Publications
Our Doctoral Training Centre has produced many research publications that have made an outstanding contribution to dementia care. These works are frequently cited by other academic papers and have been contributed to by our expert staff, PhD students, and colleagues from other institutions. These publications are listed below and are from 2016 to date.
In Press
2023
Abstract
Background: Across the developed West, a significant proportion of older people die in hospital It has been argued that an acute hospital setting is not well equipped to support dying well. A palliative approach, which involves recognising and alleviating suffering, might lead to improved quality of care. Yet suffering is an intangible and contested phenomenon and little is known about people’s actual experiences of suffering in this clinical setting.
Aim: To examine the context of end-of-life care for older people in an acute hospital setting, particularly focusing on the experience of suffering.
Design: An observational study was conducted using an ethnographic approach. Data analysis was inductive and iterative. Reflexive analysis included observations and inferences from a participant-observer perspective. Over a period of three months in 2016, 186 hours of observations of clinical care were carried out.
Settings / Participants: The study was carried out on a 30-bedded acute older peoples’ hospital ward in the United Kingdom. Participants included 11 patients and 33 members of staff and visitors.
Results: Patient suffering was influenced by a range of factors. Delays in recognising and acknowledging dying often led to treatments that were burdensome or futile, exacerbating patient suffering. This was frequently associated with clinical decision-making that did not take into consideration long term concerns such as prognosis or quality of life. Environmental factors in the physical clinical setting such as noise and smell also exacerbated suffering. Finally, aspects of interpersonal interactions, such as paternalistic attitudes or ineffective communication, affected patient experience.
Conclusion: Acute care for older people in hospital was shaped by an overarching ideology of rescue which predicted and dictated the process of care. Findings demonstrated that suffering was not restricted to the direct experiences of life-limiting illness but was also associated with the experience of receiving care in an acute hospital setting. Avoiding or minimising iatrogenic suffering is an essential component of compassionate care.
Reference
Green, L., Capstick, A.J. & Oyebode J.R. (In press) Iatrogenic suffering at the end of life: an ethnographic study. Palliative Medicine.
Abstract
Objectives
Dementia progressively affects cognitive functioning, including the ability to communicate. Those who struggle to communicate are often considered unable to relate to other people. Frontline care workers are in a position to connect with residents. However, we know little about their perspectives. The aim of this study was to understand how and when nursing home staff meaningfully engaged with residents with advanced dementia.
Methods
Semi-structured interviews, supplemented by informal conversations, were conducted with 21 staff from seven nursing homes. Inductive thematic analysis identified themes in the accounts.
Results
Four themes related to how staff engaged with residents with advanced dementia (initiating meaningful engagement, recognising subtle reactions, practising caring behaviours, patience and perseverance). Two themes related to when meaningful engagement occurred (lacking time to connect, making the most of time during personal care).
Conclusion
A key barrier to implementing formal interventions to improve care is lack of staff time. Staff overcome this by using personal care time for meaningful engagement with residents. Their approach, developed through experience, is consonant with person-centred dementia care. Building on this, future research should use participatory approaches building on practice wisdom to further develop and evaluate meaningful engagement with residents with advanced dementia.
Reference
Haunch, K., Downs, M., & Oyebode, J. (2023). ‘Making the most of time during personal care’: nursing home staff experiences of meaningful engagement with residents with advanced dementia. Aging & Mental Health, 1-9. https://doi.org/10.1080/13607863.2023.2177254
2022
Abstract
Emphasis placed on Xiao (孝; filial piety) in Chinese culture highlights parents’ investment in their children with the expectation of being cared for when older. An increasing number of Chinese students come to the UK to study, with the majority returning home and likely to become future caregivers for their parents. Little attention has been paid to the implications of transnational mobility of Chinese students on the reciprocal aspects of future care responsibility. With the uniquely changing family structure due to consequences of the One-Child Policy, we conducted proactive research on the opportunities and challenges that Chinese transnational students anticipate they may face in future caregiving for elderly parents. Hence, this study’s aim was to make a novel contribution to knowledge through exploration of the perspectives of Chinese students in England on intergenerational ties and filial obligations. Adopting a social constructivist philosophical position, we conducted three focus groups with 19 UK-based Chinese students, using a semi-structured topic guide with informed consent. Interviews were translated, transcribed and analysed using reflective thematic analysis, capturing semantic and latent meanings and employed a descriptive and interpretative approach. Six themes were discovered, revealing a ‘culture of duty’ where familial obligation and societal expectations were prominent. Prospective caregivers anticipated a future dilemma between balancing work commitments and providing care as mandated by Xiao. Furthermore, it appeared that lack of preparedness might further exacerbate barriers faced when accessing support. We surmised that the changing demographics and absence of formal support could compound stressors over time, especially if cognitive dissonance arises as realities of life do not fit with societal expectations. Our findings imply that policymakers, practitioners and the government will need to adequately support prospective family caregivers who are returnees in caring for older generations.
