Distance caregiving in palliative care: a mixed methods study exploring the role of ehealth

Background: There are an estimated 500,000 family carers in the UK providing care to a relative near the end of life. While the needs of local caregivers have received considerable attention, little is known about those who provide care from a distance. This PhD aimed to explore how distance shapes caregiving in palliative care, and how distance caregivers use ehealth. Methods: A mixed methods design was used. Survey participants were recruited through social media and hospice staff. The questionnaire comprised sections about: relationship and distance; use of Information and Communication Technologies (ICT); the Hospital Anxiety and Depression Scale (HADS); and the Family Inventory of Needs (FIN). A subgroup of questionnaire respondents were interviewed; these data were analysed using Framework Analysis. The two methodologies captured complementary aspects of distance caregiving. Results: Survey responses were obtained from 79 participants (87% responded online). Distance caregivers were commonly women of middle age in paid work providing care to a parent. 93.2% reported that they used ICT in their role as caregivers; 86.6% found that helpful. Twenty-one survey respondents in eight countries were interviewed via telephone, Skype® or FaceTime®, and were asked about their experience of distance caregiving, and their use of ICT as carers. Three themes were identified: Connectedness showed that the deep emotional connection between the caregiver and the patient remained intact despite the distance; Uncertainty looked at how distance added further uncertainty to the caregiving experience in palliative care; and Psychological Struggle examined the emotional conflict experienced by distance caregivers, who felt their lives were divided in two different worlds. Participants used ICT in a variety of ways to overcome distance. Conclusions: Distance caregiving in palliative care is a complex phenomenon that has received little attention from researchers and policy makers. Findings from this study indicate the need for future research to determine a universal definition of distance caregiving, to ensure that these carers are identified in clinical settings and receive appropriate support. The applications of ehealth in palliative care distance caregiving need to be explored.

Grantor dc:publisher

Oxford Brookes University

Year dc:date

2017

Author dc:creator

• Casañas i Comabella, Carolina

Contributors dc:contributor

• Boulton, Mary
• Watson, Eila
• Wee, Bee

Statement dc:rights

• All rights reserved

Language dc:language

en

DOI dc:identifier

https://doi.org/10.24384/sfy9-y849

OAI identifier oai:identifier

tle:2e48b161-2570-4b1a-a0a3-4721b9f2e7d1:d6bd9758-527a-46cd-bfe2-c433766e8fca:1