Range Of Care Research Articles

A social work contribution in end-of-life care: incorporating critical spirituality.

This article outlines how a framework for critical spirituality incorporated into a social work perspective, can contribute to work in end-of-life care. This is based on my experience of working in interdisciplinary teams, including pastoral care workers or chaplains, nurses, doctors, a range of carers and other allied health professionals. Traditionally, social workers have focused on the holistic well-being of the dying person and their families but tended not to actively include the spiritual. However, there is increased recognition in social work of the value of integrating critical spirituality: understanding the person's own sense of meaning and the social assumptions that might influence how this can be expressed. This might mean working with individuals and families on understanding how societal expectations of the dying process are undermining the person's desire to die in a particular way. To do this, workers must themselves recognise their own internalised societal assumptions and be willing to challenge these. The article explores the potential value of how such a social work approach can integrate critical, postmodern, green and relational theories as well as indigenous worldviews with key qualities of practice such as humility, deep listening and waiting, and the ability to be critically reflective. Key ideas are used to help focus practice and the inclusion of critical spirituality. These include (1) exploring the influence of the person's history and social context; (2) the value of particular relationships and networks, including community and environmental connections and activities and processes that are an intrinsic aspect of the person's well-being; (3) challenging workers to be critically and reflectively aware of their own assumptions and values to ensure the dying person can truly express their preferences related to death and dying. Examples from my experience are used to illuminate how such perspectives can be actively included in practice across professional boundaries to shift perceptions of 'how things are done here' to what can be more life enhancing for those in palliative care.

It takes a village to raise a child: everyday experiences of living with extended family in Namibia

The family is the fundamental group of society and the natural environment for the growth and well-being of children. The Namibian Constitution protects the family, without specifying what �family� means�which allows for legal concepts of family to evolve to fit social realities. The caring for children, most commonly by extended family or kinship carers is widespread and a practice acceptable in most Namibian cultures in the spirit of Ubuntu. This article foregrounds the importance of carer-child relationships in the care provided by extended family for children who do not live with their birth parents. It further investigates children�s everyday understandings of what family means to offer a multiplicity of experiences of child fosterage practice. These are presented from a range of carers and children within the fosterage context and considered within children�s unique and positive relationships within their families.

A logic model of the implementation of a regional workforce strategy in positive behavioural support

Purpose Positive behavioural support (PBS) as a framework for delivering quality services is recognised in important policy documents (CQC, 2020; NICE, 2018), yet there is an absence in the literature on how this could be implemented on a large scale. The purpose of this paper is to describe a recent implementation of a workforce strategy to develop PBS across social care and health staff and family carers, within the footprint of a large integrated care system. Design/methodology/approach A logic model describes how an initial scoping exercise led to the production of a regional workforce strategy based on the PBS Competence Framework (2015). It shows how the creation of a regional steering group was able to coordinate important developmental stages and integrate multiple agencies into a single strategy to implement teaching and education in PBS. It describes the number of people who received teaching and education in PBS and the regional impact of the project in promoting cultural change within services. Findings This paper demonstrates a proof of concept that it is possible to translate the PBS Competency Framework (2015) into accredited courses. Initial scoping work highlighted the ineffectiveness of traditional training in PBS. Using blended learning and competency-based supervision and assessment, it was possible to create a new way to promote large-scale service developments in PBS supported by the governance of a new organisational structure. This also included family training delivered by family trainers. This builds on the ideas by Denne et al. (2020) that many of the necessary building blocks of implementation already exist within a system. Social implications A co-ordinated teaching and education strategy in PBS may help a wide range of carers to become more effective in supporting the people they care for. Originality/value This is the first attempt to describe the implementation of a framework for PBS within a defined geographical location. It describes the collaboration of health and social care planners and a local university to create a suite of courses built around the PBS coalition competency framework.

