Harnessing the power of clinician judgement. Identifying risk of deteriorating and dying in people with a haematological malignancy: A Delphi study.

AIM: To provide expert consensus on the clinical indicators that signal a person with a haematological malignancy is at high risk of deteriorating and dying. BACKGROUND: Identification of people who are at risk of deteriorating and dying is essential to facilitate patient autonomy, appropriate treatment decisions, and effective end-of-life care. DESIGN: A three-step modified Delphi approach. METHODS: The study was conducted over 6 months (September 2015-March 2016) to gather opinion from an international panel of experts (N = 27) on the clinical indicators that signal a person with a haematological malignancy is at high risk of deteriorating and dying. The first round was informed by a systematic review of prognostic factors present in the final months of life for people with a haematological malignancy. Consensus was achieved if 70% of responses fell within two points on a seven-point Likert-type scale. FINDINGS: Consensus was achieved on the following 11 clinical indicators: (a) advancing age; (b) declining performances status; (c) presence of co-morbidities; (d) disease status; (e) persistent infections (bacterial and viral); (f) fungal infections; (g) severe graft versus host disease; (h) requiring high care; (i) signs of frailty; (j) treatment limitations; and (k) anorexia and/or weight loss. Consensus was also achieved on associated themes and statements for each indicator. CONCLUSION: The findings of this study indicate that subjective clinician-assessed indicators that are contextually relevant to the nature of haematological malignancies are markers of risk. This study has provided valuable preliminary findings on the topic and will inform future research.

The positioning of palliative care in acute care: A multiperspective qualitative study in the context of metastatic melanoma.

OBJECTIVE: The positioning and meaning of palliative care within the healthcare system lacks clarity which adds a level of complexity to the process of transition to palliative care. This study explores the transition to the palliative care process in the acute care context of metastatic melanoma. METHOD: A theoretical framework drawing on interpretive and critical traditions informs this research. The pragmatism of symbolic interactionism and the critical theory of Habermas brought a broad orientation to the research. Integration of the theoretical framework and grounded-theory methods facilitated data generation and analysis of 29 interviews with patients, family carers, and healthcare professionals. RESULTS: The key analytical findings depict a scope of palliative care that was uncertain for users of the system and for those working within the system. Becoming "palliative" is not a defined event; nor is there unanimity around referral to a palliative care service. As such, ambiguity and tension contribute to the difficulties involved in negotiating the transition to palliative care. SIGNIFICANCE OF RESULTS: Our findings point to uncertainty around the scopes of practice in the transition to palliative care. The challenge in the transition process lies in achieving greater coherency of care within an increasingly specialized healthcare system. The findings may not only inform those within a metastatic melanoma context but may contribute more broadly to palliative practices within the acute care setting.

Understanding the optimal learning environment in palliative care.

The learning experiences of student nurses undertaking clinical placement are reported widely, however little is known about the learning experiences of health professionals undertaking continuing professional development (CPD) in a clinical setting, especially in palliative care. The aim of this study, which was conducted as part of the national evaluation of a professional development program involving clinical attachments with palliative care services (The Program of Experience in the Palliative Approach [PEPA]), was to explore factors influencing the learning experiences of participants over time. Thirteen semi-structured, one-to-one telephone interviews were conducted with five participants throughout their PEPA experience. The analysis was informed by the traditions of adult, social and psychological learning theories and relevant literature. The participants' learning was enhanced by engaging interactively with host site staff and patients, and by the validation of their personal and professional life experiences together with the reciprocation of their knowledge with host site staff. Self-directed learning strategies maximised the participants' learning outcomes. Inclusion in team activities aided the participants to feel accepted within the host site. Personal interactions with host site staff and patients shaped this social/cultural environment of the host site. Optimal learning was promoted when participants were actively engaged, felt accepted and supported by, and experienced positive interpersonal interactions with, the host site staff.

A qualitative analysis of reproductive issues raised by young Australian women with breast cancer.

Available literature concentrates on infertility concerns of young women with breast cancer, while attention to psychosocial issues related to maintained or regained fertility is scarce. As part of a longitudinal, qualitative study of experiences of young women with breast cancer (diagnosed at 40 years or younger); (n = 13), concerns about fertility, contraception, pregnancy, and breastfeeding after breast cancer were expressed. Using semistructured, one-to-one interviews over three time phases, we explored these women's experiences. Perceptions of fertility changed over time. Contraception issues were raised together with recurrence fears related to pregnancy and breastfeeding after breast cancer. Decisions related to unplanned pregnancies and breastfeeding were described as particularly onerous.

Issues and concerns of young Australian women with breast cancer.

GOALS OF WORK: Young women tend to experience many similar issues to that of their older counterparts, although more negatively and intensively. However, they also have specific concerns, which are not so apparent in studies that include a wide age range of participants. The aim of this study was to identify and explore the issues and concerns of Australian women diagnosed with breast cancer before age 41 years. PARTICIPANTS AND METHODS: We conducted in-depth, semi-structured interviews with a self-selected, convenience sample of 35 Australian women with breast cancer, diagnosed at 40 years of age or younger and no more than 4 years previously. Themes found within the literature about 'younger' women up to 50 years of age provided guidance to the interviews. The audiotaped interviews were transcribed verbatim. The data were analysed using the basic analytical principles of data reduction, data display and drawing conclusions. The data were initially subdivided according to the literature-derived themes. Content analysis was performed on the categories developed, revealing the most pressing concerns of participants. MAIN RESULTS: Second to fear of recurrence and future uncertainty, children and family were the most commonly reported major personal concern. Consumer-related issues and concerns for children and family were equally reported as the greatest general concern of young women with breast cancer. The greatest unmet need of participants was support. CONCLUSIONS: Age-appropriate information and support for this group of young women with breast cancer remains a challenge. This paper suggests ways young Australian women with breast cancer can access additional support with the use of technology.