Neonatal palliative care attitude scale : development of an instrument to measure the barriers to and facilitators of palliative care in neonatal nursing

OBJECTIVE The aim of this research project was to obtain an understanding of the barriers to and facilitators of providing palliative care in neonatal nursing. This article reports the first phase of this research: to develop and administer an instrument to measure the attitudes of neonatal nurses to palliative care. METHODS The instrument developed for this research (the Neonatal Palliative Care Attitude Scale) underwent face and content validity testing with an expert panel and was pilot tested to establish temporal stability. It was then administered to a population sample of 1285 neonatal nurses in Australian NICUs, with a response rate of 50% (N 645). Exploratory factor-analysis techniques were conducted to identify scales and subscales of the instrument. RESULTS Data-reduction techniques using principal components analysis were used. Using the criteria of eigenvalues being 1, the items in the Neonatal Palliative Care Attitude Scale extracted 6 factors, which accounted for 48.1% of the variance among the items. By further examining the questions within each factor and the Cronbach’s of items loading on each factor, factors were accepted or rejected. This resulted in acceptance of 3 factors indicating the barriers to and facilitators of palliative care practice. The constructs represented by these factors indicated barriers to and facilitators of palliative care practice relating to (1) the organization in which the nurse practices, (2) the available resources to support a palliative model of care, and (3) the technological imperatives and parental demands. CONCLUSIONS The subscales identified by this analysis identified items that measured both barriers to and facilitators of palliative care practice in neonatal nursing. While establishing preliminary reliability of the instrument by using exploratory factor-analysis techniques, further testing of this instrument with different samples of neonatal nurses is necessary using a confirmatory factor-analysis approach.

Using videotelephony to support paediatric oncology-related palliative care in the home : from abandoned RCT to acceptability study

Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment), designed to investigate the use of videotelephony with families receiving palliative care from a tertiary paediatric oncology service in Brisbane, Australia. To investigate whether providing videotelephone-based support was acceptable to these families, a 12-month non-randomised acceptability trial was completed. Seventeen palliative care families were offered access to a videotelephone support service in addition to the 24 hours ‘on-call’ service already offered. A 92% participation rate in this study provided some reassurance that the use of videotelephones themselves was not a factor in poor RCT participation rates. The next phase of research is to investigate the integration of videotelephone-based support from the time of diagnosis, through outpatient care and support, and for palliative care rather than for palliative care in isolation

The Impact of Experiential Learning in Enhancing Palliative Care Knowledge and Skills among Nurses

Nurses working in community settings are increasingly required to care for people with chronic, life limiting conditions. Innovative educational programs are required to ensure nurses are equipped to deal with this challenging area of practice. The Program of Experience in the Palliative Approach (PEPA) started in 2003 as an initiative of the Australian Government, Department of Health and Ageing. The overall aim of PEPA is to improve the quality, availability and access to palliative care for people who are dying, and their families, by improving the skills and expertise of health practitioners, and enhancing collaboration between primary and specialist palliative care services. PEPA provides nurses with an opportunity to develop knowledge and skills in the palliative approach to care through funded clinical workforce placements or workshops.

Factors influencing oncology nurses' approaches to accommodating cultural needs in palliative care

Aims and objectives: The purpose of this study is to explore the social construction of cultural issues in palliative care amongst oncology nurses. ---------- Background: Australia is a nation composed of people from different cultural origins with diverse linguistic, spiritual, religious and social backgrounds. The challenge of working with an increasingly culturally diverse population is a common theme expressed by many healthcare professionals from a variety of countries. ---------- Design: Grounded theory was used to investigate the processes by which nurses provide nursing care to cancer patients from diverse cultural backgrounds. ---------- Methods: Semi-structured interviews with seven Australian oncology nurses provided the data for the study; the data was analysed using grounded theory data analysis techniques. ---------- Results: The core category emerging from the study was that of accommodating cultural needs. This paper focuses on describing the series of subcategories that were identified as factors which could influence the process by which nurses would accommodate cultural needs. These factors included nurses' views and understandings of culture and cultural mores, their philosophy of cultural care, nurses' previous experiences with people from other cultures and organisational approaches to culture and cultural care. ---------- Conclusions: This study demonstrated that previous experiences with people from other cultures and organisational approaches to culture and cultural care often influenced nurses' views and understandings of culture and cultural mores and their beliefs, attitudes and behaviours in providing cultural care. ---------- Relevance to clinical practice: It is imperative to appreciate how nurses' experiences with people from other cultures can be recognised and built upon or, if necessary, challenged. Furthermore, nurses' cultural competence and experiences with people from other cultures need to be further investigated in clinical practice.

