Applying the theory of planned behaviour to understand mental health professionals' intentions to work using a human rights-based approach in acute inpatient settings.

BACKGROUND: There has been a shift to implement human rights-based approaches in acute mental health care due to increasing concerns around quality of care. National Health Service (NHS) Trusts have a legal duty to uphold a person's human rights, therefore it is important to understand what any barriers might be. Using psychological theory may help to develop this understanding. AIM: To test whether the theory of planned behaviour can be an effective model in understanding mental health professionals' intentions to work using a human rights-based approach. METHOD: Participants were recruited from two NHS Trusts in the North West of England. A cross-sectional, survey design was used to examine mental health professionals' intentions to use human rights-based approaches. RESULTS: Multiple regression analyses were performed on the theory of planned behaviour constructs showing that attitude and subjective norm significantly predicted intention. Perceived behavioural control did not add any significant variance, nor any demographic variables. CONCLUSION: There could be factors outside of the individual clinician's control to fully work within a human rights-based framework on acute mental health wards. The theory of planned behaviour offers some understanding, however further development work into measuring human rights outcomes on acute mental health wards is needed.

The role of identity in the experiences of dementia care workers from a minority ethnic background during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Care home staff working during the COVID-19 pandemic experienced higher levels of stress and increased workloads. People from diverse ethnic backgrounds were disproportionately affected by the COVID-19 pandemic. This study explored the identity experiences of care home staff from diverse ethnic backgrounds in the context of working during the COVID-19 pandemic. METHODS: Fourteen semistructured interviews were conducted between May 2021 and April 2022 with ethnic minority care home staff in England, who worked during the pandemic. Participants were recruited using convenience and theoretical sampling. Interviews were conducted via telephone or online platforms. A social constructivist grounded theory methodology was utilised in analysing the data. FINDINGS: Participants described five key processes which facilitated or hindered the impact that their experiences had on their identity: dealing with uncertainty and transitioning into a COVID-19 world; difficult emotions; experiences of discrimination and racism; the response from the care home and societal systems; and the personal vs collective responsibility. When participants' physical and psychological needs went unmet by support structures within the care home and/or society, they experienced a sense of injustice, lack of control and being unvalued or discriminated against by others. CONCLUSIONS: This study highlights the importance of recognising the unique needs of staff from diverse ethnic backgrounds working in care homes and adapting working practices to improve impact on identity, job satisfaction and staff retention. PATIENT AND PUBLIC INVOLVEMENT: One care home worker was involved in developing the topic guide and helping to interpret the findings.

Investigating the Relationship between Fear of Failure and the Delivery of End-of-Life Care: A Questionnaire Study.

OBJECTIVE: To investigate whether fear of failure (FOF) influences a clinician's perception of how confident and comfortable they are in their delivery of end-of-life (EOL) care. METHODS: Cross-sectional questionnaire study with recruitment of physicians and nurses across two large NHS hospital trusts in the UK and national UK professional networks. A total of 104 physicians and 101 specialist nurses across 20 hospital specialities provided data that were analysed using a two-step hierarchical regression. RESULTS: The study validated the PFAI measure for use in medical contexts. Number of EOL conversations, gender, and role were shown to impact confidence and comfortableness with EOL care. Four FOF subscales did show a significant relationship with perceived delivery of EOL care. CONCLUSION: Aspects of FOF can be shown to negatively impact the clinician experience of delivering EOL care. CLINICAL IMPLICATIONS: Further study should explore how FOF develops, populations that are more susceptible, sustaining factors, and its impact on clinical care. Techniques developed to manage FOF in other populations can now be investigated in a medical population.

Physician emotional experience of communication and decision making with end-of-life patients: qualitative studies systematic review.

OBJECTIVE: To explore the emotional experience of physicians in acute settings when encountering end-of-life conversations and decision making. METHOD: Thematic synthesis of qualitative studies. Medline, PsychInfo, PubMed, BNI and CIAHL were searched from 1985 to 2021 for studies published in English. Data extraction was informed by a framework created for assessing methodological quality by Polanin, Pigott, Espelage and Grotpeter (2019) and adapted by Draper et al. (2019). RESULTS: Of 8429 papers identified, 17 were selected for review. Two themes containing 10 subthemes described the emotional and psychological factors impacting the experience of end-of-life care, namely: a tension between desire and ability to communicate end-of-life news, and a conflict of hiding versus revealing self across several practical and emotional contexts. CONCLUSION: Medical training is only a small factor in how well a person copes with end-of-life care and may sometimes feed negative appraisals . Lack of support from senior colleagues, fear of criticism and a sense of perceived failure were linked to lower self-efficacy in end-of-life care. Beyond learning practical skills, physicians benefit from understanding the psychological factors impacting their experience and in building self-efficacy, and observing senior colleagues effectively process strong and difficult emotions. PRACTICAL IMPLICATIONS: Promoting personal reflection and sharing of the experiences encountered in end-of-life care, especially modelled from senior colleagues, may contribute to improvements in competence and reduce the impact of heroism, feelings of failure and avoidance in practice.

