International Journal of Environmental Research and Public Health

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10 pages, 378 KiB

Open AccessArticle

The Social Ecology of Caregiving: Applying the Social–Ecological Model across the Life Course

by Maggie T. Ornstein and Christine C. Caruso

Int. J. Environ. Res. Public Health 2024, 21(1), 119; https://doi.org/10.3390/ijerph21010119 - 22 Jan 2024

Viewed by 3825

Abstract

Family caregivers provide care to people with disabilities, as well as ill and older adults, often with little to no outside assistance from the formal long-term care system. They are the backbone of long-term care, and it is a misconception that the majority [...] Read more.

Family caregivers provide care to people with disabilities, as well as ill and older adults, often with little to no outside assistance from the formal long-term care system. They are the backbone of long-term care, and it is a misconception that the majority of people institutionalize disabled people and older adults in the United States. Youth caregiving is under-examined in the field of public health and is in need of theoretical and practical attention. Building upon the work of Talley and Crews and Bronfenbrenner, we aim to broaden the scope of the discussion around caregiving through the application of the social–ecological model (SEM) to inform research and practice. This paper picks up where they left off, digging deeper into the ecological model to reimagine research, policy, and practices related to youth and young adult caregivers that are rooted in this framework. This application highlights care as embedded in social relations while allowing for an exploration of the ways structural barriers impact the caring unit. Looking holistically at the unit, rather than individuals as service users, provides an opportunity for understanding the interconnectedness of those giving and receiving care. It does so by rendering visible the interdependence of the caring unit, and the myriad structures, which bear down on care at the individual and household levels. This approach runs counter to dominant thinking, which focuses exclusively on the individuals involved in caregiving relationships, rather than considering them as interdependent units of care. This paper provides an analytic contribution, utilizing a narrative composite vignette based on literature and previous research. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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15 pages, 334 KiB

Open AccessArticle

“Caregiving Youth” and the Patchwork History of Recognition in the United States

by Elizabeth Olson and Leiha Edmonds

Int. J. Environ. Res. Public Health 2023, 20(20), 6920; https://doi.org/10.3390/ijerph20206920 - 13 Oct 2023

Viewed by 1840

Abstract

This article examines the U.S. legislative and policy landscape and its historical and contemporary recognition of young people as caregivers and their importance to public health, both as care providers and as a category of special concern for overall wellbeing. Drawing on feminist [...] Read more.

This article examines the U.S. legislative and policy landscape and its historical and contemporary recognition of young people as caregivers and their importance to public health, both as care providers and as a category of special concern for overall wellbeing. Drawing on feminist geographies of health to situate a historical analysis, we aim to answer two key questions: First, what is the history of recognition of caregiving youth in key moments of federal action to address family caregiving needs? Second, how might we use this history to better understand and analyze the patchwork geography of caregiving youth recognition in the U.S. and other countries that similarly lack formal national policy recognition to improve and enhance public health? We use the term patchwork to describe how federal recognition of caregiving youth in broader debates about public health is uneven across both time and space, and contingent upon civil society, non-profit organizations, and researchers working in and with geographically bound communities. Our results illustrate how a focus on the relationships of recognition, both in the past and the present and at local and national scales, reveals a different perspective on caregiving youth in the U.S. with a much more complex history than previously identified. The article describes how relationships established in the absence of federal policy or legislation are sometimes directed towards building more formal recognition, and other times with the goal of changing practices in a specific location. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

20 pages, 416 KiB

Open AccessArticle

Voices from the Margins: Aotearoa/New Zealand Young Carers Reflect on Their Experiences

by Lauren Donnan, Janet S. Gaffney and Toni Bruce

Int. J. Environ. Res. Public Health 2023, 20(15), 6511; https://doi.org/10.3390/ijerph20156511 - 3 Aug 2023

Viewed by 1643

Abstract

Young carers are a largely invisible and unsupported population of Aotearoa New Zealand (NZ) children and youth aged 25 years and under who physically, emotionally, socially, and/or spiritually support loved ones experiencing ill health, disability, substance misuse, mental illness, or advanced age. The [...] Read more.

