Reframing dementia: Nursing students' relational learning with rather than about people with dementia. A constructivist grounded theory study

Abstract Objectives Developing an informed and effective workforce that provides effective and ethical care to people with dementia and their families is an international priority. Here we explore the impact of a novel approach on students of adult nursing. It involved engagement with people with dementia and their carers over 3 years in the Time for Dementia Programme. This research explored students' perceptions of their professional learning and practice. Methods A longitudinal, constructivist grounded theory approach in three phases (3 years) was used. In‐depth interviews were conducted with 12 students of adult nursing following visits with older adults with dementia and their carers in their own homes at 12 months, 24 months and at 36 months. A constant comparative analysis of transcribed interviews was completed. Results A new theory of Whole Sight was identified as representing the impact of the learning that occurred as a consequence of relational learning visits. The core category of New Ways of Seeing dementia represented a broadening of students' views of dementia that encompassed the person's lives and relationships. This led to a person‐centred shift in students' practice. The data suggest that Time for Dementia can help students to be active in their contribution to care and serve as change agents in transforming dementia care. Conclusions The theory of Whole Sight that emerged is a novel and useful contribution to the evidence on community‐based educational initiatives. Visiting people with dementia and their carers at home in training can help develop a workforce that meets their needs.


| INTRODUCTION
Dementia is a global phenomenon affecting 46.8 million people worldwide and the care of people with dementia is a global concern. 1-4 The World Health Organisation 5 has identified the development of the knowledge and skills of healthcare professionals in dementia as a priority. Collier et al. 6 assert that high quality dementia education must underpin this ambition. Martin, O'Connor and Jackson's 4 scoping review of gaps and priorities in dementia care in Europe, highlighted a critical need to empower staff in dementia care, arguing that lack of confidence is often associated with dehumanising care in practice. In the United Kingdom (UK), the National Dementia Strategy for England 7 identified deficiencies in dementia skills and knowledge by healthcare professionals. Subsequent analyses of education and training by the Department of Health and Skills for Care 8 highlighted that the most significant gap to address was the lack of dementia education at the early stages of student education. This view is supported by more recent reports that health and social care professionals, once qualified, do not feel adequately prepared to care for people with dementia. [9][10][11] Around the world, pre-registration education programmes for nurse's anchor and set the standards for the future quality of healthcare provision by determining the knowledge, attitudes and competencies required to support people with dementia and their carers, and their value and priority. 2 However, inconsistencies and gaps in professional dementia education have been highlighted internationally. 6,12,13 Surr et al. 13 identified that there appears to be little support or provision for regulation or quality monitoring of dementia education. There are unanswered questions about how to enable healthcare education to engage with the new and growing challenges posed by dementia. As Willis 14 argues: The education of our nursing and care workforce over the next ten years will determine the strength of our healthcare system for decades. Here we report the results of a qualitative study which aimed to generate an understanding of the impact on the knowledge and practice of students of adult nursing of the longitudinal visiting of people living with dementia and their carers that is the core of Time for Dementia.

| Design
This was a longitudinal qualitative study with three data collection points that followed 12 undergraduate students of adult nursing.
Data were collected during face-to-face interviews (n ¼ 28).
A constructivist grounded theory approach was adopted for this study to ensure that student nurse participants were key players in shaping the findings of the study. 16 The study involved successive interviews with students visiting the same person and their carer over time and with the progression of the illness. The longitudinal phases and data analysis of the study are summarised in

| Ethical considerations
The study was reviewed and granted ethical approval by the University Ethics Committee of a university in the south of England.

| Sample and setting
Students of adult nursing were recruited from participants of the Time for Dementia programme at a university in the south of England.
Charmaz 17 suggests approximately 25 interviews is sufficient for a medium sized study, supported by Stern 18 who advocates that 20-30 h of observations are often enough to reach saturation. As the study utilised multiple longitudinal interviews with the same participants over 3 years 12 participants were recruited.

| Procedure
The study was conducted over 3 years with each phase of data collected over approximately 12-month intervals. Interviews were carried out annually between November 2014 and July 2017 and lasted 60 min. All interviews were audio-recorded, transcribed verbatim and checked for accuracy. Returning several times through follow up interviews at Phase 2 and 3 was congruent with a constructivist approach to try to capture participants' evolving experiences. 19,20-22

| Data analysis
Because grounded theory is not a linear process, collection of data, analysis and development of theories occurred simultaneously.
Coding of data was undertaken as suggested by Charmaz 23,24 in two phases: initial and focused coding. An inductive rather than deductive approach to collection of data and analysis was used to ensure that the experiences of the students remained central to the development of a new theory for understanding the impact of visits.
All transcripts were analysed using grounded theory techniques which identified patterns of meaning. The use of participants' own language, as advocated by Elliott and Jordan, 22 during the early stages of analysis was used to assist the robustness of concepts that emerged. Transcripts were coded using constant comparison techniques, which involved reviewing coding and data between existing and new transcripts to: (i) identify new codes; (ii) check the use of codes for consistency and (iii) explore relationships between different codes. Core conceptual categories were developed through repeatedly moving back and forth between the data categories as suggested by Charmaz,24 to refine our understanding of emerging themes to produce a final conceptual model.

| Participants and interviews
Twelve undergraduate students of adult nursing were approached for interview at 3 yearly time points, 28 interviews were completed.
The impact of using sequential interviews with the same participants added depth and resonance to participants' stories, helping to produce a fuller narrative. The approach used meant that emerging categories in each subsequent phase could be followed up. A summary of participants' profiles can be found in Table 1.

| Adaptive thinking
Growing awareness of observing the abilities of the person with dementia rather than their disabilities, appeared to challenge par- Participants demonstrated perspective-taking throughout their visits, discussing how they could imagine themselves in their shoes.
Instead of viewing people with dementia as a homogenous group, participants began to see the person as an individual rather than just their dementia. -563 students and the theory generated. A strength of this study is that it used an inductive rather than deductive approach to data collection and analysis. This made the experiences of student participants' central to the development of a theory for understanding the impact of involving people with dementia and their carers in education. A further limitation is that students were a group willing to participate in the research. However, they made their choice at the beginning of the programme and the interviews covered their experiences prospectively, so we did not only sample those with a positive experience. A final limitation is that although people with dementia helped to inform this study through their involvement with the wider steering group they had no other involvement in this study.