‘young carers’ were, until recently, a hidden and neglected group in society, unacknowledged and unsupported. There are now over 100 young carers projects throughout Britain, and the Government’s National Carers Strategy document outlines a series of commitments designed to improve young carers’ lives.
But many excellent young carers projects have only short-term funding and professionals working with children – GPs, health care teams, teachers, social workers – still often fail to recognise young carers or to understand their problems of coping and combining caring duties at home with schoolwork and their own needs as developing young people. In this revealing book young carers speak of their experiences, their lives, their families and their sometimes difficult relationships with adult professionals. The editors explain the issues, set out current policy and put forward recommendations for future practice.
The article informs that the community health mental health team where the author worked as a community psychiatric nurse (CPN) a few years ago had a referral from a GP for a woman in her thirties with anxiety and depression. When he went to assess this patient, he discovered that she was the daughter of a previous patient of mine--her mother having had chronic schizophrenia. Nina, the new patient, had been offered a wide range of treatments in the past but had never spoken about growing up with a mother who had schizophrenia. This area offers exciting opportunities for mental health workers. Services must ensure there are more early interventions with young carers, and less need for belated interventions with grown-up survivors of caring who may have developed adult mental health problems as a result. INSET: The Meriden Family Interventions Programme.
In keeping with developments in children's rights, research is increasingly including the views of children. Accessing a hard to reach population of children can, however, raise significant ethical and methodological challenges for researchers. Negotiating access through gatekeepers, securing parental consent and limits on confidentiality are central issues in the recruitment process of children. This paper is based on a qualitative study of young carers in the Irish population. It outlines the methodological approaches employed to access a representative sample of young carers and the measures taken to fulfil ethical obligations. In the recruitment phase of the study, researchers attempted to strike a balance between two sometimes competing requirements, the need to protect children from harm and to respect children's competence. This paper reflects on the success and limitations of the approaches adopted towards achieving this balance, exploring the use of gatekeepers as a method to identify and recruit a hidden population, and revisiting the measures taken to comply with the ethical requirements of parental consent and limits on confidentiality.
Presents views on social care among children. Overview of a 2005 report by The Education Network about young carers; Decision to be a good parent upon the acquisition of a disability; Reasons why parents should impose responsibilities on their children when they risk damaging their futures.
Teenage carers met nurses, doctors, political and NHS leaders at London Zoo to highlight the health and social care needs of an estimated 166,000 young carers in England.
This article examines the government's strategy for carers and considers its significance for people in informal caring relationships. It argues that although it contains important and innovative measures, the strategy does not address adequately the complex nature of caring relationships nor does it take account of the perspectives of people who receive care. There is a danger, therefore, that the strategy will be divisive. However, the recognition that caring is a widespread activity is welcomed.
Reflecting dominant understandings of childhood, many researchers describe orphans as an emotional and financial cost to the households in which they live. This has created a representation of orphans as a burden, not only to their fostering household, but also to society. This article seeks to challenge this representation by exploring children's contributions to their fostering households. Drawing on research from Bondo District in Kenya, this article brings together the views of 36 guardians and 69 orphaned children between the ages of 11 and 17, who articulated their circumstances through photography and drawing. Nearly 300 photos and drawings were selected by the children and subsequently described in writing. An additional 44 in-depth interviews and three focus group discussions were conducted to explore findings further. The data suggest that many fostering households benefit tremendously from absorbing orphaned children. All orphans were found to contribute to their fostering household's income and provide valuable care or support to ageing, ailing or young members of their households. The article concludes that caution should be exercised in using the term “caregiver” to describe foster parents due to the reciprocity, and indeed at times a reversal, of caring responsibilities.
The article reports on a Public Health England (PHE) scheme aimed at identifying and supporting the wellbeing of young carers in England through the help of school nurses and other public health nurses. The scheme was honoured at inaugural awards of the Academy of National Health Service (NHS) Fabulous Stuff. According to PHE lead nurse Wendy Nicholson, many carers do not speak up because they fear that they would be removed from their family homes.
Carers are a high-profile group in Gordon Brown’s government. Despite this, the degree to which they are considered in mainstream policies varies. Undoubtedly, some policies offer immense help to carers but others appear to be working against them.The article calls for a more cohesive policy for carers which takes into account the needs of the whole family, especially children. Young carers often miss school to look after parents, but are usually overlooked by policymakers.
In 2009, The Social Care Institute for Excellence introduced guidelines for practitioners to support families in which parents have mental health problems. Here, Scie presents a case study demonstrating how the guidance could be successfully applied
This strategy has been developed around six key areas of concern, which were identified during a period of consultation with carers. These include the identification of those acting in a caring role, information for carers, support services, the special needs of young carers, training and employment. It is estimated that there are over 185,000 unpaid carers in Northern Ireland. Their contribution to health and social care cannot be overstated. This strategy sets out a vision of what needs to be done to provide those carers with the practical support they want and need to allow them to continue caring and, at the same time, to have as much access as possible to the same opportunities that the rest of us enjoy.
The author argues that funding for young carers' support should be ring-fenced to avoid that possibility that British councils may use the budget to fend off the next budgetary crisis. He describes young carers as children who take on responsibility for their families, acting as main carers for their disabled or chronically ill parents and siblings. The government has funded initiatives to support young carers. However, he notes that government aims to transfer this funding to local authorities.
Young carers provide a significant contribution to society in their caring role, which is in line with the UK Government's Big Society agenda. In contrast with their contribution to society, young carers have huge associated costs related to poor outcomes and the numbers that end up not in employment, education or training (NEET). Missing school due to caring responsibilities is likely to have affect future education and job prospects. Understanding the impact of the caring role on the school experience of young carers will enable school nurses to provide appropriate support for young carers, improving their school experience and subsequent outcomes.
The title of the new children's green paper "Every Child Matters" implies inclusiveness, and the paper does indeed highlight a range of client groups with specific needs, suggesting that all children are covered. Asks whether the commitment to inclusiveness is genuine or merely a token gesture. Looks at 5 areas where more could have been done: children entering the country, parents and carers of disabled children, young carers, children with parents in jail, and improving fostering and adoption services. (Quotes from original text)
The needs of young carers and their families are a multi-agency responsibility that crosses both adults’ and children and families’ services. This practice guide is therefore aimed at all agencies that have contact with young carers and the people for whom they care. It brings together much of the thinking and experience behind the good practice developed so far and will provide a useful starting point for those new to this area of work and serve as a development resource for the more experienced.
There are now many publications on the support of young carers, so what makes this practice guide any different? • It draws directly on the views of young carers and their families. • It promotes an inter-agency and holistic approach. • It offers the reader realistic, practical suggestions for the development of support services for young carers and their families. • It presents current legislation and policy guidelines clearly, relating them to recommendations for practical work. • It contains a detailed and fully annotated bibliography. In short, this guide is a useful tool for all practitioners and those involved in the planning of services.
This is the report of a collaborative study between the Manchester Metropolitan University and the Bibini Centre for Young People to investigate the experiences, needs and access to services of black ‘young carers’ and their families. It is important to highlight that this study was situated within the social and political context of inequality, at a time when interest in the root causes of inequality seems to have been lost; instead, the focus is on ‘managing diversity’ (as if the problem lies in ‘difference’) and grappling with the consequences, not the causes, of social exclusion.
The purpose of this study was to develop an empirically derived multi-item scale of care tasks performed by young people in the context of family illness/disability: the Youth Activities of Caregiving Scale (YACS). A total of 135 youngsters aged 10–24 years with an ill/disabled family member completed questionnaires. Factor analyses performed on the YACS yielded four factors, instrumental care, social/emotional care, personal/intimate care and domestic/household care, accounting for 57.78% of the variance. The internal reliabilities of all factors ranged from 0.74 to 0.92. Higher scores on the YACS related to higher youth age and several caregiving context variables (i.e. household type [single or dual-parent household], relationship with care-recipient and perceived choice in caregiving). Higher scores on the YACS also related to care-recipient illness/disability variables (onset, functional impairment, prognosis, predictability and illness/disability type). Strong positive correlations between the YACS and a conceptually related measure of young caregiving experiences provided good convergent validity data. Criterion validity was established with evidence that the YACS predicted youth adjustment in the domains of health and prosocial behaviour.
The article reports on the Young Carers' Day 2007 outing organized by the Essex Council in England for young carers and their families. The city council's adolescent services has collaborated with young carers' groups in organizing the event. Over 300 young carers and their families have attended the event at the end of June 2007. It notes that there are 5,000 young carers in the city.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East Midlands region. In 2001 there were 433,912 carers in the East Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carer’s health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East Midlands region.
Objective: The purpose of the present study was to evaluate the effectiveness of a group psychosocial intervention for children (aged 12–18) of a parent with mental illness (copmi).
Method: A treatment and waitlist-control design study with pre- and post-treatment, and 8 week follow up, was carried out. The treatment (n = 27) and control (n=17) groups were compared on three groups of dependent variables: intervention targets (mental health literacy, connectedness, coping strategies), adjustment (depression, life satisfaction, prosocial behaviour, emotional/behavioural difficulties), and caregiving experiences.
Results: Group comparisons failed to show statistically significant intervention effects, but reliable clinical change analyses suggested that compared to the control group, more intervention participants had clinically significant improvements in mental health literacy, depression, and life satisfaction. These treatment gains were maintained 8 weeks after treatment. Participant satisfaction data supported these treatment gains.
Conclusions: Given study limitations and the modest support for intervention effectiveness it is important that this and other similar interventions should continue to be revised and undergo rigorous evaluation.
The Act makes provision about children, families, and people with special educational needs. Specifically, it covers: adoption and children looked after by local authorities; family justice (e.g. mediation); children and young people in England with special educational needs; childminding agencies; the Children's Commissioner; statutory rights to leave and pay; time off work for ante-natal care; and the right to request flexible working. Part 5 of the Act contains various provisions relating to the welfare of children, including giving children in care the choice to stay with their foster families until they turn 21, making young carers’ and parent carers’ rights to support from councils much clearer, reforming children’s residential care to make sure homes are safe and secure and a requirement on all state-funded schools (including academies) to provide free school lunches on request for all pupils in reception, year 1 and year 2.
