Identifying domains of quality of life in children with cancer undergoing palliative care: A qualitative study with professionals

Avoine-Blondin, Josianne; Parent, Véronique; Lahaye, Magali; Humbert, Nago; Duval, Michel; Sultan, Serge

doi:10.1017/s1478951516001048

Cited by 9 publications

(31 citation statements)

References 30 publications

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“…quiet locales and open areas. 41,[66][67][68][69][70][71][72][73][74][75][76] A majority of qualitative studies fail to account for potential bias from researchers. Only three qualitative studies validated the findings, using focus group interviews 41,71 or documentary analysis for triangulation.…”

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

“…93, 94 53,68,70,104,105,108-112 Symptoms become more of a concern when they lead to physical and mental changes or affect the ability of young people to engage in daily activities. 47,54,63,66,81,104,108,109,113…”

Section: Physical Symptoms and Concernsmentioning

confidence: 99%

“…94 Palliative care professionals mention the need for alleviation of psychological suffering as an important domain of quality of life in paediatric palliative care. 112 Cognitive changes that have been identified include disturbance of consciousness, declining attention and concentration orientation, social skills, cognition, energy, and drive. 51,73,89,92,95 Other concerns include the need for a sense of self-worth, 115 resilience, coping with illness, accepting the present pain for potential gain in future, and the desire to protect other people from similar illness experiences.…”

Section: Psychological (N=65 Studies 80%)mentioning

confidence: 99%

“…48 Hospitalisation is a particularly undesirable experience associated with disruption of school schedule and social interaction, and resulting in isolation. 23,48,54,66,67,70,74,93,105,111,113,118 Young people generally value social relations where they feel comfortable talking, being listened to, share secrets, and are treated with respect. 23,39,40,48,76,112,113,119 Young people, health professionals, and families express the need for children to experience fun, humour, laughter, recreation, and leisure alongside treatment.…”

Section: Psychological (N=65 Studies 80%)mentioning

confidence: 99%

“…23,48,54,66,67,70,74,93,105,111,113,118 Young people generally value social relations where they feel comfortable talking, being listened to, share secrets, and are treated with respect. 23,39,40,48,76,112,113,119 Young people, health professionals, and families express the need for children to experience fun, humour, laughter, recreation, and leisure alongside treatment. 23,27,68,76,104,112,113 Family relation concerns have been highlighted in 20 studies.…”

Section: Psychological (N=65 Studies 80%)mentioning

confidence: 99%

See 4 more Smart Citations

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Namisango

Bristowe

Allsop

et al. 2018

Patient

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Background: The design and provision of quality paediatric palliative care should prioritize issues that matter to children and their families, for optimal outcomes. Aim: This review aims to identify symptoms concerns and outcomes, that matter to children and young development of a relevant framework of health outcomes. Study Design: This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources: Data sources such as PsychINFO, Medline, EMBASE, CINAHL, OpenGrey, and Science Direct Journals have been searched from 1 August 2016 to 30th July 2017. The study also incorporates consultations with experts in the field, citation searchers via Scopus, and a hand search for reference lists of included studies. Results: Out of the 13,567 articles that have been evaluated, 81 studies were included. Of these, (n=68) are from high-income countries and (n=58) are cancer patients studies. A total of 3,236 young people, 2,103 family carers, 108 families, and 901 healthcare providers are included in the studies. Young people have not contributed to data in 30% of studies. Themes on priority concerns are presented by domain and health outcome; for example, 1) Physical (n=62 studies); e.g. physical symptoms, 2) psychological (n=65); e.g. worry 3) psycho-social (n=31); e.g. relationships, 4) existential Conclusion: Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory, so paediatric palliative care should not be limited to the end of life phase. A child-family centred framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future

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Section: Characteristics Of Included Studiesmentioning

confidence: 99%

Section: Physical Symptoms and Concernsmentioning

confidence: 99%

Section: Psychological (N=65 Studies 80%)mentioning

confidence: 99%

Section: Psychological (N=65 Studies 80%)mentioning

confidence: 99%

Section: Psychological (N=65 Studies 80%)mentioning

confidence: 99%

See 3 more Smart Citations

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Namisango

Bristowe

Allsop

et al. 2018

Patient

View full text Add to dashboard Cite

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Children’s and adolescents’ perspectives on living with advanced cancer: A meta-synthesis of qualitative research

Johnson,

Ali,

et al. 2024

Qual Life Res

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The psychological experience of pediatric oncology patients facing life-threatening situations: A systematic review with narrative synthesis

2021

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Objective The purpose of this systematic review is to describe the elements of the psychological experience of pediatric oncology patients facing life-threatening situations and the corresponding care needs. Methods The study design is a systematic review following the PRISMA standard of qualitative, quantitative, and mixed-methods research. The review was conducted using multiple databases, including Scopus, Web of Science, PubMed, and PsycINFO. The risk of bias of the articles was evaluated with the “Critical Appraisal Skills Programme.” Results A total of 21 articles met inclusion criteria. The analysis of the evidence revealed that the psychological experience involves changes in relationships, thoughts about death, emotional changes, physical symptoms, spiritual changes, and feelings of uncertainty. Significance of results The care needs identified are maintaining normality, controlling physical and psychological symptoms, and that maintaining hope is an important aspect for children. Whether or not the children want to talk about death is another important aspect that needs to be reflected upon, and it would be appropriate to consider, on an individual level, involving patients in the discussion on the diagnosis and treatment of the illness. Future research should be conducted from the children's perspective since most existing research is from the perspective of the family members or health professionals. Furthermore, it is recommended to take into account qualitative approaches that provide more detailed information on the patients’ subjectivity.

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Identifying domains of quality of life in children with cancer undergoing palliative care: A qualitative study with professionals

Cited by 9 publications

References 30 publications

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Children’s and adolescents’ perspectives on living with advanced cancer: A meta-synthesis of qualitative research

The psychological experience of pediatric oncology patients facing life-threatening situations: A systematic review with narrative synthesis

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