"Home wasn't really home anymore": Understanding caregivers' perspectives of the impact of blood cancer caregiving on the family system.
Blood cancer
Cancer
Caregiving
Coping
Family system
Lifespan
Journal
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
ISSN: 1433-7339
Titre abrégé: Support Care Cancer
Pays: Germany
ID NLM: 9302957
Informations de publication
Date de publication:
Jun 2021
Jun 2021
Historique:
received:
15
06
2020
accepted:
02
10
2020
pubmed:
15
10
2020
medline:
18
5
2021
entrez:
14
10
2020
Statut:
ppublish
Résumé
Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children. We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system. Caregivers ranged from age 30 to 64 (M = 43). They described four ways that caregiving impacted themselves and the larger family system: (1) disruption of home life, (2) emotional (dis)connection, (3) juggling competing roles, and (4) developing resiliency and intimacy. Perspectives within each category differed based on their relational role to the patient or in the broader family. Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.
Identifiants
pubmed: 33051829
doi: 10.1007/s00520-020-05811-4
pii: 10.1007/s00520-020-05811-4
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
3069-3076Références
Surbone A, Baider L, Weitzman TS, Brames MJ, Rittenberg CN, Johnson J (2010) Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement. Support Care Cancer 18:255–263
doi: 10.1007/s00520-009-0693-4
Galvin KM, Young MA (2010) Family systems theory. In: Gaff CL, Bylund CL (Eds) Family communication about genetics: theory and practice, Oxford University Press, pp 102-119
Northouse LL, Caffey M, Deichelbohrer L, Schmidt L, Guziatek-Tojniak L, West S, Kershaw T, Mood D (1999) The quality of life of African-American women with breast cancer. Res Nurs Health 22:435–448
doi: 10.1002/(SICI)1098-240X(199912)22:6<435::AID-NUR3>3.0.CO;2-N
Porter LS, Keefe FJ, Hurwitz H, Faber M (2005) Disclosure between patients with gastrointestinal cancer and their spouses. Psychooncology 14:1030–1042. https://doi.org/10.1002/pon.915
doi: 10.1002/pon.915
pubmed: 15712247
Soothill K, Morris SM, Thomas C, Harman JC, Francis B, McIllmurray MB (2003) The universal, situational, and personal needs of cancer patients and their main carers. Eur J Oncol Nurs 7:5–13. https://doi.org/10.1054/ejon.2002.0226
doi: 10.1054/ejon.2002.0226
pubmed: 12849570
Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, Van Den Bos GA (1998) Cancer and caregiving: the impact on the caregiver’s health. Psychooncology 7:3–13
doi: 10.1002/(SICI)1099-1611(199801/02)7:1<3::AID-PON320>3.0.CO;2-5
Rolland JS (2004) Helping families with anticipatory loss and terminal illness. In F Walsh, McGoldrick M (Eds) Living beyond loss: death in the family. W. W. Norton & Company, Inc. New York, pp 213-236
Schulz KH, Schultz H, Schultz O, Von Kerekjarto M (1996) Family structure and psychosocial stress in families of cancer patients. In: Baider L, Cooper CL, De-Nou AK (eds) Cancer and the family. John Wiley & Sons, New York, pp 225–255
Texeira RJ, Pereira MG (2014) Family caregiver support to cancer patients: the relevance of adult children. In: Paludi M (ed) The Praeger handbook on women's cancers: personal and psychosocial insights. Prager, Santa Barbara, pp 305–333
American Cancer Society [ACS] (2019) Cancer Facts & Figures 2019. https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2019.html