The article reports that studies by several British educational organizations have found that access to social services for vulnerable students in state schools is inadequate. The organizations referenced include the Young Carers Research Group at Loughborough University, the Children's Society, and National Foundation for Educational Research. Research by these groups has shown that educators often discipline vulnerable children for bad behaviour without addressing the cause of such behaviour.
A pioneering nurse is leading a pilot programme to tackle physical and mental health problems among young carers.
African children who care for sick or dying adults are receiving less than optimal support due to confusion about whether or not young caregiving constitutes a form of child labour and the tendency of the authorities to play it “safe” and side with more abolitionist approaches to children's work, avoiding engagement with support strategies that could be seen as support of child labour. To challenge this view, and move from policy paralysis to action, we present a study from western Kenya that explores community perceptions of children's work and caregiving as well as opportunities for support. The study draws on 17 community group conversations and 10 individual interviews, involving 283 members of a Luo community in the Bondo District of western Kenya. We provide a detailed account of how integral children's work is to household survival in the context of poverty, HIV and AIDS as well as community recommendations on how they and external service providers can work together in supporting children faced with excessive caregiving and income-generation responsibilities. We use our findings to call for less restrictive regulations of children's work and to develop a plan for policy and action for young carers that identifies key actors, their roles and responsibilities, and how they might best collaborate—in a way that is sensitive both to concerns about child labour as well as community strengths, resources and apprehensions about the stigmatisation of children targeted by agencies.
Background: Siblings of children with chronic illness and disabilities are at increased risk of negative psychological effects. Support groups enable them to access psycho-education and social support. Barriers to this can include the distance they have to travel to meet face-to-face. Audio-conferencing, whereby three or more people can connect by telephone in different locations, is an efficient means of groups meeting and warrants exploration in this healthcare context. This study explored the feasibility of audio-conferencing as a method of facilitating sibling support groups
Methods: A longitudinal design was adopted. Participants were six siblings (aged eight to thirteen years) and parents of children with complex neurodevelopmental disorders attending the Centre for Interventional Paediatric Psychopharmacology (CIPP). Four of the eight one-hour weekly sessions were held face-to-face and the other four using audio-conferencing. Pre- and post-intervention questionnaires and interviews were completed and three to six month follow-up interviews were carried out. The sessions were audio-recorded, transcribed and thematic analysis was undertaken.
Results: Audio-conferencing as a form of telemedicine was acceptable to all six participants and was effective in facilitating sibling support groups. Audio-conferencing can overcome geographical barriers to children being able to receive group therapeutic healthcare interventions such as social support and psycho-education. Psychopathology ratings increased post-intervention in some participants. Siblings reported that communication between siblings and their family members increased and siblings’ social network widened.
Conclusions: Audio-conferencing is an acceptable, feasible and effective method of facilitating sibling support groups. Siblings’ clear accounts of neuropsychiatric symptoms render them reliable informants. Systematic assessment of siblings’ needs and strengthened links between Child and Adolescent Mental Health Services, school counsellors and young carers groups are warranted.
Young people often demonstrate considerable commitment, resilience and skill within their roles as young carers. Their contributions, however are regularly devalued or unrecognized by the systems that seek to support them. In this article we examine existing knowledge on why and how young people become young carers and the influences such a role can have on them. We also look at policy and practice issues related to young carers.
In the UK, young carers are defined as people under the age of 18 who give regular and ongoing care to a family member, beyond that normally expected of a child ( Phelps 2012 ). They can be doubly burdened by the demands of caring itself and by the effect on development, health and education. Often these problems are compounded by secrecy with children and families often afraid to ask for help ( Smyth et al 2010 ).
This paper is based on a study of the experiences of people identified as 'young carers', commissioned by the National Assembly for Wales as part of a wider review of carers' needs and services. Following a brief review of some of the previous research in this area, the paper reports key findings of the research, using the words of children and young people as much as possible. It then goes on to explore some of the wider implications of this and other research for the identification and support of 'young carers' and their families, and for the understanding of the needs and wishes of children and young people so defined. The paper concludes with an alternative definition of a 'young carer' and with some recommendations for professional practice, suggesting that the role of social work is crucial in this area of service.
The aim of the study was to develop, implement and evaluate a concept for the first support program for young carers and their families in Germany. This paper intends to critically review the implementation of that study and describe the problems experienced by the research team, including: the complexity of the intervention itself, the difficulty of finding host organizations, the lack of infrastructure, different values and beliefs about the project aims held between the host organization and the research team, shortage of time, identifying and recruiting families among the hidden population of young carers. These initial problems led to the re-constructuring of the original research design. In order to evaluate factors that influenced these difficulties, the original research intentions, emerging problems and their consequences will be presented.;
Aim To investigate the impact of caring for a parent on the psychosocial development of the young person. Methods A total of 20 young carers and 20 non-caregiving peers, aged 11-18 years, were compared on self-report measures of life satisfaction, self-esteem, and behavioural strengths and difficulties. Parental reports on their child's behaviour were obtained and measured. Results Young carers reported lower life satisfaction and self-esteem compared with non-caregiving peers, and their parents rated them as having more difficulties with peer relationships and more emotional symptoms. There was no evidence of more pro-social behaviour on the part of young carers. Conclusions Caregiving has a negative effect on young people overall; improved support of and more research around young carers are required.
There is a vast body of research on the impact of HIV/AIDS on children, but little which acknowledges the role of children in providing care and support for ailing parents or ageing guardians. There has been a tendency to downplay the active role and agency of young carers, with young carers often represented as victims of damaging circumstances that compromise their psychosocial well-being. To counter-balance this tendency, and to develop the critical trend that views children as social actors, we explore how young carers cope with challenging circumstances, often with skill and ingenuity, drawing on data collected in Western Kenya in 2007. Forty-eight young carers (aged 11–17) used photography and drawing to provide accounts of their coping strategies. They described 240 of the resulting photographs and drawings in writing. In addition, 34 individual interviews and 2 group discussions were conducted with children to explore the findings further and 10 individual interviews with local adults were conducted to elucidate the dynamics between adults and children. Our data revealed that young carers cope by mobilising social support, engaging in income generating activities and constructing positive social identities around their caring roles. We conclude that children's ability to cope is determined by the extent to which they are able to participate in their community and negotiate support from it.
Every school nurse comes into contact with young carers but in many cases the child’s caring role will remain hidden. This article will provide the information that every school nurse needs to identify young carers and the risks to their health, education and wellbeing.
For the past decade nurse education has incorporated service user and carer perspectives into their programme and research agendas. Moving from rhetoric to the reality of embedding adult service user and carer knowledge into nurse education this paper discusses how this good practice was extended to young people under the age of 18. Globally, the mental health of young people is coming under the spotlight and based on this two “World Café” events focusing on young people and their mental well being were organised. Targeting a multi-agency audience the aim was to develop a partnership consortium, bringing together local organisations involved in promoting the mental well being of young people. This paper reports on the first World Café, led by two local young people's groups, ‘Florescent Adolescent’ and ‘Vocal’. Following the presentations four important areas were identified (1) Inclusive rather than exclusive (2) Crystal ball gazing — young people's futures (3) A hole in the net — catching young people at the right time (4) Exposing the hidden agenda. The day resulted in three collaborative research proposals and the realisation that young people need opportunity to participate through utilising more innovative ways of engaging with the professional adult world.
The author highlights the plight of young carers whose support needs are often overlooked and whose hard work is seldom recognised. Cites four references.
A significant number of children and young people are caring for a parent or parents with mental health problems defined as serious or severe, and enduring. Children and young people with these responsibilities are often referred to as young carers. It is important that they are recognised as children and young people in the first instance, then as carers. And what helps these young people most is the support that is provided to their parents.
The article presents a study that examined the experiences, needs and service responses to the 290,000 young adult caregivers aged 16-24 in Great Britain today. It says that the research included a literature review, secondary analysis of 2001 Census data, a survey of 25 young caregivers projects, a survey of 13 adult carers services, focus groups with 29 young caregivers aged 16 and 17, discussions with staff at focus group sites, and in-depth interviews with 25 young adult caregivers aged 18-24 across the country.
The article talks about the challenges faced by young adult carers who participated in a round-table event hosted by the policy and research organization, Learning and Work Institute. Among the presenters include young adult carers who provided a narrative of their challenges, Nicola Aylward, head of learning for young people at Learning and Work Institute, and the Princess Royal.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South West region. In 2001 there were 492,451 carers in the South West region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South West region.
This research provides a three-way perspective on the experiences & needs of children who are living with & caring for parents with severe & enduring mental illness. The views of children, parents & key workers were sought in order to provide deeper insight into the needs of families & the nature of interfamilial relationships, as well as the relationships between service users & providers. Child protection & medical research has long proposed a link between parental mental illness & the risk to children of abuse, neglect & developmental delay. The inevitability of risk associations is challenged by the research described here & outcomes for children of caring for parents with mental illness are discussed not simply in terms of risk to children but more broadly in respect of, for example, positive parent-child relationships. References. [Copyright 2006 John Wiley and Sons, Ltd.]
Each week the Social Care Institute for Excellence puts forward research findings in a specific field
Many children and young people are involved in caring for members of their family. In the 2001 census 175,000 children and young people in the UK were identified as carers – often for a parent with physical or learning disabilities, mental health problems, chronic illnesses or problems of addiction. This is probably an underestimate, as many young carers are reluctant to disclose their situation to professionals, especially if the parent has a mental health problem. A “young carer” is never an inevitable role, and it can be argued that young carers are created because services do not always offer the support parents need.
Young people who provide unpaid care for a relative with chronic illness or disability are a growing focus of public policy and research in Australia and internationally. Support services for these young carers have emerged, but not enough is known about their effectiveness. This article develops an analytical framework that categorizes young carer support services according to their goals and the types of intervention provided. The analytical framework is based on Australian data. It is applied to young carer support services available in Australia but may be applicable to other countries. The aim of the framework is to provide a structure for assessing the effectiveness of current services in supporting young carers by clarifying service goals and identifying gaps in existing service provision. The framework contributes to conceptual discussions about young carer supports, and it can be used to guide future policy development.