Emotional and Mental Wellbeing Following COVID-19 Public Health Measures on People Living With Dementia and Carers.

BACKGROUND: To date, there appears to be no evidence on the longer-term impacts caused by COVID-19 and its related public health restrictions on some of the most vulnerable in our societies. The aim of this research was to explore the change in impact of COVID-19 public health measures on the mental wellbeing of people living with dementia (PLWD) and unpaid carers. METHOD: Semi-structured, follow-up telephone interviews were conducted with PLWD and unpaid carers between June and July 2020. Participants were asked about their experiences of accessing social support services during the pandemic, and the impact of restrictions on their daily lives. RESULTS: 20 interviews were conducted and thematically analyzed, which produced 3 primary themes concerning emotional responses and impact to mental health and wellbeing during the course of the pandemic: 1) Impact on mental health during lockdown, 2) Changes to mental health following easing of public health, and 3) The long-term effect of public health measures. CONCLUSIONS: The findings from this research shed light on the longer-term psychological impacts of the UK Government's public health measures on PLWD and their carers. The loss of social support services was key in impacting this cohort mentally and emotionally, displaying a need for better psychological support, for both carers and PLWD.

Navigating the new normal: accessing community and institutionalised care for dementia during COVID-19.

OBJECTIVES: Little is known about how community services and institutional care settings have adapted to providing support since the COVID-19 pandemic. The aim was to explore how these care services have adapted during the pandemic in the UK and are providing care to people living with dementia (PLWD) and carers. METHOD: Semi-structured telephone interviews were conducted in June and July 2020 with 16 purposefully sampled unpaid dementia carers. Participants were asked about their experiences of accessing care services since the lockdown, and whether they were beneficial, if accessed at all. RESULTS: Three themes were identified: (1) Impacts of no activities; (2) Difficulties accessing care during the pandemic; (3) Remote vs. face-to-face support. Loss of access to previously enjoyed activities and having had to shield for many PLWD is suggested to have led to severe physical and cognitive deteriorations, advancing the dementia. Where remote support was available, this was helpful to some, but did not replace the benefits of face-to-face support. Where PLWD were residing in a care home, carers had very limited remote access. CONCLUSIONS: This is the first study to explore the impact on carers both from a community and institutionalised care angle. Few care services have adapted to providing remote support. With the vaccine taking time to be accessible to everyone, it is vital for organisations to work closely with carers and PLWD to adapt services to provide much needed support.

Resilience and supporting people living with dementia during the time of COVID-19; A qualitative study.

OBJECTIVES: To explore the different factors of resilience for people living with dementia and unpaid carers, in response to sudden changes in care and lifestyle during the COVID-19 pandemic. METHODS: Unpaid carers and people living with dementia were offered telephone interviews in April 2020 to discuss their experiences since the COVID-19 pandemic. Participants were asked about the benefits and challenges of accessing dementia support, as well as coping, symptoms, strategies and impacts. Each transcript was analysed using inductive and deductive thematic analysis by two researchers. FINDINGS: Semi-structured interviews from 50 participants (n = 42 unpaid carers and n = 8 people living with dementia) reported protective and risk factors of resilience concerning (1) communication, (2) adaptations, (3) support networks and (4) lifestyle factors and coping mechanisms. CONCLUSIONS: Resilience factors considered both organisational factors for external support, along with individual coping mechanisms. Organisations and social support services should consider resilience factors in future service planning, to better support people living with dementia, or caring someone living with dementia, during times of great stress. The ecological model of resilience established from this research refers to resilience during times of unexpected change in the COVID-19 pandemic; however, it could be considered relevant in other periods of high stress within this cohort.

The potential dangers of not understanding COVID-19 public health restrictions in dementia: "It's a groundhog day - every single day she does not understand why she can't go out for a walk".

