CoChat
Sign Up
Cited by 10Nursing care and researchCancer survivorship and careFamily Support in Illness

Access to support for Australian cancer caregivers: in-depth qualitative interviews exploring barriers and preferences for support

Open access
Taylor, Jo, Fradgley, Elizabeth A., Clinton-McHarg, Tara, Byrnes, Emma, Paul, Christine L.·2021·Journal of Psychosocial Oncology Research & Practice
DOI 10.1097/or9.0000000000000047
Open this paper in CoChat — free account

Abstract

Abstract Introduction: Caregivers are critical to patient-centered care and can benefit from supportive care interventions such as counseling. However, the barriers to supportive care for caregivers are poorly understood. This Australian study explores caregivers’ experiences when accessing care to support their own wellbeing. Method: Semi-structured telephone interviews were conducted with a diverse sample of distressed caregivers who contacted the Cancer Council New South Wales and Victoria helpline. Grounded theory framework informed the generation of themes with data analyzed by two independent coders. Results: Caregivers (n = 14) included: partners (n = 8), parents (n = 3), child (n = 1), sibling (n = 1), and friend (n = 1). Two major themes emerged. First, caregivers face multiple barriers when accessing supportive care including: deprioritization of their needs; limited opportunity to express needs; poor availability; lack of time and lack of local services. Secondly, caregivers preferred the delivery of support to be: via face-to-face or telephone; separate to patient; and to occur while the patient receives treatment. Conclusions: Tailored pathways for new and existing services that are flexible and accessible are important in supporting caregiver's wellbeing. Caregivers must be encouraged to acknowledge and discuss their own needs.

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Integrity signals

Registry

Crossref · 10.1097/or9.0000000000000047

Cites

9 of 9 references verified0 citation errors · 0 not checkable

Statistics

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

  • Caregivers often cannot access services due to constraints such as time, finances, travel, patient-focused view, lack of resources, negative perceptions of mental health professionals and services, and stigma avoidance.

    “caregivers often cannot access services due to a variety of constraints (e.g., time, finances, travel, patient-focused view, lack of resources, negative perceptions of mental health professionals and services, stigma avoidance) [23–25].”

    From It is time to address fear of cancer recurrence in family caregivers: protocol for the feasibility and acceptability of a randomized pilot study of the online version of the Family Caregiver–Fear Of Recurrence Therapy (FC-FORT) (2024) · cites this paper as [24]

    The Results and Discussion describe time constraints, travel distance, unavailable services, and caregivers putting patients’ needs ahead of their own as barriers to support. The Results mention difficulty accessing financial assistance, but do not establish that lack of money prevented access to supportive services. The passages do not identify negative perceptions of mental health professionals or stigma avoidance as barriers. (LLM, conf=0.88)

