Patient/ Family Involvement

Introduction 

Shared decision making (SDM) is a vital element in ensuring a more personalised approach to care.  The Peri-operative Care of Older People in Surgery (POPS) Team adopts enhanced SDM in frail patients referred for elective urological or colorectal surgery using the BRAN (benefits, risks, alternatives, nothing) approach. In frail populations, there is a complex balance between providing appropriate access to surgery and minimising exposure to potentially harmful procedures. SDM can help to negotiate this balance. This study aimed to evaluate the patient perception of the SDM process.  

Method 

Patients and/or their family proxy attending the POPS clinic between December 2023 – March 2024 were invited to participate in a follow-up telephone interview. The content of the interview was based on the CollaboRATE tool, a quick 3-question, validated questionnaire used for evaluating SDM from the patient’s perspective.  

Results 

Overall, 22 out of 29 (76%) consenting patients and/or their proxy were contactable and well enough to participate in the CollaboRATE evaluation.  

All (n=22, 100%) reported that the POPS team had made ‘a lot’ or ’every’ effort in helping them understand their health issues and listening to what mattered most to them. 86% (n=19) thought they had made ‘a lot’ or ‘every’ effort to include what mattered most to them in deciding what to do next. Patients/proxies were also able to add unstructured comments which were also positive: 

 ‘the staff were excellent - my husband transformed in front of my eyes, he was so happy with the decision.’ 

Conclusion 

The SDM process within the POPS clinic is highly rated and valued by the patients.  Considering that SDM also reduced the number who opted for surgery by 30% (April – July 2023; 9 out of 30 chose not to have surgery), it can offer added value to the individual and the wider system. 

People from ethnic minorities face additional challenges in hospital. These contribute to poorer progress and outcomes. We set out to develop an online resource to help hip fracture teams provide answers to questions commonly posed by people presenting with hip fracture, and to address inequalities in patients’ and their families’ access to information. Method In 2021 we surveyed all 167 hospitals in England, Wales, and Northern Ireland which look after people with hip fracture – to identify which provided printed or digital information, and which made this available in languages appropriate to their local population. Results Most hospitals (70%) claimed that they routinely provided printed information about injury, surgery and recovery, but only 26% could say that they provided this in languages appropriate to their local population. The equivalent figures for digital forms of information were 23% and just 10%. We produced, piloted and finalised an English language template in discussion with people attending our hospital. Initial Google translations of this were circulated to clinicians within our department who were familiar with this patient group and able to read, edit and sign off versions in other languages. We surveyed these editors and 71% described the final document as highly useful. However, nearly two-thirds had identified limitations in the Google draft and 50% reported needing to modify technical elements of the text. One-third (36%) spent more than two hours editing the text to a form they felt would be accessible to patients. Conclusion We would recommend this approach to those working with other conditions and other patient groups, as there is clearly a need for information to meet the needs of the patient. We plan to extend our portfolio of 19 languages (the first languages of >3 million people in the UK alone) in collaboration with clinicians fluent in other languages.

Background

Delirium is associated with psychological and cognitive complications that have impacts beyond the patients. Although family members and carers can play a significant role in the management and recognition of delirium, there is limited research on the experience of family caregivers in the context of delirium. This study aims to explore the needs and experiences of family caregivers for a person with delirium and offer suggestions to support them.

Method

A qualitative interview study with family caregivers of persons with delirium. Data were analysed using an abductive analysis approach.

Results

Fourteen family caregivers were interviewed. Carers explained their feeling of responsibility to support their loved ones with delirium, however, they perceived their caregiving role negatively because of increasing demands and the lack of sufficient support. Carers attributed their emotional exhaustion and distress to the onset of delirium, change in the personality of the person with delirium, confusion and progression of delirium. Additionally, carers indicated the negative impact of caregiving on the quality of the relationship between them and person with delirium. This highlights the need to enhance the support provided to carers to mitigate the emotional and relationship impact of caregiving on the carer. We identified needs of carers for people with delirium including: education on delirium, reassurance, information on care pathways and support from formal carers to take breaks.

Conclusions

Viable solutions to assist family caregivers include more support for the carer in formulating care plans for people with delirium, development of support groups for family caregivers of people with delirium, and a case worker. These solutions may help to decrease re-hospitalisation and admission to care homes. Future research should focus on approaches to better support carers of people with delirium, and to shift the care plan from person-centred into person and family-centred approach.

Introduction

Transition is potentially a stressful incident to individuals as it requires major life adjustment. Older residents living in a nursing home consider it as their last place of life. When the older residents have to be relocated to a new nursing home, they inevitably face a significant transition due to their high dependency on the physical, psychological, and social needs. There is limited empirical evidence revealing the experiences of older residents who anticipate a transition from the existing nursing home to a new nursing home, thereby hampering our understanding of their needs and limiting the health care professionals, families, and friends to provide appropriate support in such major life event. The aim of this study is to explore the experiences of older residents in anticipation of transitioning to a new nursing home.

