Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers

Abstract

The care of people with life‐limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi‐structured interviews with four women and six men (N = 10, aged 55–87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.

Needs of caregivers of patients receiving in-home palliative and end-of-life care

“…In addition, caregivers report difficulty in adapting to changes in the relationship when the caregiver role becomes predominant, thus redefining the very nature of the relationship (Totman et al, 2015). Finally, caregivers express fears regarding the end-of-life process (Soroka et al, 2018) and recognize a lack of preparedness with respect to bereavement (Mason & Hodgkin, 2019).…”

Understanding the Needs of Australian Carers of Adults Receiving Palliative Care in the Home: A Systematic Review of the Literature

“…All carers described in the literature were impacted in many ways during the caring period, but those living in outer regional, rural or remote areas in Australia were greatly affected by service availability and geographical barriers. Part-time and/or inexperienced health professionals, lack of local referral knowledge and diagnostic delays or gaps in services caused difficulties for some regional and rural patients (Lee et al, 2009;Mason & Hodgkin, 2019) and time and money required for travelling into the city for appointments added to the carer's burden (Hatcher et al, 2014;Lee et al, 2009;Mason & Hodgkin, 2019). Remote outback communities were also affected by seasonal weather patterns; roads could be cut off by heavy rains limiting service delivery during the wet season (Dembinsky, 2014).…”

“…Fourteen of the 16 papers discussed the carers' physical, emotional needs and/or health status as a result of undertaking the caring role (Aoun et al, 2010;Dembinsky, 2014;Essue et al, 2015;Hatcher et al, 2014;Heidenreich et al, 2014;Keesing et al, 2011;Kenny et al, 2010;Lee et al, 2009;Mason & Hodgkin, 2019;McConigley et al, 2010;McNamara & Rosenwax, 2010;O'Connor et al, 2009;Sekelja et al, 2010;Wong & Ussher, 2009). Carers reported fatigue and exhaustion and found it hard to balance all their normal roles, which for some included caring for elderly parents or grandchildren (Lee et al, 2009).…”

“…Carers reported fatigue and exhaustion and found it hard to balance all their normal roles, which for some included caring for elderly parents or grandchildren (Lee et al, 2009). The pressure of hands-on-care added to the desperate need for formal and informal respite (which could be limited) whether to catch up on sleep, shop or attend appointments (Hatcher et al, 2014;Mason & Hodgkin, 2019;McConigley et al, 2010;Sekelja et al, 2010). Seeking assistance was especially difficult for the carers of people with brain cancer as they refused to leave the care of the patient with inexperienced friends or neighbours due to the high risk of the patient seizing (McConigley et al, 2010).…”

Besoins des proches aidants qui accompagnent une personne en soins palliatifs et de fin de vie à domicile

“…De plus, les PA rapportent la difficulté de s'adapter aux changements dans la relation lorsque le rôle de soignant devient prépondérant, redéfinissant ainsi la nature de la relation (Totman et al, 2015). Enfin, les PA expriment des craintes par rapport au processus de fin de vie (Soroka et al, 2018) et constatent un manque de préparation au deuil (Mason et Hodgkin, 2019).…”