'Am I still here?': A longitudinal, ethnographic study of living with frailty

Purpose: To explore how older people with complex problems experience and make sense of frailty in their daily lives. Relevance: Frail older people have complex care and support needs that are currently challenging the health and social care system. There is a need for more appropriate models of service provision that can deliver personalised care for frail older people. Although there is an increasing body of literature that has explored the concept of frailty from a biomedical and functional perspective, there is a lack of research-based evidence exploring the personal experience of frailty from an older person’s perspective. Study design: A prospective, longitudinal, ethnographic case study design was adopted. Ten cases were studied over a period of two and a half years. Each case comprised an older person, a community matron and a significant other, such as a daughter. Cases were followed up monthly for a minimum of six months or until death. In total, 56 care visits between an older participant and their community matron were observed and 54 interviews were conducted with older people. Medical and nursing documents were reviewed for each case. A narrative approach to data analysis was undertaken, with identification of common themes within and across cases. Findings: Three themes illuminated the experience of living with frailty. ‘Transitions in health and illness’ details how the older people in this study experienced transitions in health and illness in later life. ‘Dimensions of frailty’ reports perceptions of frailty in later life and accounts of how feeling frail relate to episodes of uncertainty. ‘The provision of health and social care – rhetoric and reality’ explores the inter-relationship between the older person’s world of declining health and the episodic interactions with health professionals. Conclusions: This study offers a number of original contributions to the body of knowledge pertaining to the personal experience of frailty. First, new insights into the interrelationship between frailty and transitions in health and illness have been revealed, particularly how transitions in health and illness contribute to and shape the experience of frailty. Second, frail older people experience temporary moments of ‘liminality’ which are expressed as uncertainty and/or feeling frail. It is in these situations where there is real therapeutic potential in exploring the emotional experiences linked to a frail older person’s interpretation of events. Third, there are challenges to engaging in partnership working with frail older people. In some circumstances frail older people can exercise autonomy and make decisions that are relevant to their own situation. However, often community matrons’ work is framed by a policy of clinical assessment and therefore at times assumptions underpinning the label of frailty can challenge partnership working. These competing demands need to be considered by policy makers, commissioners and providers of community services and practitioners alike. Only then can effective supportive care services be delivered to frail older people

Development of a Dysphagia Management Protocol for Older Residents in a Care Home Setting. (abstract only)

Purpose: The aim of this study is to develop a co-designed dysphagia management protocol for older residents living in a care home setting. Method: A qualitative study is being conducted within four care homes in a region in the North of England; these were purposively selected to ensure representation of a range of care models across the care home sector. A literature search was conducted to establish good practice in the management of dysphagia in care homes. The findings from the literature review informed the development of semi-structured interview/focus group guides. Eight focus groups have been conducted with 40 members of the nursing and care assistant team and semi-structured interviews conducted with four nursing home managers. These have explored the assessment and management of dysphagia and the barriers and opportunities for improvement in dysphagia management. Interviews will also be conducted with residents (n=16) and nominated relatives, and quality managers (n=4). The interview and focus group data are being analyzed using the Framework Approach. Results: The literature review and preliminary data analysis suggest the following emerging themes: Lack of integrated approaches to education and training; Enablers and barriers to effective dysphagia management; Impact of relationship with other health care professionals on dysphagia management. Conclusion: These findings will lead to the co-design of a protocol for optimizing nutrition and hydration which is based on evidence and best practice principles and which can be adopted in the care home setting. This protocol will be produced by January 2018. The study has been funded by the Abbeyfield Foundation

The influence of perceptions of frailty on treatment decision making in older people with lung cancer: a qualitative study (Abstract only)

Background Currently there is little research exploring the influence of perceptions of frailty on patients' or clinicians' decisions regarding treatment for older people with lung cancer. Existing research has identified that age is associated with variation in treatment and access to clinical trials. Multiple factors have also been found to influence treatment decision making among older people, including the oncologist's recommendations (Puts et al.2015). Frailty assessment tools have been developed that have the potential to support treatment decision making (Clegg et al. 2016) but their applicability to older people with lung cancer has not been explored. Aims To explore the perspectives of older people and healthcare staff on the influence of frailty on treatment decision making in lung cancer. Methods A prospective qualitative exploratory study was undertaken. Between September 2018 and April 2019 semi-structured interviews were conducted with older patients with lung cancer (n=10); and a range of health care professionals (n=12) including respiratory physicians, clinical nurse specialists and oncologists. The data were audio-recorded, transcribed verbatim and analysed using Framework Analysis. Results Three themes were identified. Perceptions of frailty: illustrates how participants viewed frailty and its relevance to their treatment. Decision making conversations: details the diverse factors that influence treatments offered and their uptake. Aspects of service delivery: considers the wider context in which treatment decisions are made and its influence upon decision making among clinicians and older service users. Discussion Our study revealed that perceptions of frailty often influenced treatment decisions made by and for older people with lung cancer. However, diverse factors were also important, including how patients perceive themselves in relation to dimensions of frailty and the perspectives of healthcare staff on the clinical utility of assessment tools. Conclusion This study identified diverse factors which may influence the acceptability and adoption of frailty assessment in practice

