Register      Login
Australian Journal of Primary Health Australian Journal of Primary Health Society
The issues influencing community health services and primary health care
RESEARCH ARTICLE (Open Access)

Evaluation of an online toolkit for carers of people with a life-limiting illness at the end-of-life: health professionals’ perspectives

D. Parker https://orcid.org/0000-0003-2552-8613 A , P. Hudson https://orcid.org/0000-0001-5891-8197 B C E , J. Tieman https://orcid.org/0000-0002-2611-1900 D , K. Thomas https://orcid.org/0000-0002-0214-1865 B , D. Saward B and S. Ivynian https://orcid.org/0000-0001-6984-8702 A F
+ Author Affiliations
- Author Affiliations

A Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia.

B Centre for Palliative Care, St Vincent’s Hospital Melbourne, Melbourne, Vic., Australia.

C Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Vic., Australia.

D Research Centre for Palliative Care, Death and Dying, Flinders University, Adelaide, SA, Australia.

E Vrije University, Brussels, Belgium.

F Corresponding author. Email: serra.ivynian@uts.edu.au

Australian Journal of Primary Health 27(6) 473-478 https://doi.org/10.1071/PY21019
Submitted: 1 February 2021  Accepted: 3 June 2021   Published: 22 November 2021

Journal Compilation © La Trobe University 2021 Open Access CC BY-NC-ND

Abstract

Carers of people with a life-limiting illness report unmet information, practical, and emotional support needs, and are often unaware of services available to help improve preparedness, wellbeing, and reduce strain. CarerHelp is the first e-health toolkit that focuses on the information and support needs of carers of people with a life-limiting illness at the end-of-life, using a pathway approach. This study investigated the usefulness of CarerHelp, from the perspective of health professionals who care for these people. Through a 10-min online survey, health professionals provided feedback about their user experience and perceived usefulness of the website. Their expert opinion was sought to ascertain whether CarerHelp could increase carers’ preparedness and confidence to support the person for whom they are caring and thereby improve carers’ own psychological wellbeing. Health professionals also evaluated whether CarerHelp adequately raised awareness of support services available. CarerHelp was perceived as a useful resource for increasing preparedness for the caring role, including physical tasks and emotional support. Health professionals reported that CarerHelp would increase carers’ knowledge of services, confidence to care and ability for self-care. Health professionals endorsed CarerHelp as a useful information source, guide for support, and would promote CarerHelp to clients and their families.

Keywords: carer strain, palliative care, home death, e-health, end of life, carers, terminally ill, e-resource.


References

Aoun SM, Bentley B, Funk L, Toye C, Grande G, Stajduhar KJ (2013) A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions. Palliative Medicine 27, 437–446.
A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions.Crossref | GoogleScholarGoogle Scholar | 22907948PubMed |

Arias Rojas M, García-Vivar C (2015) The transition of palliative care from the hospital to the home: a narrative review of experiences of patients and family caretakers. Investigacion y Educacion en Enfermeria 33, 482–491.
The transition of palliative care from the hospital to the home: a narrative review of experiences of patients and family caretakers.Crossref | GoogleScholarGoogle Scholar | 28569956PubMed |

Australian Commission on Safety and Quality in Health Care (2017) ‘National Safety and Quality Health Service Standards.’ 2nd edition. (Australian Commission on Safety and Quality in Health Care: Sydney, NSW, Australia)

Australian Government Department of Social Services (2020) Carer Gateway. (Department of Social Services: Canberra, ACT, Australia) Available at https://www.carergateway.gov.au/ [Verified 1 September 2020]

Barker S, Lynch M, Hopkinson J (2017) Decision making for people living with dementia by their carers at the end of life: a rapid scoping review. International Journal of Palliative Nursing 23, 446–456.
Decision making for people living with dementia by their carers at the end of life: a rapid scoping review.Crossref | GoogleScholarGoogle Scholar | 28933994PubMed |

Beattie S, Lebel S (2011) The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review. Psycho-Oncology 20, 1137–1150.
The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review.Crossref | GoogleScholarGoogle Scholar | 21425389PubMed |

Bergin S, Mockford C (2016) Recommendations to support informal carers of people living with motor neurone disease. British Journal of Community Nursing 21, 518–524.
Recommendations to support informal carers of people living with motor neurone disease.Crossref | GoogleScholarGoogle Scholar | 27715256PubMed |

