International Palliative Care Network Lecture Series 2014 under the auspices of the European Association for Palliative Care

It was like ‘having a lifeboat’: family carers perceptions of the impact of a hospice at home service Jack BA 1, Groves KE 2, O’Brien MR 1, Scrutten J 1 1 Edge Hill University Ormskirk UK, 2 Queenscourt Hospice Southport UK

Name of Presenter Barbara Jack Title of Presenter Professor Institution Edge Hill University, Ormskirk UK address

About the Presenter Professor Barbara Jack is currently the Faculty of Health & Social Care, Head of Research and Scholarship as well as Director of the Evidence-based Practice Research Centre, at Edge Hill University in Ormskirk, Lancashire. Her research interests have particularly focused around End of Life Care & in 2006 she established international research links with Hospice Africa Uganda where she is now a Visiting Professor. In 2010 Barbara became chair of the Palliative Care Research Society which she still holds.

Conflict of Interest or funding source Conflict of interest: KEG is employed at the hospice where the service was developed. Source of Funding: Cheshire & Merseyside Palliative and End of Life Care Clinical Network

Background The increasing demand for the development of home-based end-of-life services is not confined to the western world. Services are emerging in resource-poor countries, where palliative care services are developing with limited facilities. Studies show interrelated factors, with an emphasis on the availability of informal carers & their ability to cope, influencing whether terminally ill patients remain at home.

The Development of the Service Local consultation with community based health care professionals identified gaps: Not enough physical caring support Lack of confidence in taking ill relative home Emergency admissions which could perhaps have been managed at home

The Hospice at Home Service A bespoke Hospice at Home service was developed in the North West of England to fill these identified gaps. Comprises 3 elements: 1Hospice Aides 2Accompanied Transfer Home 3Crisis Intervention

Aim of the study AIM: To explore bereaved family carers’ perceptions & experiences of a Hospice at Home service. Hospice Trustees granted approval to undertake the study. University research ethics committee approved the study. Access to bereavement support was available for participants if needed. Patient & Public Involvement was included in the study design.

Methods Qualitative design incorporating in depth semi structured recorded interviews. Purposive sampling, project advertised in the public arena. Past carers (aged 18+) & 3 months post death invited to participate. Analysis -Thematic analysis incorporating the stages of Organisation, Familiarisation, Reduction, Analysis. Themes & coding frame developed by 3 researchers.

Sample Participants: 30 responded 3 had not accessed the service, 2 had minimal contact 2 withdrew before consenting (illness) 3 unable to contact 20 participated Sample: 5 males: (husbands), 15 females: wives, daughters, daughter in law & mothers Age of respondents ranged from years 5 did not live with the deceased 16 of the deceased had cancer

Results Three key themes were apparent within the data: a valued presence in good hands supporting normal life

A Valued Presence Without the service participants stated they would have felt more vulnerable, lost & alone. “If I didn’t have that service...I would probably feel very, well more vulnerable than what I felt — although I did feel vulnerable — a lot more vulnerable, & a lot more anxious, & probably very alone & lost, & isolated” (Respondent 4, Husband aged 50-59)

A Valued Presence “I kind of knew when they were there, that she would be fine” (Respondent 20, Daughter aged 40-49) “ Made me feel that we were doing everything we should do” (Respondent 1, Wife aged 60-69) “Gave me more confidence & I certainly felt able to cope when they were here” (Respondent 7, Husband aged )

In Good Hands “They saved my life... I could go out without worrying” (Respondent 12, Wife aged 60-69) “I just felt like I didn’t have to worry ‘cause they were here; that’s what it felt like, it was like having the lifeboat, isn’t it, or the safety net” (Respondent 9, Mother aged 50-59)

Supporting Normal Life “It gave me a little bit more time to do things on my own, I could gather my own thoughts & rationalise things [...] it would give me a bit more time to think about, you know what the children needed to do -- so I think it's benefited the family, you know, all of us” (Respondent 4, Husband aged 50-59) “It enabled them (daughters) to go back home to their own homes & also go to work” (Respondent 11 wife aged 60-69)

Supporting Normal Life “The [HAH] night girl, she did the ironing for me — it sounds like such a simple little thing — but it meant the next day instead of sitting doing the ironing I took mum out for the day, & just being able to do that was just … it was just so nice & it’s one of my favourite memories as well, & she did that a few times for us... it just meant that we made the most of that time” (Respondent 3, Daughter aged 20-29)

Limitations of the Study A lack of an observational element & record of interventions made by the service. Potential sample bias of the criteria for accessing the service & purposive sample. One service, although the model has since been used in the design of other services.

Conclusion The additional support has a positive impact for family carers. Particularly younger carers, caring for parents & own family unit (the sandwich generation). Service helped family carers continuing with their ‘normal lives’. Positive impact on employment responsibilities. One unexpected finding was the importance carers placed upon validation of the care they were providing.

Recommendations This notion of validation suggests targeted interventions, to enable carers to gain confidence. An individual package of care based upon an ongoing assessment of carers’ needs is recommended. Vital, as the caring role changes over the disease trajectory. Adopting the philosophy of recognising family carers as co-workers & supporting them in this role, will help to facilitate carer empowerment. Reference Jack BA, O’Brien M, Scrutton J, Baldry C, Groves KE Supporting family carers providing end of life home care: a qualitative study on the impact of a hospice at home service Journal of Clinical Nursing (in press )