Young carers are a largely invisible and unsupported population of Aotearoa New Zealand (NZ) children and youth aged 25 years and under who physically, emotionally, socially, and/or spiritually support loved ones experiencing ill health, disability, substance misuse, mental illness, or advanced age. The total number of young carers in NZ is unknown because census data only capture those aged 15–25. The nine published NZ studies recommend further research, policies, and services for young carers. However, there is a lack of young carer voices to inform their implementation. This paper provides insight into the experiences and needs of 28 young carers, the largest self-identified cohort in NZ research. Throughout phenomenographic interviews, young caring was described as a natural and valued part of being in a whānau/aiga/family, aimed at supporting their loved one’s holistic wellbeing. However, the overwhelming nature of caring without recognition or support resulted in poor educational, social, and mental health outcomes for young carers. This paper concludes with a contextualised NZ young carer definition and an urgent call to address the Carers’ Strategy Action Plan and listen to, and deliver on, young carers’ expressed needs. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

11 pages, 948 KiB

Open AccessArticle

Informal Caregiving in Adolescents from 10 to 16 Years Old: A Longitudinal Study Using Data from the Tokyo Teen Cohort

by Miharu Nakanishi, Daniel Stanyon, Marcus Richards, Syudo Yamasaki, Shuntaro Ando, Kaori Endo, Mariko Hosozawa, Mitsuhiro Miyashita, Mariko Hiraiwa-Hasegawa, Kiyoto Kasai and Atsushi Nishida

Int. J. Environ. Res. Public Health 2023, 20(15), 6482; https://doi.org/10.3390/ijerph20156482 - 31 Jul 2023

Cited by 1 | Viewed by 2168

Abstract

There is growing evidence of the impact of informal caregiving on adolescent mental health, and its role is often hidden unintentionally or intentionally, which may hamper early identification and support for young informal caregivers. However, the quantitative evidence regarding household factors relating to [...] Read more.

There is growing evidence of the impact of informal caregiving on adolescent mental health, and its role is often hidden unintentionally or intentionally, which may hamper early identification and support for young informal caregivers. However, the quantitative evidence regarding household factors relating to informal caregiving has mostly been based on cross-sectional findings. This study examines the longitudinal associations between household characteristics and the duration of informal caregiving in adolescents from 10 to 16 years of age. Child–household respondent pairs (n = 2331) from the Tokyo Teen Cohort in Japan were followed every 2 years from 10 to 16 years of age. Informal caregiving was assessed repeatedly based on the household respondent’s survey responses. Persistent caregiving was defined as daily caregiving at two or more waves. There were 2.2% of children who gave daily care at two or more waves. Cross-sectional associations with daily informal caregiving at each wave were found with girls, low household income, and cohabiting with grandparents. A significant association with persistent caregiving was found only in cohabiting with grandparents at 10 years of age after adjusting for sex, number of siblings, single parent, and household income. Our longitudinal examination highlighted cohabiting with grandparents as a preceding factor for persistent caregiving. Identification and support for young informal caregivers should be integrated into social care service systems for older adults. The mechanism of persistent caregiving requires clarification. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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18 pages, 720 KiB

Open AccessArticle

Voices from Service Providers Who Supported Young Caregivers throughout the COVID-19 Pandemic in the Canadian Context

by Kristine Newman, Heather Chalmers, Sarah Ciotti, Arthur Ze Yu Wang and Luxmhina Luxmykanthan

Int. J. Environ. Res. Public Health 2023, 20(15), 6446; https://doi.org/10.3390/ijerph20156446 - 26 Jul 2023

Cited by 1 | Viewed by 1557

Abstract

This empirical research is part of a larger project beginning in 2020 and ongoing until 2023, exploring the impact of the COVID-19 pandemic on young caregivers aged 5–25 years and their families in Canada. This qualitative research utilizes the social determinants of health [...] Read more.