BACKGROUND: Sudden public health restrictions can be difficult to comprehend for people with cognitive deficits. However, these are even more important for them to adhere to due to their increased levels of vulnerability, particularly to COVID-19. With a lack of previous evidence, we explored the understanding and changes in adherence to COVID-19 public health restrictions over time in people living with dementia (PLWD). METHODS: Unpaid carers and PLWD were interviewed over the phone in April 2020, shortly after the nationwide UK lockdown, with a proportion followed up from 24th June to 10th July. Participants were recruited via social care and third sector organisations across the UK, and via social media. FINDINGS: A total of 70 interviews (50 baseline, 20 follow-up) were completed with unpaid carers and PLWD. Five themes emerged: Confusion and limited comprehension; Frustration and burden; Putting oneself in danger; Adherence to restrictions in wider society; (Un) changed perceptions. Most carers reported limited to no understanding of the public health measures in PLWD, causing distress and frustration for both the carer and the PLWD. Due to the lack of understanding, some PLWD put themselves in dangerous situations without adhering to the restrictions. PLWD with cognitive capacity who participated understood the measures and adhered to these. DISCUSSION: In light of the new second wave of the pandemic, public health measures need to be simpler for PLWD to avoid unwilful non-adherence. Society also needs to be more adaptive to the needs of people with cognitive disabilities more widely, as blanket rules cause distress to the lives of those affected by dementia.

"A piece of paper is not the same as having someone to talk to": accessing post-diagnostic dementia care before and since COVID-19 and associated inequalities.

BACKGROUND: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic. METHODS: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis. RESULTS: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines. CONCLUSIONS: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.

COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey.

BACKGROUND: The COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well-being. AIMS: To explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak. METHODS: Unpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being. RESULTS: 377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3. CONCLUSIONS: Access to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic.

The meaning of autonomy when living with dementia: A Q-method investigation.

BACKGROUND AND AIMS: Sensitivity to the rights of people with dementia is a key principle cited in the World Health Organisation's global action plan on dementia. Some critics question whether rights-based approaches embody loose and ill-defined ideas incapable of bringing about meaningful change. Exercising the right to autonomy is considered a core problem for people living with dementia. The tradition of individual sovereignty dominates ideas about autonomy, although the person as an individual is not a cross-culturally universal concept. This study explored the viewpoints of people with dementia and family carers regarding the meaning of autonomy with a view to informing rights-based practice. METHODS: Twenty participants, people living with dementia and family carers, each conducted a Q-sort of statements regarding the meaning of autonomy. A by-person factor analysis was used to identify patterns in how the range of statements about autonomy were ranked. RESULTS: Three factors emerged: retaining independence and self-expression, accepting dependence but being included and opportunity for connection. There was some agreement across these different views regarding the importance of being given time to think before making decisions and being kept active. CONCLUSIONS: This study highlights the need for a person-centred approach to supporting people with dementia to claim their rights and the importance of adopting a stance of curiosity and critical thinking in rights-based training and professional practice. The findings suggest a variety of meaningful stories of autonomy and the possibility of further developing existing rights-based frameworks for dementia care.

Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study.

OBJECTIVES: Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. METHOD: PLWD and unpaid carers were interviewed via telephone in April 2020. Transcripts were analysed using thematic analysis. Demographic characteristics including household Index of Multiple Deprivation score and weekly hours of social support service usage before and since the COVID-19 outbreak were also collected. Paired samples t-tests was used to compare the mean of weekly hours of social support service usage before and since the outbreak. RESULTS: 50 semi-structured interviews were conducted with unpaid carers (n = 42) and PLWD (n = 8). There was a significant reduction in social support service usage since the outbreak. Thematic analysis identified three overarching themes: (1) Loss of control; (2) Uncertainty; (3) Adapting and having to adapt to the new normal. Carers and PLWD were greatly affected by the sudden removal of social support services, and concerned about when services would re-open. Carers were worried about whether the person they cared for would still be able to re-join social support services. CONCLUSIONS: PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions.

A UK survey of COVID-19 related social support closures and their effects on older people, people with dementia, and carers.

OBJECTIVES: The aim of this national survey was to explore the impact of COVID-19 public health measures on access to social support services and the effects of closures of services on the mental well-being of older people and those affected by dementia. METHODS: A UK-wide online and telephone survey was conducted with older adults, people with dementia, and carers between April and May 2020. The survey captured demographic and postcode data, social support service usage before and after COVID-19 public health measures, current quality of life, depression, and anxiety. Multiple linear regression analysis was used to explore the relationship between social support service variations and anxiety and well-being. RESULTS: Five hundred and sixty-nine participants completed the survey (61 people with dementia, 285 unpaid carers, and 223 older adults). Paired samples t-tests and X2 -tests showed that the mean hour of weekly social support service usage and the number of people having accessed various services was significantly reduced post COVID-19. Multiple regression analyses showed that higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well-being in unpaid carers and older adults. CONCLUSIONS: Being unable to access social support services due to COVID contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future.

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study.

BACKGROUND: The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. METHODS: Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions. RESULTS: Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia. CONCLUSIONS: This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.