Cancer across the ages: a narrative review of caregiver burden for patients of all ages

References

• National Alliance for Caregiving NCI, and the Cancer Support Community. Cancer caregiving in the U.S.: An intense, episodic, and challenging care experience. June 2016. http://www.caregiving.org/wp-content/uploads/2016/06/CancerCaregivingReport_FINAL_June-17-2016.pdf. Accessed December 1, 2017.
   Google Scholar
• Siegel RL, Miller KD, Jemal A. Cancer statistics, 2016. CA Cancer J Clin. 2016;66(1):7–30. doi:10.3322/caac.21332
   PubMed Web of Science ®Google Scholar
• Higginson IJ, Sen-Gupta G. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med. 2000;3(3):287–300. doi:10.1089/jpm.2000.3.287
   PubMedGoogle Scholar
• Dionne-Odom JN, Hull JG, Martin MY, et al. Associations between advanced cancer patients' survival and family caregiver presence and burden. Cancer Med. 2016;5(5):853–862. doi:10.1002/cam4.653
   PubMed Web of Science ®Google Scholar
• Green BN, Johnson CD, Adams A. Writing narrative literature reviews for peer-reviewed journals: secrets of the trade. J Chiropr Med. 2006;5(3):101–117. doi:10.1016/S0899-3467(07)60142-6
   PubMed Web of Science ®Google Scholar
• Ferrari R. Writing narrative style literature reviews. Medical Writing. 2015;24(4):230–235. doi:10.1179/2047480615Z.000000000329
   Google Scholar
• Baethge C, Goldbeck-Wood S, Mertens S. SANRA-a scale for the quality assessment of narrative review articles. Res Integr Peer Rev. 2019;4(5):5–7. doi:10.1186/s41073-019-0064-8
   PubMedGoogle Scholar
• Kim Y, Kashy DA, Kaw CK, Smith T, Spillers RL. Sampling in population-based cancer caregivers research. Qual Life Res. 2009;18(8):981–989. doi:10.1007/s11136-009-9518-7
   PubMed Web of Science ®Google Scholar
• Kim Y, Spillers RL. Quality of life of family caregivers at 2 years after a relative's cancer diagnosis. Psychooncology. 2010;19(4):431–440. doi:10.1002/pon.1576
   PubMed Web of Science ®Google Scholar
• Yabroff KR, Kim Y. Time costs associated with informal caregiving for cancer survivors. Cancer. 2009;115(S18):4362–4373. doi:10.1002/cncr.24588
   PubMedGoogle Scholar
• Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, van den Bos GA. Cancer and caregiving: the impact on the caregiver's health. Psychooncology. 1998;7(1):3–13. doi:10.1002/(SICI)1099-1611(199801/02)7:1<3::AID-PON320>3.0.CO;2-5
   PubMed Web of Science ®Google Scholar
• Matthews B, Baker F, Spillers R. Family caregivers and indicators of cancer-related distress. Psychol Health Med. 2003;8(1):46–56. doi:10.1080/1354850021000059250
   PubMedGoogle Scholar
• Shaffer KM, Kim Y, Carver CS, Cannady RS. Effects of caregiving status and changes in depressive symptoms on development of physical morbidity among long-term cancer caregivers. Health Psychol. 2017;36(8):770–778. doi:10.1037/hea0000528
   PubMed Web of Science ®Google Scholar
• Kenny P, King MT, Hall J. The physical functioning and mental health of informal carers: evidence of care-giving impacts from an Australian population-based cohort. Health Soc Care Community. 2014;22(6):646–659. doi:10.1111/hsc.12136
   PubMed Web of Science ®Google Scholar
• Ferrell BR, Kravitz K. Cancer care: supporting underserved and financially burdened family caregivers. J Adv Pract Oncol. 2017;8(5):494–500.