This empirical research is part of a larger project beginning in 2020 and ongoing until 2023, exploring the impact of the COVID-19 pandemic on young caregivers aged 5–25 years and their families in Canada. This qualitative research utilizes the social determinants of health as a conceptual framework and a collective case study design to emphasize the voices and experiences of service providers (professionals offering services to young caregiver clients) during the COVID-19 pandemic, and exploring their perspectives on the impact of the pandemic on young caregivers and their families. The central research question guiding this study was “How do service providers (professionals) working with young caregiver clients in Canada describe the impacts of the pandemic on themselves, their professional praxis, and on their young caregiver clients?” The aim of this study was to develop a deeper understanding of the impact of the pandemic on young caregivers in Canada, from the perspectives of service providers, as well as to understand the experiences of service providers in their own voices. Data were collected from service providers working within three (3) different organizations offering programs and services to young caregiver clients in Ontario, Canada. In total, six (6) individual interviews were conducted with service providers who were directors/program managers, and four (4) group interviews were conducted with thirteen (13) service providers who were frontline staff members who worked directly with young caregivers and their families. In total, nineteen (n = 19) unique service providers participated in this study. Our findings point to two primary overarching themes, namely (1) service providers’ responses to the pandemic and (2) observations by service providers about the impacts of the pandemic on young caregivers, and a secondary theme, (3) positive outcomes from the COVID-19 pandemic on young caregivers, that emerged through the analysis. The pandemic led to increased demands for services by young caregiver clients. Service providers were required to adapt their service delivery methods in order to comply with public health guidelines. They shared how their work impacted their mental health as they struggled to maintain personal and professional boundaries while working from home during the pandemic. Importantly, service providers identified similar, simultaneous, and co-occurring impacts of the pandemic between their young caregiver clients, including isolation, difficulties in navigating online spaces, and challenges in navigating boundaries while working from home with family members. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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19 pages, 370 KiB

Open AccessArticle

The Impact of Public Health Restrictions on Young Caregivers and How They Navigated a Pandemic: Baseline Interviews from a Longitudinal Study Conducted in Ontario, Canada

by Kristine Newman, Heather Chalmers, Arthur Ze Yu Wang, Sarah Ciotti, Luxmhina Luxmykanthan and Nicole Mansell

Int. J. Environ. Res. Public Health 2023, 20(14), 6410; https://doi.org/10.3390/ijerph20146410 - 20 Jul 2023

Viewed by 1833

Abstract

This qualitative research study is a part of a larger research project exploring the experiences of young caregivers aged 5–26 years and their families navigating the COVID-19 pandemic between 2020 to 2023. Data were collected from 14 young caregivers who participated in baseline [...] Read more.

This qualitative research study is a part of a larger research project exploring the experiences of young caregivers aged 5–26 years and their families navigating the COVID-19 pandemic between 2020 to 2023. Data were collected from 14 young caregivers who participated in baseline interviews. The central research question guiding this study: What was, is, and will be the impact of changing public health restrictions on young caregivers and their families during the pandemic and pandemic recovery? Seven themes emerged through analysis: (1) Navigating Care During the Height of Public Health Restrictions, (2) Neighbourhood and Built Environment During the Pandemic, (3) Perceptions Towards COVID-19 and Public Health Restrictions/Efforts, (4) The Impact of Public Health Restrictions on Relationships, (5) Mental Health Challenges of Being a Young Caregiver During a Pandemic, (6) Navigating Formal Services and Supports, and (7) Recommendations from Young Caregivers. The findings from this empirical research suggest that young caregivers found it easier to navigate their caregiving responsibilities when public health restrictions and work-from-home mandates were initially implemented; however, this later changed due to challenges in finding respite from caregiving, maintaining social connections with friends, creating personal space at home, and finding adequate replacements for programs once offered in person. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

20 pages, 829 KiB

Open AccessArticle

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project

by Francesco Barbabella, Lennart Magnusson, Licia Boccaletti, Giulia Casu, Valentina Hlebec, Irena Bolko, Feylyn Lewis, Renske Hoefman, Rosita Brolin, Sara Santini, Marco Socci, Barbara D’Amen, Yvonne de Jong, Tamara Bouwman, Nynke de Jong, Agnes Leu, Daniel Phelps, Elena Guggiari, Alexandra Wirth, Vicky Morgan, Saul Becker and Elizabeth Hanson Show full author list Hide full author list

Int. J. Environ. Res. Public Health 2023, 20(6), 5074; https://doi.org/10.3390/ijerph20065074 - 14 Mar 2023

Cited by 3 | Viewed by 2776

Abstract

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children [...] Read more.

