ArticleJournal of community genetics2022
Families with complex needs: an inside perspective from young people, their carers, and healthcare providers.
Article in Journal of community genetics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
3 citing papers in PubMed.
- Identifying households with children who have complex needs: a segmentation model for integrated care systems.BMC health services research · 2025Article
- Exploring fathers' experiences of caring for a child with complex care needs through ethnography and arts-based methodologies.BMC pediatrics · 2024Article
- The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project.Healthcare (Basel, Switzerland) · 2023Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
Complex health needs are demanding and often require additional medical, psychological and social support. All those involved (e.g., patients, carers, professionals) face a unique set of challenges and needs, especially in families where the patient is a child or a young person with a lifelong condition. The aim of the study was to explore carers' and young people's needs when living with long term conditions, as well as the views of the healthcare professionals supporting them. Semi-structured interviews with 30 participants (11 professionals, 10 parents, and 9 young people) were conducted. Interviews focused on 3 main areas-(1) medical needs, (2) psychological needs, and (3) communication needs-and were analyzed using thematic analysis. Four main themes emerged: (1) Acceptance takes time refers to the often long and challenging process of adapting to the diagnosis and living with the condition; (2) Close guidance captures the importance of specialised and long term guidance in accessing and managing the complexities of the medical system; (3) Open communication shows the families' need to be collaboratively connected to healthcare providers and other families facing similar difficulties; and (4) Long-term support underlines the importance of long term formal and informal support strategies. The participants' experiences and views have provided us with insight and guidance for developing and implementing personalized and integrated services. This inside perspective is key for future research aimed at better understanding the impact of complex conditions and meaningful ways to support families throughout their journeys.
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Registered trials
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