TY - CONF

T1 - Challenges in living alone near the end of life

T2 - an international comparison from the InSup-C project

AU - Hughes, Sean

AU - Preston, Nancy Jean

AU - Payne, Sheila Alison

AU - van der Eerden, Marlieke

AU - Ewert, Benjamin

AU - Kiss, Zsuzsanna

AU - Busa, Csilla

AU - van Beek, Karen

AU - van Ende, Suzy

AU - Csikos, Agnes

AU - Groot, Marieke

PY - 2016/6/10

Y1 - 2016/6/10

N2 - BackgroundPolicy in end of life care assumes that family caregivers will be available and willing to support those living with terminal illness in the last year of life. But what are the challenges for those who live alone with varying degrees of support from family or other non-professional caregivers?Design and methodsPatients with advanced cancer, COPD and chronic heart failure (CHF), with a prognosis of less than 12 months, were recruited at clinical services sites in five European nations: Belgium, Germany, Hungary, the Netherlands and the UK. Data were collected using semi-structured interviews at baseline and at three months follow-up. Interviews focused on how integrated palliative care services responded to patients’ needs and problems. A transnational comparative analysis was conducted using a qualitative thematic approach.Results and interpretationOf 157 patient participants, 48 (30%) lived alone (range by country: 13%-41%). Of this sub-sample, the mean age was 74, 65% were women and diagnoses were: cancer 58%; COPD 27%; CHF 15%. Loneliness and/or reduced social contact were apparent in the data from all countries. In Germany, patients were concerned with meaning making and existential questions: ‘Why am I still alive?’ In the UK, positive experiences included maintaining independence and control over daily life but for some, a reliance on variable home care services was evident and replicated data from the Netherlands. In Hungary and Belgium, dealing with symptoms like pain and fatigue were main concerns of this group.ConclusionCommonalities across the participating nations in the concerns of patients living alone in the last year of life were apparent. Whilst loneliness might be a self-evident challenge, increasing social isolation had a detrimental effect for some. Further analysis comparing these experiences with those cohabiting with others is anticipated. On behalf of InSupC: EU FP7 funded project on integrated palliative care in Europe

AB - BackgroundPolicy in end of life care assumes that family caregivers will be available and willing to support those living with terminal illness in the last year of life. But what are the challenges for those who live alone with varying degrees of support from family or other non-professional caregivers?Design and methodsPatients with advanced cancer, COPD and chronic heart failure (CHF), with a prognosis of less than 12 months, were recruited at clinical services sites in five European nations: Belgium, Germany, Hungary, the Netherlands and the UK. Data were collected using semi-structured interviews at baseline and at three months follow-up. Interviews focused on how integrated palliative care services responded to patients’ needs and problems. A transnational comparative analysis was conducted using a qualitative thematic approach.Results and interpretationOf 157 patient participants, 48 (30%) lived alone (range by country: 13%-41%). Of this sub-sample, the mean age was 74, 65% were women and diagnoses were: cancer 58%; COPD 27%; CHF 15%. Loneliness and/or reduced social contact were apparent in the data from all countries. In Germany, patients were concerned with meaning making and existential questions: ‘Why am I still alive?’ In the UK, positive experiences included maintaining independence and control over daily life but for some, a reliance on variable home care services was evident and replicated data from the Netherlands. In Hungary and Belgium, dealing with symptoms like pain and fatigue were main concerns of this group.ConclusionCommonalities across the participating nations in the concerns of patients living alone in the last year of life were apparent. Whilst loneliness might be a self-evident challenge, increasing social isolation had a detrimental effect for some. Further analysis comparing these experiences with those cohabiting with others is anticipated. On behalf of InSupC: EU FP7 funded project on integrated palliative care in Europe

M3 - Conference paper

ER -