Young Carers Research Articles

Unequal Conditions of Care and the Implications for Social Policies on Young Carers

Young carers are the subject of public policies in the UK, which aim to address their needs as a group experiencing disadvantage relating to their caring role. These policies are implemented in a way that aims to improve their health and their educational and social opportunities, but left unaddressed is a wider context of inequalities. Nevertheless, inequalities are a feature of the terrain upon which social policies for young carers are developed and implemented. Evaluation of the ways that young carers and their families are impacted by public policies demands an understanding of those inequalities. Academic knowledge of how experiences diverge as a result of multiple intersecting inequalities is so far limited. This paper reports from a study that aimed to contribute greater understanding of the interaction between inequalities, young carers, family life and social policies in England. Ethnographic research methods created a record of care, family life and the impact of social policies. Unequal conditions of care are an important feature of the lives of young people and their families with on-going caring responsibilities. Young carers and their families positioned at the intersection of inequalities of ‘race’/ethnicity, class and disability had different and unequal experiences of support. The paper discusses these findings and explores the implications for social policies and social work practice.

Young Carers and Parentification–Between Support and Responsibility: Involving the Child in the Functioning of the Family

Young Carers and Parentification–Between Support and Responsibility: Involving the Child in the Functioning of the Family

How Far Have We Come? An Updated Scoping Review of Young Carers in the U.S.

How Far Have We Come? An Updated Scoping Review of Young Carers in the U.S.

Parentification Among Young Carers: A Concept Analysis.

There are approximately 1.4 million young carers in the United States alone. Being a young carer can result in parentification, a type of role reversal that occurs when children take on the roles and responsibilities of the adult. The purpose of this concept analysis is to provide a better understanding of the phenomenon of parentification among young carers through a description of its antecedents, attributes, and consequences using the steps of Rodgers' evolutionary method. The databases CINAHL, PubMed, PsycINFO, and Scopus were searched to identify 25 articles. The antecedents of the concept include the dependency of the care receiver and the child's adoption of a caregiving role. The attributes include fairness, obligation, resiliency, individuation, confidence in performing care tasks, cultural normalcy, family system functioning, support system, family resources, caregiver-care receiver relationship, and awareness of the child's needs. Parentification has both positive and negative consequences that impact the young carer. The antecedents, consequences, and identifiable attributes of the concept are presented through this work to provide a comprehensive picture of parentification among young carers. These findings showcase the multidimensional nature of parentification and the broad impact that it can have on young carers. While these findings do provide greater insight into young carers, the fact remains that little is known about this underserved and underacknowledged population. This concept analysis provides a foundation of understanding that specifies potential targets for intervention development, as well as modifiable outcomes, that can be explored through future research and intervention work.

Pathways to Mental Well-Being in Young Carers: The Role of Benefit Finding, Coping, Helplessness, and Caring Tasks

Although prior research has shown that young carers may perceive benefits from their challenging situation, it is unclear how and when benefit finding leads to better mental health. This study examines pathways through which benefit finding may influence mental well-being. Self-reported data were obtained from 601 adolescents aged 15–21 (Mage = 17.87, 71.9% female) who provided care for a close person with physical or mental health problems. Benefit finding was associated with better mental well-being directly as well as indirectly via better coping and lower helplessness. These findings were similar across young carers with different caring task profiles, except for a few differences regarding social/emotional and instrumental care. The study suggests that benefit finding could promote coping skills and mental well-being in adolescent young carers with implications for the design of future research on interventions with young carers.

Cross-national Analysis of Legislation, Policy and Service Frameworks for Adolescent Young Carers in Europe

ABSTRACT Despite some national examinations of policy responses for young carers (YCs), this study provides a first comprehensive cross-national comparison of the different legislation, policy and service frameworks that exist to protect and support adolescent young carers (AYCs) in six European countries (Italy, Netherlands, Slovenia, Sweden, Switzerland and United Kingdom) and how these are enacted. Until now, research has focused on estimating numbers of AYCs and the impact of caring tasks. A preliminary examination of policy responses to YCs was followed by expert interviews. Case study analysis of 25 interviews and a cross-national synthesis were undertaken before incorporating feedback from former YCs. Different responses to YCs were found, ranging from protection and support in policy and legislation and a definition for YCs, to a total lack of recognition and support. Findings highlight the potential to extend existing legislation, policy and service frameworks to include AYCs, and the importance of recognising and raising awareness of YCs. Awareness should be raised at all levels of society for example with professionals in health, social and education sectors and the general public. A definition for YCs is needed, so AYCs can self-identify and AYCs should be recognised as an important target group for policy makers.

