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Erschienen in: Supportive Care in Cancer 11/2018

15.05.2018 | Original Article

A telephone outcall program to support caregivers of people diagnosed with cancer: utility, changes in levels of distress, and unmet needs

verfasst von: Leila Heckel, Kate M. Fennell, Liliana Orellana, Anna Boltong, Monica Byrnes, Patricia M. Livingston

Erschienen in: Supportive Care in Cancer | Ausgabe 11/2018

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Abstract

Purpose

To evaluate the utility of a telephone outcall program for cancer caregivers and to examine longitudinal changes in their distress levels and supportive care needs.

Methods

As part of the PROTECT trial, caregivers assigned to the intervention arm (N = 108) received three telephone outcalls from a Cancer Council 13 11 20 nurse at three time points (7–10 days post-randomization, 1 and 4 months later). During each call, caregivers were screened for distress using the Distress Thermometer (range: 0–10) then six supportive care issues were raised for discussion. Participants completed a utility survey 1 month post-intervention.

Results

The outcall program was highly acceptable and perceived as beneficial by caregivers. Overall, 95% reported it was worth their time to take part in the outcall program and 82% stated that the program was very relevant to them. Level of distress and impact of distress decreased over time (p = 0.0031, p < 0.0001, respectively). Average call duration decreased over time (p < 0.0001) and was longer for female than male caregivers (p = 0.0009). The frequency of caregivers discussing issues related to psychological distress (p = 0.0003), health literacy (p < 0.0001), financial (p = 0.0014), and practical concerns (p = 0.0121) decreased over time. Psychological distress was more often discussed by female than male caregivers (p = 0.0153), and family issues more often by younger (< 55 years) than older caregivers (p = 0.0071).

