Dataset Information

Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.

ABSTRACT: This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality.

Conclusion

Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this.

What is known

• Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care.

What is new

• Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.

SUBMITTER: Coombes L

PROVIDER: S-EPMC9371630 | biostudies-literature | 2022 Oct

REPOSITORIES: biostudies-literature

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Publications

Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.

Coombes Lucy L Braybrook Debbie D Roach Anna A Scott Hannah H Harðardóttir Daney D Bristowe Katherine K Ellis-Smith Clare C Bluebond-Langner Myra M Fraser Lorna K LK Downing Julia J Farsides Bobbie B Murtagh Fliss E M FEM Harding Richard R

European journal of pediatrics 20220812 10

This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts ...[more]

PMID: 35953678

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Project description:BackgroundDevelopment of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital.ObjectiveTo develop C-POS:UK (Children's Palliative Care Outcome Scale, UK), a person-centred outcome measure (PCOM) for children with life-limiting conditions and their families, and to test its psychometric properties.DesignSequential mixed-methods approach to PCOM development, guided by Rothrock's measure development process and COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology.Methods(i) Qualitative interviews about priority symptoms and concerns, with embedded exploration of measure design for children with life-limiting conditions; (ii) systematic review of measure design for children; (iii) modified Delphi survey, and consultation with children, on priority items for new measure; (iv) expert item generation meeting to develop C-POS:UK; (v) cognitive testing to refine C-POS:UK; (vi) psychometric validation.Results(i) 106 participants described physical, emotional/psychological, spiritual/existential, social and practical concerns. Measure design was discussed by 79 participants comprising preferred response format, recall period and measure administration for children with life-limiting conditions; (ii) systematic review highlighted need for: different versions of measure accounting for child's developmental stage and cognitive ability; parent/carer involvement as proxies for very young children; and testing to clarify recall periods and response formats at different developmental stages; (iii) Delphi survey: 82 participants (in the first round), with a move towards consensus, but with some differing priorities in stakeholder groups: professionals prioritised physical symptoms, parents prioritised psychosocial and practical matters, while consulted children prioritised normality; (iv) 22 experts contributed to item generation meeting, resulting in five versions of C-POS:UK accounting for child's developmental stage and cognitive ability, and proxy involvement; (v) 48 participants cognitively tested initial C-POS:UK, informing comprehension, comprehensiveness and acceptability; (vi) psychometric validation is ongoing.ConclusionA sequential approach informed by Rothrock and COSMIN has supported development of the first version of C-POS:UK. Psychometric validation is underway and will be followed by implementation planning.

Project description:IMPORTANCE:Play is essential to children and provides opportunities to promote their health and well-being. Children living with life-threatening and life-limiting conditions experience deprivation in play. OBJECTIVE:To conduct a scoping review of studies that examined play of children with a life-threatening or life-limiting condition to explore their play characteristics and possible factors influencing their participation in play. DATA SOURCES:A search of literature published between 1990 and 2017 was conducted in the health, social care, and built-environment fields. The scoping review included multiple searches in electronic databases, a gray literature search, and manual searches of relevant journals and reference lists of included articles. STUDY SELECTION AND DATA COLLECTION:Defined criteria were used to select articles describing studies that examined the daily play of children ages 5-11 yr with life-threatening and life-limiting conditions; articles that focused on play as therapy or that used parents' accounts of a service were excluded. The identified articles were critically appraised with the Critical Appraisal Skills Programme and the Joanna Briggs Institute Critical Appraisal Tools. FINDINGS:Thirteen articles were reviewed. The findings indicate that children's play is influenced by their health conditions and play opportunities and by the limited availability of appropriate play equipment and spaces allowing play and social interaction. CONCLUSIONS AND RELEVANCE:Available appropriate play opportunities need to be maximized for children living with life-threatening and life-limiting conditions. This goal can be achieved by understanding and considering the needs of these children and by facilitating environmental enablers and limiting barriers. WHAT THIS ARTICLE ADDS:Promoting the participation in play of children who live with life-threatening and life-limiting conditions is important to their health and well-being and can be achieved by targeting the cultural, social, and physical environmental factors that shape the children's play.

Project description: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 analysisA 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 disseminationEthical 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.

Project description:ObjectivesTo provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).DesignAn in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.SettingA PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK.Participants17 parents of 11 children who had died in the PICU.ResultsFive interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a 'place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU.Conclusions and implicationsThe death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.

Dataset Information

Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.

Conclusion

What is known

What is new

Publications

Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.

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