An insight into implementing person-centred active support

This paper provides reflections on the implementation of an active support staff training programme for staff working in community residential facilities for adults with an intellectual disability. Outcomes for the people with an intellectual disability were consistent with recent research findings indicating that active support can lead to improved opportunities for participation in everyday activities within the home. We propose that the success of the training programme was largely influenced by three key elements: ensuring that there is expertise in, and support for, this approach to service provision among key service managers, provision of in vivo one-to-one practical staff training in addition to classroom-based theoretical input, and inclusion of elements of person-centred planning approaches in combination with active support. Future research should focus on how best to maximise the effectiveness of active support staff training.

Person-centred information to parents in paediatric oncology (the PIFBO study) : A study protocol of an ongoing RCT

Background: Parents of children with cancer experience a demanding situation and often suffer from psychological problems such as stress. Trying to coping with the complex body of information about their child's disease is one factor that contributes to this stress. The aim of this study is to evaluate an intervention for person-centred information to parents of children with cancer that consists of four sessions with children's nurses trained in the intervention method. Methods/Design: This is a multi-centre RCT with two parallel arms and a 1:1 allocation ratio. The primary outcome is illness-related parental stress. Secondary outcomes are post-traumatic stress symptoms, anxiety, depression, satisfaction with information, expected and received knowledge, and experiences with health care providers. A process evaluation is performed to describe experiences and contextual factors. Data are collected using web questionnaires or paper forms according to the parents' preference, audio recording of the intervention sessions, and qualitative interviews with parents and the intervention nurses. Discussion: Few studies have evaluated information interventions for parents of children with cancer using large multi-centre RCTs. This intervention is designed to be performed by regular staff children's nurses, which will facilitate implementation if the intervention proves to be effective. Trial registration: Clinical trials NCT02332226 (December 11, 2014).

Using a whole person approach to support people with cancer: a longitudinal, mixed methods service evaluation

Introduction: Improved models of care are needed to meet all the support needs of people with cancer, which encompass psychological, emotional, physical, spiritual, sexual, occupational, social and existential needs. The aim of this paper is to (1) evaluate short and long-term impacts of using a whole person approach to support people with cancer on the Living Well with the Impact of Cancer Course (LWC); (2) use these data to inform strategic decisions about future service provision at Penny Brohn UK. Methods: Longitudinal mixed-methods service evaluation (n=135). Data collected included health related quality of life (HRQoL) (FACIT-SpEx); Concerns (types and severity - MYCaW); lifestyle behaviour (bespoke questionnaire) and participants’ experiences over 12 months post course. Results: Statistically and clinically significant improvements from baseline - 12 months in severity of MYCaW Concerns (n=64; p<0.000) and mean total HRQoL (n=66; p<0.000). The majority of MYCaW concerns were ‘psychological and emotional’ and about participants’ wellbeing. Spiritual, emotional and functional wellbeing contributed most to HRQoL improvements at 12 months. Barriers to maintaining healthy lifestyle changes included lack of support from family and friends, time constraints, and returning to work. 3-6 months post-course was identified as the time when more support was most likely to be needed. Conclusions: Using a whole person approach for the LWC enabled the needs of participants to be met, and statistically and clinically significant improvements in HRQoL and MYCaW Concerns were reported. Qualitative data analysis explored how experiencing whole person support enabled participants to make and sustain healthy lifestyle changes associated with improved survivorship. Barriers experienced to making health behaviour change were also identified. These data then informed wider and more person-centred clinical provision to increase the maintenance of positive long-term behaviour changes. Comparison of whole person approaches to cancer treatment and support and standard care are now urgently needed.

Translating person-centered care into practice: a comparative analysis of motivational interviewing, illness-integration support, and guided self-determination

OBJECTIVE: Person-centred care [PCC] can engage people in living well with a chronic condition. However, translating PCC into practice is challenging. We aimed to compare the translational potentials of three approaches: motivational interviewing [MI], illness integration support [IIS] and guided self-determination [GSD]. METHODS: Comparative analysis included eight components: (1) philosophical origin; (2) development in original clinical setting; (3) theoretical underpinnings; (4) overarching goal and supportive processes; (5) general principles, strategies or tools for engaging peoples; (6) health care professionals' background and training; (7) fidelity assessment; (8) reported effects. RESULTS: Although all approaches promoted autonomous motivation, they differed in other ways. Their original settings explain why IIS and GSD strive for life-illness integration, whereas MI focuses on managing ambivalence. IIS and GSD were based on grounded theories, and MI was intuitively developed. All apply processes and strategies to advance professionals' communication skills and engagement; GSD includes context-specific reflection sheets. All offer training programs; MI and GSD include fidelity tools. CONCLUSION: Each approach has a primary application: MI, when ambivalence threatens positive change; IIS, when integrating newly diagnosed chronic conditions; and GSD, when problem solving is difficult, or deadlocked. PRACTICE IMPLICATIONS: Professionals must critically consider the context in their choice of approach.