Howlader N, Noone AM, Krapcho M, Miller D, Brest A, Yu M, et al (eds) (2016) SEER cancer statistics review, 1975-2016. National Cancer Institute. Bethesda, MD, https://seer.cancer.gov/csr/1975_2016/
Bertero C, Eriksson BE, Ek AC (1997) Explaining different profiles in quality of life experiences in acute and chronic leukemia. Cancer Nurs 20:100–104
doi: 10.1097/00002820-199704000-00004
Bertero C, Eriksson BE, Ek AC (1997) A substantive theory of quality of life of adults with chronic leukemia. Int J Nurs Stud 34:9–16
doi: 10.1016/S0020-7489(96)00025-9
Bryant AL, Deal AM, Walton A, Wood WA, Muss H, Mayer DK (2015) Use of ED and hospital services for patients with acute leukemia after induction therapy: one year follow-up. Leuk Res 39:406–410. https://doi.org/10.1016/j.leukres.2015.01.006
doi: 10.1016/j.leukres.2015.01.006
pubmed: 25711944
pmcid: 25711944
Dionne-Odom JN, Currie ER, Johnston EE, Rosenberg AR (2019) Supporting family caregivers of adult and pediatric persons with leukemia. In Seminars in oncology nursing, WB Saunders, pp 150954
Pailler ME, Johnson TM, Kuszczak S, Attwood KM, Zevon MA, Griffiths E, Thompson J, Wang ES, Wetzler M (2016) Adjustment to acute leukemia: the impact of social support and marital satisfaction on distress and quality of life among newly diagnosed patients and their caregivers. J Clin Psychol Med Settings 23:298–309
doi: 10.1007/s10880-016-9459-6
Zimmermann C, Yuen D, Mischitelle A, Minden MD, Brandwein JM, Schimmer A, Rodin G (2013) Symptom burden and supportive care in patients with acute leukemia. Leuk Res 37:731–736
doi: 10.1016/j.leukres.2013.02.009
Bandura A, Caprara GV, Barbaranelli C, Regalia C, Scabini E (2011) Impact of family efficacy beliefs on quality of family functioning and satisfaction with family life. Appl Psychol 60:421–448. https://doi.org/10.1111/j.1464-0597.2010.00442.x
Beattie S, Lebel S, Petricone-Westwood D, Wilson KG, Harris C, Devins G, Huebsch L, Tay J (2017) Balancing give and take between patients and their spousal caregivers in hematopoietic stem cell transplantation. Psycho-oncol 26:2224–2231. https://doi.org/10.1002/pon.4340
doi: 10.1002/pon.4340
Ellis KR, Janevic MR, Kershaw T, Caldwell CH, Janz NK, Northouse L (2017) The influence of dyadic symptom distress on threat appraisals and self-efficacy in advanced cancer and caregiving. Support Care Cancer 25:185–194. https://doi.org/10.1007/s00520-016-3385-x
doi: 10.1007/s00520-016-3385-x
pubmed: 27631435
Kizza IB, Muliira JK (2020) Determinants of quality of life among family caregivers of adult cancer patients in a resource-limited setting. Support Care Cancer 28:1295–1304
doi: 10.1007/s00520-019-04947-2
Kim Y, Given BA (2008) Quality of life of family caregivers of cancer survivors. Cancer 112:2556–2568
doi: 10.1002/cncr.23449
Bachner YG, Karus DG, Raveis VH (2009) Examining the social context in the caregiving experience: correlates of global self-esteem among adult daughter caregivers to an older parent with cancer. J Aging Health 21:1016–1039. https://doi.org/10.1177/0898264309344320
doi: 10.1177/0898264309344320
pubmed: 19773598
Bastawrous M, Gignac MA, Kapral MK, Cameron JI (2015) Factors that contribute to adult children caregivers' well-being: a scoping review. Health Soc Care Community 23:449–466. https://doi.org/10.1111/hsc.12144
doi: 10.1111/hsc.12144
pubmed: 25472851
Moghaddasi J, Taleghani F, Moafi A, Malekian A, Keshvari M, Ilkhani M (2018) Family interactions in childhood leukemia: an exploratory descriptive study. Support Care Cancer 26:4161–4168
doi: 10.1007/s00520-018-4289-8