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15–17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020–2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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17 pages, 373 KiB

Open AccessArticle

Visibility as a Key Dimension to Better Health-Related Quality of Life and Mental Health: Results of the European Union Funded “ME-WE” Online Survey Study on Adolescent Young Carers in Switzerland

by Elena Guggiari, Marianne Fatton, Saul Becker, Feylyn Lewis, Giulia Casu, Renske Hoefman, Elizabeth Hanson, Sara Santini, Licia Boccaletti, Henk Herman Nap, Valentina Hlebec, Alexandra Wirth and Agnes Leu

Int. J. Environ. Res. Public Health 2023, 20(5), 3963; https://doi.org/10.3390/ijerph20053963 - 23 Feb 2023

Cited by 3 | Viewed by 2831

Abstract

This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15–17 in Switzerland, based on data collected within the Horizon 2020 project ‘Psychosocial support for promoting mental health and well-being among AYCs in Europe’ (ME-WE). [...] Read more.

This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15–17 in Switzerland, based on data collected within the Horizon 2020 project ‘Psychosocial support for promoting mental health and well-being among AYCs in Europe’ (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

18 pages, 649 KiB

Open AccessArticle

Young Carers’ Needs and Changing Experiences during an Era of Austerity

by Janet L. Warren

Int. J. Environ. Res. Public Health 2023, 20(4), 3418; https://doi.org/10.3390/ijerph20043418 - 15 Feb 2023

Cited by 1 | Viewed by 1692

Abstract

Many children caring for ill or disabled family members remain ‘hidden’ and ‘invisible’ in our communities. This study is the first to explore patterns of change, over time and throughout austerity, for children with caregiving roles to better understand how their lives differ [...] Read more.

Many children caring for ill or disabled family members remain ‘hidden’ and ‘invisible’ in our communities. This study is the first to explore patterns of change, over time and throughout austerity, for children with caregiving roles to better understand how their lives differ from those of their non-caregiving peers. A survey of 2154 children, aged 9–18 years in the general population, and a further 21 children, aged 8–18 years and known to be young carers from the same English unitary authority, was conducted to gain an in-depth understanding of children’s perceptions and experiences of what they do to help at home. This study shows that children with caregiving roles remain a distinctive group who assume more domestic and caring responsibilities than their peers, and who also perform many of these activities more frequently than young caregivers in 2001. Approximately 19% of the respondents in the general population showed signs of being in a caring role, double the percentage identified by the author in 2001, 72% of whom were from Black and Minority Ethnic backgrounds. Indicating over time higher levels of unmet needs among parents and other family members who are ill or disabled, these findings have important implications for professional policy, planning and practice across adult and children’s services. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

18 pages, 13386 KiB

Open AccessArticle

iSupport for Young Carers: An Adaptation of an e-Health Intervention for Young Dementia Carers

by Patricia Masterson-Algar, Kieren Egan, Greg Flynn, Gwenllian Hughes, Aimee Spector, Joshua Stott and Gill Windle

Int. J. Environ. Res. Public Health 2023, 20(1), 127; https://doi.org/10.3390/ijerph20010127 - 22 Dec 2022

Cited by 9 | Viewed by 4111

Abstract

Young dementia carers need to be recognised and supported in their role. They need help to understand the illness, what changes are expected and how it can affect their family member. Many support services, partly due to the COVID pandemic, have moved online [...] Read more.

Young dementia carers need to be recognised and supported in their role. They need help to understand the illness, what changes are expected and how it can affect their family member. Many support services, partly due to the COVID pandemic, have moved online and have been shown to be acceptable as they are low cost and reduce access barriers. iSupport is an evidence-informed e-health training programme developed by the World Health Organization (WHO) to support adult dementia carers. This paper reports on the co-design of an adapted version of iSupport for young carers. A theoretically driven co-design approach, drawing on the lived experiences of young dementia carers and experts who work with this target group was followed. As a result of this study iSupport for Young Carers was created. It is the first e-health intervention of its kind and aims to support the mental health, knowledge and skills of young dementia carers. In turn, it could improve the quality of the support that service providers can offer, and this can result in increased levels of identification of these young people. The work presented also provides opportunities for other countries and demographic groups to translate and adapt iSupport for Young Carers to their specific cultural context. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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19 pages, 2146 KiB

Open AccessArticle

Professionals’ Awareness of Young Carers in Schools: Results from a French Survey

by Aurélie Untas, Christel Vioulac, Pauline Justin, Agnes Leu and Géraldine Dorard

Int. J. Environ. Res. Public Health 2022, 19(21), 14172; https://doi.org/10.3390/ijerph192114172 - 29 Oct 2022

Cited by 5 | Viewed by 2080

Abstract

Few studies have investigated professionals’ awareness of young carers (YCs). Therefore, the main aim of this study was to explore school professionals’ awareness of YCs. The secondary aim was to compare professionals’ responses according to their occupation. A total of 2658 professionals took [...] Read more.

