Sion Williams

Editorial The narrative voice of people with dementia

The use of biographical and life-history work has a long and honourable tradition within the practice of dementia care, and Kitwood (1997) himself advocated its adoption as a practical means of articulating and demonstrating person-centred care. Indeed, researchers and practitioners have for some time ‘turned on’ to the utility of narrative approaches in dementia care (Batson, Thorne, & Peak, 2002; Bender, Bauckham, & Norris, 1999; Garland, 1994), yet the underpinning approach has perhaps failed to fully ‘tune in’ to the voice of people living with dementia. From our ongoing narrative and biographical research programme in North Wales, which includes the experience of people with dementia post-diagnosis and their extensive compilation of life-stories (Keady & Williams, 2005; Keady, Williams, & Hughes-Roberts, 2005; Williams & Keady, 2005), we have found that the ‘narrative turn’ provides a method of identifying ‘life patterns’ and understanding that extend beyond personal accounts to demonstrate community experience and meanings (Plummer, 2001). Moreover, a narrative configures an individual’s understanding of self and the construction of identity and has a degree of purpose and unity (MacAdams & Janis, 2004). In this editorial, we will briefly rehearse some of our experiences in applying narrative to dementia care in a research setting, and its dimensional attributes. Narrative identity presents a construction of self that can be understood separately as occurring in the past but also synthesized into the present into a temporally organized whole (MacAdams & Janis, 2004). Both Plummer (2001) and Cole and Knowles (2001) develop life-history research based on the common thread of ‘critical humanism’, and as part of such a humanistic project, Plummer (2001) echoes the dilemma facing researchers in de men tia

Relational practice as the key to ensuring quality care for frail older people: discharge planning as a case example

Discharging frail older people from acute hospital settings has been an issue of concern for over 40 years and recent studies suggest that enduring problems remain. This paper explores the experiences of discharge from three different units: an acute surgical ward, an acute medical ward and a specialist ward for older people. Based on extensive data from interviews with older people, their family carers and ward‐based staff, a grounded theory of the discharge experience is presented. This suggests that the quality of discharge hinges largely on whether the focus of efforts is on ‘pace’ (the desire to discharge older people as rapidly as possible) or ‘complexity’ (where due account is taken of the complex interaction of medical and wider social issues). When pace is the focus, ‘pushing’ and ‘fixing’ are the main processes driving discharge. However, when attention is given to complexity, far more subtle processes of ‘informing’ and ‘brokering’ are in evidence. These latter processes are conceived of as forms of ‘relational practice’ and it is argued that such practices lie at the heart of high quality care for older people.

‘A stony road… a 19 year journey’: ‘Bridging’ through late-stage Parkinson’s disease

Abstract Studies reporting the lived experience of late-stage Parkinson’s disease are sparse. Using constructivist grounded theory and centre-stage storyline generation as the methodological approach, this study reports on 69 interviews with 13 people with late-stage Parkinson’s disease and their family carers who were recruited from the caseload of two specialist Parkinson’s disease nurses working in North Wales and one consultant geriatrician. The interviews were conducted longitudinally between June 2007 and April 2008, and all participants were diagnosed with late-stage idiopathic Parkinson’s disease using Brain Bank clinical criteria. All interviews and the subsequent sharing, modification and testing of the results of data analysis were conducted in the person’s home and with their participation as partners in the research process. From this process, bridging emerged as the centre-stage storyline in adjusting to life with late-stage Parkinson’s disease, and this consisted of three temporal stages, namely: 1) building on the past; 2) bridging the present and 3) broaching the future. These three stages were underpinned by three linked sequential foundations, namely biographical, situational and crumbling. These stages, foundations and properties of bridging have important implications for the understanding of late-stage Parkinson’s disease and informing the nursing role in developing and providing appropriate supportive interventions.

We can’t keep going on like this’: Identifying family storylines in young onset dementia

ABSTRACT In this study, we identify the dominant storylines that were embedded in the narratives of younger people with dementia and their nominated family members. By implementing a longitudinal, narrative design underpinned by biographical methods we generated detailed family biographies with five families during repeated and planned research contacts (N=126) over a 12–15-month period between 2009 and 2010. The application of narrative analysis within and between each family biography resulted in the emergence of five family storyline types that were identified as: agreeing; colluding; conflicting; fabricating; and protecting. Whilst families were likely to use each of these storylines at different points and at different times in their exposure to young onset dementia, it was found that families that adopted a predominantly ‘agreeing’ storyline were more likely to find ways of positively overcoming challenges in their everyday lives. In contrast, families who adopted predominantly ‘conflicting’ and ‘colluding’ storylines were more likely to require help to understand family positions and promote change. The findings suggest that the identification of the most dominant and frequently occurring storylines used by families may help to further understand family experience in young onset dementia and assist in planning supportive services.

