Social frailty and Co-Morbid Cancer and Dementia.
Research type
Research Study
Full title
An exploration of the concept of social frailty amongst adults with co-morbid cancer and dementia, who are undergoing radiotherapy. A longitudinal mixed methods approach.
IRAS ID
321141
Contact name
Jennifer N C Woods
Contact email
Sponsor organisation
University of Salford
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Research summary:
Individuals living with both cancer and dementia, are faced with many challenges and inequalities in the cancer care they receive. Recent research has found that individuals with co-morbid cancer and dementia rely heavily on support social networks (family and friends) during cancer treatment, and they are at risk of having to make significant changes to their social situations, such as moving into care homes.
This study will explore the perceptions and experiences of social frailty amongst adults with co-morbid cancer and dementia and investigate whether social frailty changes over the course of the individual’s cancer treatment pathway. Social frailty can be considered an umbrella term, which includes support networks (such as family and friends), social isolation, loneliness, social activities, social participation and socioeconomic factors (such as education, income and employment). All these social factors have been shown to have influence a person’s physical and mental health, overall survival, and quality of life. By having a better understanding of social frailty amongst adults with co-morbid cancer and dementia, it is hoped that this research will contribute to improving patient care and outcomes, using a personalised and preventative approach.
This study will use a longitudinal mixed methods approach (use of qualitative and quantitative tools at different time points). A range of data collection tools to address the research objectives, which include three semi-structured interviews, a short social frailty questionnaire and a semi-structured interview with care partners (person who is providing informal care).
Research results:
Understanding Social Support and Daily Life for Older Adults Living with Cancer and Memory Problems During Radiotherapy
(Academic title: Exploring Social Frailty Among Older Adults Living with Cancer and Dementia/Cognitive Impairment Receiving Radiotherapy)WHO CARRIED OUT THE RESEARCH?
This study was carried out by Jennifer Woods as part of a Professional Doctorate in Health and Social Care at the University of Salford.The research took place within a specialist cancer treatment centre in England and was sponsored by the University of Salford.
PATIENT AND PUBLIC INVOLVEMENT
People with experience of dementia and caring for someone with dementia helped to develop the study.They reviewed participant information sheets, recruitment materials, and study documents to make sure they were easy to understand and suitable for people taking part. Their feedback helped shape the design of the research.
WHERE AND WHEN DID THE STUDY TAKE PLACE?
The study took place within a specialist cancer treatment centre in England between 2023 and 2024.The findings were analysed and written up as part of a doctoral research programme.
WHY WAS THIS RESEARCH NEEDED?
Older adults living with both cancer and dementia, or other memory and thinking difficulties, can face additional challenges during cancer treatment.Family support, friendships, social activities, transport, finances, and community connections can all affect a person's wellbeing and experience of treatment. Researchers sometimes describe these social factors using the term "social frailty".
Although social frailty has been studied in older adults, very little was known about the experiences of people living with both cancer and dementia or memory problems whilst receiving radiotherapy treatment.
This study aimed to improve understanding of these experiences.
WHAT WERE THE MAIN QUESTIONS STUDIED?
The study explored:
• How social support and everyday life were affected during cancer treatment.
• How these experiences changed over time.
• What factors helped or made things more difficult during treatment.
• Whether existing questionnaires reflected people's real-life experiences.WHO PARTICIPATED IN THE STUDY?
The study originally aimed to recruit three older adults living with both cancer and dementia or memory difficulties who were receiving radiotherapy treatment. Family carers were also invited to take part.In practice, recruitment was more difficult than anticipated and only one participant was recruited. No family carers took part.
Several factors contributed to this. The study focused on a small group of patients who needed to meet specific eligibility criteria. Time was also required to establish the necessary research agreements and approvals before recruitment could begin. As the research formed part of a doctoral programme, recruitment and data collection also needed to be completed within the available study timeframe.
The researcher also made several decisions to protect potential participants and carers. Participation was entirely voluntary, and care was taken to avoid placing additional burden on people who were already managing cancer treatment alongside dementia or memory difficulties. Potential participants were only approached where participation was considered appropriate and where there were no concerns that involvement in the study might cause distress or negatively affect wellbeing.
Although the study recruited fewer participants than originally planned, the participant who took part completed all planned interviews. This provided detailed information about their experiences before, during, and after radiotherapy treatment. The study also highlighted some of the practical and ethical challenges of undertaking research with people living with both cancer and dementia or memory difficulties.
WHAT HAPPENED DURING THE STUDY?
The participant was interviewed three times during their cancer treatment.They also completed a questionnaire about social support, relationships, and everyday life.
The interviews explored family relationships, friendships, support from others, daily activities, and experiences of cancer treatment.
WHAT WERE THE RESULTS OF THE STUDY?
The study found that social support and everyday life changed over time during cancer treatment.
Several factors influenced these experiences, including:
• Support from family and friends.
• Social relationships and social activities.
• Physical health and treatment side effects.
• Memory and thinking difficulties.
• Financial circumstances.
• Transport and access to services.
• How people adapted to challenges.Family and social support played a particularly important role throughout treatment. Support from others helped the participant manage treatment, maintain independence, and cope with everyday challenges.
The study also found that existing questionnaires may not fully capture the complexity of people's experiences during cancer treatment.
HOW HAS THIS STUDY HELPED PATIENTS AND RESEARCHERS?
This study provides new insight into the experiences of older adults living with both cancer and dementia or memory difficulties.The findings highlight the importance of talking about social support, relationships, and practical challenges alongside physical health when planning cancer care.
The study also shows that people's needs can change during treatment and that support may need to be reviewed at different stages of the cancer journey.
In addition, the study provides valuable learning about the challenges of undertaking research with people living with cancer and dementia or memory difficulties, including recruitment challenges, ethical considerations, and the importance of flexible and person-centred research approaches.
RECOMMENDATIONS FOR FUTURE RESEARCH
Future research should:
• Include larger numbers of participants.
• Explore the experiences of family carers.
• Improve ways of identifying people who may need additional social support.
• Develop support services that address social as well as physical needs during cancer treatment.
• Better understand how social support influences treatment experiences and outcomes.WHERE CAN I LEARN MORE ABOUT THIS STUDY?
Further information will be available through the University of Salford repository and future publications arising from this research.REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
23/NE/0013
Date of REC Opinion
24 Jan 2023
REC opinion
Favourable Opinion