Long KA, Marsland AL (2011) Family adjustment to childhood cancer: a systematic review. Clin Child Fam Psychol Rev 14:57–88
doi: 10.1007/s10567-010-0082-z
Van Schoors M, Caes L, Verhofstadt LL, Goubert L, Alderfer MA (2015) Systematic review: family resilience after pediatric cancer diagnosis. J Pediatr Psychol 40:856–868
doi: 10.1093/jpepsy/jsv055
Walsh F (2015) A family developmental framework. In: Sexton TL, Lebow J (eds) Handbook of family therapy: the science and practice of working with families and couples. Routledge, New York, pp 30–47
doi: 10.4324/9780203123584-3
Glaser BG, Strauss AL (1967) The discovery of grounded theory: strategies for qualitative research. Aldine, Chicago
Strauss A, Corbin J (1998) Basics of qualitative research. Techniques and procedures for developing grounded theory. Sage, London
Owen WF (1984) Interpretive themes in relational communication. Q J Speech 70:274–287
doi: 10.1080/00335638409383697
Morse JM, Barrett M, Mayan M, Olson K, Spiers J (2002) Verification strategies for establishing reliability and validity in qualitative research. Int J Qual Methods 1:13–22
doi: 10.1177/160940690200100202
Fingerman KL, Nussbaum J, Birditt KS (2003) Keeping all five balls in the air: juggling family communication at midlife. In: Vangelisti A (ed) Handbook of family communication. Routledge, Mahwah, pp 159–176
Cicirelli VG (1993) Attachment and obligation as daughters' motives for caregiving behavior and subsequent effect on subjective burden. Psychol Aging 8:14–155. https://doi.org/10.1037/0882-7974.8.2.144
doi: 10.1037/0882-7974.8.2.144
Pecchioni LL, Wright KB, Nussbaum JF (2005) Life-span communication. Routledge, New York
Koerner AF, Schrodt P, Fitzpatrick MA (2017) Family communication patterns theory: a grand theory of family communication. In: Braithwaite D, Suter E, Floyd K (eds) Engaging theories in family communication. Routledge, Mahwah, pp 142–153
doi: 10.4324/9781315204321-13
Fisher CL, Wolf BM, Fowler C, Canzona MR (2017) Experiences of “openness” between mothers and daughters during breast cancer: implications for coping and healthy outcomes. Psychooncology 26:1872–1880. https://doi.org/10.1002/pon.4253
doi: 10.1002/pon.4253
pubmed: 27530810
Schrodt P, Witt PL, Messersmith AS (2008) A meta-analytical review of family communication patterns and their associations with information processing, behavioral, and psychosocial outcomes. Commun Monogr 75:248–269
doi: 10.1080/03637750802256318
Wittenberg E, Ferrell B, Koczywas M, Del CF, Ruel NH (2017) Pilot study of a communication coaching telephone intervention for lung cancer caregivers. Cancer Nurs 41:506–512. https://doi.org/10.1097/NCC.0000000000000535
doi: 10.1097/NCC.0000000000000535
Ghazavi Z, Feshangchi S, Alavi M, Keshvari M (2016) Effect of a family-oriented communication skills training program on depression, anxiety, and stress in older adults: a randomized clinical trial. Nurs Midwifery Stud, 5(1)
Senf B, Fettel J, Demmerle C, Maiwurm P (2019) Physicians' attitudes towards psycho-oncology, perceived barriers, and psychosocial competencies: indicators of successful implementation of adjunctive psycho-oncological care? Psychooncology 28:415–422
doi: 10.1002/pon.4962
Donovan EE, LeBlanc Farris K (2019) Interpersonal communication and coping with cancer: a multidisciplinary theoretical review of the literature. Commun Theory 29(2):236–256
doi: 10.1093/ct/qty026
Wolf BM (2015) Do families cope communally with breast cancer, or is it just talk? Qual Health Res 25(3):320–335
doi: 10.1177/1049732314549605