Parents' and Health Professionals' Views of Collaboration in the Management of Childhood Long-term Conditions

To explore how parents and health professionals view the concept and practice of collaboration in the management of childhood long-term conditions. A qualitative research approach was adopted; sixteen parents and six health professionals participated in either individual or group interviews. Data analysis was underpinned by the Framework approach and involved an iterative process of reading the transcribed data, identifying and refining key themes until a coherent picture emerged. Two main concepts were identified: expectations of collaboration and mechanisms for collaboration. Health professionals' expectations of collaborative practice were influenced by their knowledge, experience and relative objectivity. They used relationship building with families as a key strategy for collaboration. Parents' expectations of collaboration varied and appeared to be influenced by their experience of living with their child's condition. Parents' needs were often unmet, particularly in relation to support with coordinating or accessing care on behalf of their child. Parents' strategies included resilience, assertiveness, determination and battling for what they needed. Parents and professionals valued collaboration as a concept but differed in their expectations of collaborative practice and adopted different mechanisms to foster meaningful collaboration. A better understanding of the unique needs and experiences of parents of a child with a long-term condition is key to developing positive collaborative practice. Collaborative practice could be enhanced by health professionals' being more responsive to the full range of parent support needs, and being more pro-active about helping them work with the complexities of care systems. •Patient-centered and family-centered care are poorly defined concepts and not routinely embedded into every day practice;•Effective parent-health professional collaboration may result in improved outcomes for children and their families;•The nature of the parent-health professional relationship is key to developing positive collaborative practice;•Families and health professionals differ in their expectations of strategies to work collaboratively.