Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child’s specialist care?

Abstract

The purpose of this article is to offer an improved understanding of how parents of children with long-term disabilities are empowered to successfully take up their role as decision-making partners in the design and delivery of the care of their child. The intention is to stimulate dialogue, encourage reflection and provide practical suggestions for health professionals working with children and their families. The reported findings are from a study which was guided by a constructivist grounded theory methodology. This involved an iterative process of repeated cycles of data collection and analysis, which comprised 12 semi-structured, in-depth interviews with 14 parents of children accessing paediatric services within a single National Health Service Trust. A novel model, explaining how the power im/balance and the perceived state of the therapeutic relationship influence how successfully a parent takes up their position in the collaborative partnership, is presented and discussed. It is suggested that by thoughtfully addressing the traditional hierarchy that exists within healthcare, health professionals might facilitate the development of a ‘truly’ therapeutic relationship, which can help promote parental empowerment.

Shared decision-making for children with medical complexity in community health services: a scoping review

“…Two qualitative 26 34 and two quantitative 3 36 studies reported on the implementation of SDM with CMC in community settings. The two qualitative studies were conducted 26 years apart (ethnographic study in 1995 26 and interview-based study in 2021 34 ), in both parents perceived a power imbalance between them and HCPs with decision-making situated with HCPs. Two quantitative studies analysed the same dataset from a national survey in the USA 3 36 and found that although 85% of parents felt like partners with their child’s doctor, there was a negative association with minority ethnic and low socioeconomic status 36 and children with greater complexity.…”

“…7 13 53 This review identified accessible, adequate, accurate and balanced information as one of the most significant contributors to successful SDM and conversely, the lack of evidence and information as a barrier to SDM. Providing information that outlines options, risks and uncertainties can improve SDM 7 8 and if presented in an Limited or conflicting information 25 29 30 39 Uncertainty about child's comfort and quality if life 36 50 Family level Language barriers 29 36 38 40 45 Poor general and health literacy 25 28 45 50 Lack of parental understanding of child's diagnosis and prognosis 29 40 45 Lack of trust in HCPs 27 34 50 Parents not feeling heard 34 44 50 Poverty, Black or minority ethnic background 35 36 Parental physical and emotional exhaustion and strong emotions 32 50 Interpersonal level-theme: power imbalance Hierarchy and power imbalance, coercive conversations by HCP, failure to explain options fully or withholding information and labelling parents as non-compliant if they disagree with HCPs Lack of time in consultations 3 43 45 Lack of professional understanding and valuing of SDM 31 45 Limited access to the right person to answer questions 4 50 HCPs, healthcare providers; SDM, shared decision-making.…”

Breastfeeding sick children in hospital: Exploring the experiences of mothers in UK paediatric wards

“…Encouragement and praise even without practical problem solving was viewed positively and protected self‐esteem. Other studies have found that when parents are involved in decision making, they feel more empowered (Ashcraft et al, 2019; Reeder & Morris, 2021). Beyond practical support, some parents were able to find someone who could answer their question.…”

Children living with long‐term conditions and their experiences of partnership in nursing care: An integrative systematic review

“…Vulnerability should not be seen as incompetence, with many children having the capacity and awareness to participate in decision-making (Skyrme & Woods, 2018). Previous literature has demonstrated that parents wish for more control in their child's healthcare and decision-making, recognising a power imbalance between HCP and parents (Barratt et al, 2021;Reeder & Morris, 2020).…”

“…Vulnerability should not be seen as incompetence, with many children having the capacity and awareness to participate in decision‐making (Skyrme & Woods, 2018). Previous literature has demonstrated that parents wish for more control in their child's healthcare and decision‐making, recognising a power imbalance between HCP and parents (Barratt et al, 2021; Reeder & Morris, 2020). Nurse perceptions in the literature highlight that nurses can feel threatened by parents seeking control in the triad partnership, and this can be a barrier to shared decision‐making (Barratt et al, 2021; Reeder & Morris, 2020).…”