Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration

Beecham, Emma; Langner, Richard; Hargrave, Darren; Bluebond-Langner, Myra

doi:10.1177/1049732318786484

Cited by 11 publications

(11 citation statements)

References 30 publications

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“…The focus of care is on the child in the context of the family, while acknowledging the child's wider environment and relationships [22,33]. Previous studies have found that children with cancer and their families try to adjust to a 'new normal', and those with severe neurological impairment were able to regain some normality with input from a paediatric palliative care team [34][35][36]. Our Sibling of a child with a congenital condition study adds to the concept of pursuing normality within the context of children living with life-limiting conditions, demonstrating that a child-centred approach to care needs to take an individual and holistic view of the child, ensuring that physical, emotional, social, practical, and spiritual concerns are addressed.…”

Section: Discussionmentioning

confidence: 99%

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

Coombes

Braybrook²,

Roach³

et al. 2022

Eur J Pediatr

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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.

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Section: Discussionmentioning

confidence: 99%

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

Coombes

Braybrook²,

Roach³

et al. 2022

Eur J Pediatr

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“…However, one previous meta-synthesis focused on the care provided by fathers to their children with cancer under the influence of masculinities. 39 Other available meta-ethnographies have explored end-of-life decisions with parents of children with cancer, 40 parents’ experiences of their children’s life-limiting conditions, 7 , 38 quality of life in children with brain tumours, 41 families’ experience of early discharge of their child with febrile neutropenia, 42 communication within primary care consultations 43 and parenting the infant in the neonatal intensive care unit. 44 …”

Section: Introductionmentioning

confidence: 99%

A meta-ethnographic study of fathers’ experiences of caring for a child with a life-limiting illness

Postăvaru

Swaby

2020

Palliat Med

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Background: There is a growing body of qualitative studies examining parents’ experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers’ needs remains sparse and is often diluted among a predominant ‘mother’s voice’, raising questions about whether practices in clinical settings meet fathers’ needs. Aim: To provide an in-depth assembly of the current state of knowledge around fathers’ experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies. Design: A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers’ experiences of caring. Data sources: Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers’ care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used. Results: Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers’ caregiving journeys. The overarching concepts identified were: the paradox of support, challenges in the caring process, ‘nobody thinks of men’, impact on family life and the fall of the curtain: an irrevocably altered world. These and associated sub-concepts are discussed, with recommendations for future research and practice provided. Conclusion: The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.

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“…While the term ‘quality of life’ did not appear in the survey (as meaning is variously interpreted 29 ), it was raised by both CCPs and PCPs as an indicator for referral. For example, referring a child ‘ ideally when [the child] becomes unstable/quality of life is in question ’ (CCP, <1-year experience in current role) or ‘ at the point of diagnosis … selling all the positive benefits about focusing on having the best life they can rather than approaching it from the end of life care perspective ’ (PCP, 7–9 years of experience in current role).…”

Section: Resultsmentioning

confidence: 99%

Palliative care for children with complex cardiac conditions: survey results

et al. 2021

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ObjectiveTo explore perspectives of paediatric cardiac and palliative care professionals on providing palliative care to children with complex cardiac conditions.DesignA national survey including closed-ended and open-ended questions as well as clinical scenarios designed to capture referral practices, attitudes towards palliative care, confidence delivering key components of palliative care and perspectives on for whom to provide palliative care. Responses to closed-ended questions and scenarios were analysed using descriptive statistics. Open-ended responses were analysed thematically.ParticipantsPaediatric cardiac and palliative care professionals caring for children with complex cardiac conditions in the UK.Results177 professionals (91 cardiac care and 86 palliative care) responded. Aspects of advance care planning were the most common reasons for referral to palliative care. Palliative care professionals reported greater confidence than cardiac colleagues with such discussions. Clinicians agreed that children with no further surgical management options, comorbid genetic disorders, antenatal diagnosis of a single ventricle, ventricular device in situ, symptomatic heart failure and those awaiting heart transplantation would benefit from palliative care involvement.ConclusionsComponents of palliative care, such as advance care planning, can be provided by cardiac care professionals alongside the disease-directed care of children with complex cardiac conditions. Further research and training are needed to address confidence levels in cardiac care professionals in delivering components of palliative care as well as clarification of professional roles and parent preferences in delivery of family-centred care for children with complex cardiac conditions.

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Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration

Cited by 11 publications

References 30 publications

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

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

A meta-ethnographic study of fathers’ experiences of caring for a child with a life-limiting illness

Palliative care for children with complex cardiac conditions: survey results

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