Accommodating the diverse cultural needs of cancer patients and their families in palliative care

Cultural issues have become an increasingly important consideration in healthcare. Such cultural issues, however, are underresearched in Australia, especially in palliative care. This study has sought to address this gap, exploring the social construction of cultural issues in palliative care by oncology nurses. A grounded theory approach was used. Semistructured interviews with 7 Australian oncology nurses provided the data for the study. The core category emerging from the study was that of accommodating cultural needs whereby to meet patients' specific cultural requirements, nurses actively found ways to accommodate the needs of patients and their families. This process often included compromise and negotiation whereby limits were set. In addition, the use of cross-cultural communication strategies emerged from the data as an important feature of cultural care. A series of subcategories were also identified as factors that could influence the process by which nurses would accommodate cultural needs.

Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. The findings from the analysis of 721 services’ records from three Australian states, and feedback from health professionals in interviews and postal surveys, demonstrated that there were aspects of being on one’s own with a terminal illness and living at home that require a specialised approach and support. This study explored the issues of palliative care patients living alone, from a service provider perspective, and provided evidence-based information to assist with service planning. The study made recommendations to the Australian Department of Health and Ageing about services considered important in developing support structures for this growing population.

Therapeutic relationships in specialist palliative care nursing practice.

There has been limited research into the scope or standards of specialist palliative care nursing practice in an Australian context. This study sought to develop a competency framework that described the core domains of specialist palliative care nursing. This article explores one key domain of specialist palliative care nursing practice - therapeutic relationships - that was identified as underpinning other domains of practice. A mixed method was used, involving a literature review, a survey including practice exemplars and an interview of specialist palliative care nurses. Seventy-four registered nurses working in designated specialist palliative care nursing roles from each Australian state and mainland territory were involved. The nurses represented metropolitan, regional, rural and remote communities, various inpatient facilities and community practice settings. Five core domains of specialist palliative care nursing practice were identified: complex supportive care, collaborative practice, leadership, improving practice and therapeutic relationships. Therapeutic relationships were identified as the central domain of specialist palliative care nursing practice to which all other domains were inextricably linked.

Developing the Primary Palliative Care Workforce in Australia

Current healthcare models promote the equitable provision of palliative care to oncology patients with advancing disease, in the setting of their usual care, often in conjunction with anti-cancer therapies. This has resulted in specialist cancer services, as well as primary care across metropolitan, rural and remote communities, being called upon to integrate palliative care principles into their practice. To meet this increased demand for skilled health care professionals several national strategies have been initiated over the last five years. In this paper two projects are discussed in detail: the Palliative Care Curriculum for Undergraduates and the Program of Experience in the Professional Approach.

Health promotion in palliative care : the case for conceptual congruence

This article provides a critical review of the literature relevant to the conceptual foundations of health promoting palliative care. It explores the separate emergence and evolution of palliative care and health promotion as distinct concerns in health care, and reviews the early considerations given to their potential convergence. Finally, this article examines the proposal of health promoting palliative care as a specific approach to providing end of life care through a social model of palliative care. Research is needed to explore the impact for communities, health care services and policy when such an approach is implemented within palliative care organisations.

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.

Palliative care curriculum for speech–language pathology students

This paper reports on the experience of undergraduate speech–language pathology students at one university chosen for the implementation stage of the Palliative Care Curriculum for Undergraduates (PCC4U) Project. Funded by a government department for health and ageing through a national palliative care programme, the project was managed by a team of researchers from the discipline of nursing. The PCC4U project championed the inclusion of palliative care education as an integral part of medical, nursing, and allied healthcare undergraduate training. Of the pilot sites chosen for the PCC4U project, only one site, reported here, included both speech–language pathology and social work disciplines, providing an important opportunity for interdisciplinary collaboration on novel curriculum development in an area of mutual interest. This synergy served as an excellent foundation for ongoing opportunities for interdisciplinary teaching and learning in the university. Speech–language pathology students reported that the project was an invaluable addition to their education and preparation for clinical practice.