   PubMedGoogle Scholar
• Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004;170(12):1795–1801. doi:10.1503/cmaj.1031205
   PubMed Web of Science ®Google Scholar
• Jacobs JM, Shaffer KM, Nipp RD, et al. Distress is interdependent in patients and caregivers with newly diagnosed incurable cancers. Ann Behav Med. 2017;51(4):519–531. doi:10.1007/s12160-017-9875-3
   PubMed Web of Science ®Google Scholar
• Padmaja G, Vanlalhruaii C, Rana S, Nandinee D, Hariharan M. Care givers' depression, anxiety, distress, and somatization as predictors of identical symptoms in cancer patients. J Cancer Res Ther. 2016;12(1):53–57. doi:10.4103/0973-1482.146088
   PubMed Web of Science ®Google Scholar
• Pai AL, Greenley RN, Lewandowski A, Drotar D, Youngstrom E, Peterson CC. A meta-analytic review of the influence of pediatric cancer on parent and family functioning. J Fam Psychol. 2007;21(3):407–415. doi:10.1037/0893-3200.21.3.407
   PubMed Web of Science ®Google Scholar
• Kershaw T, Ellis KR, Yoon H, Schafenacker A, Katapodi M, Northouse L. The interdependence of advanced cancer patients' and their family caregivers' mental health, physical health, and self-efficacy over time. Ann Behav Med. 2015;49(6):901–911. doi:10.1007/s12160-015-9743-y
   PubMed Web of Science ®Google Scholar
• Andersen BL, DeRubeis RJ, Berman BS, et al. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: an American Society of Clinical Oncology guideline adaptation. J Clin Oncol. 2014;32(15):1605–1619. doi:10.1200/JCO.2013.52.4611
   PubMed Web of Science ®Google Scholar
• Litzelman K, Green PA, Yabroff KR. Cancer and quality of life in spousal dyads: spillover in couples with and without cancer-related health problems. Support Care Cancer. 2016;24(2):763–771. doi:10.1007/s00520-015-2840-4
   PubMed Web of Science ®Google Scholar
• Litzelman K, Yabroff KR. How are spousal depressed mood, distress, and quality of life associated with risk of depressed mood in cancer survivors? Longitudinal findings from a national sample. Cancer Epidemiol Biomarkers Prev. 2015;24(6):969–977. doi:10.1158/1055-9965.EPI-14-1420
   PubMed Web of Science ®Google Scholar
• Litzelman K, Kent EE, Rowland JH. Interrelationships between health behaviors and coping strategies among informal caregivers of cancer survivors. Health Educ Behav. 2018;45(1):90–100. doi:10.1177/1090198117705164
   PubMed Web of Science ®Google Scholar
• Barrera M, D'Agostino NM, Gibson J, Gilbert T, Weksberg R, Malkin D. Predictors and mediators of psychological adjustment in mothers of children newly diagnosed with cancer. Psychooncology. 2004;13(9):630–641. doi:10.1002/pon.765
   PubMed Web of Science ®Google Scholar
• Sloper P. Predictors of distress in parents of children with cancer: a prospective study. J Pediatr Psychol. 2000;25(2):79–91. doi:10.1093/jpepsy/25.2.79
   PubMed Web of Science ®Google Scholar
• Kazak AE, Rourke MT, Alderfer MA, Pai A, Reilly AF, Meadows AT. Evidence-based assessment, intervention and psychosocial care in pediatric oncology: a blueprint for comprehensive services across treatment. J Pediatr Psychol. 2007;32(9):1099–1110. doi:10.1093/jpepsy/jsm031
   PubMed Web of Science ®Google Scholar
• Wickramaratne P, Gameroff MJ, Pilowsky DJ, et al. Children of depressed mothers 1 year after remission of maternal depression: findings from the STAR*D-Child study. Am J Psychiatry. 2011;168(6):593–602. doi:10.1176/appi.ajp.2010.10010032
