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

Journal article


Mason, Naomi and Hodgkin, Suzanne. (2019). Preparedness for caregiving : A phenomenological study of the experiences of rural Australian family palliative carers. Health and Social Care in the Community. 27(4), pp. 926-935. https://doi.org/10.1111/hsc.12710
AuthorsMason, Naomi and Hodgkin, Suzanne
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.

Keywordscaregiver; death and dying; informal care; lived experience; palliative care; phenomenology
Year2019
JournalHealth and Social Care in the Community
Journal citation27 (4), pp. 926-935
PublisherWiley-Blackwell
ISSN0966-0410
Digital Object Identifier (DOI)https://doi.org/10.1111/hsc.12710
Scopus EID2-s2.0-85062348260
Research or scholarlyResearch
Page range926-935
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online27 Feb 2019
Publication process dates
Accepted11 Dec 2018
Deposited03 Jun 2021
Permalink -

https://acuresearchbank.acu.edu.au/item/8w287/preparedness-for-caregiving-a-phenomenological-study-of-the-experiences-of-rural-australian-family-palliative-carers

Restricted files

Publisher's version

  • 100
    total views
  • 0
    total downloads
  • 1
    views this month
  • 0
    downloads this month
These values are for the period from 19th October 2020, when this repository was created.

Export as

Related outputs

Developing social work professional identity resilience : Seven protective factors
Long, Natasha, Gardner, Fiona, Hodgkin, Suzanne and Lehmann, Jennifer. (2023). Developing social work professional identity resilience : Seven protective factors. Australian Social Work. pp. 1-14. https://doi.org/10.1080/0312407X.2022.2160265
Networks of care in Australian rural ageing populations
Hodgkin, Suzanne, Mnatzaganian, George, Warburton, Jeni and Winterton, Rachel. (2022). Networks of care in Australian rural ageing populations. Journal of Rural Studies. 92, pp. 17-25. https://doi.org/10.1016/j.jrurstud.2022.03.001
Integrating facility dogs into legal contexts for survivors of sexual and family violence : Opportunities and challenges
Howell, Tiffani J., Hodgkin, Suzanne, Modderman, Corina and Bennett, Pauleen C.. (2021). Integrating facility dogs into legal contexts for survivors of sexual and family violence : Opportunities and challenges. Anthrozoös. 34(6), pp. 863-876. https://doi.org/10.1080/08927936.2021.1938406
Understanding the nature and impact of occupational stress on Australian rural aged care workers
Jones, Monica T., Heckenberg, Rachael A., Wright, Bradley J. and Hodgkin, Suzanne. (2021). Understanding the nature and impact of occupational stress on Australian rural aged care workers. Health and Social Care in the Community. 29, pp. 643-653. https://doi.org/10.1111/hsc.13338
Australian rural community aged care services : Precarity and capacity
Savy, Pauline and Hodgkin, Suzanne. (2021). Australian rural community aged care services : Precarity and capacity. Australian Journal of Public Administration. 80(2), pp. 324-339. https://doi.org/10.1111/1467-8500.12480
Age-friendly care for older adults within rural Australian health systems : An integrative review
Winterton, Rachel, Hodgkin, Suzanne, Clune, Samantha Jane and Brasher, Kathleen. (2021). Age-friendly care for older adults within rural Australian health systems : An integrative review. Australasian Journal on Ageing. 40(1), pp. 16-34. https://doi.org/10.1111/ajag.12834
The aged care sector : Residential and community care
Hodgkin, Suzanne and Mahoney, Anne-Marie. (2020). The aged care sector : Residential and community care. In In Willis, Eileen, Reynolds, Louise and Rudge, Trudy (Ed.). Understanding the Australian health care system pp. 121-135 Elsevier.
Navigating the marketisation of community aged care services in rural Australia
Hodgkin, Suzanne, Savy, Pauline, Clune, Samantha and Mahoney, Anne-Marie. (2020). Navigating the marketisation of community aged care services in rural Australia. International Journal of Care and Caring. 4(3), pp. 377-393. https://doi.org/10.1332/239788220X15875789936065
