Background and purpose Effective collaboration between nurses and families is fundamental to supporting children with long-term conditions and their families. The family-centred care model is widely espoused as an effective framework that facilitates parents’ involvement in their child’s care (Smith et al, 2015). The implementation and evaluation of this model deserves further scrutiny. This paper presents two complementary critical evaluations of family-centred care research, particularly in the context of childhood long-term conditions.
Methods A scoping review of MEDLINE, CINAHL, PSYCINFO databases from 2000 to 2014 was undertaken to identify instruments that measure family family-centred care. A complementary systematic literature search of Scopus, CINAHL, BNI databases was undertaken to identify research on the implementation family-centred care in practice.
Results Fifteen studies were identified that had used measures to evaluated family-centred care but measures were often poorly defined and generally measured satisfaction rather than collaborative practice associated with family-centred care. A lack of clarity surrounds the reliability and validity of some instruments used to measure family centred care. The validated Measure of Processes of Care (MPOC) was the most frequently measure used to evaluate family-centred care.
Twenty studies were reviewed to identify the key antecedents of family-centred care which included: ‘unclear roles and boundaries’; ‘entrenched professional practices and attitudes towards working with families’; ‘lack of organisational or managerial guidelines or policies specifically aimed at supporting the implementation of family-centred care’. The key attributes associated with family centred care were: ‘valuing parents knowledge and experiences’, ‘supporting parents in their role as care giver’; ‘incorporating parents’ expertise into clinical and psychosocial care’, are particularly salient when empowering and supporting children, young people and families in the management of long-term conditions in children.
Conclusion Parents develop considerable expertise in managing their child’s long-term condition but they perceive their expertise is not always valued and the quality of parent-professional interactions was variable (Smith, et al. 2013). Promoting and facilitating the child, young people and family’s involvement in the care of children with long-term conditions requires nurses to practice family centred care (Shields et al 2012), yet tools to measure implementation and evaluation studies are limited.
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