Conclusions

Utility of this outcall program was high. Caregivers’ level of distress and unmet needs decreased over time. Gender and age differences emerged, which warrants the need for tailored support. Further research is necessary to identify the best method of improving access to 13 11 20 services for caregivers.
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Literatur
1.
Zurück zum Zitat Northouse LL, Katapodi MC, Schafenacker AM, Weiss D (2012) The impact of caregiving on the psychological well-being of family caregivers and cancer patients. Semin Psyc Nurs 28:236–245CrossRef Northouse LL, Katapodi MC, Schafenacker AM, Weiss D (2012) The impact of caregiving on the psychological well-being of family caregivers and cancer patients. Semin Psyc Nurs 28:236–245CrossRef
2.
Zurück zum Zitat Tamayo GJ, Broxson A, Munsell M, Cohen MZ (2010) Caring for the caregiver. Oncol Nurs Forum 37:E50–E57CrossRef Tamayo GJ, Broxson A, Munsell M, Cohen MZ (2010) Caring for the caregiver. Oncol Nurs Forum 37:E50–E57CrossRef
3.
Zurück zum Zitat Lambert SD, Girgis A, Lecathelinais C, Stacey F (2013) Walking a mile in their shoes: anxiety and depression among partners and caregivers of cancer survivors at 6 and 12 months post-diagnosis. Support Care Cancer 21:75–85CrossRef Lambert SD, Girgis A, Lecathelinais C, Stacey F (2013) Walking a mile in their shoes: anxiety and depression among partners and caregivers of cancer survivors at 6 and 12 months post-diagnosis. Support Care Cancer 21:75–85CrossRef
4.
Zurück zum Zitat Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS (2014) Caregiver burden: a clinical review. JAMA 311:1052–1059CrossRef Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS (2014) Caregiver burden: a clinical review. JAMA 311:1052–1059CrossRef
5.
Zurück zum Zitat Van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin JM, Martin M et al (2011) Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psycho-Oncology 20:44–52CrossRef Van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin JM, Martin M et al (2011) Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psycho-Oncology 20:44–52CrossRef
6.
Zurück zum Zitat Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology 19:1013–1025CrossRef Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology 19:1013–1025CrossRef
7.
Zurück zum Zitat Ockerby C, Livingston P, O’Connell B, Gaskin CJ (2013) The role of informal caregivers during cancer patients’ recovery from chemotherapy. Scand J Caring Sci 27:147–155CrossRef Ockerby C, Livingston P, O’Connell B, Gaskin CJ (2013) The role of informal caregivers during cancer patients’ recovery from chemotherapy. Scand J Caring Sci 27:147–155CrossRef
8.
Zurück zum Zitat Given BA, Given CW, Sherwood P (2012) The challenge of quality cancer care for family caregivers. Semin Oncol Nurs 28:205–212CrossRef Given BA, Given CW, Sherwood P (2012) The challenge of quality cancer care for family caregivers. Semin Oncol Nurs 28:205–212CrossRef
9.
Zurück zum Zitat 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 22:1557–1564CrossRef 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 22:1557–1564CrossRef
10.
Zurück zum Zitat Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC, Willan A, Viola R, Coristine M, Janz T, Glossop R (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ 170:1795–1801CrossRef Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC, Willan A, Viola R, Coristine M, Janz T, Glossop R (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ 170:1795–1801CrossRef
11.
Zurück zum Zitat Kim Y, Kashy DA, Spillers RL, Evans TV (2010) Needs assessment of family caregivers of cancer survivors: three cohort comparison. Psycho-Oncology 19:573–582CrossRef Kim Y, Kashy DA, Spillers RL, Evans TV (2010) Needs assessment of family caregivers of cancer survivors: three cohort comparison. Psycho-Oncology 19:573–582CrossRef
12.
Zurück zum Zitat Lambert SD, Harrison JD, Smith E, Bonevski B, Carey M, Lawsin C, Paul C, Girgis A (2012) The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Support Palliat Care 2:224–230CrossRef Lambert SD, Harrison JD, Smith E, Bonevski B, Carey M, Lawsin C, Paul C, Girgis A (2012) The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Support Palliat Care 2:224–230CrossRef
13.
Zurück zum Zitat Heckel L, Fennell KM, Reynolds J, Osborne RH, Chirgwin J, Botti M, Ashley DM, Livingston PM (2015) Unmet needs and depression among carers of people newly diagnosed with cancer. EJC 51:2049–2057CrossRef Heckel L, Fennell KM, Reynolds J, Osborne RH, Chirgwin J, Botti M, Ashley DM, Livingston PM (2015) Unmet needs and depression among carers of people newly diagnosed with cancer. EJC 51:2049–2057CrossRef
