Purpose The importance of the key worker role in promoting continuity and coordination of care for children with cancer and their families is recognised but evaluation of such services is less well developed with little information available about different patterns of provision and the determinants for success. Therefore, our aims were: identify models of key working and influencing factors; analysis of professionals and parents’ views of the impact of the key worker role on families’ experiences.
Methods Thirty-six semi-structured individual interviews and one focus group (n = 12) with key workers and twenty-eight interviews with parents were conducted. Multiple case study method was used to identify the models of key working developed and the impact on families’ experiences.
Results Four models of care were identified. These models are organised along two dimensions - presence/absence of home visits and presence/absence of direct delivery of clinical care. Key worker involvement in care coordination and home visits was influenced by the resources available, in the hospital and in the community, these included staff and caseload numbers. Parents viewed the key worker role as a reliable, consistent, approachable source of support. The support was tailored to parent’s needs and included information and advice, emotional and practical support. Having a main point of contact was highly valued by parents. In particular, parents identified the proactive and responsive nature of the service as central to the value they placed on it. However, some parents recognised the pressures on the key worker to support all the families in their caseload. Consequently, some parents described rationing their demands on the service in the context of other people with greater needs or feeling sometimes that the key worker was not available.
Conclusion The key worker role is instrumental in enabling families and patients to access and navigate services. The complexity of families’ needs throughout the cancer journey is reflected in the complexity of the key worker role. Regardless of the model of care developed, core characteristics of the role and its impact on families’ experiences were identified, these include: coordination of care, being a main point of contact and information.
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