ArticleBMJ open2018
The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK.
Article in BMJ open, 2018. 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.
- Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation.Archives of disease in childhood · 2021Article
- Experiences of general practice of children with complex and palliative care needs and their families: a qualitative study.BMJ open · 2021Article
- Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.PloS one · 2021Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
introductionThe number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive. This study aims to produce an in-depth insight into the experiences and preferences of such children and families in order to develop recommendations for the future provision of services. The study will be carried out in the West Midlands, UK. METHODS AND ANALYSIS: A qualitative study comprising longitudinal interviews over a 12-month period with children (aged 5-18 years) living with life-limiting or life-threatening conditions and their family members. Data analysis will start with thematic analysis, followed by narrative and cross-case analysis to examine changing experiences and preferences over time, at the family level and within the wider healthcare system. Patient and public involvement (PPI) has informed the design and conduct of the study. Findings will be used to develop recommendations for an integrated model of palliative care for children in partnership with the patient and public involvement (PPI) group. ETHICS AND DISSEMINATION: Ethical approval was granted in September 2016 by the National Health Service Health Research Authority (IRAS ID: 196816, REC reference: 16/WM/0272). Findings will be of immediate relevance to healthcare providers, policy-makers, commissioners and voluntary sector organisations in the UK and internationally. Reports will be prepared for these audiences, as well as for children and their families, alongside academic outputs.
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