A theory of rural case management : A Delphi study
Dellemain, Jozette, Hodgkin, Suzanne and Downey, Heather. (2020). A theory of rural case management : A Delphi study. The British Journal of Social Work. p. bcaa029. https://doi.org/10.1093/bjsw/bcaa029
Expectations of care within marriage for older couples
Cash, Belinda, Warburton, Jeni and Hodgkin, Suzanne. (2019). Expectations of care within marriage for older couples. Australasian Journal on Ageing. 38(1), pp. E19-E24. https://doi.org/10.1111/ajag.12590
Comprehensive geriatric assessment programmes : Possibilities, realities and outcomes
Savy, Pauline, Hodgkin, Suzanne, Long, Karrie, Melis, Rene, Lewis, Virginia, Furler, John, Lim, Kwang, Dow, Briony and Blackberry, Irene. (2019). Comprehensive geriatric assessment programmes : Possibilities, realities and outcomes. Evaluation Journal of Australasia. 19(3), pp. 115-133. https://doi.org/10.1177/1035719X19876153
Predicting wellness among rural older Australians : A cross- sectional study
Hodgkin, Suzanne P., Warburton, Jeni and Hancock, Shaun. (2018). Predicting wellness among rural older Australians : A cross- sectional study. Rural and Remote Health. 18(3), pp. 1-13. https://doi.org/10.22605/RRH4547
Predicting wellness among rural older Australians : A cross sectional study
Hodgkin, Suzanne, Warburton, Jennifer and Hancock, Shaun. (2018). Predicting wellness among rural older Australians : A cross sectional study. Rural and Remote Health. 18(3), pp. 1-13. https://doi.org/10.22605/rrh4547
The social work hat as a metaphor for social work professional identity
Natasha, Long, Suzanne, Hodgkin, Fiona, Gardner and Jennifer, Lehmann. (2018). The social work hat as a metaphor for social work professional identity. Advances in Social Work and Welfare Education. 20(2), pp. 115-128.
The new informational paradigm : Developing practice-led approaches to the use of mobile ICT in social work
Baker, Steven, Warburton, Jeni, Hodgkin, Suzanne and Pascal, Jan. (2018). The new informational paradigm : Developing practice-led approaches to the use of mobile ICT in social work. The British Journal of Social Work. 48(6), pp. 1791-1809. https://doi.org/10.1093/bjsw/bcx124
Workforce crisis in residential aged care : Insights from rural older workers
Hodgkin, Suzanne, Warburton, Jeni, Savy, Pauline and Moore, Melissa. (2017). Workforce crisis in residential aged care : Insights from rural older workers. Australian Journal of Public Administration. 76(1), pp. 93-105. https://doi.org/10.1111/1467-8500.12204
Time, terrain and trust : Impacts of rurality on case management in rural Australia
Dellemain, J., Hodgkin, S. and Warburton, J.. (2017). Time, terrain and trust : Impacts of rurality on case management in rural Australia. Journal of Rural Studies. 49, pp. 50-57. https://doi.org/10.1016/j.jrurstud.2016.11.006
The supportive network : Rural disadvantaged older people and ICT
Baker, Steven, Warburton, Jeni, Hodgkin, Suzanne and Pascal, Jan. (2017). The supportive network : Rural disadvantaged older people and ICT. Ageing and Society. 37(6), pp. 1291-1309. https://doi.org/10.1017/S0144686X16000350
Effort-reward imbalance and intention to retire early in Australian healthcare workers
Hodgkin, Suzanne, Paul, Warren and Warburton, Jeni. (2017). Effort-reward imbalance and intention to retire early in Australian healthcare workers. Australasian Journal of Organisational Psychology. 10(e2), pp. 1-8. https://doi.org/10.1017/orp.2017.2
Challenges in the provision of community aged care services across rural Australia : Perceptions of service managers
Savy, Pauline, Warburton, Jeni and Hodgkin, Suzanne. (2017). Challenges in the provision of community aged care services across rural Australia : Perceptions of service managers. Rural and Remote Health. 17(2), pp. 1-11. https://doi.org/10.22605/RRH4059
A transformative approach to systems theory in caregiving research