Reference
Bifarin, O., Quinn, C., Breen, L., Zhang, B., & Oyebode, J. (2022). Intersections between the culture of Xiao (孝) and caring for older relatives in China: Perspectives of United Kingdom-based Chinese students on future care for their parents. Ageing and Society, 1-21. doi:10.1017/S0144686X22001118
Abstract
Research concerning the reciprocal influence of relationships and dementia largely focuses on dyadic relationships despite evidence that whole families are affected. Furthermore, such research generally considers more common forms of dementia such as Alzheimer's disease. Behavioural variant fronto-temporal dementia (bvFTD) primarily although not exclusively affects people below the age of 65 and is distinctly different in its impact from more common forms of dementia, affecting social cognition and therefore relational functioning. We aimed to develop a detailed understanding of intergenerational family experiences of bvFTD over time. We adopted a social constructivist and pluralist approach, using Narrative Thematic Analysis and Grounded Theory. We interviewed seven families in their own homes, including the person with bvFTD, at up to three time-points every six to nine months from 2012 to 2014, resulting in 46 interviews with 19 family members. Three super-ordinate themes were identified: Theme 1: We before bvFTD: cohesive and connected – disconnected and distant; Theme 2: Challenges experienced by us; and Theme 3: Relational outcomes: a changing we – an entrenched we. Results emphasise bvFTD brought early and significant disruption to family relationships. The interplay of prior relational functioning, involving the nature of the relationship for family members, the specific impact of bvFTD on these relationships and family member's understanding of bvFTD was critical to how each family fared over the duration of the research, and the relational outcomes they experienced. These findings suggest health-care practice could enhance its support for families living with bvFTD, through the development of tailored, family-oriented approaches to assessment and practice. Such approaches are necessary to understand how families work together and identify interventions that address the family-specific challenges bvFTD brings. The provision of tailored, relational-focused and specialised information concerning the experience of living with bvFTD is needed to flexibly address families' needs and expectations.
Reference
La Fontaine, J., Larkin, M. & Oyebode, J.R. (2022). Intergenerational Family Relationships and the impact of Behavioural Variant Frontotemporal Dementia (bvFTD): A Qualitative Longitudinal Study. Ageing and Society.1-25. doi:10.1017/S0144686X22001088
Abstract
Objectives
Meaningful connections promote the quality of life of people living with advanced dementia in nursing homes. However, evidence internationally suggests people living with advanced dementia in nursing homes spend the majority of time alone, with little contact with anyone. Frontline care workers are in powerful positions to meaningfully engage with residents, yet research to date has not focused on their experiences. The aim of this study was to explore the experiences of nursing home staff, specifically, what care workers feel enables them to meaningfully engage with residents living with advanced dementia.
Methods/Design
Semi-structured interviews were conducted with 21 staff from seven nursing homes. Inductive thematic analysis was used.
Results
Four themes were important for facilitating care workers to meaningfully engage with residents with advanced dementia: support from managers and nurses, support from experienced care workers, a caring culture and an appropriate physical environment.
Conclusion
Effective leadership was the key thread that ran throughout. It was evident that meaningfully engaging with residents with advanced dementia was hard, particularly for new or inexperienced care workers. Those with experience (of care work and the residents they cared for), as well as those in formal leadership positions played key roles in facilitating care workers to: perceive it was their role to connect, understand, accept and empathise with residents, understand the importance of getting to know residents' and express their own caring attributes. Future research should focus on empirically testing leadership models that promote meaningful engagement.
