Patient/ Family Involvement

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.

Introduction

When COVID-19 first entered our world in March 2020 and the country went into lock down the NHS braced itself for one of its biggest challenges of this century. Older, frail patients were in the highest risk group, with those in care homes not only at higher risk of death, but higher risk of contracting COVID-19, often suffering more psychological disturbances (Hewitt et al., 2020; Numbers & Brodaty, 2021). This study was conceived by two nurse researchers working throughout the pandemic on a COVID ward for predominantly older people, aiming to capture the experiences of patients, families/carers and staff members.

Methods 

Phenomenology was the most appropriate methodology to provide an in-depth lived experience perspective. Full ethical approval was obtained and participants were sampled purposively. In-depth unstructured interviews were conducted and transcribed in full before being analysed hermeneutically using the four steps outlined by Fleming et al. (2003).

Results 

30 participants were recruited (10 patients, 10 relatives, including several bereaved and 10 staff members). Whilst experience varied between and within groups, core themes emerged:

1. Communication difficulties were poignantly expressed, with staff acting as intermediaries between patients and their family members who were kept apart through visiting restrictions, whilst managing clinical care and their own emotional responses.

2. Challenges of care were experienced by all groups, with anxiety around contagion conflicting with feelings of guilt and long-term psychological impact described by staff.

3. Collective experiences of grief and loss were described as participants grappled with coming to terms with encountering death and dying on an unprecedented scale and under such extraordinary conditions.

Conclusion

This study adds to the growing evidence base around experience of the COVID pandemic, adding insight into the triangulated experience of those affected and highlighting the profound effect on patients, relatives and staff.

Background and Aim: Falls are a significant public health concern, with literature primarily concentrating on older adults due to their perceived higher fall risk. However, recent studies indicate similar prevalence rates of fall-related injuries between older adults (>65 years) and middle-aged adults. Despite this, there is a scarcity of literature examining the differences in experiences of falls and concerns about falling between middle-aged adults and older adults who have experienced falls. The COVID-19 pandemic and the resulting lockdown measures created an unprecedented setting to explore these experiences due to the unexpected period of physical deconditioning and heightened risk of falling among adults aged 50 and above. This current qualitative study aimed to evaluate the variations in falls and concerns about falling among middle-aged and older adults during the pandemic. Methods: Semi-structured interviews were conducted with 10 middle-aged fallers (Mage = 59 years) and 10 older fallers (Mage = 73 years), following an online falls survey. All participants had experienced one or more injurious fall(s) during the COVID-19 pandemic. Reflexive thematic analysis was used to analyse the transcribed interview data. Results: Both middle-aged and older adults demonstrated a level of age acceptance and vulnerability to falls. These experiences prompted older adults to adopt protective behavioural adaptations, while middle-aged adults potentially adopted maladaptive behavioural adaptations in situations that posed balance threats. The pandemic restrictions affected both middle-aged and older adults similarly, with reports of both groups experiencing changes in physical activity levels. Conclusion: These findings provide a new perspective on the disparities in falling experiences and concerns about falling between middle-aged and older adults during the COVID-19 pandemic. They highlight the significance of investigating concerns about falling from middle age (>45 years) to help develop intervention strategies that mitigate detrimental outcomes in later stages of life.

During the pandemic, diagnosing Dementia has declined significantly by over 35%. A Collateral history refers to information obtained from individuals other than the patient, such as family members, friends, or caregivers. This information is often crucial and can provide valuable insights into a patient's medical history, symptoms, behaviours, and social circumstances. Studies have proven a collateral history can enhance medical assessment, improve treatment planning, aids safety concerns and act as a diagnostic aid. By obtaining information from multiple sources, Doctors can compare the patient's account with the observations and experiences of others. This can help in corroborating or identifying discrepancies, leading to a more accurate diagnosis. 

A convenient sample of 20 patients investigating the benefit of a collateral history using it as enhanced information to aid diagnosis of dementia earlier, and in turn, commencing treatment earlier.  

Results showed the collateral history provided more information enabling diagnosis of a delirium or a diagnosis of dementia. If it appeared the diagnosis was dementia, the information was relayed in a multiple disciplinary approach and with multidisciplinary agreement, treatment commenced. 

Early diagnosis of dementia is crucial as it allows for timely intervention, better disease management, and improved quality of life for both patients and their families. Collateral history aids in this process by capturing subtle changes in cognition and behaviour that may not be evident during routine clinical assessments. It provides a broader perspective on the patient's functioning over time and helps differentiate between normal aging and pathological cognitive decline. 