   PubMed Web of Science ®Google Scholar
• Beardslee WR, Gladstone TR, O'Connor EE. Transmission and prevention of mood disorders among children of affectively ill parents: a review. J Am Acad Child Adolesc Psychiatry. 2011;50(11):1098–1109. doi:10.1016/j.jaac.2011.07.020
   PubMed Web of Science ®Google Scholar
• Okado Y, Long AM, Phipps S. Association between parent and child distress and the moderating effects of life events in families with and without a history of pediatric cancer. J Pediatr Psychol. 2014;39(9):1049–1060. doi:10.1093/jpepsy/jsu058
   PubMed Web of Science ®Google Scholar
• Douglas SL, Daly BJ, Lipson AR. Relationship between physical and psychological status of cancer patients and caregivers. West J Nurs Res. 2016;38(7):858–873. doi:10.1177/0193945916632531
   PubMed Web of Science ®Google Scholar
• Stein KD, Syrjala KL, Andrykowski MA. Physical and psychological long-term and late effects of cancer. Cancer. 2008;112(11 Suppl):2577–2592. doi:10.1002/cncr.23448
   PubMed Web of Science ®Google Scholar
• 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(4):236–245. doi:10.1016/j.soncn.2012.09.006
   PubMedGoogle Scholar
• Mellon S, Kershaw TS, Northouse LL, Freeman‐Gibb L. A family-based model to predict fear of recurrence for cancer survivors and their caregivers . Psychooncology. 2007;16(3):214–223. doi:10.1002/pon.1074
   PubMed Web of Science ®Google Scholar
• Morishita M, Kamibeppu K. Quality of life and satisfaction with care among family caregivers of patients with recurrent or metastasized digestive cancer requiring palliative care. Support Care Cancer. 2014;22(10):2687–2696. doi:10.1007/s00520-014-2259-3
   PubMed Web of Science ®Google Scholar
• Brofenbrenner U. Ecological models of human development. In: Gauvain M, Cole M, eds. Readings on the Development of Children. 4th ed. New York, NY: Worth Publishers; 1994:3–8.
   Google Scholar
• Kearney JA, Salley CG, Muriel AC. Standards of psychosocial care for parents of children with cancer. Pediatr Blood Cancer. 2015;62(Suppl 5):S632–S683. doi:10.1002/pbc.25761
   PubMedGoogle Scholar
• Koocher GP. Quick reference for pediatric oncology clinicians: The psychiatric and psychological dimensions of pediatric cancer symptom management. Edited by Lori S. Wiener, Maryland Pao, Anne E. Kazak, Mary Jo Kupst, Andrea Farkas Patenaude, Jimmie C. Holland. IPOS Press, Charlottesville, VA, 2009. 354 pp. ISBN 0-9785319-1-4. Psycho-Oncology. 2009;18(11):1238. doi:10.1002/pon.1605
   Google Scholar
• Wijnberg-Williams BJ, Kamps WA, Klip EC, Hoekstra-Weebers JE. Psychological adjustment of parents of pediatric cancer patients revisited: five years later. Psychooncology. 2006;15(1):1–8. doi:10.1002/pon.927
   PubMed Web of Science ®Google Scholar
• Nam GE, Warner EL, Morreall DK, Kirchhoff AC, Kinney AY, Fluchel M. Understanding psychological distress among pediatric cancer caregivers. Support Care Cancer. 2016;24(7):3147–3155. doi:10.1007/s00520-016-3136-z
   PubMed Web of Science ®Google Scholar
• Harper FW, Peterson AM, Uphold H, et al. Longitudinal study of parent caregiving self-efficacy and parent stress reactions with pediatric cancer treatment procedures. Psychooncology. 2013;22(7):1658–1664. doi:10.1002/pon.3199
   PubMed Web of Science ®Google Scholar
• Lindahl Norberg A, Poder U, von Essen L. Early avoidance of disease- and treatment-related distress predicts post-traumatic stress in parents of children with cancer. Eur J Oncol Nurs. 2011;15(1):80–84. doi:10.1016/j.ejon.2010.05.009