Reference
Haunch, K., Downs, M., & Oyebode, J. (2022). Leading by example: Nursing home staff experiences of what facilitates them to meaningfully engage with residents with advanced dementia. International Journal of Geriatric Psychiatry, 37(9). https://doi.org/10.1002/gps.5805
Abstract
As the ageing population in China continues to grow, more people will be living with long-term health conditions and require support from family care-givers. This scoping review therefore aims to explore sources of stress and coping mechanisms adopted by care-givers of older relatives living with long-term conditions in mainland China. Literature searches were conducted in English (CINAHL, EMBASE, MEDLINE, PsycINFO and SCOPUS) and Chinese (CNKI, WANFANG DATA, CQVIP and CBM) databases between October and November 2019. The searches focused on the stressors and coping mechanisms utilised by family care-givers residing in the community. Narrative synthesis was used to identify themes within the data. Forty-six papers were included: 20 papers from English and 26 from Chinese databases. Six themes captured stressors: care-giving time (N = 22), financial resources (N = 17), role and personal strains (N = 42), preparedness (N = 4), social roles (N = 10) and lack of adequate formal support (N = 22); and one theme captured coping (N = 14). Unmet needs of care-givers of older relatives in mainland China were found to be extensive. Only a few studies had attempted to explore the causal link between stressors, coping and the influence of culture. Findings underscore the significance of adequately capturing intricacies around care-givers’ unmet needs, rather than generalising on the basis of culture. Qualitative studies are critical to providing a better understanding of the relationship between stressors, coping and resources afforded to care-givers by their cultural environment. Having such understanding is crucial to inform the development of competent care, which promotes self-efficacy and self-actualisation in care-givers in mainland China.
Reference
Bifarin O., Quinn, C., Breen, L. & Oyebode JR (In press) Stressors and coping mechanisms of family caregivers of older relatives living with long-term conditions in mainland China– A scoping review of the evidence. Ageing and Society
2021
Abstract
Hearing and vision loss in older people has been proven to affect physical and mental health and increase the speed of cognitive decline. Studies have demonstrated that certain practices and improved staff knowledge increase the effective care of residents' ears and eyes, yet it is not known which practices are being implemented in care homes. This study aimed to identify the gaps in staff knowledge regarding hearing and vision difficulties in older residents, and which practices known to improve ear and eye care in older care home residents are not commonly implemented in care homes in England.
Reference
Andrusjak W, Barbosa A & Mountain G (2021) Hearing and vision care provided to older people residing in care homes: a cross-sectional survey of care home staff. BMC Geriatrics, 21, Article number: 32 (2021).
Abstract
As the ageing population in China continues to grow, more people will be living with long-term health conditions and require support from family care-givers. This scoping review therefore aims to explore sources of stress and coping mechanisms adopted by care-givers of older relatives living with long-term conditions in mainland China. Literature searches were conducted in English (CINAHL, EMBASE, MEDLINE, PsycINFO and SCOPUS) and Chinese (CNKI, WANFANG DATA, CQVIP and CBM) databases between October and November 2019. The searches focused on the stressors and coping mechanisms utilised by family care-givers residing in the community. Narrative synthesis was used to identify themes within the data. Forty-six papers were included: 20 papers from English and 26 from Chinese databases. Six themes captured stressors: care-giving time (N = 22), financial resources (N = 17), role and personal strains (N = 42), preparedness (N = 4), social roles (N = 10) and lack of adequate formal support (N = 22); and one theme captured coping (N = 14). Unmet needs of care-givers of older relatives in mainland China were found to be extensive. Only a few studies had attempted to explore the causal link between stressors, coping and the influence of culture. Findings underscore the significance of adequately capturing intricacies around care-givers’ unmet needs, rather than generalising on the basis of culture. Qualitative studies are critical to providing a better understanding of the relationship between stressors, coping and resources afforded to care-givers by their cultural environment. Having such understanding is crucial to inform the development of competent care, which promotes self-efficacy and self-actualisation in care-givers in mainland China.
Reference
Bifarin O., Quinn, C., Breen, L. & Oyebode JR (In press) Stressors and coping mechanisms of family caregivers of older relatives living with long-term conditions in mainland China– A scoping review of the evidence. Ageing and Society
2020
Abstract
Living with a chronic or mental health condition can be challenging and requires considerable adjustment. As ways of coping are culturally influenced, it is important to understand how minority ethnic populations cope, to inform appropriate services. This review aimed to explore the coping strategies used by UK residents from an African Caribbean or Irish background between 1960 and 2020. A systematic literature search on strategies used to cope with chronic health conditions in both populations living in the United Kingdom identified 26 relevant studies. Data were extracted, quality of papers was appraised and critical interpretive synthesis was applied. Two major foci of the studies were coping strategies and barriers to coping. The main coping strategies were denial/scepticism, self-management, spirituality and religion. Within each population, there was variation in ways of coping. The review highlights the complex role of religion in influencing coping strategies. It demonstrates how personal and minority ethnic populations’ experiences of service use are connected with stigma, fear and mistrust, which also act as barriers to seeking help and to coping. Coping with a chronic or mental health condition in the Irish and African Caribbean populations is under-researched. Stigma, fear and mistrust in services act as key barriers to help-seeking and religion is a prominent coping strategy. However, few detailed examples were given on how it was used to assist individuals when managing a chronic or mental health condition. Also due to a lack of research, firm conclusions cannot be drawn for the Irish population.
