Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review

Title

Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review

Creator

Ekberg S; Bradford N; Herbert A; Danby S; Yates P

Publisher

Journal of Palliative Medicine

Date

2018

Description

The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, “healthcare users” will be taken to include children who have life-limiting conditions and their families. The question to be addressed is: Review question/objective What are healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions? Background The prospect of the death of a child from an incurable medical condition is harrowing, yet finding a way to discuss this prospect is crucial to maximize the quality of life for such children and their families. High-quality communication is well recognized as a core skill health care professionals need to maximize the quality of care they provide.1-15 This skill is valued by service users, who consistently rate it as one of the highest priorities for the care they receive.5-8,15 Evidence suggests, however, that healthcare professionals can feel ill-equipped or uncomfortable communicating with and about such children.11,16-18 Therefore, it is important to understand what represents high-quality communication and what is involved in accomplishing this within pediatric palliative care. Background In recent decades there has been an increased focus on providing palliative care for children who have life-limiting conditions.9,15,19-23 These are conditions for which no cure is available and for which the probable outcome is premature death.24 Palliative care may also be appropriate for children who have life-threatening conditions; these are conditions where there is not only a high probability of premature death but also a chance of long-term survival into adulthood24 Although pediatric palliative care is underpinned by the same philosophy as adult palliative care,9,24 children who have life-limiting conditions and their families have particular needs that distinguish them from users of adult palliative care.15 For example, at a physical level children are more likely than adults to have non-malignant conditions that follow trajectories in which children oscillate between feeling relatively well and acutely unwell.9,15,25 The social dynamic of their care is also radically different, particularly given the role of parents or guardians in making surrogate decisions about their child's care.15,26-29 Such factors warrant considering pediatric palliative care as distinct from palliative care more generally

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

July 2018 List

Issue

10

Volume

14

Collection

Citation

Ekberg S; Bradford N; Herbert A; Danby S; Yates P, “Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review,” Pediatric Palliative Care Library, accessed November 20, 2018, https://pedpalascnetlibrary.omeka.net/items/show/15177.

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