14.
Zurück zum Zitat American College of Surgeons (ACS) (2015) Cancer program standards: ensuring patient-centered care. American College of Surgeons, Chicago IL American College of Surgeons (ACS) (2015) Cancer program standards: ensuring patient-centered care. American College of Surgeons, Chicago IL
16.
Zurück zum Zitat Kramar A, Gandee M, Marino MJ, Patton A, Kendall J, McMullen L et al (2015) Psycho-social distress screening. Lessons learned from three ACCC member programs, Association of Community Cancer Centres (ACCC), Rockville MD Kramar A, Gandee M, Marino MJ, Patton A, Kendall J, McMullen L et al (2015) Psycho-social distress screening. Lessons learned from three ACCC member programs, Association of Community Cancer Centres (ACCC), Rockville MD
17.
Zurück zum Zitat National Comprehensive Cancer Network (NCCN) (2003) Distress management clinical practice guidelines. JCCN 1:344–374 National Comprehensive Cancer Network (NCCN) (2003) Distress management clinical practice guidelines. JCCN 1:344–374
18.
Zurück zum Zitat Trad W, Koh E-S, Daher M, Bailey A, Kastelan M, Legge D et al (2015) Screening for psychological distress in adult primary brain tumor patients and caregivers: considerations for cancer care coordination. Front Oncol 5:1–8CrossRef Trad W, Koh E-S, Daher M, Bailey A, Kastelan M, Legge D et al (2015) Screening for psychological distress in adult primary brain tumor patients and caregivers: considerations for cancer care coordination. Front Oncol 5:1–8CrossRef
19.
Zurück zum Zitat Chambers SK, Girgis A, Occhipinti S, Hutchison S, Turner S, Morris B et al (2012) Psychological distress and unmet supportive care needs in cancer patients and carers who contact cancer helplines. EJCC 21:213–223 Chambers SK, Girgis A, Occhipinti S, Hutchison S, Turner S, Morris B et al (2012) Psychological distress and unmet supportive care needs in cancer patients and carers who contact cancer helplines. EJCC 21:213–223
20.
Zurück zum Zitat Fennell KM, Heckel L, Wilson C, Byrnes M, Livingston PM (2016) How calls from carers, friends and family members of someone affected by cancer differ from those made by people diagnosed with cancer; analysis of four years of South Australian Cancer Council Helpline data. Support Care Cancer 24:2611–2618. https://doi.org/10.1007/s00520-015-3069-y CrossRefPubMed Fennell KM, Heckel L, Wilson C, Byrnes M, Livingston PM (2016) How calls from carers, friends and family members of someone affected by cancer differ from those made by people diagnosed with cancer; analysis of four years of South Australian Cancer Council Helpline data. Support Care Cancer 24:2611–2618. https://​doi.​org/​10.​1007/​s00520-015-3069-y CrossRefPubMed
21.
Zurück zum Zitat Groepper S, van der Meer E, Landes T, Bucher H, Stickel A, Goerling U (2016) Assessing cancer-related distress in cancer patients and caregivers receiving outpatient psycho-oncological counselling. Support Care Cancer 24:2351–2357CrossRef Groepper S, van der Meer E, Landes T, Bucher H, Stickel A, Goerling U (2016) Assessing cancer-related distress in cancer patients and caregivers receiving outpatient psycho-oncological counselling. Support Care Cancer 24:2351–2357CrossRef
22.
Zurück zum Zitat Sklenarova H, Kruempelmann A, Haun MW, Friedrich H-C, Huber J, Thomas M et al (2015) When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer 121:1513–1519CrossRef Sklenarova H, Kruempelmann A, Haun MW, Friedrich H-C, Huber J, Thomas M et al (2015) When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer 121:1513–1519CrossRef
23.
Zurück zum Zitat Vanderwerker LC, Laff RE, Kadan-Lottick NS, McColl S, Prigerson HG (2005) Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. J Clin Oncol 23:6899–6907CrossRef Vanderwerker LC, Laff RE, Kadan-Lottick NS, McColl S, Prigerson HG (2005) Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. J Clin Oncol 23:6899–6907CrossRef
24.
Zurück zum Zitat Mosher CE, Champion VL, Hanna N, Jalal SI, Fakiris AJ, Birdas TJ et al (2013) Support service use and interest in support services among distress family caregivers of lung cancer patients. Psycho-Oncology 11:1549–1556CrossRef Mosher CE, Champion VL, Hanna N, Jalal SI, Fakiris AJ, Birdas TJ et al (2013) Support service use and interest in support services among distress family caregivers of lung cancer patients. Psycho-Oncology 11:1549–1556CrossRef
