Care coordination, consistency and continuity: the case of the key worker role in children’s cancer care

Abstract

Purpose The overall aim was to evaluate the key worker role across principal treatment centres for children with cancer in England, Wales and Scotland. Methods Mixed-methods case study gathering data from multiple perspectives using questionnaires, interviews, focus groups and reports/performance documents over a two-year period. Framework approach was adopted to analyse transcripts and documentary data. Results Participants included: 22 nurse specialist key workers, 103 parents, 85 professionals and 10 children/young people. Qualitative and quantitative data were woven together, to best illuminate key worker services. Four main models of care were described as well as the context of care and process of care. Key working effectiveness centred around three pillars: care coordination; expert knowledge, experience and expertise; relationship. These were essential to improved family experience, emotional wellbeing, and delivery of individualized care closer to home. Conclusions The role is complex and diverse, responding to local needs. Certain conditions, (e.g., high caseload) placed limits on enacting the three pillars, diminishing the positive experience of families. When they worked well, key workers reduced the fragmented nature of services and families placed great value on keeping the same key worker from diagnosis into long-term care. Retaining these roles, where already in place, or including, if not, we would recommend, factoring into budgets to sustain and expand such roles.

Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review

“…The implementation of successful projects in this area regarding complex chronic diseases in pediatrics is also described, with the role of case managers generating gains compatible with those found in this review [ 33 , 34 , 158 , 159 ]. However, there is also evidence of the inherent difficulties associated with the turnover of professionals in the inpatient setting, their potential overload and the high emotional demand [ 160 ].…”

Development of an intravenous chemotherapy intervention for children and adolescents with cancer administered by their parents at home (INTACTatHome)

“…Changes in clinical care practice for intravenous home chemotherapy interventions in the current study are identified by the workshop HCPs as barriers in two main topics: 1) "Increased educational support as part of care", and 2) "Increased care coordination", indicating potential key uncertainties to be cognizant of when testing feasibility of the intervention and as relevant evaluation outcome measures [29][30][31]. Martins et al identify "care coordination" as one of three core elements of the critical worker's care process in a comprehensive study that explores and defines the role of the nurse specialist in UK [54,55]. Although care coordination in these studies is explored within a context whereby shared care centers are well-established in the pediatric cancer care, it underlines the family need for care coordination and elucidates some of the challenges to be attentive to when complex care is transferred to the home.…”