Abstract
Introduction One of the ‘arts’ of age-appropriate care for adolescents and young adults (AYA) with cancer is a holistic approach to delivering care, which relies on the knowledge, skills and attitudes of all healthcare professionals (HCP). Aim The paper aims to describe the five ‘Es’ enabling holistic competence. Methods Data were collected across four specialist AYA services (21 hospitals) in a multi-site case study; using semi-structured interviews with 29 AYA and 40 HCPs, focussed ethnography and observation (120 hours). Data were analysed through thematic and framework analysis. Results HCP holistic competence was enabled by the five ‘Es’: Exposure to experience continuum: dependent on the AYA case load of the care setting. More contact with AYA facilitated knowledge in needs beyond clinical treatment. Enthusiasm: vital with smaller caseloads of AYA. Interest in the speciality heightened holistic knowledge, often created through leadership. Environment: a specialist environment to meet AYA psychosocial needs increased HCPs ability to support AYA holistically. Education: occurred on three levels: raising awareness of AYA needs, in–house education, and formal training in AYA care. Ethos: core to culture of care was a whole–team approach recognising individuality, empowering, and promoting normality for AYA. Discussion and conclusion HCP holistic competence was dependent on the level of contact with AYA: a continuum from infrequent exposure to AYA, to substantial experience in specialist services. This contact level was related to the care environment (non-specialist or specialist) and together with enthusiasm for the speciality, was a key factor in the creation of a holistic, AYA-focussed ethos of care. Centralising AYA cancer services would increase the experience HCPs have of working with AYA, within age-appropriate environments of care, thus fostering an ethos of care sensitive to AYA holistic needs. Whether this impacts outcome will become evident in early 2019 when the results of BRIGHTLIGHT are released.
Highlights
We identified a spectrum of types of information about patient experience, including written feedback from surveys and complaints; ‘bedside’ conversations or patients returning to speak about their experiences; and information received in a sensory way such as a hug, or gifts of chocolates or flowers
Some types of data were codified and used as intelligence within organisations to monitor and improve services, but much of the information about patient experience remained ‘below the line’: it was recognised by staff and used to shape their practice informally, but never entered the formal economy of data for improvement
One of the ‘arts’ of age-appropriate care for adolescents and young adults (AYA) with cancer is a holistic approach to delivering care, which relies on the knowledge, skills and attitudes of all healthcare professionals (HCP)
Summary
One of the ‘arts’ of age-appropriate care for adolescents and young adults (AYA) with cancer is a holistic approach to delivering care, which relies on the knowledge, skills and attitudes of all healthcare professionals (HCP). Aim To develop an exemplar in PC that draws together the findings from quantitative and qualitative systematic reviews to inform reasons for discrepancies between the two and suggest directions for future intervention development. Several indicators have been developed to measure patient experience and provide institutional benchmarks, comparatively little is known about the range of sources of information about patient experience within healthcare, or about how staff interpret and use experiential data to enhance knowledge and improve care. Aims To understand more clearly the breadth of patient experience data which is currently available and how it is being responded to by healthcare professionals to improve patient care. Different research has suggested that involving patients during meetings, normally intended for doctors, is beneficial: to inform patients, and to integrate the patient’s perspective in the discussions on future cure and care. Qualitative methodology can provide critical insight on the process of KT interventions and the contexts in which KT activities occur
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