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Vulnerable characteristics and interest in wellness programs among head and neck cancer caregivers

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Abstract

Purpose

Head and neck cancer (HNC) caregivers have poorer psychological health compared to patients and the general population but have not yet been targeted for wellness programs to reduce adverse psychosocial or physical health outcomes. To inform development of such programs, we identified potential vulnerabilities to poor outcomes and examined wellness program preferences among HNC caregivers. We also examined whether interest in wellness programs varied by potential vulnerabilities among HNC caregivers.

Methods

Surveys were administered to caregivers (n = 33) of HNC patients undergoing major surgery. Sociodemographic factors, caregiving characteristics, psychosocial functioning, and health behavior data were collected. Fisher’s exact tests and t tests were used to examine characteristics associated with interest in the different types of wellness programs.

Results

Many caregivers reported a heavy caregiving load (88 % live with patient and 73 % provide daily care), a smoking history (42 %), and compromised psychosocial functioning (45 % with depressive symptoms and 33 % with anxiety above population norms). Most caregivers were interested in wellness programs focused on diet/exercise (71.9 %); cancer education (66.7 %); stress reduction (63.6 %); and finances, caregiving, and well-being (57.6 %). Caregivers endorsed highest interest in programs offered during the patient’s medical treatment (63.6 %), and mail was the preferred program format (50.0 %). Those with more depressive symptoms reported more interest in programs focused on cancer education (p = 0.03); stress reduction (p = 0.05); and educational classes on finances, caregiving, and well-being (p = 0.01).

Conclusions

Wellness programs offering a menu of options should be developed for HNC caregivers.

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References

  1. American Cancer Society (2015) Cancer facts and figures. Retrieved September 15, 2015, from http://www.cancer.org/research/cancerfactsstatistics/cancerfactsfigures2015/

  2. Eades M, Chasen M, Bhargava R (2009) Rehabilitation: long-term physical and functional changes following treatment. Semin Oncol Nurs 25(3):222–230. doi:10.1016/j.soncn.2009.05.006

    Article  PubMed  Google Scholar 

  3. Chen SC et al. (2009) Support needs of patients with oral cancer and burden to their family caregivers. Cancer Nurs 32(6):473–481

    Article  PubMed  Google Scholar 

  4. National Alliance for Caregiving and AARP (2009) Caregiving in the US. Retrieved July 10, 2015 from http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf.

  5. Li Q, Loke AY (2013) The positive aspects of caregiving for cancer patients: a critical review of the literature and directions for future research. Psychooncology 22(11):2399–2407. doi:10.1002/pon.3311

    Article  PubMed  Google Scholar 

  6. Goren A et al. (2014) Quantifying the burden of informal caregiving for patients with cancer in Europe. Support Care Cancer 22(6):1637–1646. doi:10.1007/s00520-014-2122-6

    Article  PubMed  Google Scholar 

  7. Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psychooncology 19(10):1013–1025. doi:10.1002/pon.1670

    Article  PubMed  Google Scholar 

  8. Lee S et al. (2003) Caregiving and risk of coronary heart disease in U.S. women: a prospective study. Am J Prev Med 24(2):113–119

    Article  PubMed  Google Scholar 

  9. Kiecolt-Glaser JK et al. (1991) Spousal caregivers of dementia victims: longitudinal changes in immunity and health. Psychosom Med 53(4):345–362

    Article  CAS  PubMed  Google Scholar 

  10. Schulz R, Beach SR (1999) Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 282(23):2215–2219

    Article  CAS  PubMed  Google Scholar 

  11. Yoon SJ et al. (2014) Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients. Support Care Cancer 22(5):1243–1250. doi:10.1007/s00520-013-2077-z

    Article  PubMed  Google Scholar 

  12. Papastavrou E, Charalambous A, Tsangari H (2009) Exploring the other side of cancer care: the informal caregiver. Eur J Oncol Nurs 13(2):128–136. doi:10.1016/j.ejon.2009.02.003

