Engaging and collaborating with children, young people and families

Well in my last blog I was preparing for two conferences, the 2nd Paediatric Nurses Association Europe Congress held in Glasgow, Scotland and the 7th International Shared Decision Making conference in Lima, Peru, and promised to share with you the debates and issues from these conferences. The conferences contrasted in relation to delegate backgrounds, focus, and location. However, the overwhelming shared issues related to a need for health professionals to put patients and their families at the centre of care, recognising and responding to their needs. 

As a children’s nurse, working in partnership with children, young people and families is not a new concept and certainly something that underpins my current teaching practice. On a similar theme, my research interests relate to engaging and collaborating with children, young people and families in the context of the child with a long-term condition.  Certainly, international health policy advocates that people with a long-term condition become active collaborators in care decisions.  In the context of young children effective collaboration involves health professionals understanding parents’ unique knowledge of their child and valuing their experiences of managing their child’s condition.  As the complexity of care delivered in the home environment continues to increase, valuing the role of parents and their viewpoints is essential if health professionals are to meet parents’ needs as the manager of their child’s care. A recent review of research about parents’ experiences of living with a child with a long-term condition suggests that through skills acquisition and experience parents’ develop considerable expertise in managing their child’s long-term condition and want to work collaboratively with health professionals.1 Yet, parents’ perceive their expertise is not always valued; they are not always included in decisions about their child’s care; not always supported in their quest for information; and forming effective relationships with healthcare professionals can be stressful.  

The review made me question what actually happens in practice, and led to undertaking a study that explored parent-professional shared decision-making in acute hospital admission, where the child had an underlying long-term condition.2 The study included audio recordings of admission consultations, and interviews with parents and health professionals one-week post consultation in order to elicit their perception of involving parents in care decisions.  Doctors and nurses were satisfied with the level they involved parents, though parent satisfaction was more variable.  Parents wanted to contribute to the process of deciding the likely cause of their child’s symptoms but did not perceive their experiences were always valued. Analysis of the admission recordings highlighted variable practice when doctors and nurses collaborated with parents, and provided evidence of both a bilateral and unilateral style of communication.  ‘Bilateral’ collaboration occurs as a process of negotiation, whereas in a ‘unilateral’ approach health professionals operate, in the main, independent of their interactions with the patient.3 The challenge for professionals is to engaging effectively with parents, valuing their expertise and knowledge; forming effective partnerships; through the process of negotiation, empowerment and shared goal setting. Common debates at the conferences related to these very issues.

1Smith, J., Cheater, F., Bekker, H, Chatwin, J. (2013) Are parents and professionals making shared decisions about a child’s care on presentation of a suspected shunt malfunction: a mixed method study? Health Expectations (online doi: 10.1111/hex.12106);

2Smith, J., Cheater, F., Bekker, H. (2013) Parents’ experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expectations (online doi: 10.1111/hex.12040);

3Collins S, Drew P, Watt I, Entwistle V. ‘Unilateral’ and ‘bilateral’ practitioner approaches in decision-making about treatment. Social Science and Medicine, 2005; 61: 2611-2627.

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