An approach to the design of internet delivered services for those near the end of life

Introduction: For people near the end of life, as well as those who look after them, the coordination of care and support services is vital. The ongoing work of the Leadership Alliance for the Care of Dying People has begun to identify key themes that are central to the provision of high quality care for this group within Society. There is an emphasis in these and many other policy documents on the role that technology enabled care should play in this regard. This abstract describes one approach to the development of such a system, focused on the identified needs of those with life limiting illnesses. Aims and Objectives: To use a structured approach to define the needs of people near the end of life and their lay and professional carers. To translate these into a scalable, secure electronic service offering. Results: Focus groups were used to capture the views of patients, lay and professional carers. 120 people took part in these events, which to reduce bias were held at a total of 6 locations across England. Service users, individuals with life limiting illness of varying types (malignant and non-malignant disease), were all currently within a hospice care (out patient) environment; lay carers were either currently or previously in a carer role and professional carers were working for a hospice charity. Individual comments regarding previous or current experience of care, gaps in care and opportunities for improvement were captured verbatim for subsequent analysis. Comments made were reviewed by multiple assessors to identify the underlying need being expressed. These “needs” were resolved into a total of 13 core “themes” that drove the design of the electronic solution. The three most prevalent themes were the need to instil a true “service” orientation to healthcare services, the need to use digital services to engage a wider range of carers than is normally seen to be the case, including those with lay and professional backgrounds and the need to listen to signals from the patient and customise the care response to their expressed needs. There was universal recognition of the benefit seen following engagement with hospice services and an equally clear description of the size of the gap between this and “standard” care. A prescribable, personalised digital healthcare delivery platform was designed in responding to the identified service requirements and the resulting prototype was reviewed by International Journal of Integrated Care – Volume 14, 01 November – URN:NBN:NL:UI:10-1-116561– http://www.ijic.org/ International Digital Health and Care Congress, The King’s Fund, London, September 10-12 2014. service users and carers prior to initiating a formal solution build phase. The product is being made available across three geographical locations for in-service evaluation. Conclusions: A digital services solution has been designed in response to the formally captured needs of those requiring end of life support and their carers. This will be subjected to limited roll out and independent evaluation over the coming year. This work was supported by a grant from the SBRI, administered by Health Enterprise East.

Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT)

Meaningful communication with people with profound communication difficulties depends on the ability of carers to recognize and translate many different verbal cues. Carers appear to be intuitively skilled at identifying distress cues, but have little confidence in their observations. To help in this process, a number of pain tools have been developed, but this sits uncomfortably with the lack of evidence that pain has any specific signs or behaviours. A palliative care team working with people with intellectual disabilities developed the Disability Distress Assessment Tool (DisDAT) to document a wide range of signs and behaviours of distress and when an individual is content. The tool was piloted with 16 carers and 8 patients. It was then assessed using quantitative and qualitative methods, employing 56 carers in routine clinical situations with 25 patients, most with severe communication difficulties. Carers of 10 patients participated in semi-structured interviews exploring the signs and behaviours demonstrated by patients when distressed and when content. These same 10 patients were observed for distress cues during different activities. It became clear that distress did not have a common meaning among carers, but there was a clear understanding that distress did not just cover physical pain. The range of distress cues was wide, with no evidence that any cues were specific to particular causes. Although some distress cues were common between patients, each patient had a distinct pattern of distress cues. In addition, different carers identified a different range of distress cues, while the length of the relationship did not influence the number of cues identified. Most distress cues were a change from the norm, but some patients demonstrated distress as an absence of content cues. Carers found the DisDAT simple to use and useful, and several felt that DisDAT would have helped advocate for the patients in previous conflicts with clinical teams. There was no evidence that pain has any specific signs or behaviours. The preliminary and assessment phases showed that distress was a useful clinical construct in providing care. The DisDAT reflected patients' distress communication identified by a range of carers, and provided carers with evidence for their intuitive observations of distress.

Multidisciplinary Quality Assessment: The Case of a Child Development Team, Part 3

This to the third and final part of a series of articles reporting research which focused on the increasing attention being paid to measuring the quality of health service provision. The series addresses the problem of how quality can be measured across a multidisciplinary service and uses a district child development team as an example of such a service. In part 3, the findings of the interviews with a range of carers of children with varying diagnoses attending the child development centre are explored in detail, again using the structure-process-outcome framework suggested by Donabedian and outlined in the first article of the series. Conclusions are drawn from the research and suggestions made for areas requiring further investigation.