Cash, Belinda, Hodgkin, Suzanne and Warburton, Jeni. (2017). A transformative approach to systems theory in caregiving research. Qualitative Social Work. 18(4), pp. 710-726. https://doi.org/10.1177/1473325017749988
Practitioners' perspectives on choice for older spousal caregivers in rural areas
Cash, Belinda, Hodgkin, Suzanne and Warburton, Jeni. (2016). Practitioners' perspectives on choice for older spousal caregivers in rural areas. Australian Social Work. 69(3), pp. 283-296. https://doi.org/10.1080/0312407X.2015.1074258
Intergenerational solidarity : An investigation of attitudes towards the responsibility for formal and informal elder care in Australia
Hodgkin, Suzanne. (2014). Intergenerational solidarity : An investigation of attitudes towards the responsibility for formal and informal elder care in Australia. Health Sociology Review. 23(1), pp. 53-64. https://doi.org/10.5172/hesr.2014.23.1.53
Extrinsic and intrinsic factors impacting on the retention of older rural healthcare workers in the north Victorian public sector : A qualitative study
Warburton, Jeni, Moore, Melissa L., Clune, Samantha J. and Hodgkin, Suzanne P.. (2014). Extrinsic and intrinsic factors impacting on the retention of older rural healthcare workers in the north Victorian public sector : A qualitative study. Rural and Remote Health. 14(3), pp. 1-16.
Building social inclusion for rural older people using information and communication technologies : Perspectives of rural practitioners
Warburton, Jeni, Cowan, Sue, Winterton, Rachel and Hodgkins, Suzanne. (2014). Building social inclusion for rural older people using information and communication technologies : Perspectives of rural practitioners. Australian Social Work. 67(4), pp. 479-494. https://doi.org/10.1080/0312407X.2013.834064
Till Death Us Do Part? A critical analysis of Obligation and Choice for Spousal Caregivers
Cash, Belinda, Hodgkin, Suzanne and Warburton, Jeni. (2013). Till Death Us Do Part? A critical analysis of Obligation and Choice for Spousal Caregivers. Journal of Gerontological Social Work. 56(8), pp. 657-674. https://doi.org/10.1080/01634372.2013.823472
'I'm older and more interested in my community’ : Older people's contributions to social capital
Hodgkin, Suzanne. (2012). 'I'm older and more interested in my community’ : Older people's contributions to social capital. Australasian Journal on Ageing. 31(1), pp. 34-39. https://doi.org/10.1111/j.1741-6612.2011.00528.x
Using mixed methods to develop and implement a work sampling tool in residential aged care
Hodgkin, Suzanne, Warburton, Jeni and Savy, Pauline. (2012). Using mixed methods to develop and implement a work sampling tool in residential aged care. International Journal of Multiple Research Approaches. 6(1), pp. 23-32. https://doi.org/10.5172/mra.2012.6.1.23
Participating in social, civic, and community life : Are we all equal?
Hodgkin, Suzanne. (2011). Participating in social, civic, and community life : Are we all equal? Australian Social Work. 64(3), pp. 245-265. https://doi.org/10.1080/0312407X.2011.573798
Inner wheel or inner sanctum : Gender and the social capital debate
Hodgkin, Suzanne. (2009). Inner wheel or inner sanctum : Gender and the social capital debate. Australian Feminist Studies. 24(62), pp. 439-452. https://doi.org/10.1080/08164640903289310
Telling it all : A story of women's social capital using a mixed methods approach
Hodgkin, Suzanne. (2008). Telling it all : A story of women's social capital using a mixed methods approach. Journal of Mixed Methods Research. 2(4), pp. 296-316. https://doi.org/10.1177/1558689808321641
Competing demands, competing solutions, differing constructions of recruitment and retention of frontline rural child protection staff
Hodgkin, Suzanne. (2002). Competing demands, competing solutions, differing constructions of recruitment and retention of frontline rural child protection staff. Australian Social Work. 55(3), pp. 193-203. https://doi.org/10.1080/03124070208410975