The ageing of parent carers: classed and gendered care-giving patterns at higher ages

AbstractIncreasing longevity has led to a rising number of adult children who are at higher ages when they provide care for their parents. Drawing on the lifecourse approach and exchange theory, the paper addresses similarities and differences in parent care between late middle-aged and older adult children. The study uses the UK Household Longitudinal Study, restricting the analysis sample to individuals aged 50 and older with a living parent or parent-in-law. It presents multivariate models to examine differences between late middle-aged (aged 50–64) and older (aged 65+) children in being a parent carer, providing intensive care, the duration of parent care and providing selected types of help to parents. The involvement in parent care increases among women up to the end of their seventh decade of life and for men up to their eighth decade of life. At higher ages, the proportion of parent carers decreases more strongly for women than men. Older carers have shorter care-giving episodes than younger carers, but there is no significant difference in the type of care provided. Even past retirement age, parent care remains classed and gendered, with women from lower social classes having the highest likelihood of providing intensive parent care in old age. Having dependent children or living in a non-marital union depress the likelihood of caring for a parent even past retirement age.

Benefit finding moderates the relationship between young carer experiences and mental well-being

Objective Research has shown that some young carers face many negative consequences because of their caring experiences, whereas others seem to be unaffected or even report greater well-being. To understand how caring for a family member or close friend can have these different effects, this study compared benefit finding between young carers and their peers and examined its association with mental well-being. Design We recruited 2,525 adolescents aged 15–21 years (59.6% female, M age = 17.73) through the Swiss education system. They were asked to complete measures of caring experiences, benefit finding, and mental well-being. Young carers (n = 1,137), including adolescents who currently or formerly provided care, were compared to adolescents without caring experiences (n = 1,388). Results Young carers had a higher level of overall benefit finding than non-carer peers, and their profiles of benefit finding differed regarding the dimensions of growth and empathy. The association between caring experiences and mental well-being was weaker when benefit finding was higher. Benefit finding dimensions were differently associated with mental well-being among young carers. Conclusions This study shows that caring is associated with benefit finding and suggests that engaging with past stressors in a positive way may promote resilience in young carers.

What can the experiences of young adult carers tell us about what can make services more helpful for them and their families?

ABSTRACT Young adults who provide unpaid care for older relatives have poorer outcomes than their peers in education, employment, health and wellbeing. Services that can potentially have a positive impact on their lives include services provided to the person they care for. However, survey research in England has indicated that receipt of such services is not necessarily linked to fewer negative consequences for young adult carers. We conducted in-depth interviews with fourteen young adult carers who had responded to the original survey. We explored their experiences with services for the care recipient and what factors limit or enhance the usefulness of those services. We found three interrelated themes. First, difficulties accessing services can add to stress, and make problems harder to address when services are implemented; second, lack of continuity of services, and practitioners, undermines relationships and future trust in services, whereas consistent relationships are beneficial. Third, young adult carers described the benefits that resulted from their being involved in discussions and decisions about services, and the problems when this does not happen. The wellbeing of the young adult carer and the person receiving care are shown to be inextricably interrelated; we draw out implications for efforts to improve services.

Mental health help seeking in young people and carers in out of home care: A systematic review

The mental health of children and young people in out-of-home care (OOHC) is a global concern, with consistently poorer outcomes reported within this population. However, it is unknown whether young people living in OOHC, or their carers, are engaging in mental health help-seeking at a rate that is comparable to their mental health need. This systematic review aimed to firstly, explore the experiences of young people aged 12–18 years in OOHC, and their carers, of seeking help for the young person; and secondly, to explore the factors that may act as barriers or facilitators to help-seeking. This PRISMA designed and registered review included qualitative studies published in English in the past 20 years. Five studies met the inclusion criteria, representing a total of 854 consumer perspectives. Findings indicate that young people and carers are not regularly engaging in help-seeking, and that when help-seeking does occur, there is a preference to seek support from informal sources. Barriers to help-seeking included concerns about stigmatisation, confidentiality, service inaccessibility, perceived lack of understanding of the young person or carer’s circumstances, and limited opportunities for participation in decision making. Targeted interventions to address these barriers and increase mental health help-seeking skills in this vulnerable OOHC population should be considered.

Are there young carers in oncology? A systematic review

ObjectiveThis systematic review aims to investigate the support children provide in the case of a relative's cancer.MethodsSearches were performed on four electronic databases (Embase, PsycINFO, PubMed and ScienceDirect) to identify studies that report on the support provided by children to a relative diagnosed with cancer. Two researchers independently evaluated the eligibility of the studies and cross‐checked them for accuracy. The Crowe Critical Appraisal Tool (CCAT) was used to assess the quality of the studies included.ResultsOut of the 10948 articles screened, 30 were included in this review. Results highlighted that cancer provokes changes in families, such as shifts in roles and increased responsibilities for the youth. Children often provided significant support to their sick relative and family members, including practical, emotional, and medical support such as household duties, medical assistance, companionship, and distraction. However, they were designated as young carers in only one study. The support provided was associated with negative effects such as stress and fatigue, and with positive effects such as increased empathy and independence. Children wished to support their family but also named several needs, such as time for themselves and the opportunity to enjoy their childhood.ConclusionThe results of this systematic review highlight the importance of taking into account the support provided by young people facing the cancer of a relative and designating them as young carers. Much remains to be accomplished to officially recognize their role and to support them properly.