    Article  PubMed  Google Scholar 

  13. Goldstein NE et al. (2004) Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. J Palliat Care 20(1):38–43

    PubMed  Google Scholar 

  14. Kim Y et al. (2015) Cancer caregiving predicts physical impairments: roles of earlier caregiving stress and being a spousal Caregiver. cancer 121(2):302–310. doi:10.1002/cncr.29040

    Article  PubMed  Google Scholar 

  15. Northouse L et al. (2012) Psychosocial care for family caregivers of patients with cancer. J Clin Oncol 30(11):1227–1234. doi:10.1200/JCO.2011.39.5798

    Article  PubMed  Google Scholar 

  16. Beesley VL et al. (2011) Loss of lifestyle: health behaviour and weight changes after becoming a caregiver of a family member diagnosed with ovarian cancer. Support Care Cancer 19(12):1949–1956. doi:10.1007/s00520-010-1035-2

    Article  PubMed  Google Scholar 

  17. Weaver KE et al. (2011) Smoking concordance in lung and colorectal cancer patient-caregiver dyads and quality of life. Cancer Epidemiol Biomark Prev 20(2):239–248. doi:10.1158/1055-9965.EPI-10-0666

    Article  Google Scholar 

  18. Batty GD (2002) Physical activity and coronary heart disease in older adults. A systematic review of epidemiological studies. Eur J Pub Health 12(3):171–176

    Article  Google Scholar 

  19. Islami F, Torre LA, Jemal A (2015) Global trends of lung cancer mortality and smoking prevalence. Transl Lung Cancer Res 4(4):327–338. doi:10.3978/j.issn.2218-6751.2015.08.04

    CAS  PubMed  PubMed Central  Google Scholar 

  20. Mukamal KJ et al. (2010) Alcohol consumption and cardiovascular mortality among U.S. adults, 1987 to 2002. J Am Coll Cardiol 55(13):1328–1335. doi:10.1016/j.jacc.2009.10.056

    Article  PubMed  Google Scholar 

  21. Longacre ML et al. (2012) Psychological functioning of caregivers for head and neck cancer patients. Oral Oncol 48(1):18–25. doi:10.1016/j.oraloncology.2011.11.012

    Article  PubMed  Google Scholar 

  22. Baghi M et al. (2007) Demands on caring relatives of head and neck cancer patients. Laryngoscope 117(4):712–716. doi:10.1097/mlg.0b013e318031d0b4

    Article  PubMed  Google Scholar 

  23. Chen SC et al. (2014) Unmet supportive care needs and characteristics of family caregivers of patients with oral cancer after surgery. Psychooncology 23(5):569–577. doi:10.1002/pon.3458

    Article  PubMed  Google Scholar 

  24. Dall’Armi L et al. (2013) The information needs of patients with head and neck cancer and their caregivers: a short report of instrument development and testing. Appl Nurs Res 26(1):40–44. doi:10.1016/j.apnr.2012.08.001

    Article  PubMed  Google Scholar 

  25. Richardson AE, Morton R, Broadbent E (2015) Psychological support needs of patients with head and neck cancer and their caregivers: a qualitative study. Psychol Health 30(11):1288–1305. doi:10.1080/08870446.2015.1045512

    Article  PubMed  Google Scholar 

  26. Meyer A et al. (2015) Psychological distress and need for psycho-oncological support in spouses of total laryngectomised cancer patients—results for the first 3 years after surgery. Support Care Cancer 23(5):1331–1339. doi:10.1007/s00520-014-2485-8

    Article  CAS  PubMed  Google Scholar 

  27. Ostroff J et al. (2004) Interest in and barriers to participation in multiple family groups among head and neck cancer survivors and their primary family caregivers. Fam Process 43(2):195–208

    Article  PubMed  Google Scholar 

  28. Hatcher JL et al. (2014) Tobacco use and surgical outcomes in patients with head and neck cancer. Head Neck. doi:10.1002/hed.23944

    Google Scholar 

  29. Ayanian JZ et al. (2004) Understanding cancer treatment and outcomes: the Cancer Care Outcomes Research and Surveillance Consortium. J Clin Oncol 22(15):2992–2996. doi:10.1200/JCO.2004.06.020