Method

A descriptive qualitative approach was adopted. Thirty older residents who were going to be relocated from the existing nursing home to a new nursing home were recruited through purposive sampling. Semi-structured interviews, each lasted for around 30-minute, were conducted and audio-taped. Data were analysed through thematic analysis.

Results

Experiences of older residents were summarised in four themes, namely preparing for the transition, having expectations on the new living environment, worrying about changes in daily living, and valuing the support from others. In general, the older residents viewed the transition positively and perceived well-prepared for the transition. Such positive experience was mainly due to the support provided by nursing home staff and families before the transition took place.

Conclusion

The findings significantly expanded our understanding on the experiences of older residents in anticipation of transitioning to a new nursing home, which is largely absent from empirical evidence.

Acknowledgement

The work described in this paper was fully supported by Hong Kong Metropolitan University Research Grant (No. RD/2023/1.18).

Introduction: A BMJ study suggested that 1 in 5 sick, older patients have a ‘do not resuscitate’ document and a large proportion only had this completed in the Emergency Department (ED) (1). Current ED pressures could cause greater delay in this discussion, resulting in inappropriate cardiopulmonary resuscitation (CPR). The ReSPECT form was established to bring consistency to the communication of patients wishes, including ‘do not attempt CPR’ (DNACPR) (2). This QUIP assessed the incidence of inappropriate CPR in two ED’s by investigating the proportion of CPR performed on those with a prior DNACPR or ReSPECT form.

Method:

Data was collected retrospectively from cardiac arrests in two ED’s between the 1st of January 2023 and the 17th of November 2023. The three parameters assessed were the number patients undergoing CPR, number with prior DNACPR/ReSPECT forms, and how often CPR occurred within 30 minutes of patient arrival. Hospital A used ReSPECT forms, whereas Hospital B did not.

Results:

Over the assessed period, CPR was performed on 21 patients at Hospital A. Of these, 19% had prior DNACPR/ReSPECT forms and 43% of CPR was within 30 minutes of patient arrival. 10 patients received CPR at Hospital B. Of these, 0 patients had prior DNACPR/ReSPECT forms and 40% of CPR occurred within 30 minutes of patient arrival.

Conclusion:

Hospital A performed CPR on more patients with prior DNACPRs compared to hospital B. Occasionally, these DNACPRs were on the GP portal but were not easily accessible in the hospital setting due to the hospital’s paper-based notes system. Both sites performed CPR on a similar proportion of patients within 30 minutes of admission. This highlights the importance of prompt decisions, communication and the need for community discussion with documentation that is easily accessible across healthcare settings.

Swansea is one of oldest cities by population in the UK (more than 1 in 5 people over 65) leading to an increasing number of frail patients and has a high prevalence of Welsh speakers in the over 65 age group 12% of Swansea Bay employees identify as speaking Welsh.

The Welsh language act awarded equal status to both English and Welsh, encouraging public bodies to publish official documents bilingually.As part of our work in developing frailty screening for elective surgical patients we use the clinical frailty score (CFS) and noted there was not a Welsh language version available. As we are hoping to progress to patients completing the score independently it was clear this was important.

Method

The Bayways Frailty alliance created a version of the CFS in Welsh which followed the same format, was visually appealing and clinically correct. We showed this to both Welsh speaking clinicians of various specialities and allied health professionals; we also shared it with Welsh speaking members of the public who were not clinicians to gain feedback.

Finally we gained approval from Dr Rookwood and his team for this official translation.

Results

There was widespread support for this from both clinicians and non-clinical members of the public. They felt the Welsh was easy to understand and professional. Clinical staff felt empowered that a part of their culture was now part of the workplace.

Conclusion

This valuable piece of work will now be made widely available and encourages changes such as this going forward in keeping with the Welsh Government policies. Alongside that the widespread positive feedback from both clinical staff and patients speaks for itself.

This Quality Improvement Project (QIP) addresses the pressing need for increased awareness of delirium among patients' relatives. With a 26% rise in the elderly population in Cambridgeshire, surpassing the 18.6% national average, the project aimed to provide crucial information to enhance understanding and support for patients grappling with delirium, a condition affecting up to 50% of elderly hospital patients. This prospective study was conducted across seven geriatric wards at Cambridge University Hospital (CUH). Baseline measurements utilized existing data on CUH Delirium website views and involved collecting surveys to explore delirium awareness among total of 26 randomly selected subjects who were relatives of patients. To establish a baseline for comparison between pre- and post-intervention data, specific durations were selected in different calendar years (5/4/2022 - 18/7/2022 and 4/4/2023 - 17/7/2023). Interventions included strategically placing redesigned CUH Delirium Posters with QR codes across wards, along with awareness campaigns targeting healthcare professionals, including Dementia and Delirium Champion Training. Pre- and post-intervention questionnaires showed up to 10 -20% increment in respondents' awareness, understanding, and interest in delirium. Post-intervention, website views surged by 132%, indicating the effectiveness of the multifaceted approach. Key findings highlighted the importance of laminated posters, strategic placement based on staff feedback, and the necessity for detailed data on website visits. Future recommendations include continuous monitoring, content evaluation, and strategies to address poster removal. Suggested actions involve sustained monitoring, collecting qualitative feedback, and ongoing efforts to enhance understanding of delirium care. In conclusion, this QIP serves as a successful model for increasing delirium awareness, addressing challenges through adaptability and sustained engagement. The positive impact on awareness and website engagement sets a precedent for future healthcare quality improvement initiatives, fostering continued progress in delirium care and understanding among elderly patients and their relatives

