Search results for: carers

Authors: Mona Nikidehaghani, Freda Hui

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In Australia, one-third of mental health carers provide 40 hours or more of unpaid care per week. These hidden workers contribute significantly to the Australian mental health workforce by providing unpaid services both direct and indirect to people in their care. However, carers are often neglected in the healthcare system because Government services focus on those with a mental health condition rather than those supporting them. The aim of this study is to evaluate the perceptions of mental health carers on the effectiveness of community services designed for carers and how these services could be improved. We collaborated with One Door Mental Health, a community organisation that supports mental health carers. Through semi-structured interviews with 27 mental health carers residing in the Illawarra region (NSW), we documented their daily challenges and evaluated outcomes of the current programs for carers. Our findings demonstrate that services such as education programs enable capacity building and improve the social life and mental health of carers. Drawing on the perceptions of mental health carers, this study maps pathways for making meaningful changes in the lives of carers and proposes an outcome framework to evaluate the impact of a community organisation on the lives of their clients. The framework prepared by this project would be replicable, allowing other community organisations to measure the outcomes and improve their services.

Keywords: capacity building, community development, community service, mental health carers

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Authors: Godfrey Katende, Lillian Nakimera

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The process of caregiving may cause emotional distress in form of anxiety and depression among family carers of cancer patients. Little is known about the prevalence anxiety and depression among family carers of cancer patients in Uganda. This cross-sectional study aimed to determine the prevalence of anxiety and depression among family carers of cancer patients and related factors associated with abnormal levels of anxiety and depression. A total of 119 family carers from Uganda Cancer Institute (UCI) were assessed by the Hospital Anxiety and Depression Scale (HADS) standardized questionnaire. The prevalence of anxiety and depression among family carers was high (45% and 26 % respectively); (2) abnormal levels of anxiety (ALA) and depression (ALD) was significantly associated with being a relative carer. Incorporating evidence based psychological therapies targeting family carers into usual care of cancer patients is imperative.

Keywords: anxiety, cancer, carer, cross-sectional design, depression, Uganda

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Authors: Esabella Yuan

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This study explored the recollections of young carers who lived with and cared for their mentally ill parent and how they managed life difficulties in Taiwan. 19 former young carers took part in the study, conducted from July to October 2021. The findings provided the unique view that all the participants acknowledged being taught by the mainstream culture to honour family value and prioritize the needs of parents over their own ones, they stepped in to care for the ill parent out of love and out of necessity through there having no-one to turn to, they were willing to assume long-term caring responsibilities, strikingly, a much more common experience was that the participants hided parental illness and young carer identity in the community through the fear of social discrimination attached to mental illness. As a result, these former young carers stayed in hidden circumstances and coped alone with caring challenges. The findings suggest that there needs multi-disciplinary services working together to recognize the needs of young carers and provide appropriate intervention to young carers based on a family-focus approach and ensure to serve the best interests of young carers and their families. It is to be hope that young carers can grow up safely and healthily within the community.

Keywords: young carers, family well-being, mental health, parental mental illness

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Authors: Mark Linden, Michael Brown, Lynne Marsh, Maria Truesdale, Stuart Todd, Nathan Hughes, Trisha Forbes, Rachel Leonard

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Background: Family carers of people with intellectual disabilities (ID) face ongoing challenges in accessing services and often experience poor mental health. Online support programmes may prove effective in addressing the mental health and well-being needs of family carers. This study sought to test the acceptability of a newly developed online support programme for carers of people with intellectual disabilities called Carers-ID. Methods A sequential mixed-methods explanatory design was utilised. An adapted version of the Acceptability of Health Apps among Adolescents (AHAA) Scale was distributed to family carers who had viewed the Carers-ID.com intervention. Following this, participants were invited to take part in an online interview. Interview questions focused on participants’ experiences of using the programme and its acceptability. Qualitative and quantitative data were analysed separately and then brought together through the triangulation protocol developed by Farmer et al (2006). Findings: Seventy family carers responded to the acceptability survey, whilst 10 took part in interviews. Six themes were generated from interviews with family carers. Based on our triangulation, four areas of convergence were identified, these included, programme usability and ease, attitudes towards the programme, perceptions of effectiveness, and programme relatability. Conclusions: In order to be acceptable, online interventions for carers of people with ID need to be accessible, understandable and easy to use, as carers time is precious. Further research is needed to investigate the effectiveness of online interventions for family carers, specifically considering which carers the intervention works for, and for whom it may not.

Keywords: intellectual disability, family carer, acceptability study, online intervention

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Authors: Mark Linden, Michael Brown, Lynne Marsh, Maria Truesdale, Stuart Todd, Nathan Hughes, Trisha Forbes, Rachel Leonard

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Background: The COVID-19 pandemic exacerbated the already significant strain placed on family carers of people with profound and multiple intellectual disabilities (PMID), given the withdrawal of many services during lockdown. The aim of this study was to explore the experiences of family carers of people with PMID during the COVID-19 pandemic. Methods: Online focus groups were conducted with family carers (n=126) from across the UK and the Republic of Ireland. Participants were asked about their experiences of the COVID-19 pandemic, coping strategies, and challenges faced. Focus groups were audio recorded, transcribed verbatim and analyzed through thematic analysis. Findings: Three themes emerged from our analysis of the data: (i) COVID-19 as a double-edged sword, (ii) The struggle for support (iii) the Constant nature of caring. These included 11 subthemes: (i) ‘COVID-19 as a catalyst for change’, ‘Challenges during COVID-19: dealing with change’, ‘Challenges during COVID-19: fear of COVID-19’, ‘The online environment: the new normal’ (ii) ‘Invisibility of male carers’, ‘Carers supporting carers’, ‘The only service you get is lip service: non-existent services’, ‘Knowing your rights’ (iii) ‘Emotional response to the caring role: Feeling devalued’, ‘Emotional response to the caring role: Desperation of caring’, ‘Multiple demands of the caring role.’ Conclusions: Poor or inconsistent access to services and support has been an ongoing difficulty for many family carers. The COVID-19 pandemic has only further intensified these difficulties, increasing family carers' stress. There is an urgent need to design services, such as online support programs, in partnership with family carers that adequately address their needs.

