Meeting the ongoing needs of survivors of rarer cancer.

With more treatment options for people with cancer long-term survivorship is increasing. Physical and psycho-social needs have been identified in survivors of common cancers but very little has been written about the needs of patients with rarer cancers. Patients treated for rarer cancer are discharged to the primary health care team (PHCT), yet little is known about the assessment, management and support of these patients. Thirty-nine semi-structured interviews were conducted with (1) survivors of and (2) people living with rarer cancer (i.e. <5% of cancer burden). Participants were asked about physical and psycho-social needs and service provision. Data were analysed thematically using Atlas ti. Contrary to expectation, disease-free survivors of rarer cancer were indistinguishable from those living with disease in their ability to cope, and range of symptoms and needs. Participants with a clinical nurse specialist (CNS) reported that they were well supported on their return home and their needs were met. Participants without a CNS were referred to the PHCT who were unsure how to assess or support them. These participants felt abandoned. There is a need for the rehabilitation of patients with rarer cancer to strengthen individual coping mechanisms, and family and social support. Although there are resource and training implications, this is a potential role for the PHCT, district nursing in particular, and may lead to more focused and targeted provision of services.

Working with the team: strategies employed by hospital cancer nurse specialists to implement their role.

AIM: This paper describes the strategies used by cancer nurse specialists in the UK to implement their role within the multiprofessional team. BACKGROUND: The prevalence of cancer increasingly preoccupies the developed world causing concern about the effective use of healthcare resources. The demand to contain healthcare costs and meet the complex needs of patients has led to the development of new and different types of nurse specialist roles. In the UK, these initiatives have been supplemented by reorganizing cancer services to ensure care is delivered by collaborative multiprofessional teams: nurse specialists are considered core team members. While role ambiguity and conflict are acknowledged as barriers to the successful introduction of new roles, little is known about the strategies used by individuals to facilitate role implementation. DESIGN: A grounded theory design using purposive and theoretical sampling. METHODS: Twenty-nine cancer nurse specialists from five hospitals participated in observation and semistructured interviews. The data were analysed concurrently using the constant comparative method. RESULTS: Acceptance, especially by doctors, was the main problem facing cancer nurse specialists. In addition, they experienced insufficient organizational support for their role. Difficulties with acceptance impaired nurses' ability to provide supportive care to cancer patients. Nurse specialists responded by employing several strategies including building relationships and establishing role boundaries. CONCLUSIONS: Some strategies used by nurse specialists are more successful than others in facilitating role implementation. While recommendations exist to assist the introduction of new roles in practice, their implementation by healthcare organizations may be limited. Future approaches should focus on helping nurses develop awareness of the problems they face, why they arise and effective mechanisms for their resolution. RELEVANCE TO CLINICAL PRACTICE: The findings highlight the mismatch between cancer policy aspirations and reality and the actions taken by nurse specialists to overcome the problems they encounter.

Challenges to end of life care in the acute hospital setting.

BACKGROUND: Research exploring patients' care and treatment preferences at the end of life (EOL) suggests they prefer comfort more than life-extension, wish to participate in decision-making, and wish to die at home. Despite these preferences, the place of death for many patients is the acute hospital, where EOL interventions are reported to be inappropriately invasive and aggressive. AIM: This paper discusses the challenges to appropriate EOL care in acute hospitals in the UK, highlighting how this setting contributes to the patients' and families' care and treatment requirements being excluded from decision-making. METHODS: Twenty-nine cancer nurse specialists from five hospitals participated in a grounded theory study, using observation and semi-structured interviews. Data were collected and analysed concurrently using the constant comparative method. RESULTS: EOL interventions in the acute setting were driven by a preoccupation with treatment, routine practice and negative perceptions of palliative care. All these factors shaped clinical decision-making and prevented patients and their families from fully participating in clinical decision-making at the EOL.