Extrait

Background and study aims Most people want to die at home. Formal services can help people with the needs they face at the end-of-life. However, most of the time, people living with an advanced life-limiting illness are at home, supported by a network of family and friends living within a community. Each of us has a network of personal support and depending on our circumstances, we can call on people to help us. Sometimes a person living at home, who is facing the end of life, may need help with things such as taking the dog for a walk, lighting the fire or doing some shopping. However, they may be worried that they might be a burden to others, or may have no-one in their immediate circle who can help. This study explores the relationship between a person's unmet instrumental activities of daily living (tasks needed for someone to live independently) and their quality of life at the end, together with their social network, to see how it can affect where a person dies, their use of health services and their overall well-being. It also considers how we can better organise those networks by means of a Good Neighbour Partnership, to help people living with life-limiting illness, potentially making a real difference to the person needing help and also those who provide it. Who can participate? Adults (aged over 18) living in the community with a life-limiting illness in Limerick. They must be considered to be in their last year of life and have unmet social and/or practical needs. What does the study involve? Participants are randomly allocated into one of two groups. Those in group 1 (control group) receive their usual care and services. They are given a diary to record any visits they make to doctors, health centres etc over an eight week period. Participants in this group meet with the researcher for approximately 30 minutes during week 4 and week 8 of their assignment to this group. They are given questionnaires to complete that ask about unmet social and psychological needs and psychosocial wellbeing. After eight weeks, participants are given an option to take advantage of the Good Neighbour Partnership. Those in group 2 (intervention group) are invited to take advantage of the Good Neighbour Partnership immediately. The Good Neighbour Partnership can help someone with advanced illness, and their family, to find the extra social and practical support that they may need from within their community. This happens by making links with those living close by who would like to offer help. A Compassionate Communities Volunteer (CCV) meets with a person four times during the next eight weeks. The first visit takes approximately one hour and the CCV meets the person at home to identify their unmet social and practical needs and the type of support required. The CCV identifies with the person who, from within their local circle of community, the person would be happy for them to approach, to enable these needs to be met. A plan of action is agreed. A diary is given to the patient/family to record any visits they make to doctors, health centres etc during the eight week period. After the first meeting with the patient/family, the CCV makes contact with those Good Neighbours agreed in the action plan. Within seven days, the CCV visits the patient/family a second time to discuss the agreed plan. Four weeks after the initial visit the CCV visits again to determine if the system is working and if there are any further supports required. The researcher meets with the person. Eight weeks after the first visit the CCV makes a final visit and decide whether any further support is required. A final interview with the researcher is also conducted. During the meetings with the researcher, questionnaires are used to determine unmet social and psychological needs and psychosocial wellbeing. What are the possible benefits and risks of participating? There may be benefits to participants who take part in this study, particularly for those in the intervention group since they will be involved in testing a model that may reduce unmet social and practical needs immediately. During meetings with the researcher, participants will talk about their needs and support. This may result in people expressing emotions during the interviews. This is natural and the researcher will provide support as appropriate, In the event that a person requires additional support, the researcher will, with the participants permission, contact either the public health nurse or a member of Milford Care Centre's Hospice at Home team. All Compassionate Communities Volunteers have been recruited via interview, reference checked, Garda vetted, have attended training and are supervised to conduct their duties. Where is the study run from? 1. Department of Psychology, Maynooth University (Ireland) 2. Milford Care Centre, Limerick (Ireland) When is the study starting and how long is it expected to run for? February 2015 to October 2016 Who is funding the study? 1. All Ireland Institute of Hospice and Palliative Care (Ireland) 2. Irish Cancer Society Research Fellowship (Ireland) Who is the main contact? Dr Kathleen McLoughlin [email protected]

Critère d'inclusion

• Palliative and end of life care

Liens

• ictrp
• isrctn