Introduction: Reducing inappropriate polypharmacy is a major public health goal and deprescribing is considered one potential solution. Although patient attitudes towards deprescribing have been well studied, little consideration has been given to the informal caregiver perspective, how this differs from the views of patients and how that might influence care.

Method: A survey including demographic questions and the revised Patients’ Attitude Towards Deprescribing (rPATD) questionnaire was undertaken. The primary outcome was to identify the willingness of respondents to deprescribe. This survey was distributed as online, telephone or paper versions, via social media, community centres, day care centres, local organisations, and personal networks. It had two sections composed of equivalent questions: one for the ‘patient’ (age 65+, based in England, taking one or more prescription medication) and one for their ‘informal caregiver’ (age 18+). Data were analysed using descriptive statistics and binomial logistic regression.

Results: After exclusion of ineligible respondents, a total of 1,307 survey responses were received (861 patients and 446 caregivers). The average patient was 76±9 years, female (526; 61.6%), white (831; 97%), and educated to degree level (482; 56.9%). The average informal caregiver was 73±14 years, female (278; 62.9%), white (426; 96.4%) and educated to degree level (258; 58.2%). A total of 77.1% patients agreed that they were willing to deprescribe medications if their doctor said it was possible. In contrast, significantly fewer informal caregivers were happy for their patient to have medications deprescribed (59.7%; p-value for difference <0.001). Trust in physician, concerns about stopping medication and belief in the appropriateness of withdrawal were all associated with respondent willingness to deprescribe.

Conclusion: This large study suggests patients are more willing to deprescribe than their informal caregivers. Better understanding these attitudes and how they differ between patients and caregivers, will help inform interventions to improve involvement in medication-related decisions.

Introduction

Patient and Public involvement is a cornerstone of the DREAM (Digital and Remote Enhancements for the Assessment and Management of older people) project. An advisory group of 10 diverse older people and carers was established to shape the research through regular discussions and explore inclusive involvement approaches for future work.

Methods

We conducted a reflective process evaluation to highlight the impact of the involvement process on the project and our public partners themselves. We collated impact logs, reflections and feedback from our public partners and an artist recorded the impacts using illustration.

Results

The advisory group:

• helped to lay the foundations of the project and steered its development with their views, knowledge and experiences
• shaped how evidence is captured and analysed so that it is usable, acceptable and makes sense to older people and carers
• provided insights to consider for implementation and shaped our dissemination strategy

Our public partners and researchers also expressed relational impacts such as shared ownership. Public partners joined this project to improve health care for other people. They felt safe to share their experiences and be listened to. It gave them confidence in their health management, and they have built friendships. People also found comfort in the diversity of individuals and sharing common concerns.

Conclusion(s)

Public partners have been instrumental in the development of the DREAM project and supported the programme by being a critical friend beyond the remit of the research. Continued communication and feedback resulted in public partners feeling heard and their suggestions acted upon.  Researchers and public partners felt gratitude, ownership and joy working on this project, and finding shared values. Our involvement approaches have shaped reciprocal relationships and had impact on our research culture, forming a foundation to the values of the people it is serving.

Introduction: Meaningful involvement of experts by experience in the design of health and care research is now well-established as good practice (Staniszewska, 2018). For example, it is essential that the voices of residents and staff are properly heard in care homes research, since they provide important perspectives not necessarily shared by the wider multidisciplinary team (Shepherd et al. 2017). Nevertheless, there are concerns that involvement can be tokenistic, or vulnerable to power imbalances (Baines & de Bere, 2017; Jennings et al., 2018).

Methods: A care home in north east England is working with researchers to pioneer a new approach to involvement, with residents and staff at the centre. The care home has helped to shape a number of research projects, for example a feasibility study of mealtime care training. In this study, an advisory group was set up initially within the care home itself, comprising residents, staff and family carers. Subsequently the group was joined by people from other care homes in the area, with support from the local authority. In parallel to this, health and social care professionals have contributed to the advisory group through one-to-one meetings with the researcher.

Results: Advisory group meetings in the care home have provided an inclusive and equitable platform for residents and staff to share their views on the research topic and design. Other stakeholders have been able to input into the project, but separately and in a way that has left room for key voices to be properly heard. Contributors have felt valued and are keen to continue in the process.

Conclusions: This study offers an alternative and authentic model for the involvement of experts by experience in social care research, inverting the more typical approach so that residents and staff are at the centre not the periphery.