Keywords: intellectual disabilities, family carer, COVID-19, disability

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Authors: Mark Linden, Trisha Forbes, Michael Brown, Lynne Marsh, Maria Truesdale, Stuart Todd, Nathan Hughes

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Background The COVID-19 pandemic resulted in a reduction of health care services for many family carers of people with profound and multiple intellectual disabilities (PMID). Due to lack of services, family carers turned to charities for support during the pandemic. We explored the views of charity workers across the UK and Ireland who supported family carers during the COVID-19 pandemic and explored their views on effective online support programmes for family carers. Methods This was a qualitative study using online focus groups with participants (n = 24) from five charities across the UK and Ireland. Questions focused on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were audio recorded, transcribed verbatim, and analysed through thematic analysis. Findings Four themes were identified (i) ‘mental and emotional health’, (ii) ‘they who shout the loudest’ (fighting for services), (iii) ‘lack of trust in statutory services’ and (iv) ‘creating an online support programme’. Mental and emotional health emerged as the most prominent theme and included three subthemes named as ‘isolation’, ‘fear of COVID-19’ and ‘the exhaustion of caring’. Conclusions The withdrawal of many services during the COVID-19 pandemic further isolated and placed strain on family carers. Even after the end of the pandemic family cares continue to report on the struggle to receive adequate support. There is a critical need to design services, including online support programmes, in partnership with family carers which adequately address their needs.

Keywords: intellectual disability, family carers, COVID-19, charities

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Authors: Mark Linden, Rachel Leonard, Trisha Forbes, Michael Brown, Lynne Marsh, Stuart Todd, Nathan Hughes, Maria Truesdale

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Background: Current interventions which aim to improve the mental health of family carers are often face to face, which can create barriers to full participation. Online interventions can offer flexibility in delivery compared to face to face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is to improve the mental health of family carers of people with intellectual disabilities. Methods: Family carers (n = 120) will be randomised to receive the intervention (n=60) or assigned to a wait-list control (n=60) group. The intervention (www.Carers-ID.com) consists of fourteen modules which cover topics including promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports, managing family conflict and information for siblings who are carers. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and three months after completion). Secondary outcomes include, depression, anxiety, stress, well-being , resilience and social connectedness. Participants (n=12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation. Discussion: To determine whether a full-scale randomised controlled effectiveness trial is warranted, feasibility testing of the intervention and trial procedures is a necessary first step. The Carers-ID intervention provides an accessible resource for family carers to support their mental health and well-being.

Keywords: intellectual disability, family carer, feasibility trial, online intervention

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Authors: Yu-Ching Liu

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Background: Family numbers usually take responsibility for taking care of their elderly relatives, especially parents. Caring for a patient with chronic diseases is a stressful experience, which makes carers suffer physical and mental health stress, difficulties maintaining family relationships and issues in participating in the labor market, which may lower their quality of life (QoL). The issue of providing care to relatives with chronic illness has been widely explored in Taiwan, but most studies focus on the need for full-time caregivers. Objective: The main goal of this study was to examine the topic of working carers involved in the decision-making process of LTC services and to explore what affects working carers considering when they choose the care services for their disabled, elderly relatives. Method: A total of 7 working caregivers were enrolled in this study. A face-to-face and semi-structured in-depth qualitative interview study were conducted to explore the caregivers' perspectives. Results: Working carers have a positive experience of using LTC service because it allows them to kill two birds with one stone, continue employment, and care for an elderly disabled relative. However, working carers have still been struggling to find friendly community-based LTC services. There were no longer available community services that could be used with the illness condition of patients getting worse. As such, patients have to be cared for at home, which might increase the caregiver burden of carers. Conclusion: Working family caregivers suffer from heavy physical and psychological burdens as they not only have to maintain their employment but care for elderly disabled relatives; however, the current support provided is insufficient. The design of services should consider working carers' employment situation and need rather than the only caring situation of patients at home.

Keywords: family caregiver, Long-term care, work-life balance, decision-making

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Authors: Yu-Yu Wang, Shih-Hua Hsieh, Ru-Shian Hsieh

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Wishes and choices being respected, and the right to be supported rather than coerced, have been internationally recognized as the human rights of persons with mental illness. In Taiwan, ‘coerced hospitalization’ has become difficult since the revision of the mental health legislation in 2007. Despite trend towards human rights, the real problem families face when their family members are in mental health crisis is the lack of alternative services. This study aims to explore: 1) When is hospitalization seen as the only solution by family members? 2) What are the barriers for arranging hospitalization, and how are they managed? 3) What have family carers learned, in their experiences of caring for their family members with mental illness? To answer these questions, qualitative approach was adopted, and focus group interviews were taken to collect data. This study includes 24 family carers. The main findings of this research include: First, hospital is the last resort for carers in helplessness. Family carers tend to do everything they could to provide care at home for their family members with mental illness. Carers seek hospitalization only when a patient’s behavior is too violent, weird, and/or abnormal, and beyond their ability to manage. Hospitalization, nevertheless, is never an easy choice. Obstacles emanate from the attitudes of the medical doctors, the restricted areas of ambulance service, and insufficient information from the carers’ part. On the other hand, with some professionals’ proactive assistance, access to medical care while in crisis becomes possible. Some family carers obtained help from the medical doctor, nurse, therapist and social workers. Some experienced good help from policemen, taxi drivers, and security guards at the hospital. The difficulty in accessing medical care prompts carers to work harder on assisting their family members with mental illness to stay in stable states. Carers found different ways of helping the ‘person’ to get along with the ‘illness’ and have better quality of life. Taking back ‘the right to control’ in utilizing medication, from passiveness to negotiating with medical doctors and seeking alternative therapies, are seen in many carers’ efforts. Besides, trying to maintain regular activities in daily life and play normal family roles are also experienced as important. Furthermore, talking with the patient as a person is also important. The authors conclude that in order to protect the human rights of persons with mental illness, it is crucial to make the medical care system more flexible and to make the services more humane: sufficient information should be provided and communicated, and efforts should be made to maintain the person’s social roles and to support the family.

