Levers and barriers to patient-centred care with children: findings from a synthesis of studies of the experiences of children living with type 1 diabetes or asthma

Background The last 50 years have seen a sea change in approaches to health care with children, from a time when children were routinely separated from parents while in hospital, to current recognition of the importance of placing the experiences of children and their families at the heart of care. Yet, there is a gap in the evidence about how children's involvement might be best achieved. This study aimed to synthesize findings of children's experiences of long-term illness and, from this, to identify levers and barriers to patient-centred care with children. Methods A synthesis of studies of the experiences of children living with type 1 diabetes or asthma. Data sources Eight health and social care databases, bibliography searches and consultation with field experts and first authors of included studies. Eligibility criteria Qualitative studies with children 10 years (mean) and younger on their experiences of living with type 1 diabetes or asthma. Main results Findings suggest key 'levers' to patient-centred care with children include: (1) engagement with children's expertise about their own lives: their personal and social experiences of their care, including how these are affected by their relative lack of power in some settings; (2) exploring children's understandings and preferences in terms of their physical sensations and day-to-day experiences; (3) willingness to find resources to engage with even the youngest children; (4) avoiding age-based assumptions about children's contributions to their care. Discussion and conclusions Action on the above 'levers' may present a range of challenges in healthcare settings not least because it represents a move away from medicine's historical focus on children's developing competencies to engage rather with children's social realities from the earliest ages.