   PubMed Web of Science ®Google Scholar
• Creswell PD, Wisk LE, Litzelman K, Allchin A, Witt WP. Parental depressive symptoms and childhood cancer: the importance of financial difficulties. Support Care Cancer. 2014;22(2):503–511. doi:10.1007/s00520-013-2003-4
   PubMed Web of Science ®Google Scholar
• Greening L, Stoppelbein L. Brief report: pediatric cancer, parental coping style, and risk for depressive, posttraumatic stress, and anxiety symptoms. J Pediatr Psychol. 2007;32(10):1272–1277. doi:10.1093/jpepsy/jsm057
   PubMed Web of Science ®Google Scholar
• Robinson KE, Gerhardt CA, Vannatta K, Noll RB. Parent and family factors associated with child adjustment to pediatric cancer. J Pediatr Psychol. 2007;32(4):400–410. doi:10.1093/jpepsy/jsl038
   PubMed Web of Science ®Google Scholar
• Kazak AE, Alderfer M, Rourke MT, Simms S, Streisand R, Grossman JR. Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. J Pediatr Psychol. 2004;29(3):211–219. doi:10.1093/jpepsy/jsh022
   PubMed Web of Science ®Google Scholar
• Norberg AL, Lindblad F, Boman KK. Coping strategies in parents of children with cancer. Soc Sci Med. 2005;60(5):965–975. doi:10.1016/j.socscimed.2004.06.030
   PubMed Web of Science ®Google Scholar
• Dunn MJ, Rodriguez EM, Barnwell AS, et al. Posttraumatic stress symptoms in parents of children with cancer within six months of diagnosis. Health Psychol. 2012;31(2):176–185. doi:10.1037/a0025545
   PubMed Web of Science ®Google Scholar
• Boman KK, Kjällander Y, Eksborg S, Becker J. Impact of prior traumatic life events on parental early stage reactions following a child's cancer. PLoS One. 2013;8(3):e57556. doi:10.1371/journal.pone.0057556
   PubMed Web of Science ®Google Scholar
• Crespo C, Santos S, Tavares A, Salvador A. "Care that matters": family-centered care, caregiving burden, and adaptation in parents of children with cancer. Fam Syst Health. 2016;34(1):31–40. doi:10.1037/fsh0000166
   PubMed Web of Science ®Google Scholar
• Santos S, Crespo C, Canavarro MC, Alderfer MA, Kazak AE. Family rituals, financial burden, and mothers' adjustment in pediatric cancer. J Fam Psychol. 2016;30(8):1008–1013. doi:10.1037/fam0000246
   PubMed Web of Science ®Google Scholar
• Olagunju AT, Sarimiye FO, Olagunju TO, Habeebu MY, Aina OF. Child's symptom burden and depressive symptoms among caregivers of children with cancers: an argument for early integration of pediatric palliative care. Ann Palliat Med. 2016;5(3):157–165. doi:10.21037/apm.2016.04.03
   PubMed Web of Science ®Google Scholar
• Edmond SN, Graves PE, Whiting SE, Karlson CW. Emotional distress and burden among caregivers of children with oncological/hematological disorders. Fam Syst Health. 2016;34(2):166–171. doi:10.1037/fsh0000181
   PubMed Web of Science ®Google Scholar
• Choi EK, Yoon SJ, Kim JH, Park HJ, Kim JY, Yu ES. Depression and distress in caregivers of children with brain tumors undergoing treatment: psychosocial factors as moderators. Psychooncology. 2016;25(5):544–550. doi:10.1002/pon.3962
   PubMed Web of Science ®Google Scholar
• Mullins LL, Molzon ES, Suorsa KI, Tackett AP, Pai ALH, Chaney JM. Models of resilience: developing psychosocial interventions for parents of children with chronic health conditions. Fam Relat. 2015;64(1):176–189. doi:10.1111/fare.12104