The article draws on Australian and international literature as well as findings from a recent Australian study on young carers. The proposed framework groups young carer support services according to three overarching goals: assisting young people who provide care; mitigating the care-giving responsibility; and preventing the entrenchment of a young person's caring role. The framework is applied to an audit of Australian support services for young carers, illustrating how it can be used to assess existing supports for young carers and inform future policy development. The findings suggest that most services in Australia fall into the categories of assistance and mitigation, while few contain preventative elements.
In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid-1990s, the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training). Such a concern is predicated on cultural assumptions, now being undermined in response to economic crisis, about the existence of a critical age for transition to adulthood, successful navigation of which requires a time-limited period of personal freedom. Our findings suggest that, whereas support workers mostly see young caring in terms of risks to future prospects, young carers themselves identify not only current stresses, but also personal gains, from their experiences. Instead of categorising the timing of their caring as a source of risk, young carer respondents questioned service shortcomings which they felt made it harder for them to cope in the present, particularly inadequate social service support for relatives with disabilities and insensitivities in the education system. They did not see service providers as helping them to manage their futures. We locate this tension in risk social science debates about individualisation, transition to adulthood in late-modern society and risk management for those deemed vulnerable.
This research looks at the experiences of 60 young people caring for an ill or disabled parent. It examines how young carers' move into adulthood and how their caring responsibilities affect this.
Several factors influence whether young people take on such roles - most critically the availability of external support services that meet the needs of the whole family. The study concludes that the emphasis in policy and practice should be on preventing children from taking on inappropriate caring responsibilities in the first place and stopping these roles from becoming institutionalised where they have already begun.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the Yorkshire and the Humber region. In 2001 there were 516,546 carers in the Yorkshire and the Humber region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the Yorkshire and the Humber region.
This paper envisions children and young people who provide informal care to family members with illness or disability as active agents within the care relationship, whilst emphasising that this agency operates within constraints. These constraints include familial and kinship obligations, socio-economic and demographic circumstances and policy and service constraints. This paper examines the costs incurred and benefits conferred by young people who provide care. It presents the findings from an analysis of Australian national data on young people who provide informal care. It also presents some findings from focus groups conducted with young people involved in informal care-giving. The paper concludes with a discussion of the policy implications of the research. [Copyright Elsevier B.V.]
Mainstream literature on paid care for children, frail elderly people and people with chronic illness or disability, and unpaid care provided usually by family members within households and kin networks tends to establish dichotomies: formal/informal, commodified/non-commodified. Recent feminist literature rejects these dichotomies, developing models of social care in which the interconnections of paid and unpaid care are mapped within policy frameworks. This paper uses theoretical frameworks of ‘social care‘: care as labour; care as a relationship embedded in obligation; care incurring a range of costs; to explore two case-studies: young carers aged up to 24 years who are most often caring for a co-resident parent; and grandparents who are the primary carers of their grandchildren. The latter may occur under the aegis of child protection authorities, or Family Court orders, or in informal arrangements, not licensed by state authorities. This analysis of the international literature and Australian research data affirms the power of the social care framework, and also shows the influence of social policy settings on informal care provision.
Little is known about the population of caregiving youth in the United States. We sought to describe the participation rates, demographics, and caregiving tasks among sixth graders served by the American Association of Caregiving Youth (AACY) in its Caregiving Youth Project (CYP) in Palm Beach County, FL and evaluate the perceived benefit of AACY services. Sixth grade enrollment data from eight middle schools between 2007 and 2013 were obtained from The School District of Palm Beach County and the AACY. Data were obtained using a retrospective review of AACY program participant files. These files contained responses to evaluative questions from both students and family members. Overall, 2.2 % of sixth graders enrolled and participated in the program. Among the 396 caregiving sixth graders studied, care recipients were predominantly a grandparent (40.6 %) or parent (30.5 %). Common activities included providing company for the care recipient (85.6 %), emotional support (74.5 %), and assistance with mobility (46.7 %). Youth reported a median of 2.5 h caregiving on weekdays and 4 h on weekend days, while families reported fewer hours (1.6 and 2.3, respectively). At the end of the school year, the sixth graders reported improvement in school (85.5 %), caregiving knowledge (88.5 %), and self-esteem (89.5 %). Slightly over 2 % of sixth graders participated in the CYP. While support services may mitigate the negative effects of the time spent by caregiving youth, more prospective research is needed to better define the true prevalence, tasks, and time spent caregiving among this subpopulation.
The aim of this study was to examine the ways in which young carers come to the attention of voluntary and statutory agencies and to identify the ways young carers needs are assessed. The report sought to identify the approaches that are successful in meeting the social, economic, educational and health needs of young carers and to assess the results of evaluations of the way the services are delivered.
The author discusses activities of a social inclusion team working at George Spencer Academy, which specializes in aiding the learning of young carers. He cites a research by BBC, which suggests that schools should identify the support needs of such vulnerable group of students by looking out for particular factors signifying that the student is a young carer. Among various facilities, the policy also offers individualized support, staff training, and reasonable allowances.
Objectives: A substantial number of children are involved in informal caregiving and make a significant contribution to health care delivery. While this places high levels of demand on their coping resources, there is some evidence that these children find benefit in their caring role. The Young Carers Perceived Stress Scale (YCPSS) (Early et al., 2006, J. Child Fam. Stud., 15, 169) identified a positive dimension of caring, which appears to have potential in terms of measuring benefit finding in this group. The current study aimed to further explore YCPSS to clarify this dimension.
Design: A survey design using questionnaire data collection was used with a sample of 329 children between the ages of 12 and 16.
Methods: A pool of 52 items based on the YCPSS was administered along with measures of support, coping, and psychological distress to 329 young carers attending organized support groups.
Results: Factor analysis with maximum likelihood extraction identified six factors including one 8-item dimension labelled benefit finding, which had good internal reliability and produced a pattern of correlations with support, coping, and psychological distress indicating initial evidence of validity.
Conclusions: The study produced initial evidence for reliability and validity of an 8-item benefit-finding measure, as well as a clearer set of dimensions for the original YCPSS. The resulting measures should prove useful in further explorations of benefit finding and resilience in young carers.
Background: Many men diagnosed with mental health problems are also fathers. This literature review addresses issues relating to both the fathering role taken on by men who have mental health problems as well as the impact of their mental health on their children. Material: An integrative review of the literature was conducted from studies originating in four countries, resulting in an analysis of 31 journal articles. Discussion and conclusions: Most of the quantitative literature focuses on the many risks and negative outcomes for children. However, qualitative studies suggest positive outcomes such as strong parent-child relationships, which demand further attention both in research and in practice. [Reprinted by permission of Sage Publications Ltd., copyright holder.]
Analysis of the 2001 UK census found that 114,000 children aged five to 15 acted as informal carers for an adult with a chronic illness; 5,000 of them provided more than 50 hours of care each week. Concern has been rising for some years about the health and social consequences of being a young carer…
This report describes and evaluates four projects within the Partnership Drugs Initiative. Two of the projects are designed to intervene with young people who are engaged in substance misuse, one provides support for young carers from families in which a parent is misusing drugs or alcohol and one seeks to reduce the impact of parents’ drug use upon their children. The purpose of the report is 1) to describe and assess the impact of the four projects upon their various client groups and 2) to review what we can learn from them.
The aim of this study was to explore how young (16-25 year old) informal carers of a person with a mental illness experience and use support. In a mixed method approach, we interviewed 12 young carers, and 241 completed a self-administered questionnaire. While the young carers strive to maintain control, their main support seems to be others in their lives, who often define the situation differently. The carers said web-support, counseling, and group counseling might be helpful, yet very few had any professional support. Young carers are greatly in need of support and it should be provided.
The article focuses on the Powerhouse Project (PHP) of the Young Carers Initiative. It is aimed at promoting the well-being of young carers and their families across the Niagara and Haldimand-Norfolk regions in Ontario. Young carers, through PHP, can meet other children in caregiving roles and establish peer relationships. Information on the three goals of PHP is provided. Special PHP events for young carers include horseback riding, hikes and rock climbing.
This study investigated the relationships between resilience factors (mental health literacy, social connectedness, coping strategies) frequently targeted in interventions, and both adjustment (depressive symptomatology, life satisfaction, prosocial behaviour, emotional/behavioural difficulties) and caregiving outcomes in children (12 - 17 years) of a parent with mental illness. Forty-four participants completed questionnaires. Correlations showed weak support for the predicted beneficial associations of mental health literacy with caregiving and adjustment, stronger support for the beneficial relationships between social connectedness and adjustment, and strong support for the adverse links of disengagement and involuntary coping strategies with adjustment and caregiving. Findings suggest that some resilience factors have a differential impact on adjustment and caregiving, and support the focus of interventions on modifying resilience factors.
This article highlights five ways that councils can better support carers. It draws on good practice from Sunderland City Council, Rochdale MBC, Hertfordshire CC and Sefton MBC, the four councils who were awarded beacon status last year for the way they supported carers.
This study, funded by The True Colours Trust in association with The Princess Royal Trust for Carers, investigates the experiences, needs and service responses to the 290,000 young adult carers aged 16-24 in the UK today. The research is a ‘mixed-methods’ investigation and includes a literature review, secondary analysis of 2001 Census data, a survey of 25 young carers projects, a survey of 13 adult carers services, five focus groups with 29 young carers aged 16 and 17, discussions with staff at focus group sites, and in-depth interviews with 25 young adult carers aged 18-24 across Britain. The data presented in this report provides new insights into the diverse experiences and needs of what is a ‘hidden’ and neglected group of carers. The report provides data on the number of young adult carers; the changing nature of their caring tasks and responsibilities; their experiences of education at school, college and university; their friendships, relationships, leisure and lifestyles; income, jobs, careers and aspirations; issues to do with leaving home and independence; the role of young carers projects; emerging service responses; and how their needs can best be met. The report also includes a series of recommendations for service development for those working with carers aged 16-17, carers aged 18-24 and adult carers.
