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Social and Psychological Research in Long Term Conditions

Our research has wide-ranging impact. Here are two examples.

The Dementia Applied research programme focuses on supporting people with dementia and their families. It focuses on the translation of research into practice, and on developing and raising the standard of outcome measures to better reflect the daily experiences of people living with dementia and their carers. This work includes exploring the meaning, experience and measurement of wellbeing in dementia, and the development of creative and innovative approaches such as digital technologies.

Our Music and Mental Wellbeing project explored how community music making positively impacts on the lives of older people. Through the formation of a ukulele orchestra, people came together to learn, practice and perform as a group. It demonstrated that making music together has powerful and lasting positive effects on physical and mental health, particularly in terms of combating loneliness and isolation. 

Liz Walker
Faculty of Health Sciences
Professor Liz Walker
Professor of Health and Social Work Research

The Challenge

Chronic diseases have reached epidemic proportions and are the leading cause of death globally.

More people are living longer with multiple conditions which, in addition to the significant socio-economic impacts, reduce quality of life and physical functioning while increasing mortality rates, hospital admissions, psychological distress and polypharmacy.

Our interdisciplinary research draws together work which explores the experience, and impact, of living with chronic, long-term, conditions. 

SPARC prioritises the voices of people living with long term conditions and those of their families and carers. It does this through gathering and understanding people’s stories and narratives around illness, long-term conditions (LTCs) and, crucially, their intersection.

The Approach

SPARC is an interdisciplinary research group that brings together diverse expertise and research experience.

Our approach is to develop a holistic ‘whole person’ perspective by conceptualising and understanding how long-term conditions are experienced in everyday life.

We bring an ecological perspective that focuses on the whole person and their various support networks, recognising the importance of family carers as well as health practitioners, and exploring what enables people to live well and productively.

Our research responds directly to UK government priorities articulated in a range of policy frameworks including the NHS Long Term Plan (2019) and the Industrial Strategy Grand Challenge, ‘Meeting the Needs of an Ageing Society’ (2018).

We have strong links with the NHS and attract research funding from a range of sources including Horizon 2020, the NIHR, the ESRC and relevant charities such as Lupus UK.

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OUR AIMS

  • To undertake and disseminate high quality research relevant to health and social work, social care and clinical practice
  • To work in collaboration with people living with long-term conditions, as well as with charitable organisations, partner academic institutions, health and social work colleagues and industry
  • To transform the lives of people living with long-term conditions and those of their families and carers

Projects

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CAREGIVERSPRO-MMD

A website to support people with dementia and their family carers.

Bottles

Alcohol and drug research

Clinical and public health research which changes lives and communities and includes the alcohol and physical activity research cluster.

Ukelele

Music and mental wellbeing

This project created an older people’s ukulele orchestra in Hull to explore the impact of community music making on people’s physical and mental wellbeing.

Office workers

The impact of fluctuating and invisible conditions, such as lupus, on employment

Identifying challenges people experience when living with fluctuating, relapsing and remitting health conditions and the inability of many employers to work with the challenges these conditions pose.

Medicine

The role of pharmacy prescribers

Examining the roles and responsibilities of non-medical prescribers in primary care.

Laptop user

The Distance Caring Project

'Distance carers’ are an important group who are increasing in number and face specific and distinct challenges whilst providing significant amounts of support.

Find out more
View all projects

CAREGIVERSPRO-MMD

A website to support people with dementia and their family carers.

This is Horizon 2020-funded project is based at four sites across the EU, including the UK pilot site in Hull. Our researchers are collaborating on this project with the Humber Teaching NHS Foundation Trust. CARGIVERSPRO aims to meet the information and support needs of people living with dementia and their family carers who helped design the website. We are interested to see if the website can improve the quality of life of people living with dementia and reduce stress among their carers. Visit the website.

FAMCARE

A health and psychosocial e-tool for the management of clinically significant challenging behaviour in dementia at home.