Boyd KJ, Murray SA, Kendall M, Worth A, Benton TF, Clausen H (2004) Living with advanced heart failure: a prospective, community based study of patients and their carers. European Journal of Heart Failure 6, 585–591.
Living with advanced heart failure: a prospective, community based study of patients and their carers.Crossref | GoogleScholarGoogle Scholar | 15302006PubMed |

CarerHelp Project Team (2020) CarerHelp: a guide to end of life caring. (Flinders University: Adelaide, SA, Australia) Available at https://www.carerhelp.com.au/

Cherlin EJ, Barry CL, Prigerson HG, Green DS, Johnson-Hurzeler R, Kasl SV, Bradley EH (2007) Bereavement services for family caregivers: how often used, why, and why not. Journal of Palliative Medicine 10, 148–158.
Bereavement services for family caregivers: how often used, why, and why not.Crossref | GoogleScholarGoogle Scholar | 17298263PubMed |

Doherty LC, Fitzsimons D, McIlfatrick SJ (2016) Carers’ needs in advanced heart failure: a systematic narrative review. European Journal of Cardiovascular Nursing 15, 203–212.
Carers’ needs in advanced heart failure: a systematic narrative review.Crossref | GoogleScholarGoogle Scholar | 25922473PubMed |

Foreman LM, Hunt RW, Luke CG, Roder DM (2006) Factors predictive of preferred place of death in the general population of South Australia. Palliative Medicine 20, 447–453.
Factors predictive of preferred place of death in the general population of South Australia.Crossref | GoogleScholarGoogle Scholar | 16875116PubMed |

Funk L, Stajduhar KI, Toye C, Aoun S, Grande G, Todd CJ (2010) Part 2: home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008). Palliative Medicine 24, 594–607.
Part 2: home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008).Crossref | GoogleScholarGoogle Scholar | 20576673PubMed |

Gomes B, Higginson IJ (2006) Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ (Clinical Research Ed.) 332, 515–521.
Factors influencing death at home in terminally ill patients with cancer: systematic review.Crossref | GoogleScholarGoogle Scholar | 16467346PubMed |

Grbich C, Parker D, Maddocks I (2001) The emotions and coping strategies of caregivers of family members with a terminal cancer. Journal of Palliative Care 17, 30–36.
The emotions and coping strategies of caregivers of family members with a terminal cancer.Crossref | GoogleScholarGoogle Scholar | 11324182PubMed |

Harris M, Thomas G, Thomas M, Cafarella P, Stocks A, Greig J, McEvoy RD (2018) Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: a scoping review and synthesis. Palliative & Supportive Care 16, 228–237.
Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: a scoping review and synthesis.Crossref | GoogleScholarGoogle Scholar |

Hsieh HF, Shannon SE (2005) Three approaches to qualitative content analysis. Qualitative Health Research 15, 1277–1288.
Three approaches to qualitative content analysis.Crossref | GoogleScholarGoogle Scholar | 16204405PubMed |

Hudson P, Payne S (2011) Family caregivers and palliative care: current status and agenda for the future. Journal of Palliative Medicine 14, 864–869.
Family caregivers and palliative care: current status and agenda for the future.Crossref | GoogleScholarGoogle Scholar | 21599532PubMed |

Morris SM, King C, Turner M, Payne S (2015) Family carers providing support to a person dying in the home setting: a narrative literature review. Palliative Medicine 29, 487–495.

Palliative Care Australia (2018a) ‘National Palliative Care Standards.’ 5th edn. (PCA: Canberra, ACT, Australia)

Palliative Care Australia (2018b) Palliative Care Service Development Guidelines. Palliative Care Australia, Canberra, ACT, Australia.

Parker D, Ivynian SE (2020) University of Technology Sydney Evaluation Report of CarerHelp.

Poppe C, Koné I, Iseli LM, Schweikert K, Elger BS, Wangmo T (2020) Differentiating needs of informal caregivers of individuals with ALS across the caregiving course: a systematic review. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 21, 519–541.

Terry W, Olson L, Wilss L, Boulton‐Lewis G (2006) Experience of dying: concerns of dying patients and of carers. Internal Medicine Journal 36, 338–346.
Experience of dying: concerns of dying patients and of carers.Crossref | GoogleScholarGoogle Scholar | 16732857PubMed |

Ward-Griffin C, McKeever P (2000) Relationships between nurses and family caregivers: partners in care? Advances in Nursing Science 22, 89–103.
Relationships between nurses and family caregivers: partners in care?Crossref | GoogleScholarGoogle Scholar | 10711807PubMed |