    Experimental — accuracy not yet measured

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Cites

Flagged first, then by citations

Research works printed but not linked: 19

  1. [1][1] Northouse LL, Katapodi MC, Schafenacker AM, Weiss D. The impact of caregiving on the psychological well-being of family caregivers and cancer patients. Semin Oncol Nurs 2012;28:236–245. Cited HereCrossRefPubMedGoogle Scholar
  2. [3][3] Haun MW, Sklenarova H, Brechtel A, Herzog W, Hartmann M. Distress in cancer patients and their caregivers and association with the caregivers’ perception of dyadic communication. Oncol Res Treat 2014;37:384–388. Cited HereGoogle Scholar
  3. [4][4] Chambers S, Girgis A, Occhipinti S, et al. Psychological distress and unmet supportive care needs in cancer patients and carers who contact cancer helplines. Eur J Cancer Care (Engl) 2012;21:213–223. Cited HereFull TextCrossRefPubMedGoogle Scholar
  4. [5][5] Teixeira RJ, Applebaum AJ, Bhatia S, Brandão T. The impact of coping strategies of cancer caregivers on psychophysiological outcomes: an integrative review. Psychol Res Behav Manag 2018;11:207. Cited HereGoogle Scholar
  5. [10][10] Fitch M. Supportive care framework. Can Oncol Nurs J 2008;18:6–14. Cited HereCrossRefPubMedGoogle Scholar
  6. [11][11] Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer 2009;17:1117–1128. Cited HereCrossRefPubMedGoogle Scholar
  7. [13][13] Livingston PM, Osborne RH, Botti M, et al. Efficacy and cost-effectiveness of an outcall program to reduce carer burden and depression among carers of cancer patients [PROTECT]: rationale and design of a randomized controlled trial. BMC Health Serv Res 2014;14:1. Cited HereGoogle Scholar
  8. [15][15] Balfe M, Keohane K, O’brien K, Sharp L. Social networks, social support and social negativity: a qualitative study of head and neck cancer caregivers’ experiences. Eur J Cancer Care (Engl) 2017;26:e12619. Cited HereFull TextCrossRefGoogle Scholar
  9. [16][16] Minaya P, Baumstarck K, Berbis J, et al. The CareGiver Oncology Quality of Life questionnaire (CarGOQoL): development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer. Eur J Cancer 2012;48:904–911. Cited HereCrossRefPubMedGoogle Scholar
  10. [17][17] Luo X, Gao L, Li J, Lin Y, Zhao J, Li Q. A critical literature review of dyadic web-based interventions to support cancer patients and their caregivers, and directions for future research. Psychooncology 2020;29:38–48. Cited HereFull TextCrossRefPubMed
  11. [19][19] Arber A, Faithfull S, Plaskota M, Lucas C, De Vries K. A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services. Int J Palliat Nurs 2010;16:24–30. Cited HereCrossRefPubMedGoogle Scholar
  12. [20][20] Fradgley EA, Boltong A, O’Brien L, et al. Implementing systematic screening and structured care for distressed callers using Cancer Council's Telephone Services: protocol for a randomized stepped-wedge trial. JMIR Res Protoc 2019;8:e12473. Cited HereGoogle Scholar
  13. [22][22] Mehta A, Chan LS, Cohen SR. Flying blind: sources of distress for family caregivers of palliative cancer patients managing pain at home. J Psychosoc Oncol 2014;32:94–111. Cited HereCrossRefPubMedGoogle Scholar
  14. [23][23] Strauss AL. Qualitative Analysis for Social Scientists. 1987;Cambridge University Press, Cited Here
  15. [26][26] Houldin AD. A qualitative study of caregivers’ experiences with newly diagnosed advanced colorectal cancer. Oncol Nursing Forum 2007;34:323–330. Cited HereGoogle Scholar
  16. [27][27] Alfano CM, Rowland JH. Recovery issues in cancer survivorship: a new challenge for supportive care. Cancer J 2006;12:432–443. Cited HereFull TextCrossRefPubMedGoogle Scholar
  17. [29][29] Richards-Jones S, Mihalopoulos C, Heckel L, Gunn KM, Tan M, Livingston PM. An economic evaluation of a telephone outcall intervention for informal carers of cancer patients in Australia: An assessment of costs and quality-adjusted-life-years. Psychooncology 2019;28:525–532. Cited HereCrossRefPubMed
  18. [30][30] Linehan K, Fennell KM, Hughes DL, Wilson CJ. Use of the distress thermometer in a cancer helpline context: can it detect changes in distress, is it acceptable to nurses and callers, and do high scores lead to internal referrals? Eur J Oncol Nurs 2017;26:49–55. Cited HereCrossRefPubMedGoogle Scholar
  19. [31][31] Corry M, While A, Neenan K, Smith V. A systematic review of systematic reviews on interventions for caregivers of people with chronic conditions. J Adv Nurs 2015;71:718–734. Cited HereFull TextCrossRefPubMedGoogle Scholar Keywords: Access; Barriers; Cancer; Caregivers; Qualitative; Supportive care Supplemental Digital Content OR9_2021_03_11_TAYLOR_JPORP-20-033_SDC1.docx (17.66 KB) OR9_2021_03_11_TAYLOR_JPORP-20-033_SDC2.docx (13.73 KB) Image Gallery Copyright © 2021 The Authors. Published by Wolters Kluwer Health Inc., on behalf of the International Psycho-Oncology Society. View full text | Download PDF Advertisement Related Articles A qualitative study exploring the support needs of caregivers to older adults with depression Family Caregivers of Cancer Patients Supporting Black breast cancer survivors and their informal caregivers: a qualitative dyadic analysis of intervention preferences Exploring the Service Features of Telephone Cancer Information and Support Services From Callers' Experiences Scoping review of AI–chatbots to support family caregivers Advertisement Readers Of this Article Also Read There's no published content available here at the moment. Please check back again later. There's no published content available here at the moment. Please check back again later. Advertisement Most Popular There's no published content available here at the moment. Please check back again later. There's no published content available here at the moment. Please check back again later.

Cited by

Sorted by citations

Authors
Taylor, J., Fradgley, E. A., Clinton-McHarg, T., Byrnes, E., & Paul, C. L.
Affiliations
  • University of Newcastle Australia (AU)
  • Cancer Institute of New South Wales (AU)
  • Priority Research Centre for Health Behavior, University of Newcastle, Callaghan, Australia
  • Hunter Medical Research Institute (AU)
Corresponding author
Taylor, Jo
ORCID
Venue
Journal of Psychosocial Oncology Research & Practice
Publisher
Ovid Technologies (Wolters Kluwer Health)
Published
2021-04
Volume
3
Issue
2
Pages
e047
ISSN
2637-5974 (ISSN-L)
DOI
10.1097/or9.0000000000000047
OpenAlex
W3163166136
Cited by
10
References
9
Citations by year
2026: 2 · 2025: 4 · 2024: 1 · 2022: 1 · 2021: 2
FWCI
1.56
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Psychosocial Oncology Research and Practice (publishedVersion, cc-by-nd)
  • Figshare (submittedVersion)
  • NOVA (University of Newcastle Australia) (submittedVersion)
Topics
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Social Sciences › Sociology and Political Science › Family Support in Illness
Keywords
cancer caregivers, caregiver well-being, caregiver support services, caregiver distress, telephone helpline, caregiver needs, family caregivers, Australia

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review