Student projects

Denise De Waal, supervised by Prof Murna Downs and Professor Neil Small, graduated in 2018

Abstract

Most people with dementia live in the community with a family member, commonly a spouse. Together they engage in identity redefinition to maintain continuity. Many people living with dementia also have co-morbidities. The aim of this study was to provide a better understanding of the influence of co-morbidities on the lived experience of couples and to provide knowledge to improve services. This had not been researched before. Drawing on the dialectic relationship between the body, habitus, environment and common sense from Bourdieu’s theory of practice (1977; 1990) combined with identity theory as described by Burke and Stetts (2009) I conducted an ethnographic study with five couples over a six-month period. The resulting data were analysed using a framework approach and are presented using case studies to illustrate key points. Drawing up on the data I developed an identity perspective which provides a better understanding of these couples’ daily life experiences taking into consideration the contextuality of people’s multiple identities, experiences, care and support needs and their interaction with the environment and community. My findings illustrate how people with dementia and co-morbidities and their spouses negotiate their identity in daily life in order to continue their daily life routine and cope with health conditions. Furthermore, these identity negotiations influence the acceptance of the diagnoses of dementia, the access to care, services and information and the experience of dementia, stigma and co-morbidities in daily life. Implications include a presentation of the limitations of current concepts of embodied selfhood and the Aging in Place policy for people with dementia. It points to the potential of the identity perspective to shape policy, services and care practice consistent with couples’ lived experience and their needs and preferences.

Courtney Genge, supervised by Prof Gerry Armitage and Dr Andrea Capstick, graduated in 2018

Abstract

This project provides the first comprehensive investigation into the experiences of people with dementia (PWD), their carers, and the staff who provide care in emergency departments (ED) in the UK. This is a mixed methods study which used a national survey (N=403) followed by ED observation (32 hours) and qualitative interviews with health professionals (N=29), in an iterative and sequential design to present a holistic evaluation of the current experiences of the key parties- patients, carers, and ED staff involved in receiving and providing care. The theoretical perspective of the Human Factors Approach to patient safety underpins this work. The project included people with dementia and carers as collaborators and co-designers in both the development of the research tools and in shaping the project outputs. This research explores the barriers and facilitators to safe and effective care, concluding that here are a number of barriers (poor integration of communication systems, inappropriate physical environments, misalignment of staff training and workplace staffing models), which may affect the healthcare team’s ability to provide effective dementia care. These systemic challenges both give rise to and exacerbate poor organisational and safety cultures. However, despite these challenges, there are examples of safe and effective care (positive deviants) where uncommonly good outcomes for this patient population are achieved. Examining these examples offers valuable insight into potential adaptions, which could be used to improve existing care.

Lindsey Collins, 2020

Abstract

To follow.

Wendy Andrusjak

Aims of the project

• Identify and describe existing best practice from the evidence and knowledge base
• Determine the extent of adherence to best practice in care homes across England
• Explore the experience of ear and eye care in care home staff, residents and family members
• Identify an intervention to improve current practice

Suzanne Hill, 2020

Abstract

To follow.

Kirsty Haunch, 2018

Abstract

‘Making the most of time’: A Grounded Theory to explain what
facilitates nursing home staff to connect with residents living with
advanced dementia

Keywords: advanced dementia, care home, nursing home, social isolation,
connecting, interacting, social exclusion, staff, nurses, care assistants,

Background:

People living with advanced dementia in nursing homes often
spend the majority of time alone, with little contact with anyone. The need to
connect with others is a central part of a philosophy known as Person
Centred Dementia Care. A significant body of literature demonstrates the
effectiveness of a range of approaches that facilitate connections, yet, we
know little about staff perspectives on what facilitates them to connect on a
daily basis.

Aim: To develop a Grounded Theory to explain what facilitates nursing home
staff to connect with residents living with advanced dementia.
Methods: Semi structured interviews were conducted with nursing home
staff (n=21) and relatives (n=5) from seven nursing homes. Following
Strauss and Corbin’s (1990, 1998) Interpretivist Grounded Theory
methodology, data collection and analysis proceeded iteratively, and
theoretical sampling was used to develop the emergent theory.
Results: The Grounded Theory ‘making the most of time’ explains that most
connections occurred during personal care. Interdependent contextual and
individual factors facilitated staff to make the most of time. Effective leaders
were described to create a caring culture in which informal leaders
(experienced staff) acted as role models. Staff were then more likely to
understand, accept and tolerate dementia, know connections were part of
their role, get to know residents and express caring values. In the right
ii
physical environment, this then facilitated staff to make the most of time
during personal care. Increased training and education from specialised
dementia units and experiential knowledge from family engagement then
supplement such contexts
Implications:

Future research could empirically test the theory ‘making the
most of time’ 

Analisa Smythe, 2018

Abstract

Background: There is significant concern about nurse burnout in nursing homes. There has been little research to investigate whether training in person-centred care and supervision can reduce nursing home nurses’ burnout.

Aims: To adapt training to be suitable for nursing home nurses and evaluate the impact of training and supervision on burnout and related outcomes.

Study Design: Focus groups with nursing home nurses were used to inform adaptation of the training. Mixed methods were used to evaluate the impact of training and supervision employing a convergent parallel design, including a Randomised Controlled Trial with quantitative measures (primary outcome measure: the Maslach Burnout Inventory) to assess effectiveness and exploration of subjective experience using qualitative interviews. The findings of the RCT and qualitative interviews were then compared to determine the convergences and divergences.