Addictions research

  • PhD Scholarship Cluster, Reducing alcohol-related harms through physical activity, Phillips, Smith, Martin, Abt (2019)
  • Reducing the burden of unplanned alcohol-related admissions within secondary care: secondary analysis of routine hospital data, Phillips, Ireneous, Coulton (University of Kent) (2018)
  • The assessment and measurement of alcohol dependence, Phillips (2018)
  • Minimum unit pricing of alcohol in Scotland study, Phillips – project led by Leyland (University of Glasgow) (2018)
  • ADAM – Alcohol Dependence and Adherence to Medications, Phillips - project led by Drummond (King’s College London) (2018)

Music and Mental Wellbeing

The Silver Strings community music project aims to change the world - four strings at a time!

This project created an older people’s ukulele orchestra in Hull to explore the impact of community music making on people’s physical and mental wellbeing.

The results have been used to help generate a funding bid which aims to expand the reach of this innovative work.

The Impact Of Fluctuating And Invisible Conditions, Such As Lupus, On Employment

This research identified the challenges people experience when living with fluctuating, relapsing and remitting health conditions. It identified the inability of many employers to work with the challenges these pose leading to significant distress, and loss of important skills and contribution to the wider economy. It also highlights significant problems with the welfare system in supporting people living with long-term conditions.

The Role of Pharmacy Prescribers

We are interested in the roles and responsibilities of non-medical prescribers in primary care, particularly the role of pharmacy prescribers. We are working on several strands to support this research.

The Distance Caring Project

Members of SPARC (Caroline White, Jane Wray and Clare Whitfield) have recently conducted an exploratory study of the experiences of people who provide help, care and support from a distance. They suggest that ‘distance carers’ are an important group who are increasing in number and face specific and distinct challenges whilst providing significant amounts of support. They argue that this particular group should in future be considered in discussions of carers’ needs. View the report summarising their main findings.

Social Prescribing

Social prescribing is a key element of the NHS Plan. It aims to improve mental health and wellbeing and reduce isolation and loneliness by referring primary care patients to non-medical, community-based sources of support. This 2-year project is evaluating social prescribing interventions delivered in Hull.

For further information contact Dr Jo Bell.

Members
Outputs and publications

Bell J, Mok K, Gardiner E and Pirkis J, 'Suicide-related Internet use amongst suicidal young people in the UK: Characteristics of users, effects of use, and barriers to offline help-seeking', Archives of Suicide Research, 22(2), pp 263-277, DOI: 10.1080/13811118.2017.1334609 (2017)

Glover L, Kinsey D, Clappison D J, Gardiner E and Jomeen J, '"I never thought I could do that...”: Findings from an Alexander Technique pilot group for older people with a fear of falling'European Journal of Integrative Medicine, 17, pp 79-85 (2018)

Aston L, Hilton A, Moutela T, Shaw R and Maidment I, 'Exploring the evidence base for how people with dementia and their informal carers manage their medication in the community: a mixed studies review', BMC Geriatrics, 17:242, DOI: 10.1186/s12877-017-0638-6 (2017)

Moonga J and Likupe G, 'A systematic literature review on nurses' and health and support workers' experiences of caring for people with dementia on orthopaedic wards', Journal of Clinical Nursing, 25, pp 1789-1804 (2016)

Patterson, K., Clarke, C., Wolverson, E. and Moniz-Cook, E. (2017). Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesisInternational Psychogeriatrics, 1-15, 

Booth, S., Price, E and Walker, E (2018) ‘Fluctuation, invisibility, fatigue – the barriers to maintaining employment with systemic lupus erythematosus: results of an online survey.’ Lupus

Wolverson, E., Dunn, R. and White, C. (2018). Technology for families of people with dementia. In Astell, A., Smith, S. and Joddrell, P. (eds.), Technology for Dementia: A Guide for Everyday Living. Jessica Kingsley: In press

Patterson, K., Clarke, C., Wolverson, E. and Moniz-Cook, E. (2017). Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis, International Psychogeriatrics, 1-15.