The Scottish Executive commissioned this literature review. The overall aim was to provide a comprehensive summary of existing knowledge of how young carers are identified and how their needs are assessed and met. Therefore the review largely concentrated on the interaction between young carers and their families on the one hand and service agencies on the other. Understanding the needs of young carers was an important context for the review, but was not the primary focus. The specific objectives were to: • examine the ways in which young carers come to the attention of voluntary and statutory agencies, and factors inhibiting identification • identify the ways in which young carers’ needs are assessed • examine approaches to service provision by both statutory and voluntary agencies • identify approaches that are successful in meeting the social, educational and health needs of young carers • assess the results of any evaluations of the ways in which services are delivered.
Reviews the non-fiction book 'Children Caring for Parents With Mental Illness,' by Jo Aldridge and Saul Becker.
This publication provides an overview of debates and reports on education, services for children and training in Scotland tabled in the House of Commons and House of Lords for the period March 3 to 7, 2014. Member of Parliament Linda Fabiani questions Minister for Youth Employment Angela Constance on various issues including the publication of the guidance on the administration of education maintenance allowance and the care.fair.share campaign for young carers.
Dear Editor, For too long, the needs of young carers have fallen between the growing gap that separates adults’ and children’s services. Recent news coverage has once again highlighted the needs of these children but it is time to move forward and look at implementing solutions.
A letter to the editor that offers a look on the needs of young carers is presented.
The article looks at the initial outcome of the British Columbia Young Carers Study. The study has been funded by the Hamptons Fund at the University of British Columbia and the Social Sciences and Humanities Research Council. One of the components of the study is to examine the prevalence of youth caring within the general adolescent population. The first stage of the study involved a survey of high school students at an urban centre in British Columbia. They found that 12.2 percent of the students are young carers.
Developing health care systems have placed an emphasis on unpaid, informal care giving from family members as a community health resource. It is estimated that there are between 19,000 and 51,000 young carers in the UK who are at increased risk of physical and psychological ill health. Therefore, the aim of this study was to explore the personal experiences of young carers in relation to their well-being using interpretative phenomenological analysis (IPA). Semi-structured interviews were carried out with five young carers and the verbatim transcripts served as the data for an IPA. Three themes emerged: (1) what caring means; (2) isolation and distancing from others; and (3) integrating caring. The participants struggled to make sense of caring, found it relentless, overwhelming and frustrating. They experienced stigma, which led to secrecy and withdrawal, cutting them off from their social worlds and the benefit of social support. They actively sought to integrate caring into their emerging sense of self and identity, and derived a sense of pride from caring and used this to combat feelings of uncertainty and isolation.
The author reflects on the invisibility of young carers in North America. According to the author, these young people are hyper-mature for their age and usually take on adult responsibilities in their families. He says these people sacrifice their childhood to care for family members. Information on support programmes for young carers in North America is provided.
The UK’s 290,000 young carers aged 16 to 24 often fall into the gap between adults’ and children’s services. Researcher Alison Petch reports
The article presents information about the written parliamentary questions from the Welsh Assembly during the period of October 19 to 26, 2006. Questions to the Minister of Culture regarding the quality of Public Libraries, to the Minister of Education regarding the newly-qualified teachers and their answers are presented. Questions regarding support for young carers, number of pupils taking A-levels Science and Mathematics in 2005-06, and risk of fire in schools are also presented.
This article discusses some of the findings of a small-scale, localized, qualitative study involving children and young people identified and processed as young carers, that are providing 'substantial care' for an adult while in primary and/or secondary school. It explores their views on managing to 'care more' whilst at school and the role that teachers and schools do and could play in supporting them. The voices of young carers suggest that educational support should be available 'as soon as' children become primary carers. The interviewees were critical of the factors that they perceived compromised their 'performance' at school. Some implications of these findings for implementing strategies for carers in schools are discussed.
This small-scale survey explored how effectively young carers were identified by councils and their partners. It also examined the assessment and delivery of services for young carers and their families. It drew on evidence from visits to eight council areas, focus groups with young carers and meetings with those who provide young carer support services
The carers' strategy sets out the Government's short-term agenda and long-term vision for the future care and support of carers The carers' strategy is underpinned by £255 million to implement some immediate steps alongside with medium and long-term plans. New commitments in the carers’ strategy include: £150 million towards planned short breaks for carers; £38 million towards supporting carers to enter or re-enter the job market and £6 million towards improving support for young carers. Other schemes include the piloting of annual health checks for carers to help them stay well and training for GPs to recognise and support carers. A more integrated and personalised support service for carers will be offered through easily accessible information, targeted training for key professionals to support carers, and pilots to examine how the NHS can better support carers.
Background: Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption. Methods: The aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children. Results: HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate. Conclusion: The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.
Many young carers are not using the services available to them. Independent researcher Berni Graham looks at one council's investigation of why this is the case.
Aim This paper reports the prevalence and its related sociodemographic factors of informal caregiving by underage children in Austria. The quantity and intensity of caregiving activities, the motivation for and effects of caregiving and how this differs from non-caregiving children were investigated. Background Young carers are a worldwide phenomenon. Due to methodological and sampling problems, little quantitative data are available. Design Cross-sectional, descriptive study. Methods Based on a random selection of 85 schools and 474 classes, a total of 7403 children aged 10-14 years completed a self-reporting questionnaire that asked for children's help in their families. Descriptive and inferential statistics were used to analyse the data. Results In the sample, 4·5% caregiving children were identified. The average age of young carers was 12·5 years. Most young carers were female (69·8% vs. 52·7% in the non-young carers group). Young carers assumed more responsibilities (household tasks, general care and sibling care) than their peers. They showed a higher level of physical (e.g. headache 38·2% vs. 24·4%) and mental (e.g. to worry about 68·1% vs. 41·8%) adverse effects than non-young carers. Extrapolation suggests a rate of 3·5% young carers in underage children of 5–18 years in Austria. Conclusion: Data on national level are essential preconditions to initiate support for young carers. Nurses can promote children's health and well-being through prevention of an inappropriate caregiving role.
The government response to the consultation on draft regulations to support young carers and their families. It includes a summary of the responses received and the list of organisations that responded to the consultation. The public consultation included two online forums held with young carers and with young adult carers respectively. The draft regulations set out: the matters to which a local authority must have regard in carrying out a young carer’s needs assessment; the manner and form of a young carer’s needs assessment; the matters which a local authority must take into account when carrying out a young carer’s needs assessment; and, a definition of the term ‘whole family approach’.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East of England region. In 2001 there were 517,877 carers in the East of England region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East of England region.
The article focuses on young carers in Great Britain. It states that the recent split of council social services for adults and children has resulted in young carers falling through the gap. A pilot project is being made with the Children's Society to develop pathways for young carers and their families.
Rampant levels of AIDS and poverty have made many children in sub-Saharan Africa the primary caregivers of their ageing or ailing guardians. This paper reports on a social action fund initiative that brought caregiving children together to set-up and run income generating activities as a group with the aim of strengthening their coping capabilities. To further our understanding of child-led microfinance activities, this paper explores how intra-community relations can both facilitate and undermine child-led activities, and how these activities in turn can further strengthen some intra-community relations. Twenty-one children (aged 12–17) and six guardians participated in this study. Data included draw-and-write compositions (n=21), essays (n=16), workshop notes and proposals (n=8) and in-depth interviews (n=16). A thematic analysis revealed that the children actively drew on the expertise and involvement of some guardians in the project as well as on each other, developing supportive peer relations that helped strengthen their coping capabilities. However, the children's disenfranchised position in the community meant that some adults took advantage of the child-led activities for their own personal gain. Some children also showed a lack of commitment to collective work, undermining the morale of their more active peers. Nevertheless, both guardians and the children themselves began to look at caregiving children differently as their engagement in the project began to earn them respect from the community – changing guardian/child relations. The paper concludes that microfinance interventions targeting children and young people must consider children's relationships with each other and with adults as key determinants of Project success.
The stress of care giving for spouses and adult children has been extensively documented in the empirical literature. More recently attention has been paid to children's involvement in family care giving. Qualitative studies in the social welfare field have highlighted the social restrictions caring places upon children. There remains a need, however, to understand what children are thinking and feeling in an effort to cope with their care-giving demands. This study used a focus group methodology and individual interviews to explore the experiences of 17 young carers aged between 10 and 16. Thematic analysis was employed to identify themes relating to the nature of stressors, their appraisal of them, and the coping strategies they use to manage the task of caring.
This chapter examines the impact of caring on the lives of young people (i.e. those under 18). The authors point to the difficulties in enumerating such carers. They estimate numbers in excess of 50,000. Although the issue of young caring is not new, research into the phenomenon is. The authors refer to the initial studies of the late 1980s and early 1990s. They focus on the work of the Young Carers Research Group (YCRG), established in 1992. The Group has an on-going work programme which aims to give young carers a voice, raise awareness and influence policy. The YCRG methodology centres on interviews with young carers. The authors highlight the advantages of this approach but also acknowledge its critics. They conclude that the 'child's voice' approach has been successful. Awareness is much increased and many YCRG recommendations have been translated into policy and practice. Cites numerous references.
An interactive toolkit, developed to support the implementation of the Social Services and Wellbeing (Wales) Act, which provides information and advice to support Local Authorities and Health Boards to undertake an assessment of care and support needs and carers' needs in their local area. The toolkit is in three main sections. Section one (the ‘What’ guide) looks at what is required under the Social Services and Wellbeing (Wales) Act, the benefits of carrying out an assessment, analysing the data, and what should be included in the report. Section two (the ‘How’ guide) covers project management, governance, partnership arrangements, and provides an outline plan of the 11 steps that should be incorporated into a project plan. Section three (the ‘Help’ guide) considers the individual component parts that make up the assessment. It provides links to resources and links to a supporting statistical data catalogue.
Original resource on the socialcare.wales website.
The article reports that nine-year old Chelsea Nye got a free cookery lesson from Ashley Palmer Watts, head chef of the Fat Duck restaurant in London, England. It notes that the chef was so impressed by a cookbook made by young carers at charity Jigsaw4u that he offered them the chance to hone their skills. It cites that Watts and the children cooked a three-course meal at the event in Mitcham, Surrey, England, organised by the charity.