Ready and able? Professional awareness and responses to young carers in Switzerland

BackgroundThe 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. AimThe 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). MethodsData 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. ResultsJust over half (55.8%) of the professionals in our study reported being able to support young carers. 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. ConclusionStudy 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. 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.

Life satisfaction and subjective health status of young carers: A questionnaire survey conducted on Osaka prefectural high school students

Objectives Research suggests that Japan has a substantial number of young carers, that is, children who provide care to their family members. However, little is known about the effects of their caring roles on their life satisfaction and health status. Therefore, the objective of the present study was to investigate the relationship between caring roles, life satisfaction, and subjective health status among high school students, as well as to discuss the effects of caring roles on young carers' life satisfaction and subjective health status.Methods We conducted a questionnaire survey on 6,160 high school students from 10 prefectural schools in Osaka prefecture, Japan. The questionnaire included questions relating to family members and students' caring roles, with one question regarding life satisfaction, one question regarding self-rated health status, and seven questions regarding subjective health symptoms. Principal component analysis was applied to responses to the seven questions regarding subjective health symptoms. Then, the relationship between caring roles, life satisfaction, and subjective health status was analyzed, with adjustment for potential confounding factors.Results A total of 5,246 valid questionnaires were collected; however, our analysis was limited to 4,509 valid questionnaires that included all the required information. It was found that 47 (1.0%) students provided care for infant siblings without disability, illness, or other special needs (Young Carers A), and 233 (5.2%) provided care for family members with disabilities, illnesses, or other special needs (Young Carers B). The remaining 4,229 (93.8%) students (those who did not provide care to their family members) formed the control group. Logistic regression analysis indicated a significant relationship between caring roles and life satisfaction (P<0.001). The odds ratios for dissatisfaction among Young Carers A and B were 2.742 and 1.546, respectively, which were statistically significant (P<0.001 and P=0.003, respectively). Although no significant relationship was found between self-rated health status and caring roles (P=0.109), the principal component score for subjective health symptoms in multiple regression analysis revealed a significant relationship with caring roles (P<0.001). Compared with the control group, the partial regression coefficients among Young Carers A and B were 0.362 and 0.330, respectively, which were also statistically significant (P=0.012 and P<0.001, respectively).Conclusion Our results suggest that excessive caring burden may have adverse effects on young carers' life satisfaction and subjective health status.

‘It's good because my sister is young, and she knows what's going on’: Children's views about their young kinship carers

AbstractMuch literature about kinship care has focused on the issues facing grandparent carers. An Australian research project explored the experience and support needs of young kinship carers and children in their care through analysis of census data and in‐depth interviews with young kinship carers and children/young people. This article describes the views of 16 young people. These young people expressed satisfaction with their home life and spoke of improvement over time in their wellbeing, mental health, and schooling. While they appreciated their carers' attunement to the world of young people, they articulated many challenges for themselves and their carers, including the burden on their carers, the challenge of adjusting to their carers' parental role, and financial pressures. They wanted greater access to counselling and casework services in order to deal with the impacts of family trauma.

Therapeutic relationships in child and adolescent mental health services: A Delphi study with young people, carers and clinicians.

Therapeutic relationships have been widely recognized as crucial to good outcomes in psychotherapy. However, there is comparatively little research on what constitutes and impacts therapeutic relationships in the context of child and adolescent mental health services (CAMHS). Relationships within CAMHS are inherently complex, with multiple relationships taking place between young people, parents or carers and staff members of various disciplines. The Delphi method was used to gain consensus regarding the definition of therapeutic relationships, what helps to build and what hinders the formation of a good relationship in the context of CAMHS. Three expert groups (young people, carers and staff) totalling 88 participants were invited to complete an online Delphi survey across three rounds. Consensus was reached to define the therapeutic relationship as trust, reliability and absence of judgemental attitudes (n=19 statements). Factors that help build good relationships predominantly referred to staff behaviours of setting up open communication channels, showing acceptance of the young person's difficulties and being consistent (n=88 consensus agreement statements). Factors that hindered a good relationship were inconsistencies and lack of clear communication between all groups (n=18 consensus agreement statements). Effective therapeutic relationships require key behaviours and approaches from clinicians. It is essential that staff members are open and honest in facilitating discussions about parental involvement within the relationship and that staff provide consistent and trusting support to young people and family members. Our findings demonstrate that key stakeholders agree on important aspects and that these could be a catalyst for renewed training and support structures.

