<i>“Our Unified Voice to Implement Change and Advance the View of Young Carers and Young Adult Carers.”</i> An Appreciative Evaluation of the Impact of a National Young Carer Health Champions Programme

Medforth, Nicholas

doi:10.1080/19371918.2022.2058673

Cited by 5 publications

(3 citation statements)

References 12 publications

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“…The co-design session illuminated solutions for age-appropriate peer support and underscored a need to drive more public awareness. That said, future research could consider pathways or an ‘easier open-door approach’ to better recognising and engaging YCs in health, education and social care services 71…”

Section: Discussionmentioning

confidence: 99%

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Young carers’ perspectives on navigating the healthcare system and co-designing support for their caring roles: a mixed-methods qualitative study

Saragosa,

Hahn-Goldberg,

Lunsky

et al. 2023

BMJ Open

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ObjectivesDespite young carers (YCs) providing regular and significant care that exceeds what would normally be associated with an adult caregiver, we need to learn more about their experience interacting with the healthcare system. The primary study aims were to (1) describe YC experiences in interacting with the healthcare system and (2) identify types of support YC recognise as potentially helpful to their caring role.Design and settingA mixed-methods qualitative study was conducted between March 2022 and August 2022, comprising two phases of (1) semi-structured interviews and focus groups with YCs living in the community to confirm and expand earlier research findings, and (2) a co-design workshop informed by a generative research approach. We used findings from the interviews and focus groups to inform the brainstorming process for identifying potential solutions.ResultsEight YCs completed either a focus group or an interview, and four continued the study and participated in the co-design activity with 12 participants. Phase 1 resulted in three overarching themes: (1) navigating the YC role within the healthcare system; (2) being kept out of the loop; and (3) normalising the transition into caregiving. Phase 2 identified two categories: (1) YC-focused supports and (2) raising awareness and building capacity in the healthcare system.ConclusionStudy findings revealed the critical role that YCs play when supporting their families during pivotal interactions in the healthcare system. Like their older caregiver counterparts, YCs struggle to navigate, coordinate and advocate for their family members while juggling their needs as they transition from adolescence to adulthood. This study provides important preliminary insights into YCs encountering professionals, which can be used to design and implement national support structures.

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Section: Discussionmentioning

confidence: 99%

“…That said, future research could consider pathways or an ‘easier open-door approach’ to better recognising and engaging YCs in health, education and social care services. 71 …”

Section: Discussionmentioning

confidence: 99%

Young carers’ perspectives on navigating the healthcare system and co-designing support for their caring roles: a mixed-methods qualitative study

Saragosa,

Hahn-Goldberg,

Lunsky

et al. 2023

BMJ Open

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“…In the UK, support available to young carers has been shown to be inconsistent across the country [28], and studies in both the UK and Australia have shown how lack of time due to caring responsibilities, and lack of understanding from professionals, have been barriers to young carers engaging with available support [29,30].…”

Section: Introductionmentioning

confidence: 99%

Young carers’ experiences of services and support: What is helpful and how can support be improved?

Stevens,

Brimblecombe,

Gowen

et al. 2024

PLoS ONE

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Globally, many children and young people provide support to family members who have poor physical or mental health, are disabled, or misuse drugs and alcohol. These young carers are at higher risk of poorer education, employment, health, and social participation outcomes compared to their peers without caring responsibilities. In the UK, awareness of the challenges faced by young carers, and a framework of their legal rights, are relatively well-developed. However, it is unclear how support can most effectively be provided. Taking a qualitative approach we explored experiences and views of young carers (aged 9–25), conducting focus groups or interviews with 133 young carers and 17 parent care recipients. We explored what aspects of services and support are seen as helpful, valued, and acceptable to young people, and what could be improved. A reflexive, thematic analysis was conducted. Valued support came from: young carers groups (including peer support), school-based and mental health support, and support for the care recipient. Helpful aspects of support included someone who listens and understands, and can be trusted not to break confidentiality; involving the young person in information, decision-making and planning (sometimes including regarding the care recipient); and finding and linking to other services. There was a difficult balance for practitioners between being perceived as proactive, persistent or intrusive when offering support to a young carer, but it was important to allow opportunities for young carers, and those they care for, to change their minds about when and whether to access support. Many interactions were perceived as unhelpful or threatening to the family, and there was often not enough of the type of support that was valued. Sharing of positive experiences can be beneficial for both people seeking support and those delivering it; key messages on what is helpful from the perspective of young carers can help support and shape practice approaches.

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A Community-Based Perspective of Children’s Health Literacy in England

Jenkins

2024

Global Perspectives on Children's Health Literacy

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“Our Unified Voice to Implement Change and Advance the View of Young Carers and Young Adult Carers.” An Appreciative Evaluation of the Impact of a National Young Carer Health Champions Programme

Cited by 5 publications

References 12 publications

Young carers’ perspectives on navigating the healthcare system and co-designing support for their caring roles: a mixed-methods qualitative study

Young carers’ perspectives on navigating the healthcare system and co-designing support for their caring roles: a mixed-methods qualitative study

Young carers’ experiences of services and support: What is helpful and how can support be improved?

A Community-Based Perspective of Children’s Health Literacy in England

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