The Palliative Care Home Support Program Qualitative Evaluation
The Palliative Care Home Support Program (PCHSP) was designed to supplement existing community palliative care teams by providing specially trained community care workers (CCWs) to support palliative care patients and their families who wished to have end-of-life care in the home.
The first package of care was delivered in October 2013. Between then and 30th June 2016, the program has provided a service to 1,295 patients across 7 local health districts.
The qualitative evaluation of the PCHSP was undertaken between September 2014 and December 2015. The aim of the evaluation was to determine the extent to which specially trained CCWs were of benefit to palliative care patients and their families at the end of life in the home setting. Accordingly, data was drawn from three participant groups:
- The families of patients who received the services of the CCWs
- The CCWs who received the specialised palliative care training
- The local health district community palliative care teams
Data from the 128 family carer surveys returned to the evaluation team suggest that CCWs were able to effectively support carers and patients by meeting their needs in a sensitive, caring and professional manner. Most families (77%) who cared for a loved one at home, now knowing what that entailed, would do it again. Families made use of the support that the community care workers offered in multiple ways. These included personal care (washing, toileting), assistance with domestic tasks, sitting with the patient, overnight respite care, companionship and even advice. Data from both the 128 family carer surveys and the telephone interviews with 20 family carers found that the support provided by CCWs was greatly appreciated and some indicated that a home-death would not have been possible without their support. Where suggestions for service improvement were made, these centred on enabling more direct communication between family carers and the PCHCP Gateway Office, earlier engagement of services, and grief and counselling support.
The community care workers found the training prepared them well for the role. They found the role ‘rewarding’, ‘satisfying’, a ‘privilege’, ‘meaningful’ and at times ‘challenging’. An interest in refresher training from time to time (either face to face or online) to maintain or further develop skills was expressed by some community care workers in post-workshop surveys, 3 month surveys, and in the qualitative interviews.
Community palliative care team interviews suggest that the PCHSP is fulfilling its primary objective of supporting patients and their families in their wish to die at home. Moreover, it would appear that the program is benefiting carers and patients who, without the assistance of the PCHSP, would not have been able to achieve this.
We thank all the participants who assisted with the program evaluation. The information gained helps us to improve the delivery of the service.