25.
Zurück zum Zitat Morra M, Thomsen C, Vezina A, Akkerman D, Bright MA, Dickens C et al (2007) The international cancer information service: a worldwide resource. J Cancer Educ 22(Suppl):S61–S69CrossRef Morra M, Thomsen C, Vezina A, Akkerman D, Bright MA, Dickens C et al (2007) The international cancer information service: a worldwide resource. J Cancer Educ 22(Suppl):S61–S69CrossRef
26.
Zurück zum Zitat Boltong A, Ledwick M, Babb K, Sutton C, Ugalde A (2017) Exploring the rationale, experience and impact of using Cancer Information and Support (CIS) services: an international qualitative study. Support Care Cancer 25:1221–1228CrossRef Boltong A, Ledwick M, Babb K, Sutton C, Ugalde A (2017) Exploring the rationale, experience and impact of using Cancer Information and Support (CIS) services: an international qualitative study. Support Care Cancer 25:1221–1228CrossRef
27.
Zurück zum Zitat Chambers SK, Girgis A, Occhipinti S, Hutchison S, Turner J, McDowell M, Mihalopoulos C, Carter R, Dunn JC (2014) A randomized trial comparing two low-intensity psychological interventions for distressed patients with cancer and their caregivers. Oncol Nurs Forum 41:E256–E266CrossRef Chambers SK, Girgis A, Occhipinti S, Hutchison S, Turner J, McDowell M, Mihalopoulos C, Carter R, Dunn JC (2014) A randomized trial comparing two low-intensity psychological interventions for distressed patients with cancer and their caregivers. Oncol Nurs Forum 41:E256–E266CrossRef
28.
Zurück zum Zitat Hutchison SD, Sargeant H, Morris BA, Hawkes AL, Clutton S, Chambers SK (2011) A community-based approach to cancer counselling for patients and carers: a preliminary study. Psycho-Oncology 20:897–901CrossRef Hutchison SD, Sargeant H, Morris BA, Hawkes AL, Clutton S, Chambers SK (2011) A community-based approach to cancer counselling for patients and carers: a preliminary study. Psycho-Oncology 20:897–901CrossRef
30.
Zurück zum Zitat Livingston PM, White VM, Hayman J, Maunsell E, Dunn SM, Hill D (2010) The psychological impact of a specialist referral and telephone intervention on male cancer patients: a randomised controlled trial. Psycho-Oncology 19:617–625CrossRef Livingston PM, White VM, Hayman J, Maunsell E, Dunn SM, Hill D (2010) The psychological impact of a specialist referral and telephone intervention on male cancer patients: a randomised controlled trial. Psycho-Oncology 19:617–625CrossRef
32.
Zurück zum Zitat 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. AJCN 16:20–28 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. AJCN 16:20–28
33.
Zurück zum Zitat Livingston P, White V, Hayman J, Hill D (2006) How acceptable is a referral and telephone-based outcall programme for men diagnosed with cancer? A feasibility study. EJCC 15:467–475 Livingston P, White V, Hayman J, Hill D (2006) How acceptable is a referral and telephone-based outcall programme for men diagnosed with cancer? A feasibility study. EJCC 15:467–475
34.
Zurück zum Zitat Livingston PM, Osborne R, Botti M, Mihalopoulus C, McGuigan S, Heckel L et al (2014) Efficacy and cost-effectiveness of an outcall program to reduce caregiver burden and depression among caregivers of cancer patients [PROTECT]: rationale and design of a randomized controlled trial. BMC Health Serv Res 14:1–8CrossRef Livingston PM, Osborne R, Botti M, Mihalopoulus C, McGuigan S, Heckel L et al (2014) Efficacy and cost-effectiveness of an outcall program to reduce caregiver burden and depression among caregivers of cancer patients [PROTECT]: rationale and design of a randomized controlled trial. BMC Health Serv Res 14:1–8CrossRef
36.
Zurück zum Zitat Girgis A, Lambert S, Lecathelinais C (2011) The supportive care needs survey for partners and caregivers of cancer survivors: development and psychometric evaluation. Psycho-Oncology 20:387–393CrossRef Girgis A, Lambert S, Lecathelinais C (2011) The supportive care needs survey for partners and caregivers of cancer survivors: development and psychometric evaluation. Psycho-Oncology 20:387–393CrossRef
37.
Zurück zum Zitat Akizuki N, Akechi T, Nakanishi T, Yoshikawa E, Okamura M, Nakano T, Murakami Y, Uchitomi Y (2003) Development of a brief screening interview for adjustment disorders and major depression in patients with cancer. Cancer 97:2605–2613CrossRef Akizuki N, Akechi T, Nakanishi T, Yoshikawa E, Okamura M, Nakano T, Murakami Y, Uchitomi Y (2003) Development of a brief screening interview for adjustment disorders and major depression in patients with cancer. Cancer 97:2605–2613CrossRef