Keywords: family carers, independent living, mental health crisis, persons with mental illness

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Authors: Stephen Bahooshy

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Our understanding of gender inequality has advanced in recent years. Differences in pay and societal gendered behaviour expectations have been emphasized. It is acknowledged globally that gender shapes everyone’s experiences of health and social care, including access to care, use of services and products, and the interaction with care providers. NHS Digital in England collects data from local authorities on the number of carers and people with support needs and the services they access. This data does not provide a gender breakdown. Caring can have many positive and negative impacts on carers’ health and wellbeing. For example, caring can improve physical health, provide a sense of pride and purpose, and reduced stress levels for those who undertake a caring role by choice. Negatives of caring include financial concerns, social isolation, a reduction in earnings, and not being recognized as a carer or involved and consulted by health and social care professionals. Treating male and female carers differently is by definition unequitable and precludes one gender from receiving the benefits of caring whilst potentially overburdening the other with the negatives of caring. In order to explore the issue on a preliminary basis, five local authorities who provide statutory adult social care services in England were sent Freedom of Information requests in 2019. The authorities were selected to include county councils and London boroughs. The authorities were asked to provide data on the amount of money spent on care at home packages to people over 65 years, broken down by gender and carer gender for each financial year between 2013 and 2019. Results indicated that in each financial year, female carers supporting someone over 65 years received less financial support for care at home support packages than male carers. Over the six-year period, this difference equated to a £9.5k deficit in financial support received on average per female carer when compared to male carers. An example of a London borough with the highest disparity presented an average weekly spend on care at home for people over 65 with a carer of £261.35 for male carers and £165.46 for female carers. Consequently, female carers in this borough received on average £95.89 less per week in care at home support than male carers. This highlights a real and potentially detrimental disparity in the care support received to female carers in order to support them to continue to care in parts of England. More research should be undertaken in this area to better explore this issue and to understand if these findings are unique to these social care providers or part of a wider phenomenon. NHS Digital should request local authorities collect data on gender in the same way that large employers in the United Kingdom are required by law to provide data on staff salaries by gender. People who allocate social care packages of support should consider the impact of gender when allocating support packages to people with support needs and who have carers to reduce any potential impact of gender bias on their decision-making.

Keywords: caregivers, carers, gender equality, social care

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Authors: Mercedes Sepulveda, Saras Henderson, Dana Farrell, Gaby Heuft

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In Australia, there is a significant number of Culturally and Linguistically Diverse (CALD) Grandparent Carers who are sole carers for their grandchildren. Services in the community such as accessible healthcare, financial support, legal aid, and transport to services can assist Grandparent Carers to continue to live in their own home whilst caring for their grandchildren. Community nurses can play a major role by being aware of the needs of these grandparents and link them to services via information and referrals. The CALD Grandparent Carer experiences have only been explored marginally and may be similar to the general Grandparent Carer population, although cultural aspects may add to their difficulties. This Needs-Gap Analysis aimed to uncover ‘hidden issues’ for CALD Grandparent Carers such as service gaps and actions needed to address these issues. The stakeholders selected for this Needs-Gap Analysis were drawn from relevant service providers such as community and aged care services, child and/or grandparents support services and CALD specific services. One hundred relevant service providers were surveyed using six structured questions via face to face, phone interviews, or email correspondence. CALD Grandparents who had a significant or sole role of being a carer for grandchildren were invited to participate through their CALD community leaders. Consultative Forums asking five questions that focused on the caring role, issues encountered, and what needed to be done, were conducted with the African, Asian, Spanish-Speaking, Middle Eastern, European, Pacific Islander and Maori Grandparent Carers living in South-east Queensland, Australia. Data from the service provider survey and the CALD Grandparent Carer forums were content analysed using thematic principles. Our findings highlighted social determinants of health grouped into six themes. These were; 1) service providers and Grandparent Carer perception that there was limited research data on CALD grandparents as carers; 2) inadequate legal and financial support; 3) barriers to accessing information and advice; 4) lack of childcare options in the light of aging and health issues; 5) difficulties around transport; and 6) inadequate technological skills often leading to social isolation for both carer and grandchildren. Our Needs-Gap Analysis provides insight to service providers especially health practitioners such as doctors and community nurses, particularly on the impact of caring for grandchildren on CALD Grandparent Carers. Furthermore, factors such as cultural differences, English language difficulties, and migration experiences also impacted on the way CALD Grandparent Carers are able to cope. The findings of this Need-Gap Analysis signposts some of the ‘ hidden issues’ that CALD Grandparents Carers face and draws together recommendations for the future as put forward by the stakeholders themselves.

Keywords: CALD grandparents, carer needs, community nurses, grandparent carers

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Authors: Jennifer E Simpson

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Background and purpose: The ubiquitous use of the Internet and social media by children and young people has had a dual effect. The first is to open a world of possibilities and promise that is characterized by the ability to consume and create content, connect with friends, explore and experiment. The second relates to risks such as unsolicited requests, sexual exploitation, cyberbullying and commercial exploitation. This duality poses significant difficulties for a generation of foster carers and social workers who have no childhood experience to draw on in terms of growing up using the Internet, social media and digital devices. This presentation is concerned with the findings of a small qualitative study about the use of digital devices and the Internet by care-experienced young people to stay in touch with their families and the way this was managed by foster carers and social workers using specific parental mediation strategies. The findings highlight that restrictive strategies were used by foster carers and endorsed by social workers. An argument is made for an approach that develops a series of balanced solutions that move foster carers from such restrictive approaches to those that are grounded in co-use and are interpretive in nature. Methods: Using a purposive sampling strategy, 12 triads consisting of care-experienced young people (aged 13-18 years), their foster carers and allocated social workers were recruited. All respondents undertook a semi-structured interview, with the young people detailing what social media apps and other devices they used to contact their families via an Ecomap. The foster carers and social workers shared details of the methods and approaches they used to manage digital devices and the Internet in general. Data analysis was performed using a Framework analytic method to explore the various attitudes, as well as complementary and contradictory perspectives of the young people, their foster carers and allocated social workers. Findings: The majority of foster carers made use of parental mediation strategies that erred on the side of typologies that included setting rules and regulations (restrictive), ad-hoc checking of a young person’s behavior and device (monitoring), and software used to limit or block access to inappropriate websites (technical). It was noted that minimal use was made by foster carers of parental mediation strategies that included talking about content (active/interpretive) or sharing Internet activities (co-use). Amongst the majority of the social workers, they also had a strong preference for restrictive approaches. Conclusions and implications: Trepidations on the part of both foster carers and social workers about the use of digital devices and the Internet meant that the parental strategies used were weighted more towards restriction, with little use made of approaches such as co-use and interpretative. This lack of balance calls for solutions that are grounded in co-use and an interpretive approach, both of which can be achieved through training and support, as well as wider policy change.

