Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review

Abstract

Background: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often avoid or delay initiation. An overview of evidence on the factors that influence and impact on the health care professional’s initiation of paediatric advance care planning process is lacking. Aim: To review and synthesise evidence on the factors associated with health care professional’s decision to initiate paediatric advance care planning. Design: Systematic integrative review using constant comparison method. Data Sources: Electronic databases (CINAHL, PubMed, PsycINFO, Ovid MEDLINE, EMBASE, Web of Science and Cochrane) using MeSH terms and word searches in Oct 2019. No limit set on year of publication or country. Grey literature searches were also completed. Results: The search yielded 4153 citations from which 90 full text articles were reviewed. Twenty-one met inclusion criteria consisting of quantitative ( n = 8), qualitative ( n = 6) and theoretical ( n = 7) studies. Findings revealed overarching and interrelated themes ‘ The timing of initiation’, ‘What makes an initiator, ‘Professionals’ perceptions’ and ‘Prerequisites to initiation’. Conclusions: This review provides insights into the complexities and factors surrounding the initiation of advance care planning in paediatric practice. Uncertainty regarding prognosis, responsibility and unpredictable parental reactions result in inconsistent practice. Future research is required to inform intervention to assist health care professionals when initiating paediatric advance care planning conversations.

Initiation of paediatric advance care planning: Cross‐sectional survey of health professionals reported behaviour

“…A questionnaire to examine current practices, factors and behaviour determinants influencing health professionals' approaches to initiation of paediatric advance care planning was developed from a review of the literature and informed by the COM-B framework (Carr et al, 2020;Michie et al, 2014). The COM-B model proposes that individuals must be psychologically and physically able (Capable…”

Parents’ experiences of initiation of paediatric advance care planning discussions: a qualitative study

“…Qualitative research using semi-structured interviews was adopted as they enabled an in-depth-understanding of parent's views and experiences of pACP initiation. This research was part of a mixed methods study and has been informed by a previous systematic literature review [16], HCP survey and interviews with HCP. This previous research indicated that the vital aspect of the voice of the parent in pACP initiation was missing and also informed the interview questions and prompts.…”

“…The initiation of pACP, however, can be challenging due to unpredictable trajectories and advances in technology which aid survival and life span of the child [4,5]. Early engagement with pACP is widely advocated [6][7][8][9][10], purported to reduce child suffering, parental anxiety and decisional regret [11][12][13][14], enabling HCP to anticipate decisions in potential deterioration scenarios [2,15,16].…”

Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences

“…While healthcare professionals perceive advance care planning as helpful,3 implementation is patchy and inconsistent4–6 and content and quality of advance care plans varies 6 7. Effective implementation is influenced by several factors, including healthcare professionals’ discomfort in facilitating discussions, tensions between professionals about roles and responsibilities in decision-making and the best course of action, and difficulty anticipating likely consequence of deterioration 3 8–10…”

“…A substantial body of research has focused on enhancing the implementation of advance care plans and developing tools and interventions for use with children with long-term conditions 13–15. Debate addresses issues like when to initiate advance care planning4 and the frequency of such discussions3 and most of this body of work is characterised by professional experience of advance care planning,16 17 predominately generated through surveys10 16–19 and audits 6 7 20–22. In contrast, there is a paucity of research investigating parental experiences of advance care planning for children with life-threatening or life-limiting conditions.…”