Is it a sign of weakness for a social worker to feel emotional pain when a client dies in tragic circumstances? No, says Mark Sloman
Looks at a support group organized for young carers who have parents with a mental health problem. Highlights of the story of an 11-year old boy who lives with his mother with bipolar mood disorder; Estimated number of young carers who provide care for a parent with mental health problem; Impact of living with mentally ill parent on children.
This focus of this article is a qualitative, evaluative study of three Crossroads young carers projects. Focus group discussions took place with 24 young people aged 11-16 years. Data were analysed using a thematic content analysis approach. The themes of the research were: experiences of being a young carer, peer support, opportunities for time out and purposeful activities. The personal characteristics of the participants give rise to a number of worrying conclusions, that relatively young people were found to be undertaking primary caring roles over long periods of time. However, the groups were found to provide opportunities for young carers to experience a positive environment, participate in purposeful activities and have the chance to develop new friendships. Nevertheless, the literature suggests that provision of such projects is inadequate and under-resourced, which may disadvantage further a group of young people who are known to come from lower income families.
Schools play an important part in the lives of children and young people who have caring responsibilities for a family member with an illness, disability, alcohol or other drug problem or mental health condition but many of these ‘young carers’ report difficulty in attending, achieving and participating in education. This qualitative research project aimed to gather young carers' views about school, the challenges they face in engaging with education and their peers, and ways that the system might better support others like them. It found that significant caring responsibilities, a lack of appropriate and responsive support services to meet family needs and a lack of awareness and understanding within the education system significantly reduced young carers' capacity to fully engage with their learning. Young carers in the study called for more assistance in caring for their relatives, more flexibility and responsiveness to their home lives within the design and delivery of education, and better processes for identifying and responding to the challenges they encounter in participating in the life of the school community.
Young carers of people with mental health problems are highly hidden, ostracised and vulnerable. To make matters worse, many professionals from the social, health and education sectors are not fully aware of the difficulties and central issues facing young carers of people with mental health problems. In order to make young carers of people with mental health problems more visible and to explore gaps in need and good practice from the perspectives of professionals, 65 participants were interviewed. The sample included professionals from the social, healthcare and voluntary sectors. Respondents were asked to discuss their understanding of young carers and appropriate interventions and methods to address young carers’ needs. Findings highlight: young carers’ isolation, stigma and restricted opportunities; fears involving family separation and child protection; and examples of good professional practice. New findings and examples of good professional practice that provide holistic, sensitive and effective support include: young carer groups and forums; young carer days; raising awareness of young carers in schools, especially via technology such as DVDs and the Internet; and having key workers to befriend young carers so as to advocate for better care, to provide emotional and psychological support and to facilitate young carer involvement.
The article presents abstracts of studies about children who are living with and caring for parents with mental health problems, the pespectives of young carers, parents and professionals about child caregivers, and the experiences and needs of children caring for parents with severe and enduring mental illness.
Senior health figures, including Simon Stevens, the chief executive of NHS England, and Norman Lamb, the minister for care, met teenage carers in an event at the London Zoo.
Thousands of young carers and their families could lose more than £3,500 a year under proposed welfare reforms, according to The Children’s Society.
This government response sets out how Scottish Ministers have considered the findings of the consultation exercise on carers legislation and feedback from other engagement activity, and outlines what will be included in the Carers Bill. The response covers: the carer's assessment, now adult carer support plan (ACSP) and the young carer statement (YCS); information and advice; support to carers (other than information and advice); stages and transitions; carer involvement; local carer strategies; identification of carers and young carers; carer and cared-for person(s) in different local authority areas; links between ACSP/YCS and cared-for person's assessment.
A PIONEERING NURSE is at the forefront of a programme to help improve the physical and mental health of young carers. The article focuses on Laura Ulyatt, a young carers' health nurse in Oxfordshire, England.
This article provides the first cross-national review and synthesis of available statistical and research evidence from three developed countries, the UK, Australia and the USA, and from sub-Saharan Africa, on children who provide substantial, regular or significant unpaid care to other family members ('young carers/caregivers'). It uses the issue of young carers as a window on the formulation and delivery of social policy in a global context. The article examines the extent of children's informal caregiving in each country; how young carers differ from other children; and how children's caring has been explained in research from both developed and developing countries. The article includes a review of the research, social policy and service developments for young carers in each country. National levels of awareness and policy response are characterized as 'advanced', 'intermediate', 'preliminary' or 'emerging'. Explanations are provided for variations in national policy and practice drawing on themes from the globalization literature. Global opportunities and constraints to progress, particularly in Africa, are identified. The article suggests that children’s informal caring roles in both developed and developing nations can be located along a ‘caregiving continuum’ and that young carers, globally, have much in common irrespective of where they live or how developed are their national welfare systems. There is a need in all countries for young carers to be recognized, identified, analysed and supported as a distinct group of ‘vulnerable children’.
Background Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects.
Method Two studies are reported. In study 1, 410 young carers were recruited via The Princess Royal Trust for Carers database of UK projects and asked to complete an initial item pool of 42 and 75 questionnaire items to assess caring activities and caring outcomes respectively. In study 2 a further 124 young carers were recruited.
Results Following exploratory principal components analysis in study 1, 18 items were chosen to compose the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18), and 20 items chosen to compose the Positive and Negative Outcomes of Caring Scales (PANOC-YC20). In study 2, normative and convergent validity data on the two instruments are reported.
Conclusion The MACA-YC18 is an 18-item self-report measure that can be used to provide an index of the total amount of caring activity undertaken by the young person, as well as six sub-scale scores for domestic tasks, household management, personal care, emotional care, sibling care and financial/practical care. The PANOC-YC20 is a 20-item self-report measure that can be used to provide an index of positive and negative outcomes of caring.
Young carers are children under the age of 18 who provide care to a family member. Concern has been raised within the welfare services that these children are involved in levels and types of care that are developmentally inappropriate and that jeopardize their health and development. Despite a vast literature on the psychological impacts of caregiving upon adult carers, there has been little investigation into the impacts upon children. This review focuses on one main area of research that has examined children as caregivers; research on the ‘parentified child’. This literature derives from the traditions of systemic theory and is primarily concerned with establishing how caregiving as a child impacts upon adult functioning. Studies suggest that identity development and personality, interpersonal relationships and relationships with an individual’s own children could be affected. How the literature conceptualizes caring and the psychological theories that underpin the concept of parentification are discussed. The empirical studies are then summarized under four headings; precursors to parentification, impacts upon adult relationships, direct impacts upon the child and circumscribed research. Conceptual and methodological limitations are discussed. These include the lack of a clear definition of parentification, and problems with measurement, sampling and design. Finally, recommendations for improving and developing the parentification literature are presented that draw upon studies of resiliency, adult care giving and attachment.
This paper looks at the work of 18 local authorities to create systems and support to help families with young carers. It explores some of the positive outcomes from taking a family-focused approach and showcases good practice in this field.
The term ‘young carer’ refers to those youth under the age of 25 years who provide substantial unpaid support to a family member due to factors including, but not limited to, familial or parental absence, disability, mental health issue(s) or problems with alcohol and/or other drugs. In the UK, national statistics have been integral to tracking the prevalence of young carers while serving as an important tool towards the development of (and justification for) a national legislative framework supporting these youth. In Canada, research and awareness for young carers remains in its infancy and available national datasets have yet to be examined in relation to youths providing unpaid caregiving. As a result, this research provides the first trend analysis of youth-based caregiving in Canada using census data for the 1996–2006 time-period. Methodological limitations of official statistics are also discussed in terms of conceptual and operational constraints limiting the full identification of all those potential young carers.
This strategy identifies the actions that the UK Government plans take over the next four years to ensure the best possible outcomes for carers and those they support. Over the summer of 2010, the Department of Health sought views on what these priorities should be. Over 750 responses were received, representing the views of over 4,000 carers. These views are summarised in an Annex and quotes from respondents are included in the strategy. Key messages included: the need for better and timely access to health, social care and financial information; often feeling excluded by clinicians; finding accessing assessments overly bureaucratic and slow; feeling forced to give up work to care; neglecting their own health and well-being; the need breaks from caring; the value of Carer’s Allowance is considered inadequate; and more needs to be done to identify and support young carers. Four priority areas have been identified for the strategy: supporting those with caring responsibilities to identify themselves as carer
A SCIE Research briefing provides up-to-date information on a particular topic. It is a concise document summarising the knowledge base in a particular area and is intended as a 'launch pad’ or signpost to more in-depth investigation or enquiry. It is not a definitive statement of all evidence on a particular issue. The briefing is divided into the different types of knowledge relevant to health and social care research and practice, as defined by the Social Care Institute for Excellence (SCIE). It is intended to help health and social care practitioners and policy-makers in their decision-making and practice.
The topic of this briefing is the health and well-being of young carers. There is no standard definition of the term "young carer". The National Strategy for Carers defines young carers as "persons under the age of 18 who have caring responsibilities for another family member who is either unwell (from either mental or physical illness) or disabled". A more detailed definition is provided by the Blackwell Encyclopaedia of Social Work: "Children or young persons under 18 who provide or intend to provide care, assistance or support to another family member. They carry out, often on a regular basis, significant or substantial caring tasks and assume a level of responsibility which would normally be associated with an adult". The definition and classification of a young carer is recognised as very important because it carries with it certain rights to services, such as an assessment of needs. This briefing considers young carers performing a caring role for parents only, rather than for siblings or other family members. The group of parents considered for this briefing include the physically disabled and chronically ill, and parents with learning disabilities, mental health problems or problems of addiction.
In this article the authors explore the day-to-day lives of two groups of young people. Both were the subject of research activities carried out between 1997 and 2000. The outcomes of that work into the lives of young carers and young people with ME (myalgic encephalomyelitis) have been extensively documented elsewhere; here we draw out some of the common factors that serve to socially isolate and exclude young people who are heavily reliant on, or are drawn into supporting, home-based caring relationships. We argue that the current social exclusion debate's primary focus on the public sphere (with an emphasis on such matters as homelessness and school exclusion) neglects the ways in which young people can experience similar forms of disadvantage in the private sphere. A more critical analysis of the impact of social exclusion on young people requires a wider perspective, which examines and clarifies the interconnectedness of the public and private domains of young people's lives. The research presented in this article highlights the ‘common experience’ of young people’s exclusion in the private and public sphere and raises further issues regarding young people’s invisibility and professional practice and unease when faced with the complexity of young people’s lives.