Keywords: parental mediation strategies, risk, children in state care, online safety

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Authors: James Boag

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The needs of people with a diagnosis of dementia and their carers and families are physical, psychosocial, and psychological and begin at the time of diagnosis. There is frequently a lack of emotional support and counselling. Care- giving support is required from the presentation of the first symptoms of dementia until death. Alzheimer's disease begins decades before the clinical symptoms begin to appear, and in many cases, it remains undiagnosed, or diagnosed too late for any possible interventions to have any effect. However, if an incorrect diagnosis is given, it may result in a person being treated, without effect, for a type of dementia they do not have and delaying the interventions they should have received. Being diagnosed with dementia can cause emotional distress to the person, and physical and emotional support is needed, which will become more important as the disease progresses. The severity of the patient's dementia and their symptoms has a bearing of the impact on the carer and the support needed. A lack of insight and /or a denial of the diagnosis, grief, reacting to anticipated future losses, and coping methods to maximise the disease outcome, are things that should be addressed. Because of the stigma, it is important for carers not to lose contact with family and others because social isolation leads to depression and burnout. The impact on a carer's well- being and quality of life can be influenced by the severity of the illness, its type of dementia, its symptoms, healthcare support, financial and social status, career, age, health, residential setting, and relationship to the patient. Carer burnout due to lack of support leads to people diagnosed with dementia being put into residential care prematurely. Often dementia is not recognised as a terminal illness, limiting the ability of the person diagnosed with dementia and their carers to work on advance care planning and getting access to palliative and other support. Many carers have been satisfied with the physical support they were given in their everyday life, however, it was agreed that there was an immense unmet need for psychosocial support, especially after diagnosis and approaching end of life. Providing continuity and coordination of care is important. Training is necessary for providers to understand that every case is different, and they should understand the complexities. Grief, the emotional response to loss, is suffered during the progression of the disease and long afterwards, and carers should continue to be supported after the death of the person they were caring for.

Keywords: dementia, caring, challenges, needs

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Authors: Etsuko Sakairi

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In 2016 Japan started to enforce domestic legislation in the form of the Act of Elimination of Discrimination against Persons with Disability, along with ratifying the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2014. However, it is not clear what kind of situations would be considered cases of discrimination in relation to issues of sexuality according to this legislation. Furthermore, in March 2016, the United Nations Committee on the Elimination of Discrimination against Women (CEDAW) made a recommendation to the Japanese government to conduct a study of the forced sterilization of women under the Eugenic Protection Act. This research is carried out against this background in which the experiences of people with disabilities have often been restricted by caregivers and family members—as evidenced by the high number of eugenics surgeries performed on people with disabilities without their consent. This research contributes to this topic by presenting voices and perspectives of key people, especially focusing on the voices of carers who are working with people with physical disabilities in a Non-Western country, Japan. Furthermore, since 90% of the research on the topic of sexuality of people with disabilities is conducted in Western countries, the voices from Non-Western countries in this regard are greatly lacking. In the part of the research presented here, the researcher has employed a feminist disability theory to understand the circumstances surrounding people with physical disabilities. She has gathered voices from 58 carers by using an on-line questionnaire (55) and by conducting face-to-face interviews (3). In this presentation, the researcher will introduce experiences and thoughts regarding sexuality and people with disabilities by using carers’ own words. One of the major findings was carers’ concern about a boundary issue. Although each carer has had unique experiences depending on their professional or personal relationship with people with physical disabilities, many of them shared some similar viewpoints. This included a concern that assisting with the meeting of some forms of sexual needs 9e.g. assisted masturbation) would result in the possibility of transgressing the boundary between the carer and the person with physical disability. Most of the carer did not have any opportunity to receive any trainings regarding to sexuality of people with disabilities. Furthermore, most of the carers conceptualized that ‘Keeping a sexual dignity of people with disabilities’ means practicing a ‘Principle of same sex assistance’. The researcher hopes that this presentation provides an opportunity for audiences to look back at their own community and to think about what sexuality of people with physical disabilities means to their carers as well as to look back at their own practice in relation to this issue.

Keywords: Carer, Japan, physical disabilities, sexuality

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Authors: Che Zarrina Sa'ari, Sheriza Izwa Zainuddin, Hasimah Chik, Sharifah Basirah Syed Muhsin

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Palliative care is holistic care for patients with serious illnesses and for the family as well by interdisciplinary specialties to optimize quality of life by preventing, treating, and comforting the suffering and struggling. Palliative care is not a curative treatment but a comprehensive care to ensure the well-being of patients. This study was to identify the perceptions of patients and carers on healthcare needs and any factors related to the needs of palliative patients. Validated questionnaires survey of 254 patients and carers were analysed using a Statistical Package for the Social Sciences (SPSS) version 22. The findings were processed with Cronbach Alpha analysis, frequency, and descriptive to compare the important of each element in healthcare. Open-ended responses were analysed using thematic framework approach. The findings proved that all the items in healthcare needs elements were important because the frequency shown higher values, which were physical needs (5.91), mental needs (6.10), spiritual needs (6.34), emotional needs (6.05), social needs (5.88) and logistics needs (5.05). The total score of Cronbach’s alpha (α) for this study is 0.958, which is suggesting very good internal consistency reliability for the elements for healthcare needs. Professionals and healthcare providers need to ensure healthcare planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person.

Keywords: healthcare, need, holistic, palliative, multi speciality

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Authors: Jane E. Souyave, Judith Bower

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This study is an ongoing collaborative project between the University of Central Lancashire and the Alzheimer’s Society to design and test the idea of using interactive tools for a person living with dementia and their carers. It is hoped that the tools will fulfill the possible needs of engagement and interaction as dementia progresses, therefore enhancing wellbeing and improving quality of life for the person with dementia and their carers. The project was informed by Kitwood’s five psychological needs for producing wellbeing and explored evidence that fidgeting is often seen as a form of agitation and a negative symptom of dementia. Although therapy for agitation may be well established, there is a lack of appropriate items aimed at people in the later stage of dementia, that are not childlike or medical in their aesthetic. Individuals may fidget in a particular way and the tools in the Fidget Widget Toolkit have been designed to encourage repetitive movements of the hand, specifically to address the abilities of people with relatively advanced dementia. As an intervention, these tools provided a new approach that had not been tested in dementia care. Prototypes were created through an iterative design process and tested with a number of people with dementia and their carers, using quantitative and qualitative methods. Dementia Care Mapping was used to evaluate the impact of the intervention in group settings. Cohen Mansfield’s Agitation Inventory was used to record the daily use and interest of the intervention for people in their usual place of residence. The results informed the design of a new set of devices to promote safe, stigma free fidgeting as a positive experience, meaningful activity and enhance wellbeing for people in the later stage of dementia. The outcomes addressed the needs of individuals by reducing agitation and restlessness through helping them to connect, engage and act independently, providing the means of doing something for themselves that they were able to do. The next stage will be to explore the commercial feasibility of the Fidget Widget Toolkit so that it can be introduced as good practice and innovation in dementia care. It could be used by care homes, with carers and their families to support wellbeing and lead the way in providing some positive experiences and person-centred approaches that are lacking in the later stage of dementia.

