G464 Polypharmacy in paediatric palliative care

Mtunzi, Njm; Baba, Megumi

doi:10.1136/archdischild-2019-rcpch.449

Cited by 2 publications

(3 citation statements)

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“…(3) theme development; (4) reviewing of themes; (5) defining and naming the themes; (6) writing up and summarising themes. The aim of thematic analysis is to identify patterns and themes in qualitative data 13 and the steps of thematic analysis were followed in an inductive and iterative manner.…”

Section: Discussionmentioning

confidence: 99%

“…1 The parents of these children usually assume an extensive caring role including the management of ventilation support, 3 gastrostomy feeding 4 and multiple medications. 5 Further, parents are often required to balance additional responsibilities such as managing busy appointment schedules, offering advocacy, negotiating complex decision making, supporting education, providing transport, alongside fulfilling family and social responsibilities. 6 These responsibilities are ever present, particularly for mothers, who are most likely to be their child's primary caregiver.…”

Section: Introductionmentioning

confidence: 99%

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The health of mothers of children with a life-limiting condition: A qualitative interview study

2022

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Background: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers’ perspectives. Aim: To explore mothers’ accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health. Design: Qualitative semi-structured interviews were conducted and analysed using thematic analysis. Setting/participants: Thirty mothers of children with a life-limiting condition were recruited via three UK children’s hospices and social media. Results: Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers’ reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child’s. Hospice support was particularly valuable in this respect. Conclusions: A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The health of mothers of children with a life-limiting condition: A qualitative interview study

2022

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“… 4 Furthermore, they often require multiple medications either for the direct treatment of their condition or for pain and symptom management. 5 …”

Section: Introductionmentioning

confidence: 99%

Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis

Fisher

Fraser

Taylor

2021

BMJ Support Palliat Care

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BackgroundChildren with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers’ perspectives, meaning that fathers’ experiences are not well understood.ObjectivesTo identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition.MethodsA systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index.ResultsFindings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers’ experiences of uncertainty and shock around the time of their child’s diagnosis, their accounts of a ‘new normal’, difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers’ role conflicts. They discussed the life-changing nature of their child’s diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions.ConclusionsFathers experience many difficulties in response to their child’s diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers’ responses are not widely understood, and research that directly addresses their own well-being is warranted.

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G464 Polypharmacy in paediatric palliative care

Cited by 2 publications

References 0 publications

The health of mothers of children with a life-limiting condition: A qualitative interview study

The health of mothers of children with a life-limiting condition: A qualitative interview study

Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis

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