It is important to consider the collateral history limitations as a tool and use it in conjunction with other diagnostic tools to ensure an accurate and comprehensive evaluation.  

Introduction

The term ‘frailty’ is increasingly being used in clinical practice. NHS services established to assess frail older people are described using various names including ‘Frailty Unit’ (FU). Little is known about patient’s self-perception on being frail and their views on the use of these terms and nomenclatures. Following the development of a new FU in the Emergency Quadrant of our DGH, this study was undertaken to assess how elderly in-patients in the unit perceive ‘frailty’ as a concept. Their views on the nomenclature of the unit and the service were also evaluated.

Methods

A semi-structured qualitative interview was conducted on in-patients in the FU after medical optimisation of their condition and prior to discharge. Those with communication barriers and lacking mental capacity to participate were excluded. Frailty severity was assessed using the Edmonton Frail Scale (EFS).

Results

20 patients were interviewed (mean age 84 years; range 75-98; 65% females). EFS classified patients (n) as ‘not frail’ (2), ‘vulnerable’ (7), ‘mild frailty’ (4), ‘moderate frailty’ (4) and ‘severe frailty’ (3). There was no correlation between age and presence of frailty on EFS. Only 5 (25%) considered themselves as frail compared to 55% deemed to be frail on EFS. Only 28.6% with moderate to severe frailty on EFS considered themselves as frail. 40% disapproved the nomenclature ‘Frailty Unit’ due to its negative connotation despite overall satisfaction with the service. Majority (85%) were happy to discuss the concept of frailty and strategies to manage it.

Conclusion

Identification of frailty on EFS may not necessarily correlate with the patient’s self-perception of being frail. Though the term frailty and frailty unit may be perceived as negative by some patients, this did not correlate with their service experience. Clinicians must take the opportunity to discuss the concept of frailty openly with patients including management strategies.

Background Acutely unwell hospitalised older people have better outcomes including mortality and functional status when CGA (Comprehensive Geriatric Assessment) is performed. A previous complaint, escalated to the Scottish Public Services Ombudsman, highlighted issues with CGA documentation and recording MDT discussion. This pilot project’s aim was to create a method for documenting CGA MDT plans and to embed this as routine practice for all inpatients on a Geriatrics ward. Method Following consultation with staff on this ward, a sticker was developed detailing status of medical and therapy input, planned discharge date and likely required support on discharge to evidence MDT discussion. This was completed weekly at the boardround for each patient. The stickers were implemented over a 2-week roll-out phase, and use (and completion) of stickers were compared to a 2-week period approximately 1 month later. Feedback from ward staff was also collected via questionnaires. Results Initially, 98% of patients had a sticker completed (n=49/50) and 86% of all required information was documented (n=43/50). For the second round of data collection this fell to an 18% completion rate (n=7/38). Ward staff interviewed were aware of the stickers and felt they improved CGA communication (n=100%, n=8/8). Suggestions for improvement included an option to record whether families were updated, clearer options for discharge status and reasons why a patient may not have received occupational or physiotherapy. Conclusion The CGA board round sticker was a positively received, simple and effective intervention to improve documentation. It addressed an area which had been highlighted as requiring improvement. As expected, initial completion rates were high but rotation of staff impacted on subsequent completion rates. Establishing this as routine practice will be challenging but permanent staff present at the boardround will facilitate allocation of this task and a poster highlighting this process has been displayed on the ward.

Introduction:

The need to develop and evaluate frailty-related interventions is becoming more pertinent as life expectancy increases. Patient-reported outcome measures (PROMs) are arguably essential in this field of research, and can be defined as “any report of the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else” (FDA 2009). Numerous validated questionnaires can be classed as PROMs, but seem inconsistently used, and of uncertain relevance to/for those living with frailty. This rapid review aimed to identify existing PROMs used in research with older people living with frailty.

Method:

PubMed and Cochrane were searched (up to 24/11/22). Inclusion criteria were quantitative studies, use of a PROM, and either measurement of frailty or inclusion of older adults as participants. Distinguishing PROMs from questionnaire-based clinical assessments was necessary, and criteria were created to do this. 197 records were screened. PROMs were categorised according to the domain they assess, based on a standard set of health outcome measures for older people (Akpan et al, 2018).