Keywords: dementia, design, fidgeting, healthcare, positive moments, quality of life, wellbeing

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Authors: Cameron Wilson, Megan Hanrahan, Katie Brittain, Riona McArdle, Alison Keogh, Lynn Rochester

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Background: The loss of mobility and functional dependence is a significant marker in the progression of neurodegenerative diseases such as Parkinson’s Disease (PD). Pharmacological, surgical, and therapeutic treatments are available that can help in the management and amelioration of PD symptoms; however, these only prolong more severe symptoms. Accordingly, ensuring people with PD can maintain independence and a healthy wellbeing are essential in establishing an effective treatment option for those afflicted. Existing literature reviews have examined experiences in engaging with PD treatment options and the impact of PD on independence and wellbeing. Although, the literature fails to explore the influence of treatment options on independence and wellbeing and therefore misses what people value in their treatment. This review is the first that synthesises the impact of mobility-related treatments on independence and wellbeing in people with PD and their carers, offering recommendations to clinical practice and provides a conceptual framework (in development) for future research and practice. Objectives: To explore the impact of mobility-related treatment (both pharmacological and non-pharmacological) on the independence and wellbeing of people with PD and their carers. To propose a conceptual framework to patients, carers and clinicians which captures the qualities people with PD value as part of their treatment. Methods: We performed a critical interpretive synthesis of qualitative evidence, searching six databases for reports that explored the impact of mobility-related treatments (both drug and non-pharmacological) on independence and wellbeing in Parkinson’s Disease. The types of treatments included medication (Levodopa and Amantadine), dance classes, Deep-Brain Stimulation, aquatic therapies, physical rehabilitation, balance training and foetal transplantation. Data was extracted, and quality was assessed using an adapted version of the NICE Quality Appraisal Tool Appendix H before being synthesised according to the critical interpretive synthesis framework and meta-ethnography process. Results: From 2301 records, 28 were eligible. Experiences and impact of treatment pathway on independence and wellbeing was similar across all types of treatments and are described by five inter-related themes: (i) desire to maintain independence, (ii) treatment as a social experience during and after, (iii) medication to strengthen emotional health, (iv) recognising physical capacity and (v) emphasising the personal journey of Parkinson’s treatments. Conclusion: There is a complex and inter-related experience and effect of PD treatments common across all types of treatment. The proposed conceptual framework (in development) provides patients, carers, and clinicians recommendations to personalise the delivery of PD treatment, thereby potentially improving adherence and effectiveness. This work is vital to disseminate as PD treatment transitions from subjective and clinically captured assessments to a more personalised process supplemented using wearable technology.

Keywords: parkinson's disease, medication, treatment, dance, review, healthcare, delivery, levodopa, social, emotional, psychological, personalised healthcare

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Authors: Jonathan Turner, Julie Doyle, Laura O’Philbin, Dympna O’Sullivan

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People living with dementia should be at the centre of decision-making regarding goals for daily living. These goals include basic activities (dressing, hygiene, and mobility), advanced activities (finances, transportation, and shopping), and meaningful activities that promote well-being (pastimes and intellectual pursuits). However, there is limited involvement of people living with dementia in the design of technology to support their goals. A project is described that is co-designing intelligent computer-based support for, and with, people affected by dementia and their carers. The technology will support self-management, empower participation in shared decision-making with carers and help people living with dementia remain healthy and independent in their homes for longer. It includes information from the patient’s care plan, which documents medications, contacts, and the patient's wishes on end-of-life care. Importantly for this work, the plan can outline activities that should be maintained or worked towards, such as exercise or social contact. The authors discuss how to integrate care goal information from such a care plan with data collected from passive sensors in the patient’s home in order to deliver individualized planning and interventions for persons with dementia. A number of scientific challenges are addressed: First, to co-design with dementia patients and their carers computerized support for shared decision-making about their care while allowing the patient to share the care plan. Second, to develop a new and open monitoring framework with which to configure sensor technologies to collect data about whether goals and actions specified for a person in their care plan are being achieved. This is developed top-down by associating care quality types and metrics elicited from the co-design activities with types of data that can be collected within the home, from passive and active sensors, and from the patient’s feedback collected through a simple co-designed interface. These activities and data will be mapped to appropriate sensors and technological infrastructure with which to collect the data. Third, the application of machine learning models to analyze data collected via the sensing devices in order to investigate whether and to what extent activities outlined via the care plan are being achieved. The models will capture longitudinal data to track disease progression over time; as the disease progresses and captured data show that activities outlined in the care plan are not being achieved, the care plan may recommend alternative activities. Disease progression may also require care changes, and a data-driven approach can capture changes in a condition more quickly and allow care plans to evolve and be updated.