Few studies have investigated professionals’ awareness of young carers (YCs). Therefore, the main aim of this study was to explore school professionals’ awareness of YCs. The secondary aim was to compare professionals’ responses according to their occupation. A total of 2658 professionals took part in this study by completing an online questionnaire. The results indicated that the mean for the perceived age for care beginning was 10.3 years old, with parents being perceived as the most frequent care recipient. The main caring activities reported were domestic chores, emotional support and sibling care, while care provided directly to the care recipient was perceived as less frequent. Many suggestions for improving the identification, referral and support of YCs were seen as relevant, but professionals were less supportive of suggestions for adjustments within schools. The key training needs centered around better identifying YCs and developing better knowledge of their difficulties. Differences were observed according to occupation, with administrative staff and teachers having less accurate perceptions than school counsellors as well as social and health professionals. This study shows that it can be difficult for school professionals to imagine a child providing care. Specific training, therefore, needs to be proposed according to school professionals’ occupations. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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13 pages, 1035 KiB

Open AccessArticle

Young Adult Carers in the UK—New Evidence from the UK Household Longitudinal Study

by Giorgio Di Gessa, Baowen Xue, Rebecca Lacey and Anne McMunn

Int. J. Environ. Res. Public Health 2022, 19(21), 14076; https://doi.org/10.3390/ijerph192114076 - 28 Oct 2022

Cited by 11 | Viewed by 3220

Abstract

Despite growing interest in young adult carers, little is known about trends in prevalence of caregiving among young adults aged 16–29. Furthermore, few studies have so far investigated demographic, health, and socioeconomic inequalities in the duration of care among young carers as well [...] Read more.

Despite growing interest in young adult carers, little is known about trends in prevalence of caregiving among young adults aged 16–29. Furthermore, few studies have so far investigated demographic, health, and socioeconomic inequalities in the duration of care among young carers as well as demographic differences in caregiving characteristics. Using data from 11 waves of the nationally representative UK Household Longitudinal Study (2009–2021), we first estimated the prevalence of caregiving among 16–29 years-old adults at each wave. Results show that about 9% of those aged 16–29 provided care, and that this prevalence remained stable throughout the 2010s. Then, selecting respondents who participated for three waves of more, we assessed demographic, socioeconomic, and health characteristics associated with duration of care using ordinal regression models. Almost 52% of carers cared at two or more waves. Compared to non-carers, those who cared had more disadvantaged socioeconomic backgrounds, were from ethnic minorities and reported poorer health, particularly if they cared at two or more waves. Finally, focusing on carers, we tested differences by sex, age, and urbanicity in care relationships, intensity, and duration. Overall, women and those aged 25–29 cared for longer hours, for more people, and for more years than men and younger carers respectively. Put together, these findings provide an up-to-date description of young carers in the 2010s in the UK. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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18 pages, 359 KiB

Open AccessArticle

Teachers’ Perceptions of Supporting Young Carers in Schools: Identifying Support Needs and the Importance of Home–School Relationships

by Amy Warhurst, Sarah Bayless and Emma Maynard

Int. J. Environ. Res. Public Health 2022, 19(17), 10755; https://doi.org/10.3390/ijerph191710755 - 29 Aug 2022

Cited by 8 | Viewed by 3496

Abstract

Recognition and support for young carers has improved steadily in the past two decades; with stronger legislation and more visibility and awareness of the challenges that many of the YC face, especially with respect to their education. Recent UK-based initiatives providing toolkits and [...] Read more.