Reference
Shafiq S., Parveen., S. & Oyebode JR. (2020). How people of African Caribbean or Irish ethnicity cope with long term health conditions in UK community settings: A systematic review of qualitative, quantitative and mixed method studies. Health & Social Care in the Community
Abstract
Through this article we aim to contribute to discussion about how to support family caregivers in China to care effectively for parents with dementia. We outline evidence about the nature of the challenge, situating the rise in numbers of people living with dementia and the role of families in providing care, in the specific time and place of 21st century China. We note the unique backdrop of economic and social transitions, which is leading to strains and changes in traditional values. We draw on recent research to summarise the impact of caregiving and suggest the socio-cultural model of stress and coping as a powerful framework to inform service development. Given the centrality of filial piety in Chinese culture and the associated expectation that families look after their own relatives, we propose that a community case management model may be an effective way of supporting dementia care in China. We describe the Admiral Nursing model that is used in the UK as an example.
Reference
Bifarin O., Oliver E., Oyebode J., & Liu Y. (2020). Supporting Family Caregivers to Care for Parents Living with Dementia: the Experience shared from United Kingdom on specialized dementia care. Chinese Nursing Management, 20(9): 1285-1291.
Abstract
This study aimed to explore experiences of a training and supervision intervention for nurses in nursing homes. This paper reports on the qualitative findings of a larger mixed-methods study. Few studies have explored reactions to training on burnout in nurses working in nursing homes and whether outcomes are sustained. The training consisted of a combination of classroom-based and workplace training, which involved the trainer working alongside the nurses. Interviews were carried out in 2015, exploring how the nurses implemented the knowledge and skills they had been taught and whether burnout was affected by the training intervention. Interviews were conducted with eight nurses who received training followed by supervision (T+S) and five nurses who received training only (TO). The interviews were recorded and transcribed verbatim and analysed using Template Analysis. Findings are presented under three themes: Experiences of Burnout, Reactions to Training and Experiences of Supervision. The findings indicated the training and supervision interventions empowered nurses to change their practice. Active learning strategies and a person-centred approach to learning empowered the nurses, while clinical supervision aided implementation and adjustment of strategies, leading to an increased sense of job control and job satisfaction.
Reference
Smythe, A., Jenkins, C., Galant-Miecznikowska, M., Dyer, J., Downs, M., Bentham, P., & Oyebode, J. (2020). A qualitative study exploring nursing home nurses’ experiences of training in person centred dementia care on burnout. Nurse Education in Practice, 102745.
2019
Abstract
Background and objectives: Poor identification of sensory impairments in care homes can be due to multiple factors. This scoping review identifies and synthesizes the literature into the detection of hearing and vision loss in the care home environment, and the management of these sensory losses once identified.
Research design and methods: A scoping review methodology was used to identify primary research of any design published from 1985 to September 2018. Six electronic databases were searched, and articles were also sourced from reference lists, relevant charity organizations and published experts.
Results: Six electronic databases and multiple gray literature sources identified 51 articles for inclusion. The evidence confirmed that lack of knowledge in care home staff, poor management of assistive aids, unsuitable environment, lack of connections with optometrists and audiologists, underuse of effective screening tools, and the added complexity of assisting those with dementia are all barriers to effective practice. Conversely, flexible training programs, availability of a variety of assistive aids, simple screening tools, and adaptions to the environment are effective facilitators.
Discussion and implication: This review acknowledges that the barriers to identification and management of hearing and vision loss in care homes are multifaceted and that collaboration of multiple stakeholders is required to implement change and improve the residents' ear and eye care. Recommendations are offered to support more effective service provision tailored to meet the needs of people with sensory impairments living in care homes, and this could subsequently improve best practice.