Keywords: care goals, decision-making, dementia, self-care, sensors

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Authors: Tania Lisboa, Angela Voyajolu, Adam Ockelford

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The positive impact of music on the development of children with autism is widely acknowledged: music offers a unique channel for communication, wellbeing and self-regulation, as well as access to culture and a means of creative engagement. Yet, no coherent program exists for parents, carers and teachers to follow with their children in the early years, when the need for interventions is often most acute. Hence, research and the development of resources is urgently required. Autism is a project with children on the autism spectrum. The project aims at promoting the participants’ engagement with music through involvement in specially-designed musical activities with parents and carers. The main goal of the research is to verify the effectiveness of newly designed resources and strategies, which are based on the Sounds of Intent in the Early Years (SoI-EY) framework of musical development. This is a pilot study, comprising case studies of five children with autism in the early years. The data comprises semi-structured interviews, observations of videos, and feedback from parents on resources. Interpretative Phenomenological Analysis was chosen to analyze the interviews. The video data was coded in relation to the SoI-EY framework. The feedback from parents was used to evaluate the resources (i.e. musical activity cards). The participants’ wider development was also assessed through selected elements of the Early Years Foundation Stage (EYFS), a national assessment framework used in England: specifically, communication, language and social-emotional development. Five families of children on the autism spectrum (aged between 4-8 years) participated in the pilot. The research team visited each family 4 times over a 3-month period, during which the children were observed, and musical activities were suggested based on the child’s assessed level of musical development. Parents then trialed the activities, providing feedback and gathering further video observations of their child’s musical engagement between visits. The results of one case study will be featured in this paper, in which the evidence suggests that specifically tailored musical activity may promote communication and social engagement for a child with language difficulties on the autism spectrum. The resources were appropriate for the children’s involvement in musical activities. Findings suggest that non-specialist musical engagement with family and carers can be a powerful means to foster communication. The case study featured in this paper illustrates this with a child of limited verbal ability. There is a need for further research and development of resources that can be made available to all those working with children on the autism spectrum.

Keywords: autism, development, music education, resources

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Authors: Nadia Arikat, Katharine Blain

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During the worst of the COVID pandemic, only essential treatment was provided for patients needing urgent care. With the prolonged extent of the pandemic, there has been a return to more routine referrals for paediatric dentistry advice and treatment for specialist conditions. However, some of these patients and/or their carers may have significant medical issues meaning that attending in-person appointments carries additional risks. This poses an ethical dilemma for clinicians. This project looks at how a secure video conferencing platform (“Near Me”) has been used to assess the need and urgency for in-person new patient visits, particularly for patients and families with additional risks. “Near Me” is a secure online video consulting service used by NHS Scotland. In deciding whether to bring a new patient to the hospital for an appointment, the clinical condition of the teeth together with the urgency for treatment need to be assessed. This is not always apparent from the referral letter. In addition, it is important to judge the risks to the patients and carers of such visits, particularly if they have medical issues. The use and effectiveness of “Near Me” consultations to help decide whether vulnerable paediatric patients should have in-person appointments will be illustrated and discussed using two families: one where the child is medically compromised (Alagille syndrome with previous liver transplant), and the other where there is a medically compromised parent (undergoing chemotherapy and a bone marrow transplant). In both cases, it was necessary to take into consideration the risks and moral implications of requesting that they attend the dental hospital during a pandemic. The option of remote consultation allowed further clinical information to be evaluated and the families take part in the decision-making process about whether and when such visits should be scheduled. These cases will demonstrate how medically compromised patients (or patients with vulnerable carers), could have their dental needs assessed in a socially distanced manner by video consultation. Together, the clinician and the patient’s family can weigh up the risks, with regards to COVID-19, of attending for in-person appointments against the benefit of having treatment. This is particularly important for new paediatric patients who have not yet had a formal assessment. The limitations of this technology will also be discussed. It is limited by internet availability, the strength of the connection, the video quality and families owning a device which allows video calls. For those from a lower socio-economic background or living in some rural areas, this may not be possible or limit its usefulness. For the two patients discussed in this project, where the urgency of their dental condition was unclear, video consultation proved beneficial in deciding an appropriate outcome and preventing unnecessary exposure of vulnerable people to a hospital environment during a pandemic, demonstrating the usefulness of such technology when it is used appropriately.

Keywords: COVID-19, paediatrics, triage, video consultations

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Authors: Siobhan Laird

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Under article 12 of the Convention on the Rights of the Child, which extends human rights in their application to those under the age of 18 years, children must be consulted ‘in all matters affecting the child’. The Office of the Children’s Commissioner for England is responsible for improving the welfare of children and young people by ensuring that their Convention rights are respected and realised and their views taken seriously. In 2014 the Children’s Commissioner engaged a team of researchers at the Centre for Social Work, University of Nottingham to develop and roll out an online survey to gather information from children and young people about their exercise of choice within the public care system. Approximately 3,000 children responded to this survey, which comprised both closed and open-ended questions. SPSS was used to analyse the numerical data and a thematic analysis of textual data was conducted on answers to open-ended questions. Findings revealed that children exercised considerable choice over personal space and their spare time, but had much less choice in relation to contact with their birth families, where they lived, or the timings of moves from one placement into another. The majority of children described how they were supported to express their opinions and believed that these were taken seriously. However, a significant number reported problems and explained how specific behaviours by professionals and carers made it difficult for them to express their opinion or to feel that they had influenced decisions which affected them. In open-ended questions eliciting information about their experiences, children and young people were asked to describe how they could be better supported to make choices and what changes would assist for these to be better acknowledged and acted upon by professionals and carers. This paper concludes by presenting the ideas and suggestions of children and young people for improving the public care system in Britain in relation to their exercise of choice.

Keywords: children, choice, participation, public care

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Authors: Patrick Nurse, Professor Neil Sebire, Polly Livermore

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The use of digital systems in healthcare is now highly prevalent. With further advancement of technology, these systems will become increasingly utilised within the healthcare sector. Therefore understanding how clinicians (for example, doctors, nurses) interact with technology and digital systems is critical to making care safer. Seven members from the Parent/Carers’ Research Advisory Group and the Young-Persons’ Research Group at a healthcare Trust in London and three staff members contributed to an engagement workshop to assess the impact of digital systems on the practice of nurses. The group also advised on the viability of a research study to investigate this further. A wide range of issues within digital system implementation in healthcare were raised, such as ‘workarounds’, system’s training, and upkeep and regulation of usage, which all emerged as early themes during the discussion. Further discussion focused on the subject of escalation of issues, ‘workarounds’, and problem solving. While challenging to implement, digital systems are hugely beneficial to healthcare providers. The workshop indicated that there is scope for investigation of the prevalence, nature, and escalation of ‘workarounds’, this was of key interest to the advisory group. An interesting concern of the group was their worry from a patient and parental perspective regarding how nurses might feel when needing to complete a ‘workaround’ during a busy shift. This is especially relevant if the reasons to complete the ‘workaround’ were outside the nurse’s control, driven by clinical need and urgency of care. This showed the level of insight that those using healthcare services have into the reality of workflows of those providing care. Additionally, it reflects the desire for patients and families to understand more about the administration and methodology of their care. Future study should be dedicated to understanding why nurses deploy ‘workarounds’, as well as their perspective and experience of them and subsequent escalation through leadership hierarchies