Recognition and support for young carers has improved steadily in the past two decades; with stronger legislation and more visibility and awareness of the challenges that many of the YC face, especially with respect to their education. Recent UK-based initiatives providing toolkits and guidance for school staff have provided much needed direction for schools, to support the loosely defined statutory requirements. The aim of the current research was to hear from school staff about their experiences in identifying and supporting young carers, to better understand any enablers and barriers. The thematic analysis of the interview data from 18 school staff was organized into two main themes: perceptions regarding the characteristics of young carers; and perceptions regarding the importance of home–school communication. Each superordinate theme contained several sub-themes. Overall, the teachers perceived many difficulties identifying young carers who did not volunteer this information and felt that the main enabler of identification was the trust relationships between the school and the pupil and parents. Once identified, the schools perceived the main areas of need that they could provide support for were the emotional wellbeing of the pupils and additional academic opportunities. They spoke too of the difficulties balancing the provision of this extra support within the constraints of the school context, both in terms of the school day, and the competing priorities relating to academic and social–emotional needs. School staff recognized that extra time outside of school was difficult for young carers to attend. Other subthemes are discussed with consideration to enablers and barriers. The implications for the dissemination of good practice, and addressing policy are considered. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

33 pages, 2284 KiB

Open AccessArticle

Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice—The European Union Funded “ME-WE” Project

by Elizabeth Hanson, Francesco Barbabella, Lennart Magnusson, Rosita Brolin, Miriam Svensson, Stecy Yghemonos, Valentina Hlebec, Irena Bolko, Licia Boccaletti, Giulia Casu, Renske Hoefman, Alice H. de Boer, Simone de Roos, Sara Santini, Marco Socci, Barbara D’Amen, Frans Van Zoest, Nynke de Jong, Henk Herman Nap, Yvonne de Jong, Tamara Bouwman, Feylyn Lewis, Tom Parkhouse, Agnes Leu, Daniel Phelps, Elena Guggiari, Vicky Morgan, Francesca Centola, Stephen Joseph and Saul Becker Show full author list Hide full author list

Int. J. Environ. Res. Public Health 2022, 19(16), 9932; https://doi.org/10.3390/ijerph19169932 - 11 Aug 2022

Cited by 9 | Viewed by 5048

Abstract

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a [...] Read more.

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15–17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs’ mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs’ conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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18 pages, 867 KiB

Open AccessArticle

Are We All the Same When Faced with an Ill Relative? A Person-Oriented Approach to Caring Activities and Mental Health in Emerging Adult Students

by Basilie Chevrier, Aurélie Untas and Géraldine Dorard

Int. J. Environ. Res. Public Health 2022, 19(13), 8104; https://doi.org/10.3390/ijerph19138104 - 1 Jul 2022

Cited by 8 | Viewed by 1999

Abstract

Dealing with the illness/disability of a relative is part of everyday life for many students, who may have to take on caring responsibilities. Fulfilling a caring role during emerging adulthood has been associated with poorer mental health. This study adopts a person-oriented approach [...] Read more.

Dealing with the illness/disability of a relative is part of everyday life for many students, who may have to take on caring responsibilities. Fulfilling a caring role during emerging adulthood has been associated with poorer mental health. This study adopts a person-oriented approach in exploring the caring experience in relation to mental health. The sample comprised 3273 students (M_age = 20.19 years, SD_age = 1.89; 80.35% female) who answered a series of questionnaires. A cluster analysis identified six patterns of caregiving activities in terms of their nature and extent: few caring activities; household chores; household and financial/practical help; emotional care; sibling care; and many caring activities with emotional and personal care. A series of analyses showed that caring activities differed according to age, gender, living arrangements, financial status, the ill/disabled relative being supported, and the relative’s type of illness/disability. A multivariate analysis of covariance showed that emerging adult students with patterns featuring household chores had better mental health than those with few caring activities. Overall, our findings indicate that having an ill/disabled relative can lead an individual to take on a wide range of caring responsibilities that may have varying consequences for emerging adult students’ mental health. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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Review

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17 pages, 369 KiB

Open AccessReview

A Qualitative Study Exploring the Lives and Caring Practices of Young Carers of Stroke Survivors

by Trudi M. Cameron, Marion F. Walker and Rebecca J. Fisher

Int. J. Environ. Res. Public Health 2022, 19(7), 3941; https://doi.org/10.3390/ijerph19073941 - 25 Mar 2022

Cited by 6 | Viewed by 3919

Abstract

This study investigated the life transformation of children when a parent returned home from hospital after a stroke. The study explored children’s experiences of taking on caring roles in partnership with their well parent and stroke survivors’ perceptions of the young carer roles. [...] Read more.