Reference
Andrusjak W, Barbosa A & Mountain G (2019) Identifying and Managing Hearing and Vision Loss in Older People in Care Homes: A Scoping Review of the Evidence. The Gerontologist. 60 (3), e155-e168
Abstract
Background: People living with dementia in care homes are regularly admitted to hospital. The transition between hospitals and care homes is an area of documented poor care leading to adverse outcomes including costly re-hospitalisation. This review aims to understand the experiences and outcomes of care for people living with dementia who undergo this transition from the perspectives of key stakeholders; people living with dementia, their families and health care professionals.
Methods: A systematic search was conducted on the CINAHL, ASSIA, EMBASE, MEDLINE, PsychINFO, and Scopus databases without any date restrictions. We hand searched reference lists of included papers. Papers were included if they focused on people living with dementia moving from hospital to a short or long term care setting in the community including sub-acute, rehabilitation, skilled nursing facilities or care homes. Titles, abstracts and full texts were screened. Two authors independently evaluated study quality using a checklist. Themes were identified and discussed to reach consensus.
Results: In total, nine papers reporting eight studies met the inclusion criteria for the systematic review. A total of 257 stakeholders participated; 37 people living with dementia, 95 family members, and 125 health and social care professionals. Studies took place in Australia, Canada, United Kingdom (UK), and the United States of America (US). Four themes were identified as factors influencing the experience and outcomes of the transition from the perspectives of stakeholders; preparing for transition; quality of communication; the quality of care; family engagement and roles.
Conclusion: This systematic review presents a compelling case for the need for robust evidence to guide best practice in this important area of multi-disciplinary clinical practice. The evidence suggests this transition is challenging for all stakeholders and that people with dementia have specific needs which need attention during this period.
Reference
RICHARDSON, A., BLENKINSOPP, A., DOWNS, M. & LORD, K. 2019. Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review. BMC Geriatrics, 19, 202-12
2017
Abstract
Background: The care home workforce (over half a million people in the UK) has a pivotal role in the quality of care provided to the residents. Much care in this setting is inadequate, lacks a person-centred focus and neglects the dignity of residents. A combination of factors leads to burnout in nurses working in nursing homes, contributing to poor quality care. Recent reports have indicated that cultures of care need to be addressed through training, improved workforce support and supervision and that improving the quality of care for people with dementia can be achieved by the development of leadership in nursing and clarifying professional values. Addressing burnout through an educational intervention should improve quality of care and nurses' experiences.
Objectives: The study aimed to explore the training needs of nurses working with people with dementia in nursing homes with a view to developing an educational intervention to reduce nurses' burnout and improve person-centred care.
Design: Four focus groups were conducted with 11 qualified nurses working in nursing homes; data was analysed using thematic analysis.
Results: Four themes emerged through the analysis of the transcripts. Participants reported that their work responsibilities revolved mainly around directing others, day to day care, paper work and supporting family carers. Nurses identified the importance of person-centred ways of being, communication and clinical skills when working in nursing home setting. They expressed their frustrations associated with managing staff levels, responding to behaviour that challenges and lack of time.
Conclusions: The barriers to learning, experience of previous training and gaps in knowledge identified could inform the design of future training and support programmes.
Keywords: Dementia; Nurses; Nursing homes; Training.
Reference
Smythe, A., Jenkins, C., Bentham, P. & Oyebode, JR (2017). A qualitative study investigating training requirements of nurses working with people with dementia in nursing homes. Nurse Education Today. 50, 119-123.
2016
Abstract
In the UK, one third of the 850,000 people with dementia live in care homes. This article explores the process of carrying out research in nursing homes, identifying barriers and enabling factors, and making recommendations for researchers. The authors’ experiences derive from an ongoing study investigating the effect of educational interventions to promote and embed person-centred care, designed for nurses caring for the people with dementia in nursing homes. Design issues arose from the need to use cluster randomisation which requires a large sample size, implementation fidelity, poor compliance and high numbers of participants lost to follow up. Further difficulties included gaining ethical approval, recruitment, raising concerns and the practicalities of participant retention. There are many benefits of conducting research in care homes, for the homes themselves, their staff and residents. These include training and education, networking and empowerment of staff and subsequent improved standards of care. For the research team, benefits include opportunities to contribute to an underserved setting, to advance care standards and improve nurses’ working lives.
Reference
Jenkins, C., Smythe, A., Galant-Miecznikowska, M., Bentham, P., & Oyebode, J. (2016). Overcoming challenges of conducting research in nursing homes: Catharine Jenkins, Analisa Smythe and colleagues explore the processes, barriers and make recommendations for research in long-term care settings. Nursing older people, 28(5), 16-23.