    Article  PubMed  Google Scholar 

  30. Yaroch AL et al. (2012) Evaluation of three short dietary instruments to assess fruit and vegetable intake: the National Cancer Institute’s food attitudes and behaviors survey. J Acad Nutr Diet 112(10):1570–1577. doi:10.1016/j.jand.2012.06.002

    Article  PubMed  PubMed Central  Google Scholar 

  31. National Cancer Institute (2012) Tobacco use supplement to the current population survey (May 2010–2011). Retrieved December 1, 2014, from http://appliedresearch.can-cer.gov/studies/tus-cps/.

  32. Irwin M, Artin KH, Oxman MN (1999) Screening for depression in the older adult: criterion validity of the 10-item Center for Epidemiological Studies Depression Scale (CES-D). Arch Intern Med 159(15):1701–1704

    Article  CAS  PubMed  Google Scholar 

  33. Pilkonis PA et al. (2011) Item banks for measuring emotional distress from the Patient-Reported Outcomes Measurement Information System (PROMIS®): depression, anxiety, and anger. Assessment 18(3):263–283. doi:10.1177/1073191111411667

    Article  PubMed  PubMed Central  Google Scholar 

  34. Bédard M et al. (2001) The Zarit Burden Interview: a new short version and screening version. Gerontologist 41(5):652–657

    Article  PubMed  Google Scholar 

  35. Majerovitz SD (1995) Role of family adaptability in the psychological adjustment of spouse caregivers to patients with dementia. Psychol Aging 10(3):447–457

    Article  CAS  PubMed  Google Scholar 

  36. Zarit SH, Anthony CR, Boutselis M (1987) Interventions with care givers of dementia patients: comparison of two approaches. Psychol Aging 2(3):225–232

    Article  CAS  PubMed  Google Scholar 

  37. National Cancer Institute Usual dietary intakes: food intakes, U.S. population, 2007–10. Retrieved September 20, 2015, from http://epi.grants.cancer.gov/diet/usualintakes/pop/2007-10/.

  38. Pinquart M, Sörensen S (2003) Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging 18(2):250–267

    Article  PubMed  Google Scholar 

  39. Pinquart M, Sörensen S (2006) Gender differences in caregiver stressors, social resources, and health: an updated meta-analysis. J Gerontol B Psychol Sci Soc Sci 61(1):P33–P45

    Article  PubMed  Google Scholar 

  40. National Alliance for Caregiving and AARP (2015) Caregiving in the U.S. Retrieved Septmber 15, 2015, from http://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Final-Report-June-4_WEB.pdf.

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Acknowledgments

This study was funded by the Hollings Cancer Center at the Medical University of South Carolina and the Comprehensive Cancer Center of Wake Forest University (CCCWFU). This project was supported by the Biostatistics Core of the CCCWFU (P30 CA012197). Data management support (REDCap) was provided by the Wake Forest School of Medicine Translational Sciences Institute, National Center for Research Resources/National Institutes of Health (NCRR/NIH) grant M01RR007122. Katherine Sterba’s work on this manuscript was supported by a Mentored Research Scholar Grant in Applied and Clinical Research (MRSG-12-221-01-CPPB) from the American Cancer Society. Chandylen Nightingale and Min-So Paek’s work on this manuscript was supported by a Cancer Control Traineeship, National Cancer Institute/National Institute of Health (NCI/NIH; R25CA122061). The authors wish to acknowledge recruitment and data collection support from the following individuals: Rebecca Patten, OT, and Amy Buchanan, MPH, at the Medical University of South Carolina and Kathryn Josephs, MS, at Wake Forest School of Medicine.

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Correspondence to Chandylen L. Nightingale.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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The authors declare that they have no competing interests.

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Nightingale, C.L., Sterba, K.R., Tooze, J.A. et al. Vulnerable characteristics and interest in wellness programs among head and neck cancer caregivers. Support Care Cancer 24, 3437–3445 (2016). https://doi.org/10.1007/s00520-016-3160-z

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