Presents school management guidelines for dealing with child caregivers in Great Britain. Tendency to be regularly late or to hand in homework on time; Looking after family members with disabilities, mental illness, or substance abuse problems; Experience of schooling; Impact of caregiving responsibilities on academic achievement.
The article discusses the importance of supporting carers in Great Britain. It states that supporting carers is cost-effective because it prevents crisis intervention, unfitting hospital admission, and delayed transfer of care .It also mentions that if they are not supported, their physical and mental health will be at risk and young carers will have difficulty at school.
Adults with severe and enduring mental health problems are amongst the most marginalised and vulnerable people in our society. In providing care for these individuals, mental health professionals may potentially overlook the fact that many of these people are also parents: • There are an estimated 50,000 – 200,000 young people in the UK caring for a parent with mental health problems. • Many of these young people will provide help and support for a parent. • Some of these young people will be providing care beyond a level that is appropriate for their age. They will be ‘young carers’. • This inappropriate level of care puts young carers’ own physical and mental health at risk. These children and young people may come into contact with a variety of professionals in their daily lives, and some will be known to mental health professionals, but the majority will be unknown either to statutory or voluntary services. Education professionals may come across many of these individuals, but may not recognise them. The young carers may not self-identify as young carers, and may not wish to identify themselves to others. Nevertheless, some degree of intervention is required, since young carers are likely to suff er problems with school, such as: • regular lateness or absence; • difficulty completing assignments on time; • disruptive behaviour; • difficulty developing friendships; • being bullied; and • leaving without any formal qualifications.
Away from formal mental health and education settings, many young carers are able to find help and support in one of the many young carers’ services that operate across the UK. These services may play an important part in providing young carers with an opportunity to fi nd: • respite from care duties; • leisure time activities; • one-to-one support; and • the chance to socialise with peers.
However, many statutory and voluntary services coming into contact with these carers may not feel confi dent in providing advice or support on mental health and mental illness. Hence, MyCare is an investigation of the experiences and needs of young carers aged 9-25 whose parent or parents may suffer from severe mental illness. It is an explorative investigation of the experiences of young carers of parent(s) with severe mental illness, their needs, and how professionals from a variety of disciplines respond to these needs.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South East region. In 2001 there were 732,483 carers in the South East region, which is 9% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South East region.
Children’s well-being is linked to a complex web of factors including the child’s personality, inherent protective mechanisms, family relationships, social capital, and economic status. Young carers are particularly at risk from poor mental health outcomes and low well-being. In this study the impact of immersive activities in nature on the well-being of 8 young carers (3 girls and 5 boys; aged 9–13 years) was explored. The immersive woodland activities included practical skills such as fire making, cooking, and using tools as well as team building and activities to help build trust. A mixed method, pre-test/post-test approach was undertaken using Emotional Literacy Checklists and interviews, poems and discussion. There were measurable improvements—specifically in motivation and self-awareness—in the young carers’ emotional literacy as reported by the parents and teachers. The well-being indicators that were referenced most frequently by parents and teachers related to the children’s social relationships and their development as individuals. The children reported changes related to social, physical, and “natural connection” well-being.
Aim: The aim of the study was to reveal young carers' views of design of a web-based support system (WBSS) directed to them and the differences between their views and the views of project representatives (PRs), in a participatory design process.
Methods: Eight young people, 17–24 years, were involved in either a work or a test group. The work group participated in video-recorded design meetings with representatives of the project. Content analysis and Dewey's concept of public were applied on the data. The test group worked from their homes and data were collected via test forms and used as supplemental data.
Results: Four themes were revealed, constituting key parts in the design of the WBSS: Communicating the message, Ideational working principles, User interaction and User interface. Furthermore, decisive differences between the views of participants and PRs were found.
Conclusion: The four key parts should be considered in a WBSS directed to young carers. The study also suggests that early user involvement and critical reflection in the design process itself may be crucial to discern differences in perspective between designers and users.
The explosion of interest in young people as carers over the last decade and a half conceals the fact that there are still no reliable estimates of the number of young people with caregiving responsibilities. This is even more problematic in circumstances where the 'looked after' person has a mental health problem. In this study, we reflect on what can be done to identify, assess and support young people in these circumstances. We draw on selected findings from a study that has been examining the constituents of good assessment practice in work with family carers supporting relatives with mental health problems. The study embraces different carer groups but this paper concentrates on the experiences of young carers at one study site where Barnardo's and partner organisations had developed a joint initiative targeting young people who are looking after parents and relatives with mental health problems. Following a review of the literature about young people as carers, the paper describes how Barnardo's worked to support them through its young carers projects. Based on face-to-face interviews with the young people (N = 10) caring for a mother with mental health problems, the main part of the paper provides an account of how they talk about, make sense of and evaluate the support they have received through this combined initiative. The findings underscore the value of one particular young carers project, and provide clues about what lessons may be transferable to other similar projects.
Website providing a range of resources to help support social work practice with carers. It aims help social workers to develop a better understanding of the issues carers face and provides tools to help put this learning into practice. Resources cover general information about social work with carers, links to resources about social work law and practice, tools and training materials. The site also includes five case studies which illustrate how social work can provide support to carers. Each case study includes information about the case, examples of carers assessment and support plans, and tools and resources to help social workers consider their own practice. The site has been commissioned by the Department of Health and developed by RiPfA in partnership with carers along with support from Carers UK and the Carers Trust.
Young carers are a global phenomenon. The UK estimates it has in excess of 175 000 young carers, the onset of their caring role often occurring between 8 and 10 years of age. Of these, 17 000 are caring for a parent who has severe mental illness, a significant factor for children entering the health and social care system, as up to 60% experience mental health difficulties themselves. This paper reports on the outcome of a participatory project aimed at better understanding the needs of young people. A World Café event was hosted, bringing together those involved in promoting the mental health of young people in a partnership consortium. The event was led by young service users and carers. Important issues raised by the young carers were being excluded from being included; stuck in the here and now, ignoring the future; a hole in the net; and ensuring the hidden is on the agenda. The World Café gave the university the privilege of insight into what local young carers need to improve their mental health, and more importantly, how we can utilize our skills to help them achieve their goals.
Objectives: While the consequences of caring for younger people with dementia have been a growing area of research, little is known about the children of these individuals. This study aimed to discover whether children of younger people with dementia can be compared to other young carers, the impact of their caring on mood, burden and resilience and what could promote coping. Method: In-depth interviews were carried out with 12 participants aged 11-18. A grounded theory methodology was used, supplemented with three quantitative measures. Results: Four higher order categories were identified focusing on: discovering dementia; developing a new relationship; learning to live with it and going through it together. Few participants showed depressive symptomatology, but more than half showed high levels of burden and most showed moderate levels of resilience. A three-stage process model of adapting to dementia is proposed, with children moving through grief to emotional detachment and increased maturity. Conclusion: This study has implications for service development in light of the National Dementia Strategy and proposals for whole family approaches for young carers. Whole family working by both dementia and children's services could reduce the burden on children of people with young onset dementia.
The UK children's commissioners met with 50 children who offered their questions about policy & personal experiences to be answered by the panel. Youths from organizations including the Liverpool Dyslexia Project & Barnardo's Action with Young Carers looked to the panel for more inclusion & further action to benefit their causes.
There has been a great deal of attention paid to young carers in recent research, social policy and service provision. In this paper we report on a survey and interview study of 46 young people aged 15 to 18, nine of whom had experience as young carers, to explore the ways in which young people construct the young carer and their disabled parent. A key theme arising from the interview data analysis is the construction of a series of normative assumptions about 'normal' childhood through which young carers and their disabled parent are viewed as non-normative and deficient. The predominantly negative construction of both parent and child/carer is critically analyzed and alternatives suggested in the discussion of these findings.
Young carers are children and young people who look after a family member with illness, disability or mental health or substance misuse problems. Often the relative is not getting the support needed from statutory services. Of an estimated 175,000 young carers, 13,000, including 3,500 at primary school, provide more than 50 hours a week. Asks why they are hidden and discusses the failing education and adults’ services. Most adult carers, let alone young carers, are unaware of their rights. A handful of local authorities have a child-friendly carers assessment tool, but most professionals are unclear who should assess young carers and under what legislation.
This paper presents a brief review of literature relating to children in families with a disabled member, including the 'young carers' and disability studies literature, and relevant works from the social psychology and sociology of childhood. Key themes identified in the literature are then illustrated by findings from two exploratory research studies that sought to explore the experiences and service needs of children in families with a disabled member, within two Scottish areas. The authors suggest that, although young people affected by disability in the family, including young carers, face significant problems, particularly in socially disadvantaged areas, there are other issues that need to be addressed. Alternative conceptual frameworks are proposed, which challenge the dominance of the young carers research paradigm.
This study examined a stress/coping model of adjustment in early caregiving. It was hypothesized that better adjustment would be related to higher social support and approach coping, and lower stress appraisals and avoidant coping. One hundred young carers aged 10-25 years completed questionnaires. Predictors included choice in caregiving, social support, stress appraisal and coping. Dependent variables were global distress and positive outcomes (life satisfaction, positive affect, benefits). Correlations supported all hypothesized relations between the stress/coping predictors and adjustment outcomes. Regression analyses showed social support as the strongest predictor of adjustment, whereas coping and choice in caregiving emerged as weaker predictors and stress appraisal was unrelated to adjustment. The stress/coping framework and findings have the potential to inform interventions designed to promote well-being in young carers. Copyright © 2007 SAGE Publications Ltd.