Keywords: patient engagement/involvement, workarounds, medication-administration, digital systems

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Authors: Abdirahim Mohamed, Sarita Rana Chhetri, Michael Sleath, Nadia Saleem

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Rationale: Internet usage has been very much integrated into our daily lives. Internet usage within a neurodevelopmental disorder population is also on the increase. Nevertheless, there is very little empirical research on how this population virtually protect themselves; along with how their parents can keep them safe online. This topic was an ever-growing concern to the parents within our services and in many cases would add to the stresses and mental health of parents. This ignited an idea within our team to conduct research to explore the perceived online risks within this population and how they keep themselves safe. In conjunction, we also explored how parents and caregivers monitor and safeguard their young people to the potential threats online. Our hypothesis was that the perceived risks will heavily outnumber the safeguarding measures implemented by this population. Method: Within the Coventry and Warwickshire NHS Partnership Trust Child and Adolescent Mental Health Service (CAMHS), we distributed qualitative questionnaires to all the clinical bases (N=80). Questions explored topics such as daily internet usage, safeguarding measures, and perceived threats. The researchers requested for all CAMHS clinicians to identify participants. Participants in this study were accessing CAMHS for neurodevelopmental specific interventions. Results: The data were analysed using both Excel and SPSS. Within SPSS, a MANOVA was conducted and found a significant difference between safeguarding measures and perceived online risks within responses (p ≤ 0.5). This supports our hypothesis that participants in this population are well versed in the safeguarding issues of the internet; however, struggle to implement appropriate preventative measures. Data were also screened using Excel and found that all parents and carers stated they 'monitored their child’s internet use'. Conclusion: Data suggest that parents/carers may require more specific intervention to equip them with preventative measures due to the clear discrepancy between perceived risks and safeguarding measures. More research may also need to be conducted around this area to determine appropriate methodology to explore this topic further.

Keywords: Internet, health , how safe are we , internet health check

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Authors: Peter Williams

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Mobile digital technology, in the form of smart phones, tablets, laptops and their accompanying functionality/apps etc., is becoming ever more used by people with Learning Disabilities (LD) - for entertainment, to communicate and socialize, and enjoy self-expression. Despite this, there has been very little research into the experiences of such technology by this cohort, it’s role in articulating personal identity and self-advocacy and the barriers encountered in negotiating technology in everyday life. The proposed talk describes research funded by the British Academy addressing these issues. It aims to explore: i) the experiences of people with LD in using mobile technology in their everyday lives – the benefits, in terms of entertainment, self-expression and socialising, and possible greater autonomy; and the barriers, such as accessibility or usability issues, privacy or vulnerability concerns etc. ii) how the technology, and in particular the software/apps and interfaces, can be improved to enable the greater access to entertainment, information, communication and other benefits it can offer. It is also hoped that results will inform parents, carers and other supporters regarding how they can use the technology with their charges. Rather than the project simply following the standard research procedure of gathering and analysing ‘data’ to which individual ‘research subjects’ have no access, people with Learning Disabilities (and their supporters) will help co-produce an accessible, annotated and hyperlinked living e-archive of their experiences. Involving people with LD as informants, contributors and, in effect, co-researchers will facilitate digital inclusion and empowerment. The project is working with approximately 80 adults of all ages who have ‘mild’ learning disabilities (people who are able to read basic texts and write simple sentences). A variety of methods is being used. Small groups of participants have engaged in simple discussions or storytelling about some aspect of technology (such as ‘when my phone saved me’ or ‘my digital photos’ etc.). Some individuals have been ‘interviewed’ at a PC, laptop or with a mobile device etc., and asked to demonstrate their usage and interests. Social media users have shown their Facebook pages, Pinterest uploads or other material – giving them an additional focus they have used to discuss their ‘digital’ lives. During these sessions, participants have recorded (or employed the researcher to record) their observations on to the e-archive. Parents, carers and other supporters are also being interviewed to explore their experiences of using mobile technology with the cohort, including any difficulties they have observed their charges having. The archive is supplemented with these observations. The presentation will outline the methods described above, highlighting some of the special considerations required when working inclusively with people with LD. It will describe some of the preliminary findings and demonstrate the e-archive with a commentary on the pages shown.

Keywords: inclusive research, learning disabilities, methods, technology

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Authors: Gracie Tredget, Raymond McGrath, Karen Ang, Julie Williams, Nick Sevdalis, Fiona Gaughran, Jorge Aria de la Torre, Ioannis Bakolis, Andy Healey, Zarnie Khadjesari, Euan Sadler, Natalia Stepan

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Background: Preventable physical health problems have been found to increase morbidity rates amongst adults living with serious mental illness (SMI). Community mental health clinicians have a role in identifying, and preventing physical health problems worsening, and supporting primary care services to administer routine physical health checks for their patients. However, little is known about how mental health staff perceive and approach their role when providing physical healthcare amongst patients with SMI, or the impact these attitudes have on routine practice. Methods: The present study involves a prospective service evaluation specific to Adult Community Mental Health Services at South London and Maudsley NHS Foundation Trust (SLaM). A qualitative methodology will use semi-structured interviews, focus groups and observations to explore attitudes, perceptions and experiences of staff, patients, and carers (n=64) towards physical healthcare, and barriers or facilitators that impact upon it. 1South London and Maudsley NHS Foundation Trust, London, SE5 8AZ, UK 2 Centre for Implementation Science, King’s College London, London, SE5 8AF, UK 3 Psychosis Studies, King's College London, London, SE5 8AF, UK 4 Department of Biostatistics and Health Informatics, King’s College London, London, SE5 8AF, UK 5 Kings Health Economics, King's College London, London, SE5 8AF, UK 6 Behavioural and Implementation Science (BIS) research group, University of East Anglia, Norwich, UK 7 Department of Nursing, Midwifery and Health, University of Southampton, Southampton, UK 8 Mind and Body Programme, King’s Health Partners, Guy’s Hospital, London, SE1 9RT *[email protected] Analysis: Data from across qualitative tasks will be synthesised using Framework Analysis methodologies. Staff, patients, and carers will be invited to participate in co-development of recommendations that can improve routine physical healthcare within Adult Community Mental Health Teams at SLaM. Results: Data collection is underway at present. At the time of the conference, early findings will be available to discuss. Conclusions: An integrated approach to mind and body care is needed to reduce preventable deaths amongst people with SMI. This evaluation will seek to provide a framework that better equips staff to approach physical healthcare within a mental health setting.