Results:

90 studies were included. 119 unique PROMs were used 289 times, most frequently the SF-36 (n=23), EQ-5D (n=21) and Barthel Index (n=14). The most frequently assessed outcome domains included “Mood and Emotional Health”, and “Activities of Daily Living”. Outcome domains with fewer usages included “Participation in Decision Making” and “Carer Burden”.

Conclusions:

PROM usage in frailty research is highly heterogeneous. The most frequently used PROMs omit outcomes that are important to people with frailty (e.g. Akpan et al 2018, Herrler et al 2021, Mayo et al 2022). Further research should investigate the importance of specific outcomes (and thus identify particularly relevant PROMs) to people living at different stages of frailty severity. More consistency of PROM use could facilitate evaluation of different frailty interventions.

Introduction: Medication non-adherence is estimated to cost the NHS >£500 million a year in preventable morbidity, mortality and health service use. Multi-compartment medication compliance aids (MCAs) are provided in an effort to promote adherence, despite opposing recommendations from NICE and the Royal Pharmaceutical Society. This study aimed to understand the views of patients and carers of MCAs, including those who have declined or discontinued the use of a pharmacy-filled medication compliance aid (pMCA).

Method: A researcher-administered questionnaire survey of older adults (“users”) and carers, who used, declined or discontinued a pMCA. Participants were recruited from inpatient, outpatient and community services at a central London NHS trust. Thematic analysis was conducted by two independent researchers to identify overarching themes.

Results: 88 users and 88 carers were interviewed. The majority of pMCAs were started by healthcare professionals or requested by the carer due to polypharmacy. 12 of 61 users (20%) did not know why a pMCA had been provided, with only 6 requesting the aid themselves. 5 (8%) current pMCA users considered returning to taking medicines from their original packaging. Themes common to both groups included polypharmacy and poor product design. A theme identified solely in the patient group was autonomy and independence, while carers commented on time, waste and sustainability, and responsibility and associated mistakes. For the most part, carers and users perceived MCAs as useful tools to assist medication adherence.

Conclusion: pMCAs are often issued to manage complex medication regimens which are cognitively overwhelming, sometimes at the expense of patient autonomy. Healthcare professionals should aim to reduce the need for pMCAs through individualised medication reviews and rationalisation and improvement of pathways to obtain medicines. If their use is unavoidable, the design of the product and healthcare systems surrounding their use should be optimised to improve the user experience.

Introduction

There is relatively little known about physical health of older people who are unpaid carers. The English Longitudinal Study of Ageing (ELSA) Wave 9 (2019) was used to examine the relationship between unpaid caring and health. This study contains information on frailty, caring, comorbidities and Instrumental Activities of Daily Living (IADL) from 8,736 participants 50 years and over.

Methods

We included participants who received a nurse visit in Wave 9 (n=3,047), 21 were excluded due to missing data. Frailty was calculated using the ELSA-Frailty Index (FI). Carers were those in receipt of Carers Allowance or self-reported unpaid caring.

Results

351 carers and 2675 non-carers were included. Carers were younger (64.5 (10.2) vs 66.7 (10.5), p<.001) and more likely to be married (78.1% vs 62.8%, p<0.001). carers had a lower median fi score (0.07 (0.04-0.14) 0.15 (0.12-0.21), p="0.000)" however, 45 />536(8%) of moderately and severely frail participants were carers. Of 966 non-frail (FI <.12) participants: 9 />246(2.6%) carers experienced difficulties with IADLs, compared to 5/720(0.69%) non-carers; 79/246(31%) of carers had impaired mobility, compared to 39/720(5%) of non-carer; and 51/246(20%) had 2+ comorbidities, compared to 17/720(2.4%) non-carers. Of 1524 mildly frail (FI>0.12-0.24) participants: 16/60(26.7%) carers experienced difficulties with IADLs, compared to 116/1464(0.69%) non-carers; 58/60(97%) of carers had impaired mobility, compared to 807/1464(55%) non-carers; and 42/60(70%) had 2+ comorbidities, compared to 607/1464(41.4%) non-carers. On frailty-adjusted multivariable analysis there was a strong association between carer status and comorbidities with Odds Ratio (OR)3.01 (95%CI 2.21-4.10); impaired mobility, OR 11.08 (95%CI7.52-16.32); and impaired IADLs, OR 5.44(95%CI3.48-8.48)

Conclusions

Carers are less likely to be frail but more likely to struggle with at least one IADL, experience comorbidity or mobility impairment than equivalently frail peers. This suggests that, in the over 50s, either caring contributes to impairment or the burden of care falls on the more impaired.