“I go to the hospital with my mother when she is sick. I can’t go to school and leave her in so much pain. I won’t concentrate.” Millions of adolescents live with AIDS-affected parents or primary caregivers. Little is known about educational impacts of living in an AIDS-affected home, or of acting as a “young carer” in the context of AIDS. This study combined qualitative and quantitative methods to determine educational impacts of household AIDS-sickness and other-sickness. Six hundred and fifty-nine adolescents (aged 10-20) were interviewed in high-poverty areas of urban and rural South Africa. Qualitative findings identified three major themes of missing school, being hungry at school, and concentration problems due to worry about the sick person. In quantitative analyses, living in an AIDS-affected home predicted all these three outcomes (p < .001) compared to homes affected by other sickness and to healthy homes, and independent of sociodemographic cofactors. This study demonstrates that familial AIDS-sickness is associated with negative educational impacts for adolescents. It is important that policies are developed to support young people in these circumstances to continue with their education.
Young adult carers experience significant disadvantage as a result of their caring responsibilities--not least in education. While there is some creative and flexible provision out there, the author stresses that too often providers fail to take account of the specific needs and responsibilities of young carers. The author presents the comments made by young adult carers who participated in focus groups and interviews as part of recent NIACE research, "Access to Education and Training for Young Adult Carers," funded by the Nuffield Foundation. They give an indication of the day-to-day difficulties faced by these young people. NIACE's research identified a range of factors that can have a positive impact upon young adult carers' engagement in learning and improve their wellbeing, these include: (1) flexible provision; (2) relaxed provision; (3) sensitive arrangements; (4) emotional support; (5) Holistic support; and (6) effective multi-agency working. Building on the findings of this research, NIACE has recently secured funding from the Department of Health's Third Sector Investment Programme for a project called "Who Cares? Promoting Family Focused Learning Opportunities for Young Adult Carers." This project will support practitioners who work with young adult carers to develop learning opportunities that are family-focused and responsive to their needs.
There are 166,363 young carers in England, according to latest census data released on 16 May 2013. The Children’s Society believes this could be just the tip of the iceberg. Many young carers remain hidden from official sight for a host of reasons, including family loyalty, stigma, bullying, not knowing where to go for support. Some young carers are as young as five years old.
This report provides a valuable insight into the daily lives and outcomes for young carers, by using data from the Longitudinal Survey of Young People in England (LSYPE) publically for the first time. We know from our decades of experience of working with young carers across England, that caring can cost young people dearly if they are not given the opportunities to participate in all aspects of life. They can miss out on a huge range of opportunities that so many other children and young people take for granted, from educational opportunities, to spending time with friends and having time and space to do their homework.
It also reveals how young carers are gaining fewer qualifications and are therefore less likely to earn a decent living. We are calling for support for these children, to make sure that they have the same opportunities as other children. We hope to bring about change by influencing policy makers to help prevent these children and young people from caring in the first place.
Many young carers come from hidden and marginalised groups, including children caring for family members with mental illness or a substance dependency. This group of young carers was not captured in the latest census.
Children must be allowed to thrive and enjoy their childhoods, not be relied upon to take caring roles that are too often inappropriate. One young carer remaining under the radar, out of sight of the very authorities there to support them, is one too many.
Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers. Findings highlight a rich understanding of the broad spectrum of carer emotions and the huge emotional adjustments that are often involved. Diagnosis was seen to be imbued with negative emotions, such as fear, anger and denial. However, feelings of hopelessness and desolation were often counterbalanced by feelings of hope, satisfaction and the emotional rewards of caring for a loved one. Participants noted a clear lack of emotional support for family carers, with accompanying feelings of marginalisation, particularly during transitions and especially involving young carers as well as ethnic minorities. By way of contrast, carer support groups were suggested by professionals to be a holistic, effective and economical way of meeting carers’ emotional needs. This paper explores the challenge of family carer emotions from the perspective of managers and practitioners and draws out implications for research, policy and practice.
The Carers and Disabled Children Act (2000) has the potential to fundamentally change carers services and the way they are currently delivered. As yet, there is little published work that considers the implications of this Act either for local authorities or informal carers themselves. This paper examines the practical issues involved in the implementation of the Act in terms of: providing equitable services, defining terms, young carers and care package limits, local authority eligibility criteria and whether funding is adequate. The paper raises more questions than answers, but these questions are timely and necessary.
Reports that young carers in Wales are not receiving support services due to a shortage of resources in councils according to voluntary sector leaders. Reasons for setting up young carers' project; Effects of the insufficient funds on the program according to Lynne Hill, policy director at Children in Wales; Expectations of Hill on the grants that will be provided for the projects.
Discusses the "Young Carers in the UK: The 2004 Report" which focuses on the third national survey of young carers in Great Britain. Data collection for the survey; Information on people with care needs; Range of caring tasks young people perform; Percentage of young carers providing different tasks; Impact of caring tasks on educational experiences of carers; Percentage of young carers assessed under the Children Act.
Research on caregiving children tends to be limited to children's caregiving experiences of parents with a specific disease or disability. This has led to a common perception that children's caregiving is a single, uniform and often long-term experience. Whilst this is most certainly the case for many children in economically more advanced countries, this may not hold true in rural Africa, where poverty and AIDS can have significant knock-on effects on entire families and communities. This paper seeks to develop a more complex understanding of children's caring experiences by asking children whom they have cared for over time and explore the different pathways that lead to their caregiving at different stages of their lives. The study reports on qualitative data collected from 48 caregiving children and 10 adults in the Bondo district of western Kenya in 2007. A multi-method approach was adapted, with historical profiles, Photovoice and draw-and-write essays complementing 34 individual interviews and 2 group discussions. A thematic network analysis revealed that children's caregiving was not confined to a single experience. Children were observed to provide care for a number of different family and community members for varying periods of time and intensities. Although their living arrangements and life circumstances often gave them little choice but to care, a social recognition of children's capacity to provide care for fragile adults, helped the children construct an identity, which both children and adults drew on to rationalise children's continued and multiple caring experiences. The study concludes that agencies and community members looking to support caregiving children need to consider their care trajectories — including whom they care for as well as the order, intensity, location and duration of their past and likely future caring responsibilities.
Young carers are children and young people who look after family members with illness, disabilities, mental illness or substance misuse. Many of these young carers help with personal nursing care and administration of medication as well as household tasks and care of younger siblings. Inappropriate levels of caring can impact on a child's own emotional and physical health, educational achievement and life chances. There are many reasons why young carers may remain hidden and unsupported including reluctance among some families to acknowledge children's caring roles or involve agencies because they fear family breakup. It is essential to develop proactive practice that will enable families to feel able to ask for support. Health professionals have a responsibility and are in a key position to identify these vulnerable families and mobilise support services. The key to support is the development of a whole family approach to offering co-ordinated assessments and services to support the person with care needs and their family as well as the young carer. The Whole Family Pathway is an online resource directing practitioners to support for young carers and their families. Young carers say that they would like to be listened to, provided with information, supported at school and referred to young carers' projects. The Children's Society Include Project provides training and resources for professionals who work with young carers and their families.
The article discusses the results of a research report done by the group Carers Trust which shows that a quarter of young adult carers aged 14 to 25 still in school experience bullying and mental health problems. Topics covered in the report entitled "Young Adult Carers at School" include issues like school work struggles, support and time management. The report also urges the implementation of a clear framework of support for young carers among schools.
The article focuses on young carers who are often punished for poor attendance and punctuality by school staff who do not know about or understand their personal circumstances. It states that more than half of the young carers involved in the study had missed school with 60% saying they had problems with punctuality. It suggests that schools should work with local young carers services to raise awareness of those students who are affected and advises to use student and parent questionnaires.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North East region. In 2001 there were 275,813 carers in the North East region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North East region.
To learn more about the needs and experiences of young carers for patients of frontotemporal dementia (FTD) in order to create a relevant support website for young caregivers to dementia patients.
Two focus groups were held with a total of fourteen young carers aged 11-18. The data corpus was collected through a semi-structured interview facilitated by a medical journalist who had prior experience as a caregiver to a patient with FTD. The transcripts were narrowed to a dataset for descriptive analysis using a coding scheme to reveal the main themes of their responses.
Seven overlapping theme areas were: emotional impact of living with a parent with FTD, caregiving, coping, symptoms, diagnosis, relationships, and support. Based on the participants' responses, a website was launched providing supportive information and counsel for young carers.
Young carers saw the experience of caring for a parent with early-onset dementia as positive overall, but identified opportunities for professionals to assist them in overcoming stigma and the challenge of balancing childhood and adolescent development within this context.
For this special issue, the latest research findings on the topic of families living with parental psychiatric disabilities were solicited and compiled, to inform policymakers and practitioners with the best research available, while informing researchers about new developments in the field. The creative efforts of practitioners on the ground who strategically cobble together service responses for parents and families, as well as the extraordinary efforts of parents, adult children, young carers, and advocates who continue to bring attention to family issues in psychiatric rehabilitation, are applauded. These things are happening as we build the evidence base. That is, we are “crossing the bridge” to evidence-based practice while we are “building it.” This is not without its challenges, in policy, practice, or research. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
With improved accessibility to life-prolonging antiretroviral therapy, the treatment and care requirements of people living with HIV and AIDS resembles that of more established chronic diseases. As an increasing number of people living with HIV and AIDS in Kenya have access to ART, the primary caregivers of poor resource settings, often children, face the challenge of meeting the requirements of rigid ART adherence schedules and frequent relapses. This, and the long-term duty of care, has an impact on the primary caregiver's experience of this highly stigmatised illness – an impact that is often described in relation to psychological deprivation. Reflecting the meanings attached to caregiving by 48 children in Western Kenya, articulated in writing, through photography and drawing, individual and group interviews, this paper presents three case studies of young caregiving. Although all the children involved in the study coped with their circumstances, some better than others, we found that the meanings they attach to their circumstances impact on how well they cope. Our findings suggest that only a minority of young caregivers attach either positive or negative meanings to their circumstances, whilst the majority attaches a mix of positive and negative meanings depending on the context they are referring to. Through a continuum of psychosocial coping, we conclude that to provide appropriate care for young carers, health professionals must align their understanding and responses to the psychosocial cost of chronic care, to a more nuanced and contextual understanding of children's social agency and the social and symbolic resources evident in many African communities.