Keywords: severe mental illness, physical healthcare, adult community mental health, nursing

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Authors: Cate MacMillan, Nicholas J. Stevens, Johanna Rosier, Steven Boyd

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Choosing where to live is an important decision for anybody, however, this decision is more complex if you are an adult with intellectual disability. Our research asked adults with intellectual disability, parents and carers and disability, housing and built environment decision makers what they considered important in deciding where to live. If medical advances continue to improve the longevity of adults with intellectual disability, many of these adults will outlive their parents. With appropriate community support, and in appropriately designed neighbourhoods, many will be able to live independently. Our research suggests that the key to achieving independent living as an adult with intellectual disability is not so much about the house but the type of neighbourhood and its design. This paper presents the results of interviews and details a practical approach which will better inform urban development decision-makers in establishing safe, inclusive and accessible neighbourhood design.

Keywords: inclusion, independent living, intellectual disability, neighbourhoods, systems thinking, urban design and planning

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Authors: Emma Mathias

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The aim of this study was to explore the role of food insecurity as a mediator of mental health in sub-Saharan Africa, taking Ghana as a case study. Although a quantitative correlation has recently been established between food insecurity and mental illness in Ghana, the nature and validity of this correlation remains unclear. A qualitative exploration was employed to investigate this correlation further. During the data collection period, twelve semi-structured interviews and five focus groups were conducted with a total of 124 individuals who were diagnosed with mental illnesses and their primary carers throughout rural and urban areas in Ghana. Interviews and focus groups were transcribed, translated, and analysed using thematic analysis. Preliminary results suggest that food insecurity may plays a role in mental illness in rural areas of Ghana where communities are reliant on agriculture for their livelihoods, but may play a lesser role in urban areas where communities are more reliant on petty trade as a source of livelihood. These results support psychosocial theories which suggest that the social and cultural factors involved in food production and consumption may be the key mediators between food insecurity and mental health.

Keywords: Food insecurity, Ghana, Mental health, Phenomenology

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Authors: Sylvia Acquah

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The assumption that social enterprises are empowering has strong theoretical support, but empirical verification is anecdotal at best. Social enterprises blend social goal with an enterprising idea and therefore in theory these enterprises should provide meaningful jobs that are empowering. Whether jobs created are meaningful, or whether these organizations are practicing social entrepreneurship remains unexplored key questions. This paper addresses these key questions through a comprehensive literature review and an ethnographical study of a Domiciliary Home Care Social Enterprise in the UK. The social entrepreneurs, management and 9 staff members were observed, interviewed and achieves were reviewed and analyzed. In this study, the social entrepreneur’s vision was lost in transition during management change and the organization was only identified as a social enterprise by name. The organization that was set up to tackle lack of continuity in care and create a family of independent carers, was eventually closed down overnight and subjected to investigation by social services and the local council. Also, the ineffectiveness of the organization led to staff being stressed and without the support of the management to help rectify the issues; staff started displaying symptoms of burnout. Social enterprise managers should not only focus on profit maximization or generation, but should equally live up to the core tenets of the enterprise and effectively communicate and gain buy-in of all employees for any changes. Further, there ought to be an independent organization that regulates social enterprises to ensure that they are adhering to their social goals.

Keywords: ethnography, carer, social, enterprise

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Authors: Wendy Lee

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From the mid-twentieth century onward, the notion of ‘attachment’ has been used to define the optimum relationship between young children and their carers; first applied to parents and young children and more recently with early childhood educators and children in their care. However, it is seldom, if ever, asked whether the notion of ‘attachment’ and more especially so-called Attachment Theory, as propounded by John Bowlby and others, provides a sound basis for conceptualising child-adult relationships in early years. Even if appropriate in the context of family, the use of the term raises a number of questions when used in early childhood education. Research has shown that our youngest children (infants) in early childhood centre based care settings, are given the utmost priority to build 'attachments' with their educators. But exactly when, how and why does this priority diminish - and should it (for preschoolers)? This presentation will elaborate on such issues and will argue that there is a need to reconceptualise and redefine how 'quality relationships' should be measured and implemented in the daily practices and pedagogical methods adopted by early childhood educators. Moreover, this presentation will include data collected from the empirical study conducted, that observed various early childhood educators and children in Australian early childhood centres. Lastly, the thoughts, feelings and desires of parents of children in early childhood centre-based care, regarding the term 'attachment' and 'quality relationships' will be shared in the hope that we can take one step closer in bridging the needs of families, children, early childhood centres, educators, and the wider community.

Keywords: attachment, early childhood education, pedagogy, relationships

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Authors: Emmylou Rahtz, Sarah Goldingay, Sara Warber, Ann Arbor, Paul Dieppe

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Introduction: Lourdes is a Catholic, Marian healing venue in South West France. Many miraculous cures have been attributed to visits there. In addition, many visitors seem to experience improvements in health and wellbeing, in the absence of a cure of disease. We wanted to investigate that phenomenon. Methods: We spent 10 days in Lourdes in 2017, carrying out ethnographic research, talking to many visitors, and carrying out formal, recorded interviews with several pilgrims, doctors, nurses, helpers, and priests. Results: Profound experiences and improvements in health and wellbeing were commonly reported. A number of ‘noetic’ experiences were also described. The paper will illustrate these phenomena. In addition, many participants in the research talked about why being in Lourdes was so beneficial to them. The community spirit, ethos of prayer, flow, synchronicity, and ability to find new meaning for life’s ills were cited as likely reasons. Conclusions: We believe that the ‘real miracle’ of Lourdes is the fact that of the many hundreds of thousands of people who go there each year, many find great benefit in health and wellbeing. It is likely that this is due to the ethos of the place, the community spirit, non-judgmental approach and loving acceptance of all aspects of humanity. Acknowledgments: We thank the BIAL foundation for generous funding of this research, and Dr. Alessandro de Franciscis and his team for facilitating our work, as well as all those who participated.

Keywords: healing, miracles, noetic experiences, wellbeing

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