'Am I still here?': A longitudinal, ethnographic study of living with frailty

Purpose: To explore how older people with complex problems experience and make sense of frailty in their daily lives. Relevance: Frail older people have complex care and support needs that are currently challenging the health and social care system. There is a need for more appropriate models of service provision that can deliver personalised care for frail older people. Although there is an increasing body of literature that has explored the concept of frailty from a biomedical and functional perspective, there is a lack of research-based evidence exploring the personal experience of frailty from an older person’s perspective. Study design: A prospective, longitudinal, ethnographic case study design was adopted. Ten cases were studied over a period of two and a half years. Each case comprised an older person, a community matron and a significant other, such as a daughter. Cases were followed up monthly for a minimum of six months or until death. In total, 56 care visits between an older participant and their community matron were observed and 54 interviews were conducted with older people. Medical and nursing documents were reviewed for each case. A narrative approach to data analysis was undertaken, with identification of common themes within and across cases. Findings: Three themes illuminated the experience of living with frailty. ‘Transitions in health and illness’ details how the older people in this study experienced transitions in health and illness in later life. ‘Dimensions of frailty’ reports perceptions of frailty in later life and accounts of how feeling frail relate to episodes of uncertainty. ‘The provision of health and social care – rhetoric and reality’ explores the inter-relationship between the older person’s world of declining health and the episodic interactions with health professionals. Conclusions: This study offers a number of original contributions to the body of knowledge pertaining to the personal experience of frailty. First, new insights into the interrelationship between frailty and transitions in health and illness have been revealed, particularly how transitions in health and illness contribute to and shape the experience of frailty. Second, frail older people experience temporary moments of ‘liminality’ which are expressed as uncertainty and/or feeling frail. It is in these situations where there is real therapeutic potential in exploring the emotional experiences linked to a frail older person’s interpretation of events. Third, there are challenges to engaging in partnership working with frail older people. In some circumstances frail older people can exercise autonomy and make decisions that are relevant to their own situation. However, often community matrons’ work is framed by a policy of clinical assessment and therefore at times assumptions underpinning the label of frailty can challenge partnership working. These competing demands need to be considered by policy makers, commissioners and providers of community services and practitioners alike. Only then can effective supportive care services be delivered to frail older people

A consensus based approach to the development of a digital dysphagia management guide for care homes (abstract only)

Background Dysphagia (difficulty swallowing) is common in older people. Up to 75% of residents in nursing homes have swallowing difficulties. Effective management of dysphagia is complex and multi-dimensional. Without proper understanding of what is needed residents’ health and well-being are compromised. An integrated whole systems approach across both catering and clinical services is required. Aim To develop and evaluate an evidence based digital guide to effectively manage dysphagia in care homes. Study Design A consensus based, co-design approach was used to: Examine the evidence-base, views of residents, staff and company representatives to better understand management and shared decision-making in dysphagia care. Co-design a digital guide that promotes adoption of best practice. Conduct a validation process of the guide. Findings A purposive sample of four homes were recruited. Eight focus groups were conducted with 37 members of the workforce and individual semi-structured interviews were carried out with 4 care home managers, 4 quality managers and 6 residents. Analysis determined four key themes around good practice: Training, Food, Quality and Safety, and Workforce. Themes were used to design a digital guide incorporating text, photographs and videos, to enable staff to use the evidence to support their residents to eat and drink safely. The Guide was piloted by 57 staff over 12 weeks. Remote monitoring of activity showed that pages were displayed a total of 1913 times, with Food as the most viewed section (33%). 73% of people reported the Guide helped them do their job more effectively and 88% would recommend the Guide to others. 90% reported the Guide was easy to use. Discussion Using a co-design approach to the development of a digital guide to support dysphagia management in care homes resulted in a resource which was evaluated positively for content, design and usability. Funding is now being sought for a large scale evaluation

A consensus based approach to the development of a digital dysphagia management guide for care homes (abstract only)

Background Dysphagia (difficulty swallowing) is common in older people. Up to 75% of residents in nursing homes have swallowing difficulties. Effective management of dysphagia is complex and multi-dimensional. Without proper understanding of what is needed residents’ health and well-being are compromised. An integrated whole systems approach across both catering and clinical services is required. Aim To develop and evaluate an evidence based digital guide to effectively manage dysphagia in care homes. Study Design A consensus based, co-design approach was used to: Examine the evidence-base, views of residents, staff and company representatives to better understand management and shared decision-making in dysphagia care. Co-design a digital guide that promotes adoption of best practice. Conduct a validation process of the guide. Findings A purposive sample of four homes were recruited. Eight focus groups were conducted with 37 members of the workforce and individual semi-structured interviews were carried out with 4 care home managers, 4 quality managers and 6 residents. Analysis determined four key themes around good practice: Training, Food, Quality and Safety, and Workforce. Themes were used to design a digital guide incorporating text, photographs and videos, to enable staff to use the evidence to support their residents to eat and drink safely. The Guide was piloted by 57 staff over 12 weeks. Remote monitoring of activity showed that pages were displayed a total of 1913 times, with Food as the most viewed section (33%). 73% of people reported the Guide helped them do their job more effectively and 88% would recommend the Guide to others. 90% reported the Guide was easy to use. Discussion Using a co-design approach to the development of a digital guide to support dysphagia management in care homes resulted in a resource which was evaluated positively for content, design and usability. Funding is now being sought for a large scale evaluation

