Background

Family/carers support is emphasised in the National Palliative Care Strategy 2018. An investigation of families/carers experiences is important when evaluating palliative care interventions in aged care. As part of the evaluation of Comprehensive Palliative Care in Aged Care project in South Australia, we developed strategies to seek families/carers feedback.  

Aim

To present our experience of processes and challenges in engaging with families/carers in aged care settings in the evaluation of palliative care interventions

Methods 

As part of the evaluation framework, we planned to recruit families from private and public aged care facilities to examine their experience of interactions with the facility and to determine facilitators and barriers to family support by employing qualitative interviews and journey tracking. 

Findings

The inclusion of families/carers voices not only enhances the meaning of the evaluation work but is also a means to measure changes in practice that are being investigated.  However, our experience has shown complexities in identifying and recruiting families/carers which to some extent reflect the level of their engagement with the facility. 

For residents at the end-of-life stage it is important to understand the nuances of the resident’s health and the contextual circumstances at the time of death.  This information, from the families’ perspective, can assist in our understanding of how to support families during grief and bereavement. These circumstances may create additional complexity for researchers and evaluators in their engagement with families. 

Lastly, the ethical issues around family engagement during a highly emotional time when the resident is at the end-of-life stage must be considered and all communications and interactions must reflect this sensitivity.   

Learnings

Family voices and experiences are vital in determining the quality of palliative care delivery in aged care. Even though recruitment can be difficult, and engagement requires flexibility, understanding and respect. 

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