Family‐centred care for hospitalized children aged 0‐12 Years: A systematic review of qualitative studies

Background The foundation for a family‐centered approach to pediatric health care is the belief that a child's emotional and developmental needs, and overall family wellbeing are best achieved when the service system supports the ability of the family to meet the needs of their child by involving families in their child's care. There are a range of potential benefits and difficulties associated with the provision of family‐centered care, e.g. role negotiation, parental expectations in regard to participation in their child's care, and issues relating to power and control. Currently, however, there is limited systematic information on how the principles of family‐centered care are implemented in the delivery of care to the hospitalized child and their family, and the impact on the family and the health care providers. Objective To synthesize the existing qualitative evidence on family and/or health providers' experience of family‐centered models of care for hospitalized children aged 0‐12 years (excluding premature neonates). Inclusion criteria Types of participants Hospitalized children aged 0‐12 years (but excluding premature neonates), their family and/or health providers. Phenomenon of interest The phenomenon of interest for this review was family and/or health providers' experience of family‐centered models of care for hospitalized children. Only studies that provided clear evidence that the family and/or child were actively involved in the planning and/or delivery of health care during the child's hospitalization were included. Types of studies Studies using qualitative methodologies, e.g. phenomenology, grounded theory, and descriptive qualitative designs, together with studies employing mixed methods (only qualitative data being extracted) were considered for the review. Types of outcomes The two outcomes of interest were the participants' experiences and their perceptions related to the care provided within a model of family‐centered care. For each of these “umbrella” outcomes a number of specific outcomes were detailed, e.g. for “experience” ‐ parental comfort with their degree of involvement in their child's care, and for “perceptions” ‐ the extent of commitment of health providers to implementing this model of care. Search strategy The search strategy sought to identify both published and unpublished studies. There was no limitation by publication language and databases were searched from inception to 2013. Methodological quality Papers identified by the screening process as being potentially eligible for inclusion were assessed by two independent reviewers for methodological quality using standardized critical appraisal tools from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI‐QARI). Data collection Data were independently extracted from the 14 included studies by two reviewers using the standardized data extraction tool from JBI‐QARI. The data extracted included specific details about the populations, study methods and findings of significance to the review objective. Data synthesis Study findings were pooled using JBI‐QARI. Findings were rated according to their level of credibility and categorized based on similarity in meaning. These categories were then subjected to a meta‐synthesis to produce a comprehensive set of synthesized findings. Results Fourteen studies were included in the review. Six synthesized findings from the experiences and perspectives of parents and three from those of health care providers were derived from a total of 29 categories and 84 findings. There were common themes in the synthesized findings from both groups, e.g. the value of parents being with their child and continuing the “mothering” role, recognition of the barriers to implementing family‐centered care. However role negotiation around parents' participation could prove difficult or non‐existent. Parents' experiences with staff in terms of interpersonal skills and communication were both positive and negative. Conclusions This review confirms that parents wish to participate in their hospitalized child's care. However the nature and extent of this involvement has to be negotiated on an individual family basis. Although it appears that nurses and other health care professionals have a reasonably good understanding of the elements that constitute family‐centered care, incorporation of these into practice is not uniform. The difficulty is that the changes required challenge professional power.