Tackling disadvantage through student-centred learning - exploring 'Worlds of Work' in the Melbourne CBD

As the educational landscape increasingly mirrors deepening socio-economic cleavages within Australian society, the disparity in educational outcomes has been identified as one of the biggest challenges confronting secondary schooling. In contrast with most OECD countries, family background remains the most important determinant of educational achievement in Australia. More and more, schools are defined by location, reinforcing what has been dubbed the 'circular pattern of disadvantage'. At the same time, recognition of strong links between outcomes, socio economic status and location has elicited growing calls for systematic redefining of learning experiences and the public education framework. Focus on flexible, rigorous, community-oriented, person-centred learning opportunities has predicated multiple mentoring and youth schemes and has guided policy. Recognition of the need to re-engage Year 9 and 10 students underpinned development of VELS, for instance; it has also directed the programming priorities of Education Foundation Australia (EFA). This paper will discuss first, how schools perceive the programs have made a difference to both individual students and the curriculum offered in the schools, and second, how the experiences and activities provided through the program have changed the expectations and aspirations that many of the participants have in regard to how they perceive their future, their engagement with school and their careers. Both City Centre and Worlds of Work (WOW) program have received a very positive student response to real world activities that have demonstrably enhanced the development of reflective processes, interpersonal and social skills and social networks. Practical outcomes have included self-organised work experience, the development of mentor relationships and the re-engagement of some students with the schooling process. Interview data confirmed EFA's assessment that its programs have greatest impact when integrated into a school's curriculum rather than as "stand alone" electives.

End-of-life decision making for older people

This chapter deals with the increasing issues surrounding end-of-life decision making. As the life trajectory for older people changes, the need for open discussion about their health problems and treatment becomes more critical. Acceptance of the ageing process itself is often not easy so the matter of a good death is even more distressing for some people to consider. The vignette provides an excellent discussion on the need for open dialogue with the older person and their families, whether they are acutely ill or have chronic health problems. How a person wishes to be treated when quality of life is not going to improve, no matter what interventions are put in place, seems essential for person-centred care. The issue of competency is one that must be determined before any decision is made by any person involved in care.

“I want to see the Queen” : experiences of service use by ageing people with an intellectual disability

People with intellectual disability are a relatively new but growing minority group within Australia's ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic indivdualised planning similar to the UK concept of person-centred planning.

Implementation and evaluation of a new model of nursing practice in radiation oncology

Patients undergoing radiation therapy for cancer face a series of challenges that require support from a multidisciplinary team which includes radiation oncology nurses. However, the specific contribution of nursing, and the models of care that best support the delivery of nursing interventions in the radiotherapy setting, is not well described. In this case study, the Interaction Model of Client Health Behaviour and the associated principles of person-centred care were incorporated into a new model of care that was implemented in one radiation oncology setting in Brisbane, Australia. The new model of care was operationalised through a Primary Nursing/Collaborative Practice framework. To evaluate the impact of the new model for patients and health professionals, multiple sources of data were collected from patients and clinical staff prior to, during, and 18 months following introduction of the practice redesign. One cohort of patients and clinical staff completed surveys incorporating measures of key outcomes immediately prior to implementation of the model, while a second cohort of patients and clinical staff completed these same surveys 18 months following introduction of the model. In-depth interviews were also conducted with nursing, medical and allied health staff throughout the implementation phase to obtain a more comprehensive account of the processes and outcomes associated with implementing such a model. From the patients’ perspectives, this study demonstrated that, although adverse effects of radiotherapy continue to affect patient well-being, patients continue to be satisfied with nursing care in this specialty, and that they generally reported high levels of functioning despite undergoing a curative course of radiotherapy. From the health professionals’ perspective, there was evidence of attitudinal change by nursing staff within the radiotherapy department which reflected a greater understanding and appreciation of a more person-centred approach to care. Importantly, this case study has also confirmed that a range of factors need to be considered when redesigning nursing practice in the radiotherapy setting, as the challenges associated with changing traditional practices, ensuring multidisciplinary approaches to care, and resourcing a new model were experienced. The findings from this study suggest that the move from a relatively functional approach to a person-centred approach in the radiotherapy setting has contributed to some improvements in the provision of individualised and coordinated patient care. However, this study has also highlighted that primary nursing may be limited in its approach as a framework for patient care unless it is supported by a whole team approach, an appropriate supportive governance model, and sufficient resourcing. Introducing such a model thus requires effective education, preparation and ongoing support for the whole team. The challenges of providing care in the context of complex interdisciplinary relationships have been highlighted by this study. Aspects of this study may assist in planning further nursing interventions for patients undergoing radiotherapy for cancer, and continue to enhance the contribution of the radiation oncology nurse to improved patient outcomes.

Negotiating : experiences of community nurses when contracting with clients

A community nurse is required to have excellent interpersonal, teaching, collaborative and clinical skills in order to develop effective individualised client care contracts. Using a descriptive qualitative design data was collected from two focus groups of fourteen community nurses to explore the issues surrounding negotiating and contracting client care contracts from the perspective of community nurses. Thematic analysis revealed three themes: ‘assessment of needs’, ‘education towards enablement’, and ‘negotiation’. ‘Assessment of needs’ identified that community nurses assess both the client’s requirements for health care as well as the ability of the nurse to provide that care. ‘Education towards enablement’ described that education of the client is a common strategy used by community nurses to establish realistic goals of health care as part of developing an ongoing care plan. The final theme, ‘negotiation’, involved an informed agreement between the client and the community nurse which forms the origin of the care contract that will direct the partnership between the client and the nurse. Of importance for community nurses is that development of successful person-centred care contracts requires skillful negotiation of care that strikes the balance between the needs of the client and the ability of the nurse to meet those needs.