Yet further evidence has emerged of the huge number of young carers whose caring roles are not known to their school and who are therefore not receiving the support they need. Almost 500 young carers who were previously unknown to their schools were discovered during a project to offer young carers better recognition and support. The 35 schools taking part in the Young Carers in School programme reported a dramatic impact on the attendance, achievement and confidence of pupils who care for a loved one.
Presents a study which examined how the lives of young carers differ from other children and young people in the population who are not looking after someone who is sick or disabled. Method employed in the study; Personal and intimate care tasks undertaken by young carers; Effects of different caring experiences on children and young people's lives.
Reports that young carers in Wales are not receiving support services due to a shortage of resources in councils according to voluntary sector leaders. Reasons for setting up young carers' project; Effects of the insufficient funds on the program according to Lynne Hill, policy director at Children in Wales; Expectations of Hill on the grants that will be provided for the projects.
Young carers often take on practical and/or emotional caring responsibilities that would normally be expected of an adult. For many of these children and young people, caring has been shown to have a detrimental effect on their lives. For example, caring at a young age appears to be associated with poor health and well-being, bullying and poorer educational outcomes. However, previous research has tended to be retrospective, carried out using small surveys of secondary school-aged children or to use qualitative methods with young people associated with caring projects. In contrast, little is known about the extent and nature of caring undertaken by younger children. This paper reports findings from a random sample survey of 10 and 11 year old children in the final year of their primary school education. 4,192 children completed the Kids’ Life and Times (KLT) online survey in 2011. Twelve percent of respondents to KLT said they helped look after someone in their household who was sick, elderly or disabled. Supporting previous qualitative research, this survey showed that children who were carers had poorer health and well-being, reported less happiness with their lives, were more likely to be bullied at school and had poorer educational aspirations and outcomes than their peers who were not carers. These findings suggest that teachers need to discuss the issue of caring with children in the classroom in a general and supportive way so that young carers feel able to confide in them and seek support if they need it.
The article provides an overview on what is known about young carers in general and identify in and services in Canada. Young carers are defined as being anyone under the age of 18 years who is the primary caregiver in the family due to the parental illness, disability or addiction. It discusses the potential short and long term consequences of having to take on a care giving role within one's family that is age appropriately greater than one would expect in most families.
Reports on the increase in the number of young people who care for other individuals with disability, illness, or health problem in Great Britain, according to a study commissioned by the Princess Royal Trust for Carers. Number of people who carried out a caring role based on a 2001 census; Concerns on the caregivers.
The article reports on the fundraising effort of Anne Holmes, an elder of Righead United Reformed Church in East Kilbride, Scotland, for the charity South Lanarkshire Young Carers Forum.
The author reflects on her work at a child and youth care worker program in Algonquin, Ontario. She relates the stories of families that arrive at the shelter, as well as the sacrifices of young carers in these families. According to the author, her work at the shelter provided an opportunity to observe family functioning. She emphasizes that the goal of providing support and service to the family is to ease the responsibility or burden of the young caregiver.
When young people care for a parent with illness or disability their lives are different. This study 'examines the young carer's transition to adulthood'. The profile of 60 young carers is described; half were in lone parent families. Almost all were performing domestic tasks as well as providing general and/or personal care; some were also caring for younger children. Education, training and employment opportunities were, in reality, not available to them. Most of the families were outside the labour market and received welfare benefits. Social exclusion and poverty were widespread. One third of the families received no services at all. Caring had both positive and negative effects on the young carers who remained at home longer than their peers but matured earlier and had high levels of life skills and stress. The implications for policy and practice emphasize the need for services for these young carers.
This paper reports key findings from a study of young people’s engagement in ‘atypical’ activities in their families. The project focused on young caring and language brokering as two roles that are not assumed to be ‘normal’ activities for children and young people. The findings presented are from a survey of 1002 young people and from one‐to‐one interviews with a sample selected from the survey sample. The voices of young people in the interview study are used in the paper to illustrate the diverse range of childhood experiences. The paper discusses some of the ways in which pastoral systems in schools can take account of diverse childhoods and family needs more effectively than they have done in the past.
A common theme in the literature on care-giving is the issue of ‘hidden’ carers, that is, people who undertake caring roles and responsibilities, yet do not identify themselves as carers. One reason people do not recognise themselves as carers relates to the nature of the caring relationship. When providing care for a family member, intra-familial bonds of love and reciprocity do not encourage parties to view the relationship as anything other than a ‘normal’ familial relationship. The lack of self-identification amongst young carers is complicated further by societal norms surrounding care-giving. Whereas adults are expected to provide care to other adults and children, young people are not expected to be care-givers but rather care recipients. As a result, many young carers remain ‘hidden’ and beyond the reach of services and supports designed to help them in their caring role. This paper draws on qualitative research with young carers and service providers to explore the issue of self-identification amongst young carers. The paper concludes with recommendations for identifying and supporting hidden young carers.
In 2009, The Social Care Institute for Excellence introduced guidelines for practitioners to support families in which parents have mental health problems. Here, SCIE presents a case study demonstrating how the guidance could be successfully applied.
Alex Fox highlights the hidden struggles of young carers and the signs health practitioners can look out for to identify those who need support.
This article focuses on a 2007 survey by "Community Care" which found that almost half of young carers will spend a number of hours caring for another member of their family on Christmas Day. Forty-six per cent of young carers have not talked to a social worker in the last year about the support they need, according to the survey of 109 young carers aged eight-16 in Great Britain. The survey also revealed reluctance among young carers to want more professional support.
School nurses should be 'champions' for young carers and support them in times of crisis, according to new government guidance.
In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the London region. In 2001 there were 606,861 carers in London, which is 9% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the London region.
The concept of social capital is very much an ‘adult’ concept, created by adults for adults, with children as the passive recipients of, primarily, parental social capital. The concept has been broken down into three particular subcategories – bonding (getting by), bridging (getting on) and linking (getting around). However, these subcategories equally do not relate readily to children and young people nor to different groups of young people. Young carers, for example, are a hidden population and their circumstances are relatively unknown, not least in terms of their social networks and access to social capital within the confines of their caring role. This article draws on a research study of 20 young carers in Scotland to explore the views and experiences of this particular group about their social networks and experiences of relationships with others, such as the family, friends and teachers. It concludes that young carers tend to keep their friends, family, and community networks separate from each other, and coupled with their perceived resilience and desire for self-sufficiency, this separation and protection of their individual social networks may result in reduced access to social capital in terms of getting on rather than getting by.
Background: In 2009, the first German young carers project “SupaKids” was implemented in a large German city. The project’s concept was mainly based on findings of a prior Grounded Theory study, and the concept’s aim was to focus on supporting enrolled families (especially the children) in order to prevent negative effects. Quantitative as well as qualitative data have been assessed for the project’s evaluation. In this paper, first results on the mainly qualitative evaluation concerning the project’s impact are presented.
Results: The project has an impact on the entire family. Both parents and children perceive the project as a kind of shelter, where they a) are allowed to be as they are, b) don’t have to explain themselves, c) meet others in similar situations, d) may deposit their sorrows, e) have a first port of call for any problem, f) experience a hiatus from the domestic situation, and g) find friends and peers. All enrolled families value this shelter as a copious relief.
Conclusions: The project’s concept has delivered an optimal performance in practice: the family-orientation seems to be appropriate, the concept’s modules seem to be all-embracing, and the modular body of the concept has been confirmed. The project relieves the entire family. Trial Registration Number: NCT00734942
This study explored professional views about the needs of young carers of adults with mental health problems. Sixty five participants were interviewed and included professionals from the health, social care and voluntary sectors. Respondents were asked to comment on their understanding of the needs of young carers and appropriate methods or interventions to address these needs. Findings include: young carers'perceived isolation, restricted opportunities and stigma; fears involving child protection and family separation; and examples of good professional practice upon which to build.
Dear Editor, For too long, the needs of young carers have fallen between the growing gap that separates adults’ and children’s services. Recent news coverage has once again highlighted the needs of these children but it is time to move forward and look at implementing solutions.
In 2009, the NHS National Centre for Involvement and Liverpool Primary Care Trust undertook a national pilot project to establish how best to undertake patient and public involvement in respect of end of life (EOL) services. This article describes the outcomes from its sub-project which focused on young carers. It is projected that there are substantial numbers of young carers in the UK, at any one point in time, supporting their (grand)parents, or other adult family members, during their terminal illness. Interviews with young carers were conducted to gain understanding of their experiences of EOL service delivery by carers and professionals, and what support they felt they needed themselves.
It was found that young carers were often inadvertently marginalised and at times felt ‘invisible’ to those providing care to the patient. Young carers require the same consistent, accurate and honest information as adult carers. Carers and professionals need to talk and listen to them, and to recognise the importance of the whole family, in the care of the patient. Local young carer's services can provide support and information, but there are many organisations that could also provide greater support including schools, social services, and health professionals.
Young carers doing more than 50 hours of care a week are five times more likely to report that their health is 'not good'. There are an estimated 700,000 young carers in the UK; people who are under 18 who help look after someone in their family, or a friend, who are ill, disabled or misuse drugs or alcohol. The report highlights recommendations based on discussions with young carers, sector leaders and young carers services in the Carers Trust network. 'Invisible and in distress: prioritising the mental health of England's young carers' found that while young carers frequently report that their caring role can cause distress and impact on their mental health, there are gaps in support and there are barriers that prevent them from accessing the support that they need.
Nearly half of the young carers in the survey (48%) said that being a young carer made them feel stressed and 44% said it made them feel tired.
A different survey of 61 young carers in school found that 38% had mental health problems.
The demands of their caring role and their family’s circumstances were often one of the reasons they found it difficult to access support, from the difficulty of arranging appointments without help from a parent, to worrying about revealing that they are “not good enough” to care for their family member.
The criteria for accessing Children and Adolescent Mental Health Services can discourage young carers from getting support so that problems become even harder to tackle and cause more harm.
Caring roles amongst children and young people should be seen as a risk factor for their mental health.
NHS England, the Department of Health, mental health trusts and local authorities can implement frameworks developed by Carers Trust, such as the Young Carers in Schools programme or Triangle of Care for Young Carers to ensure that the right information and support is given to young carers. They should ensure that they meet their duties to support young carers under the Children and Families Act 2014 and Care Act 2014.