Frailty and treatment decision making in older people with lung cancer (abstract only)

Background: Currently there is little research exploring patient or clinician treatment decisions among older lung cancer patients. Existing research has confirmed that variation in treatment preferences exist between patients, and between patients and clinicians, that could be influenced by perceptions of age and frailty. Clinician’s concerns about providing certain treatments to patients deemed to be frail may influence an older person’s decisions regarding treatment. This was reported in a recent systematic review 1 identifying the most common factor influencing older adult’s decision to accept or decline cancer treatment was physician recommendation. Method: A prospective qualitative exploratory study was undertaken. Semi-structured interviews conducted with older patients with lung cancer (n=12); and a range of health care professionals (n=12), including respiratory physicians, clinical nurse specialists, oncologists. Data were audio-recorded, transcribed verbatim and analysed using Framework Analysis. Result: Three themes illuminated factors influencing treatment decision making in older people with lung cancer. Perceptions of frailty illustrates how older people were able to recognise dimensions of frailty but did not consider themselves to be frail. For the healthcare professionals, frailty was not universally considered in treatment decision making. Decision making conversations details the multiple factors that facilitate or hinder the process. Aspects of service delivery consider the wider context in which treatment decisions are made. Conclusion: There is merit on drawing on the concept of frailty to inform treatment decision making. In the current climate where the use of standardised tools to assess frailty is being promoted 2,3, we propose incorporating a series of trigger questions to be used alongside existing assessment tools. In so doing there is potential to capture a clearer impression of an older person’s fitness for treatment

Is it feasible to conduct a randomised controlled trial of pretransplant exercise (prehabilitation) for patients with multiple myeloma awaiting autologous haematopoietic stem cell transplantation? Protocol for the PREeMPT study

Introduction While myeloma is an incurable malignancy, developments in disease management have led to increased life expectancy in recent years. Treatment typically involves stem-cell transplantation. Increased survival rates equate to more patients living with the burden of both the disease and its treatment for increasing number of years, rendering myeloma a long-term condition. Evidence exists to demonstrate the benefits of exercise for patients recovering from stem-cell transplantation, and prehabilitation—exercise before treatment—has been shown to be effective in other disease areas. To date there has been no research into prehabilitation in patients with myeloma awaiting transplantation treatment. Our objective is to determine whether it is feasible to conduct a randomised controlled trial into pretransplant exercise for patients with multiple myeloma who are awaiting autologous stem-cell transplantation. Methods and analysis This mixed methods study identifies patients with diagnosis of multiple myeloma who have been assigned to the autologous transplantation list and invites them to participate in six weekly sessions of individualised, supervised exercise while awaiting transplantation. Quantitative data to determine feasibility targets include rates of recruitment, adherence and adverse events, and outcome measures including 6 min walking distance test and quality of life. Qualitative interviews are undertaken with a purposive sample of patients to capture their experiences of the study and the intervention. Ethics and dissemination Ethics committee approval has been obtained. Dissemination will be through open-access publications and presentations and will seek to reach multiprofessional bases as well as patients and carer groups, addressing the widespread interest in this area of research. Trial registration number NCT03135925; Pre-results

Feasibility and benefits of a structured prehabilitation programme prior to autologous stem cell transplantation (ASCT) in patients with myeloma; a prospective feasibility study

Evidence supports the benefits of exercise-based rehabilitation in promoting recovery in myeloma patients following autologous stem-cell transplantation (ASCT). However, ‘prehabilitation’ has never been evaluated prior to ASCT, despite evidence of effectiveness in other cancers. Utilising a mixed method approach the authors investigated the feasibility of a mixed strength and cardiovascular exercise intervention pre-ASCT. Quantitative data were collected to determine feasibility targets; rates of recruitment, adherence and adverse events, including 6 minute walking distance (6MWD) test and patient reported outcome measures (PROMs). Qualitative interviews were undertaken with a purposive sample of patients to capture their experiences of the study and the intervention. The authors recruited 23 patients who attended a mean percentage of 75% scheduled exercise sessions. However, retention rates were limited, with only 14/23 (62%) completing the programme. In these patients, the 6MWD increased from a mean of 346 to 451 m (i.e. by 105 m, 95% CI 62 to 148 m) with no serious adverse events. Whist participants found the exercise programme acceptable and reported improvement in their physical fitness and overall mental health and wellbeing prior to ASCT, the study identified challenges in hospital attendance for the prehabilitation schedule whilst receiving induction or re-induction chemotherapy. Evaluation of digitally-enhanced directed but remote prehabilitation models for this patient group is warranted. Trial registration number NCT0313592