Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study

Friedel, Marie; Brichard, Bénédicte; Boonen, Sabine; Tonon, Corinne; Terwangne, Brigitte De; Bellis, Dominique; Mevisse, Murielle; Fonteyne, Christine; Jaspard, Maud; Schruse, Marie; Harding, Richard; Downing, Julia; Namisango, Eve; Degryse, Jean-Marie; Aujoulat, Isabelle

doi:10.1089/jpm.2019.0646

Cited by 16 publications

(26 citation statements)

References 39 publications

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“…Development of such a measure has repeatedly been identified as a research priority [15][16][17]. A measure is in development in sub-Saharan Africa and Belgium, but primary data to inform measurement has not been generated outside Africa [18][19][20].…”

Section: Introductionmentioning

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: Introductionmentioning

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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“…Contrary to the African C-POS 14 , 15 and its French translation 16 that contain only two items assessing pain and other symptoms, the FACETS-OF-PPC assesses the most common symptoms of the patient population 25 individually. Beyond that, it contains an additional item inquiring about further relevant symptoms.…”

Section: Discussionmentioning

confidence: 99%

“…However, it is unclear whether the African C-POS is applicable to children from other regions, as it was built on consensus of local experts in Africa. 14 , 15 It has recently been translated into French and validated in a monocentric study in Belgium, 16 however, the study sample did not include children with severe neurological impairment. Thus, both the original and the translated version of the African C-POS may not be applicable to children with congenital and neurological disorders, who constitute the largest patient group in developed countries for children younger than 16 years.…”

Section: Introductionmentioning

confidence: 99%

Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis—A multicenter prospective study

et al. 2020

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Background: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. Aim: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. Design: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. Setting: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. Results: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child’s social participation, normalcy, social support, coping with the disease and caregiver’s competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. Conclusion: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.

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“…To gain insight into the quality of life of child/parents and family-centred care from the perspective of parents of children who have an ICP 2.0 several questionnaires are added to the quantitative measurements. At the time of writing, the Children’s Palliative Outcome Scale-2 20 and the Patient-Reported Experience Measures Child Care 21 are the most appropriate tools for this (see table 2 ).…”

Section: Methodsmentioning

confidence: 99%

Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol

Joren

Kars

Kremer

et al. 2023

bmjpo

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IntroductionPaediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for PPC was developed and has shown to be successful. The ICP can be seen as an instrument to facilitate coordination, quality and continuity of PPC. However, in practice, an ICP is often completed too late and for too few children. We aim to improve the coordination, quality and continuity of care for every child with a life-threatening or life-limiting condition and his/her family by further developing and implementing the ICP in the Netherlands.Methods and analysisTo evaluate the original ICP, ICP 1.0, interviews and questionnaires will be held among parents of children who have or have had an ICP 1.0 and healthcare professionals (HCPs) who used ICP 1.0. Based on the results, ICP 1.0 will be further developed. An implementation strategy will be written and the renewed ICP, ICP 2.0, will be nationally tested in an implementation period of approximately 7 months. During the implementation period, ICP 2.0 will be used for all children who are registered with Children’s Palliative Care teams. After the implementation period, ICP 2.0 will be evaluated using interviews and questionnaires among parents of children who received ICP 2.0 and HPCs who worked with ICP 2.0. Based on these results, ICP 2.0 will be further optimised into the final version: ICP 3.0.Ethics and disseminationThis study received ethical approval. The ICP 3.0 will be disseminated through the Dutch Centre of Expertise in Children’s Palliative Care, to ensure wide availability for the general public and HCPs within PPC. Additionally, we aim to publish study results in open-access, peer-reviewed journals and to present results at national and international scientific meetings.

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Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study

Cited by 16 publications

References 39 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

Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis—A multicenter prospective study

Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol

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