Developments in paediatric palliative care

Mellor, Charlotte; Heckford, Emma; Frost, Jo

doi:10.1016/j.paed.2011.11.012

Cited by 9 publications

(6 citation statements)

References 5 publications

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“…Children with life-limiting or life-threatening diseases (LLD/LTD; Box 1) are increasingly cared for at home. At the same time, the period in which paediatric palliative care (PPC) needs to be provided by the parents is becoming increasingly longer due to technical and medical improvements [ 9 , 17 , 25 , 32 , 47 ]. The caregiving role of the parents is extensive and complex [ 13 , 14 , 20 , 48 , 54 ].…”

Section: Introductionmentioning

confidence: 99%

Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study

et al. 2019

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Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals’ support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s). Conclusion : Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies. What is Known: • In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child’s symptoms, a life worth living and a family balance. What is New: • Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship. • Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes. • To provide tailored support, professionals need to understand parents’ perceptions, relationship with their child and coping strategies. Electronic supplementary material The online version of this article (10.1007/s00431-019-03393-w) contains supplementary material, which is available to authorized users.

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Section: Introductionmentioning

confidence: 99%

Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study

et al. 2019

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“…The number of children with life-limiting or lifethreatening conditions (Box 1) is increasing as current medical treatment options allow critically ill children to live longer, being dependent on high-complex care for a longer period of time and expanding care facilities at home [1][2][3][4]. These children are in need of pediatric palliative care (PPC) from the point of diagnosis and continued throughout the child's life and death [1,5].…”

Section: Introductionmentioning

confidence: 99%

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

et al. 2020

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Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations. Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known:• Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New:• Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job.• Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.

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“…8 However, there are significant inequities in the provision of specialist paediatric palliative care services internationally; specialist services do not have the capacity to manage every child who could benefit from palliative care. 3,9–11 This, coupled with increasing pressure on other healthcare services which have traditionally played a key role in the delivery of a palliative care, such as community nursing and primary care, 12 is leading to marked inconsistencies in how children and their families experience such care. Outcomes described as important in policy, including advance care planning and discussions about a preferred place of death, are not consistently offered to children with life-limiting and life-threatening conditions and their families.…”

Section: Introductionmentioning

confidence: 99%

Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review

et al. 2019

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Background: Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises. Aim: The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved. Design: This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646). Data sources: An iterative literature search was conducted over 2 years (2015–2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included. Results: Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context–mechanism–outcome configurations in four conceptual areas: (1) family adaptation, (2) the child’s situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the ‘expert’ child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care. Conclusion: Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.

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Developments in paediatric palliative care

Cited by 9 publications

References 5 publications

Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study

Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review

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