Findings: The training was adapted to include content on leadership and stress management. Hypotheses that the interventions would reduce burnout and impact on other quantitative outcomes were not supported. Qualitative interviews with nursing home nurses about training indicated that the nurses reported reduced burnout, enhanced self-efficacy, reduced isolation, better team working, more informed person centred dementia care and enhanced leadership. Nurses’ views on the impact of supervision included a range of benefits. There was convergence between quantitative measurement and subjective experience indicting significant levels of burnout, but divergence in terms of the impact of training in person-centred care and supervision.

Conclusions: My study demonstrates that burnout is a significant issue for nursing home nurses in the UK. There was divergence in my findings in terms of the impact of training in person-centred care and supervision. The hypotheses about training and supervision having positive impact on burn-out were rejected. However, the qualitative findings suggest that nursing home nurses experienced positive benefits from the person-centred training and supervision, in particular on their sense of burnout, their approach to care and leadership skills. Recommendations are made regarding research, training and policy to address burnout in nursing home nurses.

Laura Green, 2017

Abstract

The alleviation of suffering lies at the core of compassionate end-of-life care, yet little is known about the lived experience of suffering. Motivated by a series of reports on poor care of older people in hospital, this study addresses suffering in older people at the end of life in an acute hospital ward in the United Kingdom. Methods were developed from a synthesis of ethnographic fieldwork and phenomenological interpretation. Data were collected using participant observation on an acute care ward for older people in a hospital in Northern England, over 186 hours between June and August 2015. Data included field notes, documents, photographs and informal interviewing. Staff and patient participants were identified using theoretical sampling. Data were analysed using a hermeneutic approach involving a continuous process of analysis, further data collection, posing of problems and questions, and interpretation. This cyclical approach to the data enabled the development of interpretive perspectives which could then be further explored in the field. Findings suggested that care for older people was shaped by competing ideologies of care and organisational regulatory processes. Particularly when there was ambiguity regarding prognosis, there was a tendency for care to default to a ‘rescuing’ acute care model. Through exploring the experiences of individual patients and placing these in the context of cultures of care, I suggest that iatrogenic suffering was a significant concern that often went unrecognised. Patient-centred goals must be more focused upon avoidance of iatrogenic suffering. Recommendations include innovations in clinical education and multiprofessional working.

Jenny La Fontaine, 2016

Abstract

Background: Dementia presents challenges for whole families requiring on-going adaptation. Family relationships provide important benefits, thus understanding the impact of dementia for families is critical to facilitating their wellbeing. Behavioural variant Frontotemporal Dementia (bvFTD) brings specific challenges for relationships, however little is understood about how these are experienced or how families adjust.

Aims: This research sought to develop an in-depth understanding of the inter-generational family experience of bvFTD over time.

Method: Using a qualitative design, nineteen people were interviewed from seven families, including people living with bvFTD. Interviews occurred over three time points. Narrative analysis and grounded theory were used to understand how relationships are affected and the psycho-social coping processes involved in adjustment over time.

Results: Four themes emerged; - Cohesive and connected --- distant and disconnected - Challenges to we/ I - Assimilating, adjusting and reconstructing --- resisting, denying, being stuck - A changing we / I --- an entrenched we / I Results illustrate the influence of pre-existing relationships on family experiences of bvFTD. Challenges to family relationships occurred, including changes in mutuality and increased responsibility. Levels of awareness and understanding, influenced by factors such as proximity impacted upon individual and family adjustment. Assimilating these changes was critical to developing strategies for managing the impact on the relationship and adapting to ‘a changing we’. For closest family members including partners, grief and loss were experienced resulting in the need for a parallel adaptation to a changing ‘I’. Acceptance and adaptation was critical to supporting the wellbeing of the person with bvFTD.

Angela Richardson, supervised by Prof Murna Downs and Prof Gail Mountain

Aims of the project

To follow.

Rasha Al Dalaeen

Aims of the project

To follow.

Saba Shafiq

Aims of the project

• To understand perceptions of dementia, coping, attitudes to services and use of services, from the viewpoint of minority ethnic families, including the person with dementia and to undertake a parallel study with people from a white British background to enable comparison of themes from the majority and minority ethnic populations.
• To then co-design a theoretically based culturally sensitive intervention to foster understanding of dementia and adaptive coping.

Oladayo Bifarin

Aims of the project

This is a multi-generational study comprising of three small homogenous sub-samples namely: children affected by One Child Policy, parents affected by One Child Policy and caregivers who are in employment. The aims are:

• to understand the views and experiences of participants with caring responsibilities for older relatives in China
• to explore the preparedness of participants with regards to their potential/current caring responsibilities
• to explore the meanings that participants attach to filial piety as well as probe the extent to which they subscribe to the cultural values
• The methods of the study are in-depth semi-structured interviews, purposive sampling technique, reflexive thematic analysis

Alison Ellwood

Aims of the project

The overall aim of my PhD is to explore and understand the ways in which current and past psychological and social circumstances may impact upon current health and wellbeing for older people living with coexistent physical frailty and cognitive impairment. Further aims include identification of current and best working practice for frontline community care staff.

Helen Wells, supervised by Dr Andrea Capstick and Prof Udy Archibong

Aims of the project

To follow.

Paul Dourandish, supervised by Dr Sue Jones, Dr Kathryn Lord and Dr Daniel Jones

Aims of the project

To follow.

Akhlak Rauf, supervised by Prof Jan Oyebode and Dr Sahdia Parveen

Aims of the project

1. To develop an understanding of how South Asian families cope with transitions in the dementia-related needs of a relative with dementia – given possible influences of socio-cultural or religious factors.

2. To identify transitions as ‘step changes’ in levels of care needs and make recommendations that will enable effective coping strategies at the various stages.

The methods are a two-part qualitative research – a cross-sectional study looking at retrospective experiences of caring to influence a second study – longitudinal study over 6 months.