What do French school staff know about young carers? A qualitative study about their perceptions

AbstractYoung carers (YCs) are children and adolescents who provide a significant help to family member(s) with a disease or a disability. They often remain hidden, especially in France where awareness levels and policy responses regarding YC are just emerging. Several studies show that YC often have difficulties at school because of their situation. However, school staff seems to have difficulties to identify and support YC. The aim of this study was to explore schools teachers and other professionals' levels of awareness and their perceptions of the potential impacts of caring on pupil attainment, achievement, and wellbeing. Thirty‐three professionals working with pupils from 6 to 18 years old (primary, secondary, and high schools) took part in a semi‐structured interview and in a short phone interview. The results showed that almost all had already met a YC. Despite knowledge and perceptions of potential impacts for their pupils, few undertook actions to support them. Healthcare professionals and school counsellors seemed more aware of these situations than teachers and more prone to offer support. These results underline the need to enhance all school staff's knowledge about YC and help them develop appropriate support.

Affects of policy design: The case of young carers in the Care Act 2014 and the Children and Families Act 2014

AbstractThis article presents an analysis of policies on young carers in England, considering both the design but also the lived experience of policy subjects. 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. 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. 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.

Constructing a new role for family carers and volunteers providing care towards the end of life: an action research approach exploring a new model of hospice care.

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. 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. 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.

A systems map of the determinants of child health inequalities in England at the local level.

Children and young people in the UK have worse health outcomes than in many similar western countries and child health inequalities are persistent and increasing. Systems thinking has emerged as a promising approach to addressing complex public health issues. We report on a systems approach to mapping the determinants of child health inequalities at the local level in England for young people aged 0-25, and describe the resulting map. Qualitative group concept mapping workshops were held in two contrasting English local authorities with a range of stakeholders: professionals (N = 35); children and young people (N = 33) and carers (N = 5). Initial area maps were developed, and augmented using data from qualitative interviews with professionals (N = 16). The resulting local maps were reviewed and validated by expert stakeholders in each area (N = 9; N = 35). Commonalities between two area-specific system maps (and removal of locality-specific factors) were used to develop a map that could be applied in any English local area. Two rounds of online survey (N = 21; N = 8) experts in public health, local governance and systems science refined the final system map displaying the determinants of child health inequalities. The process created a map of over 150 factors influencing inequalities in health outcomes for children aged 0-25 years at the local area level. The system map has six domains; physical environment, governance, economic, social, service, and personal. To our knowledge this is the first study taking a systems approach to addressing inequalities across all aspects of child health. The study shows how group concept mapping can support systems thinking at the local level. The resulting system map illustrates the complexity of factors influencing child health inequalities, and it may be a useful tool in demonstrating to stakeholders the importance of policies that tackle the systemic drivers of child health inequalities beyond those traditionally associated with public health.

'We're all in the same boat': An Interpretative Phenomenological Analysis study of experiences of being an 'expert' during patient and public involvement within Child and Adolescent Mental Health Services (CAMHS).

BackgroundPatient and Public involvement (PPI) has rapidly evolved into a key component in shaping the delivery of health services. However, little is known about what it is like to participate in involvement procedures that include representatives of multiple groups and in the context of developing new interventions for Child and Adolescent Mental Health Services (CAMHS).ObjectiveThis study explored participants’ experiences of PPI, following attending a ‘consensus conference’, during which their views were sought in relation to the development of a proposed staff‐based intervention and key questions about its design and implementation.DesignQualitative, semi‐structured interview study.Setting and ParticipantsSix participants, including service users and various frontline clinical staff team members, who had experience of CAMHS were present at the consensus conference and then asked about their experiences of being involved via semi‐structured interviews. The data were analysed using Interpretative Phenomenological Analysis (IPA). Young people, carers and frontline staff have been involved in the design and implementation throughout the broader programme of work of which this study forms part, although these groups were not directly involved in the design and implementation of this paper.ResultsThree key narratives were present: (a) Previous Experiences Driving Expectations, (b) ‘We are all in the same boat’ and (c) The Realization of Multiple Identities. The results suggest that PPI involvement is a complex process that may be driven by positive/negative expectations, but that individuals value learning about others and recognizing different perspectives while reaching shared goals in improving services.Discussion and ConclusionThis study demonstrates the complexity of experience that service users and clinical staff face when engaging in involvement activities in CAMHS. The findings demonstrate the value in engaging multiple stakeholder groups while also highlighting the importance of proper consideration of the procedures involved and facilitators of engagement.