   Web of Science ®Google Scholar
• Kazak AE, Kassam-Adams N, Schneider S, Zelikovsky N, Alderfer MA, Rourke MA. An integrative model of pediatric medical traumatic stress. J Pediatr Psychol. 2006;31(4):343–355. doi:10.1093/jpepsy/jsj054
   PubMed Web of Science ®Google Scholar
• Bleyer A. Young adult oncology: the patients and their survival challenges. CA Cancer J Clin. 2007;57(4):242–255. doi:10.3322/canjclin.57.4.242
   PubMed Web of Science ®Google Scholar
• Bleyer A. The adolescent and young adult gap in cancer care and outcome. Curr Probl Pediatr Adolesc Health Care. 2005;35(5):182–217. doi:10.1016/j.cppeds.2005.02.001
   PubMedGoogle Scholar
• Barr RD, Ferrari A, Ries L, Whelan J, Bleyer WA. Cancer in adolescents and young adults: a narrative review of the current status and a view of the future. JAMA Pediatr. 2016;170(5):495–501. doi:10.1001/jamapediatrics.2015.4689
   PubMed Web of Science ®Google Scholar
• Warner EL, Kent EE, Trevino KM, Parsons HM, Zebrack BJ, Kirchhoff AC. Social well-being among adolescents and young adults with cancer: a systematic review. Cancer. 2016;122(7):1029–1037. doi:10.1002/cncr.29866
   PubMed Web of Science ®Google Scholar
• Kent EE, Parry C, Montoya MJ, Sender LS, Morris RA, Anton-Culver H. "You're too young for this": adolescent and young adults' perspectives on cancer survivorship. J Psychosoc Oncol. 2012;30(2):260–279. doi:10.1080/07347332.2011.644396
   PubMed Web of Science ®Google Scholar
• Kirchhoff AC, Yi J, Wright J, Warner EL, Smith KR. Marriage and divorce among young adult cancer survivors. J Cancer Surviv. 2012;6(4):441–450. doi:10.1007/s11764-012-0238-6
   PubMed Web of Science ®Google Scholar
• Bellizzi KM, Smith A, Schmidt S, et al. Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer. 2012;118(20):5155–5162. doi:10.1002/cncr.27512
   PubMed Web of Science ®Google Scholar
• Gutierrez-Colina AM, Lee JL, VanDellen M, et al. Family functioning and depressive symptoms in adolescent and young adult cancer survivors and their families: a dyadic analytic approach. J Pediatr Psychol. 2017;42(1):19–27.
   PubMed Web of Science ®Google Scholar
• Juth V, Silver RC, Sender L. The shared experience of adolescent and young adult cancer patients and their caregivers. Psychooncology. 2015;24(12):1746–1753. doi:10.1002/pon.3785
   PubMed Web of Science ®Google Scholar
• American Cancer Society. Cancer facts and figures 2018. Atlanta, GA: American Cancer Society; 2018. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2018/cancer-facts-and-figures-2018.pdf. Accessed December 1, 2017.
   Google Scholar
• Noone A, Howlader N, Krapcho M, et al. SEER cancer statistics review, 1975-2015. Bethesda, MD: National Cancer Institute. April 2018. https://seer.cancer.gov/csr/1975_2015/. Accessed December 1, 2017. Based on November 2017 SEER data submission, posted to the SEER web site.
   Google Scholar
• U.S. Census Bureau. American FactFinder, 2017 American community survey 1-year estimates, table B12002; generated by Kristin Litzelman; using American FactFinder. Accessed September 15, 2018. data.census.gov.
   Google Scholar
• U.S. Census Bureau. America’s families and living arrangements: 2016, table F1. Family households, by type, age of own children, age of family members, and age of householder: 2016. https://www.census.gov/data/tables/2016/demo/families/cps-2016.html. Published May 4, 2018. Accessed July 21, 2020.
