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PA16 Carer proofing: empowering family carers to design an online tool to meet their information needs
  1. Diamaid O’Sullivan and
  2. Paul O’Mahoney
  1. The Carers Association, Ireland


Background Among the general public there are misconceptions, sensitivities and taboos relating to Palliative Care. Furthermore, many Palliative Care recipients and Family Carers are managing with little guidance, knowledge or training.

Aim The All Island Institute for Hospice and Palliative Care (AIIHPC) funded this research to identify and evaluate community learning needs in the context of Palliative Care and propose key components of an electronic learning package and supporting materials for local communities on the island of Ireland.

Methods This research emulated a participant action research model which was developed to create an empowerment intervention for older people to protect themselves against financial abuse.1 The model is guided by principles of authentic participation and collaboration; namely through interviews and focus groups with care recipients and Family Carers with experience of Palliative Care as well as with relevant health care professionals. The research also assembled a working group of Family Carers.

Results The working group of Family Carers was supported and empowered to reflect on their personal experience, on the insight from Health Care Professionals and on creative methods of information delivery. The Working Group made specific recommendations about the content of an online learning package and the delivery mechanisms that would best meet the information needs of those new to Palliative Care.

Conclusion Placing Family Carers at the centre of the research process resulted in pragmatic recommendations and should result in the design of an effective online information tool.


  1. The O’Donnell Empowerment Model, NCPOP, UCD

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