Feast. A, Orrell, M., Russell, I., Charlesworth, G., and Moniz-Cook, E. (2017). The contribution of caregiver psychosocial factors to distress associated with behavioural and psychological symptoms in dementia, International Journal of Geriatric Psychiatry, 32 (1)76–85

Gove,D., Diaz-Ponce, A., Georges, J., Moniz-Cook, E., Mountain, G., Chattat, R., Øksnebjerg, L., and The European Working Group of People with Dementia (2017), Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement), Aging & Mental Health, online May 2017

Feast, A., Orrell, M., Charlesworth, G., Melunsky, N., Poland, F. and Moniz-Cook, E. (2016). Behavioural and Psychological Symptoms in Dementia (BPSD) and the challenges or family carers: a systematic review, British Journal of Psychiatry 208 (5) 429-434

Westwood, S. and Price, E. (eds) (2016). Lesbian, Gay, Bisexual and Transgender (LGBT) Individuals Living with Dementia: Theoretical, practical and rights-based perspectives. London: Routledge

Price, E. and Walker, L. (2015). Chronic Illness, Vulnerability and Social Work: Autoimmunity and the contemporary disease experience. London: Routledge

Zafeiridi, P., Paulson, K., Dunn, R., Wolverson, E. and White, C. et al. (2018). A Web-Based Platform for People With Memory Problems and Their Caregivers (CAREGIVERSPRO-MMD): Mixed-Methods Evaluation of UsabilityJMIR Formative Research. 2. e4. 10.2196/formative.9083

Brennan A, Hill-McManus D, Stone T, Buykx P, Ally A, Pryce R E, Jones A, Alston R, Jones A, Cairns D, Millar T, Donmall M, Phillips T, Meier P and Drummond C D. (2019) Modeling the potential impact of changing access rates to specialist treatment for alcohol dependence for local authorities in England: The Specialist Treatment for Alcohol Model (STreAM). J Stud Alcohol Drugs Supp (s18), 96-109

Coulton S. Dale V. Deluca P. Gilvarry E. Godfrey C. Kaner E. McGovern R. Newbury-Birch D. Patton R. Parrott S. Perryman K. Phillips T. Shepherd J. Drummond C. Heather N. (2018). Corrigendum: Screening for at-risk alcohol consumption in primary care: A randomized evaluation of screening approaches. Alcohol and Alcoholism. doi: 10.1093/alcalc/agy022.  [Epub ahead of print].

Coulton S. Alam M.F. Boniface S. Deluca P. Donoghue K. Gilvarry E. Kaner E. Lynch E. Maconochie I. McArdle P. McGovern R. Newbury-Birch D. Patton R. Phillips C.J. Phillips T. Rose H. Russell I. Strang J. Drummond C. (2018). Opportunistic screening for alcohol use problems in adolescents attending emergency departments: an evaluation of screening tools. Journal of Public Health. doi: 10.1093/pubmed/fdy049. [Epub ahead of print].

Donoghue K, Rose H, Boniface S, Deluca P, Coulton S, Alam M F, Gilvarry E,Kaner E, Lynch E, Maconochie I, McArdle P, McGovern R, Newbury-Birch D, Patton P, Phillips C J, Phillips T, Russell I, Strang J and Drummond C, 'Alcohol Consumption, Early-Onset Drinking, and Health-Related Consequences in Adolescents Presenting at Emergency Departments in England', Journal of Adolescent Health, 60(4), pp 438–446 (2017)

