Bolivian health and social care professionals' experiences of decision-making in oncology and palliative care

In the UK, end-of-life care strategies recommend patients and families are involved in decision making around treatment and care. In Bolivia, such strategies do not exist, and access to oncology services depends on finance, geography, education and culture. Compared to more developed countries, the delivery of oncology services in Latin America may result in a higher percentage of patients presenting with advanced incurable disease. The objective of this study was to explore decision-making experiences of health and social care professionals who cared for oncology and palliative care patients attending the Instituto Oncológico Nacional, Cochabamba (Bolivia). Patients were predominantly from the Quechua tradition, which has its own ethnic diversity, linguistic distinctions and economic systems. Qualitative data were collected during focus groups. Data analysis was conducted using Interpretative Phenomenological Analysis. Three interrelated themes emerged: (i) making sense of structures of experience and relationality; (ii) frustration with the system; and (iii) the challenges of promoting shared decision making. The study uncovered participants' lived experiences, emotions and perceptions of providing care for Quechua patients. There was evidence of structural inequalities, the marginalisation of Quechua patients and areas of concern that social workers might well be equipped to respond to, such as accessing finances for treatment/care, education and alleviating psychological or spiritual suffering.

Testing a model for developing, implementing and evaluating a strategy to improve the quality of nursing and midwifery care in an acute hospital trust.

Abstract:
Background: Health care organisations
worldwide are faced with the need to develop
and implement strategic organisational plans
to meet the challenges of modern health care.
There is a need for models for developing, implementing and evaluating strategic plans that engage practitioners, and make a measurable difference to the patients that they serve. These presentations describe the development, implementation and evaluation of such a model by a team of senior nurses and practice developers, to underpin a strategy for nursing and midwifery in an acute hospital trust. Developing a Strategy The PARIHS (Promoting Action on Research Implementation in Health Services) conceptual framework (Kitson et al, 1998) proposes that successful implementation of change in practice is a function of the interplay of three core elements: the level of evidence supporting the proposed change; the context or environment in which the change takes place, and the way in which change is facilitated. We chose to draw on this framework to develop our strategy and implementation plan (O’Halloran, Martin and Connolly, 2005). At the centre of the plan are ward managers. These professionals provide leadership for the majority of staff in the trust and so were seen to be a key group in the implementation process.

Participatory Action Research with and within community activist groups: capturing the collective experience of Ireland's Community and Voluntary Pillar

The inclusion of community activists in policy planning is increasingly recognized at the highest international level. This article shows how the use of Participatory Action Research (PAR) can present a deeper and more holistic picture of the experiences of Civil Society Organizations (CSOs) in shaping national-level social policy. By utilizing action-based research, the Community and Voluntary Pillar (CVP) of Ireland’s system of social partnership is shown to be an important agent in deliberating national bargaining outcomes (known as the Towards 2016 national agreement). The key contribution of this research is the reflective methodological considerations in terms of PAR design, execution and participant integration in the research process as a way to enrich and develop a deeper and more informed community of practice.

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods
A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results
Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions
This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

The participation of disabled children, young people and their parents in health and social care. Implications for policy and practice

No abstract available