   Google Scholar
• U.S. Census Bureau. American FactFinder, 2017 American community survey 1-year estimates, table B23001; generated by Kristin Litzelman; using American FactFinder. Accessed September 15, 2018. http://factfinder2.census.gov
   Google Scholar
• Gomez SL, Hurley S, Canchola AJ, et al. Effects of marital status and economic resources on survival after cancer: a population-based study. Cancer. 2016;122(10):1618–1625. doi:10.1002/cncr.29885
   PubMed Web of Science ®Google Scholar
• Kim Y, Baker F, Spillers RL, Wellisch DK. Psychological adjustment of cancer caregivers with multiple roles. Psychooncology. 2006;15(9):795–804. doi:10.1002/pon.1013
   PubMed Web of Science ®Google Scholar
• Aamotsmo T, Bugge KE. Balance artistry: the healthy parent's role in the family when the other parent is in the palliative phase of cancer-challenges and coping in parenting young children. Palliat Support Care. 2014;12(4):317–329. doi:10.1017/S1478951513000953
   PubMed Web of Science ®Google Scholar
• Schulz R, Eden J. Economic impact of family caregiving. In: Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine, Schulz R, Eden J, editors. Families Caring for an Aging America. Washington, DC: National Academies Press (US); 2016:123–157.
   Google Scholar
• Penning MJ, Wu Z. Caregiver stress and mental health: impact of caregiving relationship and gender. Gerontologist. 2016;56(6):1102–1113. doi:10.1093/geront/gnv038
   PubMed Web of Science ®Google Scholar
• National Family Caregiver Support Program. Administration for community living. https://www.acl.gov/programs/support-caregivers/national-family-caregiver-support-program. Published November 12, 2019. Accessed July 21, 2020.
   Google Scholar
• U.S. Census Bureau. Older people projected to outnumber children for first time in U.S. history. Published March 13, 2018. Accessed September 17, 2018. https://www.census.gov/newsroom/press-releases/2018/cb18-41-population-projections.html
   Google Scholar
• Ge L, Mordiffi SZ. Factors associated with higher caregiver burden among family caregivers of elderly cancer patients: a systematic review. Cancer Nurs. 2017;40(6):471–478. doi:10.1097/NCC.0000000000000445
   PubMed Web of Science ®Google Scholar
• Hsu T, Loscalzo M, Ramani R, et al. Factors associated with high burden in caregivers of older adults with cancer. Cancer. 2014;120(18):2927–2935. doi:10.1002/cncr.28765
   PubMed Web of Science ®Google Scholar
• Ji J, Zoller B, Sundquist K, Sundquist J. Increased risks of coronary heart disease and stroke among spousal caregivers of cancer patients. Circulation. 2012;125(14):1742–1747. doi:10.1161/CIRCULATIONAHA.111.057018
   PubMed Web of Science ®Google Scholar
• Jansen L, Dauphin S, van den Akker M, De Burghgraeve T, Schoenmakers B, Buntinx F. Prevalence and predictors of psychosocial problems in informal caregivers of older cancer survivors - a systematic review: still major gaps in current research. Eur J Cancer Care. 2018;27(6):e12899. doi:10.1111/ecc.12899
   PubMed Web of Science ®Google Scholar
• Dionne-Odom JN, Applebaum AJ, Ornstein KA, et al. Participation and interest in support services among family caregivers of older adults with cancer. Psychooncology. 2018;27(3):969–968. doi:10.1002/pon.4603
   PubMed Web of Science ®Google Scholar
• Goldzweig G, Baider L, Andritsch E, Rottenberg Y. Hope and social support in elderly patients with cancer and their partners: an actor-partner interdependence model. Future Oncol. 2016;12(24):2801–2809. doi:10.2217/fon-2016-0267
   PubMed Web of Science ®Google Scholar
• Tanco K, Park JC, Cerana A, Sisson A, Sobti N, Bruera E. A systematic review of instruments assessing dimensions of distress among caregivers of adult and pediatric cancer patients. Palliat Support Care. 2017;15(1):110–124. doi:10.1017/S1478951516000079
   PubMed Web of Science ®Google Scholar
• Treanor CJ, Santin O, Prue G, et al. Psychosocial interventions for informal caregivers of people living with cancer. Cochrane Database Syst Rev. 2019;6:CD009912. doi:10.1002/14651858.CD009912.pub2
   PubMedGoogle Scholar
• Ferrell B, Wittenberg E. A review of family caregiving intervention trials in oncology. CA Cancer J Clin. 2017;67(4):318–325. doi:10.3322/caac.21396
   PubMed Web of Science ®Google Scholar