"Holistic Competence": How Is it Developed, Shared, and Shaped by Health Care Professionals Caring for Adolescents and Young Adults with Cancer?

Purpose: In England, specialist cancer services for adolescents and young adults (young people) aged 15-24 are provided in 13 specialist units, with additional care provided in child and adult cancer units in the region. As a result of specialization, health care professionals (HCPs) have refined their competence, to deliver holistic care that has become central to the culture of young people's cancer care. We sought to understand and describe how HCPs developed this competence. Methods: We conducted a multiple case study in four regions across England in 24 hospitals. Data were collected through observation of clinical areas, shadowing members of the multidisciplinary team, and semistructured interviews with young people. Data were analyzed thematically and triangulated to draw meaning applicable to a range of contexts. Results: Young people (n = 29) and HCP (n = 41) across 24 different care settings were interviewed. Holistic competence enabled HCPs to deliver care that considered the age-specific needs of young people, including social, emotional, and psychological needs, in accordance with their life stage and psychosocial development. Development of holistic competence was facilitated by the following four factors: the environment, the experience continuum, enthusiasm, and education. Conclusion: The four factors facilitating holistic competence were interlinked. Working in a specialist/dedicated environment for young people increased HCPs' exposure to young people. This enabled them to become experienced in young people's cancer care, supported through education and training. Without frequent exposure to young people, HCPs were less able to achieve holistic competence, the impact of which was acutely felt by young people.

The culture of young people's cancer care: A narrative review and synthesis of the UK literature.

INTRODUCTION: Growing consensus describes it as "inappropriate" to deliver care to young people in either child or adult environments of care or in settings not equipped to meet their psychosocial needs. The aim of this review was to identify what patient and professional experience tells us about the culture of care specific to young people receiving cancer care in the UK. METHODS: A narrative review of published, UK-based research was conducted. Five online databases were searched using terms related to "culture of care," "cancer" and "adolescent." Papers were assessed for relevance, according to pre-determined criteria: 19/1,366 identified papers met our inclusion criteria. RESULTS: Studies included in this review were predominantly reflective of care received in specialist units. The findings were in support of "young people-friendly," "tailored environments," showing how they facilitate young people to have positive experiences of care. Communication, information delivery and patient choice were themes that were central to the culture of care. CONCLUSION: Highlighted was the need to provide care beyond addressing clinical needs through a young person-centred approach, to facilitate optimal experiences of care. However, to fully understand the culture of care, research needs to focus on the delivery of care outside of specialist units.

Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study.

PURPOSE: Teenage and young adult cancer care in England is centralized around 13 principal treatment centers, alongside linked "designated" hospitals, following recommendations that this population should have access to age-appropriate care. The term age-appropriate care has not yet been defined; it is however the explicit term used when communicating the nature of specialist care. The aim of this study was to develop an evidence-based, contextually relevant and operational model defining age-appropriate care for teenagers and young adults with cancer. MATERIALS AND METHODS: A mixed-methods study was conducted comprising 1) semi-structured interview data from young people with cancer and health care professionals involved in their care; 2) an integrative literature review to identify the current understanding and use of the term age-appropriate care; 3) synthesis of both sets of data to form a conceptual model of age-appropriate care. A combination of qualitative content, thematic and framework analysis techniques was used to analyze and integrate data. RESULTS: Analysis and synthesis across data sources enabled identification of seven core components of age-appropriate care, which were presented as a conceptual model: best treatment; health care professional knowledge; communication, interactions and relationships; recognizing individuality; empowering young people; promoting normality; and the environment. Subthemes emerged which included healthcare professionals clinical and holistic expertise, and the environment comprising both physical and social elements. CONCLUSION: The proposed model, necessarily constructed from multiple components, presents an evidence-based comprehensive structure for understanding the nature of age-appropriate care. It will be useful for clinicians, health service managers and researchers who are designing, implementing and evaluating interventions that might contribute to the provision of age-appropriate care. While the individual elements of age-appropriate care can exist independently or in part, age-appropriate care is optimal when all seven elements are present and could be applied to the care of young people with long-term conditions other than cancer.