Brennan A, Buykx P, Pryce R E, Jones A, Hill-McManus D, Stone T, Ally A, Gillespie D, Meier P, Alston R, Cairns D, Millar T, Donmall M, Wolstenholme A, Phillips T, Elzerbi C and Drummond C D, 'An Evidence-Based Model for Estimating Requirements for Specialist Alcohol Treatment Capacity in England - The Specialist Treatment for Alcohol Model (STreAM) Version, Final report to Department of Health Policy Research Programme PR-R4-0512-12002 (2016)

View all publications

Research Students

Israa Faraj

Male victims of honour violence

Liz Walker and Jo Bell

Vicky Burton

Children’s Perspectives of Violent Fathers

Liz Walker and Jo Bell

Dudley Ofori

Workplace well-being in Higher Education in Ghana

Jo Bell

Natasha Broke

Wellbeing in pregnancy, an exploration of the Alexander Technique

Lesley Glover and Julie Jomeen

Nicola Hanefeld

Early post-partum wellbeing, an exploration of the Alexander Technique

Lesley Glover and Julie Jomeen

Madeleine Steele

Perinatal mental health: An exploration of staff perceptions and comorbid personality disorder

Lesley Glover

Katrina Berwick

Exploring practice nurses perspectives on working with individuals with medically unexplained symptoms

Lesley Glover

Alicja Bellamy

Exploring young women’s stories in their decision to end a pregnancy, an ecological perspective

Lesley Glover

Emmah Jassim

Perceptions of personal responsibility among mental health workers

Lesley Glover

Nittiya Noysipoom

The Perspectives of Thai Older Persons with Early Stage Dementia of their Care Needs

Moira Graham and Fiona Cowdell

Yetunde Ataiyero

The Barriers and Levers of Hand Hygiene Compliance among Nigerian Healthcare Workers

Judith Dyson and Moira Graham

Kirsty Fishburn

Living with a diagnosis of borderline personality disorder: women’s perspectives and insights

Liz Price and Moira Graham

Xiaolei Zhao

Development of an app for diabetes

Roger Watson and Andrea Hilton

Selma Rehman

Developing and testing a brief intervention for feeding difficulty in dementia

Roger Watson and Gloria Likupe

David Muir

Training requirements in acute and critical care nursing in Uganda – setting the scene. A Delphi study incorporating mixed methods.

Peter Draper and Gloria Likupe

Usa Junyaem

Investigating factors that influence alcohol use amongst nurses in Thailand

Tom Philips

Claire Marshall

NIHR Pre-doctoral Fellowship

Tom Phillips and Julie Jomeen

Urooj Aizad

Experiences of young BME people living with obesity

Liz Walker and Liz Price

Catriona Brody

An Ethnography of a Therapeutic Community

Liz Price and Caroline Humphrey

Anne Cullen

The Concept and Practice of Leadership in Social Work

Liz Price

Jason Hayhurst

Artificial Intelligence and the Experience of Dementia

Liz Price and Darren Mundy

Emma Stevens

An Ethnography of Dignity in Community Nursing

Liz Price and Liz Walker

Carol Rubini

Prisoner experiences of Palliative Care

Liz Walker and Helen Johnson

Gillian Wilson

Shared treatment decision making: Patient and Rheumatology Specialist Support Nurse Experiences

Liz Walker and Jacquie White

Laura Shand

Gendered Experiences of Early Career Academics

Liz Walker and Clare Whitfield

Marion Wilson

Prisoner Experiences of Grief and Bereavement

Liz Walker and Helen Johnson

Kalia K Kaparounaki

Child Carers in Malawi in the context of HIV/AIDS

Elsbeth Robson and Liz Walker

Long Vu

Same Sex Identity in Vietnam

Liz Walker and Mark Johnson

L Conway

Resilience in people with dementia and their caregivers

Emma Wolverson

J Adams

Mindfulness and Meditation Interventions in Dementia: Experiences, Adaptations and Effects on Well-being

Emma Wolverson

L Sweeney

Shared experiences of making digital life stories in dementia dyads

Emma Wolverson

S Lowe

Humour styles in dementia

Emma Wolverson

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