Parents’ perspectives on conflict in paediatric healthcare: a scoping review

Abstract

BackgroundConflict in paediatric healthcare is becoming increasingly prevalent, in particular relation to paediatric end of life. This is damaging to patients, families, professionals and healthcare resources. Current research has begun to explore perspectives of healthcare professionals (HCPs), but the parental views on conflict are lacking.ObjectivesThis scoping review explores parental views on conflict during a child’s end of life. In addition, parental views are mapped onto HCPs’ views.MethodsA search was completed of the databases CINAHL, PubMed, Web of Science, Embase and Medline between 1997 and 2019, focused on parents of children with involvement with palliative or end-of-life care referring to conflict or disagreements.ResultsThe review found 10 papers that included parental views on conflict. Data on conflict were categorised into the following seven themes: communication breakdown, trust, suffering, different understanding of ‘best interest’, disagreements over treatment, spirituality and types of decision-making. In particular, parental expertise, perspectives on suffering and ways of making decisions were significant themes. A subset of themes mirror those of HCPs. However, parents identified views of conflict unique to their perspective.ConclusionsParents identified important themes, in particular their perspective of what constitutes suffering and ‘best interest’. In addition, parents highlight the importance of being recognised as an expert.

‘I feel like my house was taken away from me’ : Parents' experiences of having home adaptations for their medically complex, technology‐dependent child

“…They felt powerless when those involved in the adaptation processes perhaps saw their child ‘as a burden or a cost’ (Gallo et al, 2021 : 1) or as ‘undeserving’ (Cross, 2008 ). Like families in other studies, parents said that they had to fight for (Boss et al, 2020 ; Currie & Szabo, 2019 ; Parsons & Darlington, 2021 ), prove they are deserving of and wait for the resources (Dybwik et al, 2011 ) and adaptations (Boniface & Morgan, 2017 ; Smethurst et al, 2021 ) they needed to care for their child at home. Without the correct technology and adaptations, the family were limited in their family and social activities; these findings are echoed in Smethurst et al's ( 2021 ) study.…”

“…They felt powerless when those involved in the adaptation processes perhaps saw their child 'as a burden or a cost' (Gallo et al, 2021: 1) or as 'undeserving' (Cross, 2008). Like families in other studies, parents said that they had to fight for (Boss et al, 2020;Currie & Szabo, 2019;Parsons & Darlington, 2021), prove they are deserving of and wait for the resources (Dybwik et al, 2011) and adaptations (Boniface & Morgan, 2017;Smethurst et al, 2021) Parents knew how costly the adaptations were and wanted them to be long-lasting to avoid wasting taxpayer's money by their child growing out of them and having to apply for more funding. They were aware that health and social care professionals were operating within bureaucratic systems and, like them, had to fight to justify their child's immediate and future needs when making applications for funding.…”

“…Smethurst et al ( 2021 ) also found that parents valued the involvement of allied health practitioners who had knowledge of the current and future needs of their child in the delivery of services, support and assistive technology. Resonating with Parsons and Darlington ( 2021 : 4) suggestion of the importance ‘for all healthcare professionals to respect … [parents’] expertise at every encounter’, the strong, ongoing relationships and good communication between parents who fully or partially self‐funded their adaptations and those involved in their home adaptations resulted in well thought out, cost‐effective adaptations that met their child and family's long‐term health, well‐being, accessibility, privacy and dignity needs.…”

Tracheostomy and long‐term invasive ventilation decision‐making in children: A scoping review

“…In the broader pediatric literature, there is a recognition that conflicts may occur as a consequence of differing perspectives of what constitutes best interests. 103 Similarly, our review identified those cases where an impasse may result due to differing perceptions of suffering, particular religious beliefs, and so forth. 22,30 Mechanisms are needed for a timely response and hopefully resolution to these disputes with less moral distress for teams and familiescaregivers, 7,32 so the child is not left without an identified trajectory of care, exposing the child to unnecessary burdens of care, prolonged suffering, or loss of dignity.…”

Work engagement, emotional disorders and conflict management styles in paediatric nurse: A mediating effect model

“…Particularly, a conflict which exists between two or more individuals may consume considerable amounts of nurses' time and create an atmosphere of concealment that weakens work engagement. Several researches show that conflict may reduce the effectiveness of treatment, even accelerating absenteeism and turnover rate and lowering inter‐professional collaboration, coordination and efficiency in paediatric nurses (Akanji et al, 2018; Gokoglan & Ozen Bekar, 2021; Labrague et al, 2018; Parsons & Darlington, 2021). Therefore, head nurses or other nursing managers need to carefully evaluate how nurses deal with these conflicts in order to develop effective conflict management strategies.…”