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Supportive Care in Cancer

Published in:

01-06-2019 | Original Article

Caring for the person with cancer and the role of digital technology in supporting carers

Authors: Natalie Heynsbergh, Mari Botti, Leila Heckel, Patricia M. Livingston

Published in: Supportive Care in Cancer | Issue 6/2019

Abstract

Purpose

Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers’ needs.

Methods

Focus groups and semi-structured interviews were conducted with 45 carers. Carers discussed supports and services they used to address their needs, barriers to accessing support, and how digital technology could assist in meeting their needs.

Results

Carers used informal support such as friends and family and formal support including respite and community groups during the caring period. Barriers to accessing support included reluctance to seek external help, sensitivities associated with prioritising carers’ needs over patients’ needs, and the adequacy of information received. Technology was reported to have the potential to allow carers’ privacy to seek support; however, carers’ attitudes towards technology differed.

Conclusions

Carers require support during the caring period to help balance their own needs with the needs of the person receiving cancer treatment. Digital technology may provide an opportunity to deliver support to carers; however, further research is needed to assess the appropriateness of these interventions to inform improved health outcomes for this vulnerable group.

World Health Organisation (2017) Cancer. Who Media Centre. http://www.who.int/mediacentre/factsheets/fs297/en/

Australian Institute of Health and Welfare (2017) Cancer in Australia 2017. Canberra

DeSantis CE, Lin CC, Mariotto AB, Siegel RL, Stein KD, Kramer JL, Alteri R, Robbins AS, Jemal A (2014) Cancer treatment and survivorship statistics, 2014. CA Cancer J Clin 64(4):252–271. https://doi.org/10.3322/caac.21235 CrossRefPubMed

Hung H-C, Tsai M-C, Chen S-C, Liao C-T, Chen Y-R, Liu J-F (2013) Change and predictors of social support in caregivers of newly diagnosed oral cavity cancer patients during the first 3 months after discharge. Cancer Nurs 36(6):E17–E24. https://doi.org/10.1097/NCC.0b013e31826c79d0 CrossRefPubMed

Girgis A, Lambert SD, McElduff P, Bonevski B, Lecathelinais C, Boyes A, Stacey F (2013) Some things change, some things stay the same: a longitudinal analysis of cancer caregivers’ unmet supportive care needs. Psycho-Oncology 22(7):1557–1564. https://doi.org/10.1002/pon.3166 CrossRefPubMed

Longacre ML (2013) Cancer caregivers information needs and resource preferences. J Cancer Educ: Off J Am Assoc Cancer Educ 28(2):297–305. https://doi.org/10.1007/s13187-013-0472-2 CrossRef

Ream E, Pedersen VH, Oakley C, Richardson A, Taylor C, Verity R (2013) Informal carers’ experiences and needs when supporting patients through chemotherapy: a mixed method study. Eur J Cancer Care 22(6):797–806. https://doi.org/10.1111/ecc.12083 CrossRef

Badr H, Herbert K, Reckson B, Rainey H, Sallam A, Gupta V (2016) Unmet needs and relationship challenges of head and neck cancer patients and their spouses. J Psychosoc Oncol 34(4):336–346. https://doi.org/10.1080/07347332.2016.1195901 CrossRefPubMedPubMedCentral

Hashemi M, Irajpour A, Taleghani F (2018) Caregivers needing care: the unmet needs of the family caregivers of end-of-life cancer patients. Support Care Cancer 26(3):759–766. https://doi.org/10.1007/s00520-017-3886-2 CrossRefPubMed

10.

Janda M, Steginga S, Dunn J, Langbecker D, Walker D, Eakin E (2008) Unmet supportive care needs and interest in services among patients with a brain tumour and their carers. Patient Educ Couns 71(2):251–258. https://doi.org/10.1016/j.pec.2008.01.020 CrossRefPubMed

11.

Longacre M, Galloway T, Parvanta C, Fang C, Longacre ML, Galloway TJ, Parvanta CF, Fang CY (2015) Medical communication-related informational need and resource preferences among family caregivers for head and neck cancer patients. J Cancer Educ 30(4):786–791. https://doi.org/10.1007/s13187-015-0814-3 CrossRefPubMedPubMedCentral

12.

Chi NC, Demiris G (2015) A systematic review of telehealth tools and interventions to support family caregivers. J Telemed Telecare 21(1):37–44. https://doi.org/10.1177/1357633x14562734 CrossRefPubMed

13.

Colorafi KJ, Evans B (2016) Qualitative descriptive methods in health science research. HERD 9(4):16–25. https://doi.org/10.1177/1937586715614171 CrossRefPubMed

14.

Dębska G, Pasek M, Wojtyna EWA (2017) Does anybody support the supporters? Social support in the cancer patient-caregiver dyad. Fam Med Prim Care Rev 19(2):110–113. https://doi.org/10.5114/fmpcr.2017.67863 CrossRef

15.

Olson R, Connor J (2015) When they don’t die: prognosis ambiguity, role conflict and emotion work in cancer caregiving. J Sociol 51(4):857–871. https://doi.org/10.1177/1440783314544996 CrossRef

16.

Spillers RL, Wellisch DK, Kim Y, Matthews BA, Baker F (2008) Family caregivers and guilt in the context of cancer care. Psychosomat: J Consult Liaison Psychiatry 49(6):511–519. https://doi.org/10.1176/appi.psy.49.6.511 CrossRef

17.

Buscemi V, Font A, Viladricht C (2010) Focus on relationship between the caregivers unmet needs and other caregiving outcomes in cancer palliative care. Psicooncología 7(1):109–125

18.

Boltong A, Byrnes M, McKiernan S, Quin N, Chapman K (2015) Exploring the preferences, perceptions and satisfaction of people seeking cancer information and support: implications for the cancer council helpline. Aus J Cancer Nurs 16(1):20–30

19.

Badr H, Carmack CL, Diefenbach MA (2015) Psychosocial interventions for patients and caregivers in the age of new communication technologies: opportunities and challenges in cancer care. J Health Commun 20(3):328–342. https://doi.org/10.1080/10810730.2014.965369 CrossRefPubMedPubMedCentral

20.

Foster C, Myall M, Scott I, Sayers M, Brindle L, Cotterell P, Addington-Hall J, Hopkinson J, Payne S, Robinson J (2015) ‘You can’t say, ‘what about me?’ I’m not the one with cancer’: information and support needs of relatives. Psycho-Oncology 24(6):705–711. https://doi.org/10.1002/pon.3716 CrossRefPubMed

21.

Olson R (2014) A time-sovereignty approach to understanding carers of cancer patients’ experiences and support preferences. Eur J Cancer Care 23(2):239–248. https://doi.org/10.1111/ecc.12121 CrossRef

22.

Australian Medical Association (2016) Stop the cuts - time for strong investment in health. Australian Medical Association. https://ama.com.au/media/stop-cuts-time-strong-investment-health. Accessed 27.11.17

23.

Heynsbergh N, Heckel L, Botti M, Livingston PM (2018) Feasibility, useability and acceptability of technology-based interventions for informal cancer carers: a systematic review. BMC Cancer 18(1):244. https://doi.org/10.1186/s12885-018-4160-9 CrossRefPubMedPubMedCentral

Title: Caring for the person with cancer and the role of digital technology in supporting carers
Authors: Natalie Heynsbergh
Mari Botti
Leila Heckel
Patricia M. Livingston
Publication date: 01-06-2019
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 6/2019
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-018-4503-8

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