38.
Zurück zum Zitat Feiten S, Friesenhahn V, Heymanns J, Kleboth K, Koeppler H, Mergenthaler U et al (2013) Psychosocial distress in caregivers of patients with a metastatic solid tumor in routine care: a survey in a community based oncology group practice in Germany. CCO 2:1–10CrossRef Feiten S, Friesenhahn V, Heymanns J, Kleboth K, Koeppler H, Mergenthaler U et al (2013) Psychosocial distress in caregivers of patients with a metastatic solid tumor in routine care: a survey in a community based oncology group practice in Germany. CCO 2:1–10CrossRef
39.
Zurück zum Zitat Hawkes AL, Hughes KL, Hutchison SD, Chambers SK (2010) Feasibility of brief psychological distress screening by a community-based telephone helpline for cancer patients and carers. BMC Cancer 10:14CrossRef Hawkes AL, Hughes KL, Hutchison SD, Chambers SK (2010) Feasibility of brief psychological distress screening by a community-based telephone helpline for cancer patients and carers. BMC Cancer 10:14CrossRef
40.
Zurück zum Zitat Australian Institute of Health and Welfare (2004) Rural, regional and remote health: a guide to remoteness classifications. Rural Health Series, AIHW, Canberra Australian Institute of Health and Welfare (2004) Rural, regional and remote health: a guide to remoteness classifications. Rural Health Series, AIHW, Canberra
41.
Zurück zum Zitat Psycho-oncology Cooperative Research Group (PCRG) (2012) ARIA lookup tool user guide. School of Psychology, The University of Sydney, Sydney Psycho-oncology Cooperative Research Group (PCRG) (2012) ARIA lookup tool user guide. School of Psychology, The University of Sydney, Sydney
42.
Zurück zum Zitat Cancer Council NSW (2006) The Cancer Council NSW annual report. Cancer Council New South Wales, Sydney Cancer Council NSW (2006) The Cancer Council NSW annual report. Cancer Council New South Wales, Sydney
43.
Zurück zum Zitat Jefford M, Black C, Grogan S, Yeoman G, White V, Akkerman D (2005) Information and support needs of callers to the Cancer Helpline, The Cancer Council Victoria. Eur J Cancer Care 14:113–123CrossRef Jefford M, Black C, Grogan S, Yeoman G, White V, Akkerman D (2005) Information and support needs of callers to the Cancer Helpline, The Cancer Council Victoria. Eur J Cancer Care 14:113–123CrossRef
44.
Zurück zum Zitat Queensland Cancer Fund (2004) Queensland cancer fund cancer helpline. Quality assurance survey. Queensland Cancer Fund, Brisbane Queensland Cancer Fund (2004) Queensland cancer fund cancer helpline. Quality assurance survey. Queensland Cancer Fund, Brisbane
45.
Zurück zum Zitat Mahalik JR, Locke BD, Ludlow LH, Diemer MA, Scott RP, Gottfried M et al (2003) Development of the conformity to masculine norms inventory. Psychol Men Masc 4:3–25CrossRef Mahalik JR, Locke BD, Ludlow LH, Diemer MA, Scott RP, Gottfried M et al (2003) Development of the conformity to masculine norms inventory. Psychol Men Masc 4:3–25CrossRef
46.
Zurück zum Zitat Smith JA, Braunack-Mayer A, Wittert G (2006) What do we know about men’s help-seeking and health service use? MJA 184:81–83PubMed Smith JA, Braunack-Mayer A, Wittert G (2006) What do we know about men’s help-seeking and health service use? MJA 184:81–83PubMed
47.
Zurück zum Zitat Caasi Macaraeg J, Türk Smith S (2013) Psychological distress and help-seeking attitudes of cancer caregivers on Guam. Pacific Asia Inquiry 4:121–135 Caasi Macaraeg J, Türk Smith S (2013) Psychological distress and help-seeking attitudes of cancer caregivers on Guam. Pacific Asia Inquiry 4:121–135
48.
Zurück zum Zitat Kim Y, Baker F, Spillers RL, Wellisch DK (2006) Psychological adjustment of cancer caregivers with multiple roles. Psycho-Oncology 15:795–804CrossRef Kim Y, Baker F, Spillers RL, Wellisch DK (2006) Psychological adjustment of cancer caregivers with multiple roles. Psycho-Oncology 15:795–804CrossRef
Metadaten
Titel
A telephone outcall program to support caregivers of people diagnosed with cancer: utility, changes in levels of distress, and unmet needs
verfasst von
Leila Heckel
Kate M. Fennell
Liliana Orellana
Anna Boltong
Monica Byrnes
Patricia M. Livingston
Publikationsdatum
15.05.2018
Verlag
Springer Berlin Heidelberg
Erschienen in
Supportive Care in Cancer / Ausgabe 11/2018
Print ISSN: 0941-4355
Elektronische ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-018-4246-6

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