Background: In early 2018, a needs assessment commenced aiming to identify what is currently working well and in what areas improvements are required for palliative and end of life care on the Isle of Man. One finding was that little is known about the experiences of those whose loved ones die on the Island, particularly if those deaths occur outside Hospice.
Aim: To obtain information on the experience and perceptions of those bereaved on the Isle of Man in order to improve end of life care.
Background: Project ECHO® (Extension for Community Healthcare Outcomes) is a telementoring model developed by the School of Medicine at the University of New Mexico (UNM). On the Isle of Man, the model is being used to create a supportive community of practice for professionals providing end of life care in the community. To achieve this, mentoring sessions are held with Hospice Isle of Man as the hub and nursing/ residential homes and care agencies as spokes.
Aim: To evaluate the progress and impact of Project ECHO® in end of life care on the Isle of Man
Background: Hospice Isle of Man has conducted its first clinical trial which is only the second trial solely based on the IOM. Following a dementia diagnosis, much of the care is performed at home by the person with dementia’s loved ones and friends (informal carers). This is creating a growing need for ‘at home support’ for both the person with dementia and their family and friends. We have collaborated with a local company (Memory Lanes Games) who have created a ‘personalised’ memory games application (app) to see if playing on the app helps improve quality of life and communication.
Aims: We hope to find out whether a personalised memory game application helps improve the quality of life of both people with dementia and their informal carers. This was a pilot study, so we are also assessing whether the tools used (questionnaires and assessments) are appropriate and evaluating if there is the potential for a larger scale research study.
Background: Compassionate Isle of Man aims to nurture communities that improve well-being, build resilience at times of crisis and personal loss, support people to be compassionate and provide companionship at the end of life.
Aim: To evaluate the progress of Compassionate Isle of Man.
Background: As a result of lockdown on the Island, a large number of community organisations and groups on the Isle of Man have got together to keep in touch with and assist members of their community. The experience of these spontaneously-created groups in identifying community needs and attempting to generate kindness locally would be very valuable to the development of Compassionate Isle of Man.
Aims: To find out what local groups have been formed, to ask them about their experiences of supporting their communities, and to find out their views on the types and amounts of support required and what is likely to be available and not available when the lockdown ends.
Background: The Fatigue and Breathlessness (FAB) Follow-on programme, run by the Rehabilitation Team, helps people manage fatigue and breathlessness symptoms caused by a life-limiting condition, such as cancer or chronic obstructive pulmonary disease (COPD), or as a result of treatment(s) for the condition. Due to the Coronavirus outbreak on the Isle of Man, the FAB Follow-on sessions have been delivered via Zoom teleconferencing technology to enable members to take part from their own homes.
Aim: To ask members of the FAB Follow-on group about their experiences and views towards recent changes to the service as a result of Coronavirus protective measures, and to find out their preferences and recommendations for future service delivery.
Background: Because professionals bring technical expertise and each person is an expert in his/her own unique “lived experience”, the development of effective person-centred integrated care needs contributions from both professionals and patients/families. However, services are usually developed mainly from the viewpoint of the professionals. One means of incorporating patient/family experiences is to directly collect from them, in a diary, information on all the types of care which they use, no matter whether from the health services, charities or private care. This provides a picture of the care system, from the patient/family viewpoint.
Aim: To illustrate the experience of care and care coordination from the patient’s and/or family or carer’s viewpoint.
Background: Three of the OACC measures – the Stage of Illness, Karnofsky score and IPOS – were introduced into clinical practice at Hospice Isle of Man in July 2019. By July 2020, all clinical staff should have been using some or all of these measures at appropriate stages of care. We are aware that staff have questions about some aspects of use, such as when the measures should be applied, and we need to understand these questions in order to standardise the use of the measures.
Aim: To obtain views of clinical staff on their confidence in using the OACC measures appropriately, any problems they have encountered and any views on how to improve their use and usefulness.
Background: With the rise of psychological concerns among young people in the IOM, two young local people designed a ‘Thought Journal’ in 2016 as a daily support aid, inspired by the resources that helped them through their personal experiences of mental health difficulties and use of mental health services. The Thought Journal includes a variety of components aimed at supporting mental well-being, including guided self-reflection, goal-setting, advice, and mindfulness colouring. This offers a single, structured tool that incorporates many of the aspects of current therapeutic journals in circulation, whilst offering users the flexibility to make the journal person-centred. In order to enhance and maximise those aspects of the Thought Journal that are perceived most beneficial, its use is being compared to an unstructured approach to journaling. Users' feedback and perceptions of support workers who supply the Thought Journal to young people will be used to investigate who benefits from using it.
Aim: To improve the Thought Journal through feedback on the design and perceived benefits from young users and support workers.
Background: Caring for someone at the end of life can be very challenging and have impacts on carers’ quality of life. Hospice Isle of Man is dedicated to providing person-centred integrated palliative and end-of-life care to patients and families. In order to provide evidence to inform strategy development, in 2018, Hospice Isle of Man’s Carers Working Group conducted a carer experience survey.
Aim: To better understand each carer’s experience to identify features that might help inform carer support services.
Background: The health care system of the Isle of Man has responded to the threat of the COVID-19 pandemic in a number of ways. One of these has been the delivery of routine services. Hospice Isle of Man, like many others, has reoriented and adapted its services to continue to care for patients in a safe manner under lockdown. These changes brought about by forced innovation have provided the opportunity to try new ways of delivering care.
Aims: To understand the impact of ‘forced innovation’ on self-management and resilience of patients and their carers, to explore the self-perceived impact on staff, and to estimate the economic impact on Hospice Isle of Man.
Background: Caring for people in the last phase of life is challenging, though potentially rewarding, for families, carers and service providers. If services and support are to be extended to all who might benefit, limited resources will be stretched. A plan is required to ensure that this is done fairly and in a way which maximises benefit to the population.
Aim: To examine the current and near future needs of the Isle of Man in the area of palliative and end of life care. This project provides an evidence base for the transformation of services on the Island and should feed into relevant Joint Strategic Needs Assessments. It is aimed at a wide audience who have an interest in the improvement of palliative and end of life care on the Island.
Background: Hospice Isle of Man seeks to review the experience of its respite services for both patients and carers in order to improve the service in future.
Aims: To explore patients and carer’s perceptions and preferences for respite care provided by Hospice Isle of Man to inform future service provision.
Background: Integrated Care is an international movement designed to improve the delivery of health and social care to improve the experience and outcomes for people accessing them. It has four aims: 1. to improve the health of people and populations. 2. To improve people’s experience of care. 3. to improve cost effectiveness. 4. To improve the work life balance of carers and staff. In April 2018, the Department of Health and Social Care established an Integrated Care Project Team to plan and implement a pilot project in the west of the Isle of Man. Members of the Scholl Academic Centre research team are working with the Project evaluation team to ensure that the project meets its goals.
Aim: To evaluate the progress of the Western Integrated Care Pilot Project.
Background: In September 2018, a Journal Club was launched in Hospice Isle of Man. The club was designed and introduced by Diane Corrin, nurse consultant, with support from the Scholl Academic Centre research team. Journal Club meetings are held monthly and aim to create a safe environment where clinicians and researchers can explore and discuss research. It aims to build on staff’s existing knowledge and understanding of research and improve their confidence when reading, critiquing and conducting research. This supports Hospice Isle of Man’s development as a Research Active Hospice.
Aim: To provide support for the Journal Club and to collect feedback from attendees of the Journal Club in order to demonstrate value and improve the format of meetings.