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.
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http://dx.doi.org/10.3390/ijerph19105826 | DOI Listing |
Front Child Adolesc Psychiatry
June 2024
IM Franchise Department, Les Laboratoires SERVIER, Global Value, Access & Pricing, Suresnes, France.
Introduction: Autism spectrum disorder (ASD) is characterised by difficulty with social communication and restricted, repetitive patterns of behaviour. This study aimed to improve understanding of the ASD patient experience with the treatment (bumetanide) regarding the changes in core symptoms and to assess changes considered as meaningful. To achieve this, qualitative interviews were conducted with caregivers of patients in two phase 3 clinical trials (NCT03715153; NCT03715166) of a novel ASD treatment.
View Article and Find Full Text PDFJ Intellect Dev Disabil
March 2024
Department of Psychology and Human Development, IOE UCL's Faculty of Education and Society, London, UK.
The home literacy environment (HLE) has rarely been examined for individuals with neurodevelopmental disorders, including individuals with Williams syndrome and Down syndrome. The current study surveyed carers of individuals with Down syndrome (n = 48) and Williams syndrome (n = 18) in the United Kingdom (UK). The study reports that individuals with Down syndrome were rated higher in general reading skills and writing, while the Williams syndrome group scored higher for speaking.
View Article and Find Full Text PDFJ Intellect Dev Disabil
December 2023
Department of Psychology, University of Cambridge, Cambridge, England.
Background: Despite a growing body of literature investigating the impact of disabilities on family relationships, the experiences of ethnic minorities remain underexplored.
Method: Semi-structured online interviews were conducted with eight young people (aged 18-28 years) with disabled sibling(s) within an immigrant family to understand how this affects their wellbeing and relationships, identify sources of support and strain, and explore the significance of balancing different cultural expectations. We used reflexive thematic analysis to analyse the transcribed data.
J Intellect Dev Disabil
June 2024
NOFASD, Perth, Australia.
Background: Australia has limited supports to help families where Fetal Alcohol Spectrum Disorder (FASD) impacts children and young people. National Organisation for Fetal Alcohol Spectrum Disorder Australia (NOFASD), in conjunction with the University of Otago, New Zealand, piloted and established a 7-week online program to assist caregivers to develop strategies and supports to help their families live well in a disabling society.
Method: The online program, Families Linking with Families (FLWF), was delivered to 88 caregivers.
BMC Nutr
January 2025
Telethon Kids Institute, North Entrance Perth Children's Hospital, 15 Hospital Ave, Nedlands, WA, 6009, Australia.
Background: Urine is an attractive biospecimen for nutritional status and population health surveys. It is an excellent non-invasive alternative to blood for appropriate biomarkers in young children and is suitable for home-based collection, enabling representative collections across a population. However, the bulk of literature in this population is restricted to collection in primary care settings.
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