This study investigated the life transformation of children when a parent returned home from hospital after a stroke. The study explored children’s experiences of taking on caring roles in partnership with their well parent and stroke survivors’ perceptions of the young carer roles. The study aimed to identify unmet support needs in order to inform future service provision. Semi-structured interviews were conducted separately with stroke survivors (n = 7) (age range 41–60 years, mean 50.6) and their young carers (n = 11) (age range 11–20 years, mean 16). Interviews were audio recorded, transcribed and analysed using reflexive thematic analysis. Three overarching themes were identified: the lives of young carers, impact of stroke, and insulating the family. All the children were providing some level of care. None were in receipt of any formal support. Children moved in and out of the caring role in the absence of an adult, to act as primary carer. Young carers valued the life skills they were gaining but reported gaps in their knowledge and understanding of stroke. The well parent and young carers worked together in a bi-directional partnership to ameliorate the impact of stroke on the family. The study concluded that age appropriate and stroke specific information for children of stroke survivors could enhance agency and optimise positive outcomes of caring. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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15 pages, 877 KiB

Open AccessSystematic Review

Factors Associated with the Quality-of-Life of Young Unpaid Carers: A Systematic Review of the Evidence from 2003 to 2019

by Camille Bou

Int. J. Environ. Res. Public Health 2023, 20(6), 4807; https://doi.org/10.3390/ijerph20064807 - 9 Mar 2023

Cited by 5 | Viewed by 3415

Abstract

The aim of this review was to identify factors influencing the quality of life (QoL) of young people providing care for family members with chronic illnesses, disabilities, and/or mental health and substance abuse problems (young unpaid carers; YC), as well as the social-care [...] Read more.

The aim of this review was to identify factors influencing the quality of life (QoL) of young people providing care for family members with chronic illnesses, disabilities, and/or mental health and substance abuse problems (young unpaid carers; YC), as well as the social-care related QoL measures. Focused and broad search strategies were performed in four databases, identifying 3145 articles. Following screening, lateral searches, and quality appraisal, 54 studies were included for synthesis. An inductive approach was used to synthesise the findings, grouping factors associated with YC QoL into interrelated themes: “perceived normality of role and identifying as a carer”, “social support from formal and unpaid networks”, “caring demands and their impact”, and “coping strategies”. No social-care related QoL measures for YC were found. This systematic review provides groundwork for the development of such a tool and emphasises the need for further studies allowing the investigation of the interrelated factors affecting YC QoL. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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25 pages, 744 KiB

Open AccessSystematic Review

The Young Carers’ Journey: A Systematic Review and Meta Ethnography

by Marianne Saragosa, Melissa Frew, Shoshana Hahn-Goldberg, Ani Orchanian-Cheff, Howard Abrams and Karen Okrainec

Int. J. Environ. Res. Public Health 2022, 19(10), 5826; https://doi.org/10.3390/ijerph19105826 - 10 May 2022

Cited by 17 | Viewed by 4612

Abstract

Despite growing international interest, the caregiving body of literature lacks a recent understanding of young carers’ experiences and their contact with the health care system. We conducted a systematic review of qualitative studies to (1) synthesize more recent qualitative evidence on young carers’ [...] Read more.

Despite growing international interest, the caregiving body of literature lacks a recent understanding of young carers’ experiences and their contact with the health care system. We conducted a systematic review of qualitative studies to (1) synthesize more recent qualitative evidence on young carers’ experience, and (2) to identify how these young carers interact with the health care system in their caregiving role. Using a meta-ethnographic synthesis, a total of 28 empirical studies met inclusion. Key findings helped inform an overarching framework of the experience of young carers as illustrated by a journey map. The journey map is a visual depiction of the stages these young carers go through when in a caregiving role framed by three themes: (1) encountering caregiving; (2) being a young caregiver, and (3) moving beyond caregiving. The caregiving experience is perceived by young people as challenging and complex, which could be improved with more informational navigation and emotional support. Understanding these experiences provides insight into gaps in health services and potential solutions that align with the stages outlined in the journey map. Full article

(This article belongs to the Special Issue Young Carers: Research, Policy and Practice)

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