The recipient of the Ian Maddocks Guest Lecture is considered to be the best submission by an author under the age of 40 who is engaged in the study or delivery of palliative care in any of its component disciplines. The winner will be required to present their abstract in a plenary session at the conference.
Preparedness for Caregiving: A phenomenological study of the experiences of regional family palliative carers
Presenter: Naomi Mason, East Hume Palliative Care Consultancy Service, Albury Wodonga Health
Date: Thursday 12 September 2019
Session: Plenary Session, Ian Maddock Guest Lecture
The care of people with life-limiting illness is increasingly moving away from the acute setting into the community, with the family caregiver role growing in significance and complexity. The importance of preparing and supporting family carers has been well established, however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum inclusive of bereavement.
This 2017 study aimed to explore how regional family palliative carers described their caregiving preparedness. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N=10) aged between 55-87 years. Participants were recruited voluntarily through past engagement with a Victorian Regional Specialist Palliative Care Service. Bereavement occurred between 3-13 months prior to interview.
The experiences of caregivers illuminated a lack of preparedness for the role and were characterised by three major themes: Into the unknown, Into the battle and Into the void. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief. Battles were fought at intrapsychic, interpersonal and systemic levels. The void was felt during isolation in caregiving; at role relinquishment; in bereavement; and in feeling abandoned by services. Positive experiences occurred less frequently but appeared to temporarily buffer against the negative aspects of the unknown, battle and void. Implications from this study for policy and practice centre on frequent, purposeful and genuine caregiver engagement. Services are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and improve caregiver support at role relinquishment.
Naomi Mason is a Social Worker, Counsellor and former Registered Music Therapist. Her clinical experience encompasses community health, mental health, aged and palliative care. Naomi’s research interests include caregiving, rural health and psychosocial issues in palliative care. She is currently researching and developing an Evidence-Based Grief and Bereavement Framework for regional and rural community palliative care services