Co‐constructed inquiry: a new approach to generating, disseminating and discovering knowledge in qualitative research

Co‐constructed Inquiry has been built in partnership with specialist nurse practitioners, university‐based researchers (with a clinical background in stroke and dementia care) and people living with long‐term conditions. Co‐constructed Inquiry introduces the language of drama and theatre into the theory building and reporting process and consists of three stages: Building the set; Performing the production; and Bringing down the curtain. People with long‐term conditions represent subjective experience through the production of a life story script, a personal theory and, eventually, a collective theory. The personal theory is usually presented as a diagram, or a series of diagrams. Co‐constructed Inquiry sheds new light on participative methods of inquiry and in the development of co‐constructed grounded theory.

Centre stage diagrams: a new method to develop constructivist grounded theory – late-stage Parkinson’s disease as a case exemplar:

A recent advance to the ‘classic’ grounded theory approach of Glaser and Strauss’ seminal work has been the development of constructivist grounded theory. While constructivist grounded theory has significant utility, centre stage diagrams were developed by the authors to help integrate ‘storied meaning’ and diagramming into a method of data collection, analysis and theory development/presentation. Centre stage diagrams are co-constructed by the researcher and participant and use the participant’s own life course, language and conceptual visualization of their subjective experience and are created over prolonged engagement. Centre stage diagrams are reached by the researcher and participant mutually engaged and interacting with two inter-related questions: i) what is the centre stage storyline in the lived representation of the phenomenon under study? and ii) who is centre stage in that lived experience? Our work in late-stage Parkinson’s disease is used to illustrate this approach to theory building and generating constructivist grounded theory. Centre stage diagrams have potential for development as a practice tool and/or as an independent research method.

Facilitating educational leadership: using frames to increase action

Purpose – The purpose of this paper is to present findings from a study that illuminates how leadership can be engendered in one context and transferred to another.Design/methodology/approach – This paper presents some of the findings from a longitudinal study on individual and organisational learning from adverse incidents, action research was the overarching methodology. The study (fourth in a total of six) was developed out of and embedded within a series of action research cycles. The study is presented in two phases (interviews and field observation); the approach incorporates Goffmans frame analysis to identify whether espoused aspects of educational leadership would manifest if given the opportunity, and whether the principles of Bordieuan “values” placed by the participants on educational leadership would be a useful lever to support change.Findings – The study findings demonstrated educational leadership can be inculcated and actioned by creating real life frames and reinforced through associati...

The study protocol of: 'initiating end of life care in stroke: clinical decision-making around prognosis'

BackgroundThe initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population.Methods/designThis two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage.DiscussionThis study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

From blaming to learning: re‐framing organisational learning from adverse incidents

Purpose – This paper aims to discuss and present research findings from a proof of concept pilot, set up to test whether a teaching intervention which incorporated a dual reporting and learning approach from adverse incidents, could contribute towards individual and organisational approaches to patient safety.Design/methodology/approach – The study formed part of a series of six iterative action research cycles involving the collaboration of students (all National Health Service (NHS) staff) in the co‐creation of knowledge and materials relating to understanding and learning from adverse incidents. This fifth qualitative study involved (n=20) anaesthetists who participated in a two phase teaching intervention (n=20 first phase, n=10 second phase) which was premised on transformative learning, value placed on learning from adverse incidents and reframing the learning experience.Findings – An evaluation of the teaching intervention demonstrated that how students learned from adverse incidents, in addition t...

Arts-based palliative care training, education and staff development: A scoping review

Background: The experience of art offers an emerging field in healthcare staff development, much of which is appropriate to the practice of palliative care. The workings of aesthetic learning interventions such as interactive theatre in relation to palliative and end-of-life care staff development programmes are widely uncharted. Aim: To investigate the use of aesthetic learning interventions used in palliative and end-of-life care staff development programmes. Design: Scoping review. Data sources: Published literature from 1997 to 2015, MEDLINE, CINAHL and Applied Social Sciences Index and Abstracts, key journals and citation tracking. Results: The review included 138 studies containing 60 types of art. Studies explored palliative care scenarios from a safe distance. Learning from art as experience involved the amalgamation of action, emotion and meaning. Art forms were used to transport healthcare professionals into an aesthetic learning experience that could be reflected in the lived experience of healthcare practice. The proposed learning included the development of practical and technical skills; empathy and compassion; awareness of self; awareness of others and the wider narrative of illness; and personal development. Conclusion: Aesthetic learning interventions might be helpful in the delivery of palliative care staff development programmes by offering another dimension to the learning experience. As researchers continue to find solutions to understanding the efficacy of such interventions, we argue that evaluating the contextual factors, including the interplay between the experience of the programme and its impact on the healthcare professional, will help identify how the programmes work and thus how they can contribute to improvements in palliative care.