A qualitative exploration of the dynamics of guilt experience in family cancer caregivers.
Cancer
Family caregivers
Guilt
Qualitative
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:
27 Oct 2023
27 Oct 2023
Historique:
received:
03
02
2023
accepted:
21
09
2023
medline:
30
10
2023
pubmed:
27
10
2023
entrez:
27
10
2023
Statut:
epublish
Résumé
Caregiving for cancer patients can cause stress among family caregivers. Caregiving stress is also associated with guilt as they cannot provide adequate care for cancer patients. However, guilt among family caregivers of cancer patients is poorly understood. This qualitative study aimed to explore the dynamics of guilt feelings in families that care for cancer patients. This study involved 45 family caregivers of cancer patients. Thematic data analysis was conducted. There were six themes emerging. Caregiving can be challenging, guilt and blame, guilt due to lack of self-capacity, guilt for neglecting others, no guilt at all, and discussion of guilt and blame as a caregiver. This study offers insight into social workers regarding the challenges and experiences faced by family caregivers of cancer patients. Appropriate health interventions and support should be provided to family caregivers of cancer patients to improve their well-being.
Identifiants
pubmed: 37889352
doi: 10.1007/s00520-023-08060-3
pii: 10.1007/s00520-023-08060-3
pmc: PMC10611882
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
659Subventions
Organisme : Short term grant Universiti Sains Malaysia.
ID : 304/PSOSIAL6315319
Informations de copyright
© 2023. The Author(s).
Références
Applebaum AJ, Farran CJ, Marziliano AM, Pasternak AR, Breitbart W (2014) Preliminary study of themes of meaning and psychosocial service use among informal cancer caregiving family. Palliat Support Care 12(2):139–148. https://doi.org/10.1017/S1478951513000084
doi: 10.1017/S1478951513000084
pubmed: 23919966
Barben J, Billa O, Collot J et al (2023) Quality of life and perceived burden of the primary caregiving family of patients aged 70 and over with cancer 5 years after initial treatment. Support Care Cancer 31:147. https://doi.org/10.1007/s00520-023-07594-w
doi: 10.1007/s00520-023-07594-w
pubmed: 36729239
pmcid: 9892678
Bradley CJ (2019) Economic burden associated with cancer caregiving. Sem Oncol Nurs 35(4):333–336. https://doi.org/10.1016/j.soncn.2019.06.003
doi: 10.1016/j.soncn.2019.06.003
Calasanti T (2010) Gender relations and applied research on aging. Gerontol 50:6. https://doi.org/10.1093/geront/gnq085
doi: 10.1093/geront/gnq085
Cox-Seignoret K, Maharaj RG (2020) Unmet needs of patients with cancer in their last year of life as described by caregiving family in a developing world setting: a qualitative study. BMC Palliat Care 19:13. https://doi.org/10.1186/s12904-020-0516-4
doi: 10.1186/s12904-020-0516-4
pubmed: 31980019
pmcid: 6982385
Creswell JW (1998) Qualitative inquiry and research design: choosing among five traditions. Sage, Thousand Oaks, CA
del-Pino-Casado, R., Frías-Osuna, A., Palomino-Moral, P. A., & Ramón Martínez-Riera, J. (2012) Gender differences regarding informal caregiving family of older people. J Nurs Scholarsh 44:4. https://doi.org/10.1111/j.1547-5069.2012.01477.x
doi: 10.1111/j.1547-5069.2012.01477.x
DesRosier M, Catanzaro M, Piller J (1992) Living with chronic illness: social support and the well-spouse perspective. Rehabil Nurs J 17:87–91
doi: 10.1002/j.2048-7940.1992.tb01519.x
Dhavale P, Koparkar A, Fernandes P (2020) Palliative care interventions from a social work perspective and the challenges faced by patients and caregiving family during COVID-19. Indian J Palliat Care 26:5. https://doi.org/10.4103/IJPC.IJPC_149_20
doi: 10.4103/IJPC.IJPC_149_20
Fletcher BS, Miaskowski C, Lamb SA, Given B, Schumacher K (2012) The cancer family caregiving experience: an updated and expanded conceptual model. Eur J Oncol Nurs 16(4):387–398. https://doi.org/10.1016/j.ejon.2011.09.001
doi: 10.1016/j.ejon.2011.09.001
pubmed: 22000812
Gardiner C, Robinson J, Connolly M, Hulme C, Kang K, Rowland C, Larkin P, Meads D, Morgan T, Gott M (2020) Equity and the financial costs of informal caregiving in palliative care: a critical debate. BMC Palliat Care 19:1. https://doi.org/10.1186/s12904-020-00577-2
doi: 10.1186/s12904-020-00577-2
Given B, Sherwood PR (2006) Family care for the older person with cancer. Sem Oncol Nurs 22(1):43–50. https://doi.org/10.1016/J.SONCN.2005.10.006
doi: 10.1016/J.SONCN.2005.10.006
Guberman N, Maheu P, Maillé C (1992) Women as family caregiving family: why do they care? Gerontol 32:5. https://doi.org/10.1093/geront/32.5.607
doi: 10.1093/geront/32.5.607
Haley WE, LaMonde LA, Han B, Burton AM, Schonwetter R (2003) Predictors of depression and life satisfaction among spousal caregiving family in hospice: application of a stress process model. J Palliat Med 6:2. https://doi.org/10.1089/109662103764978461
doi: 10.1089/109662103764978461
Han MA (2012) Stress and depressive symptoms in cancer survivors and their family members: Korea Community Health Survey, 2012. Int J Environ Res Publ Health 14(9):999. https://doi.org/10.3390/ijerph14090999.PMID:28862672;PMCID:PMC5615536
doi: 10.3390/ijerph14090999.PMID:28862672;PMCID:PMC5615536
Harrop E, Morgan F, Byrne A et al (2016) It still haunts me whether we did the right thing: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregiving family. BMC Palliat Care 15:92
doi: 10.1186/s12904-016-0165-9
pubmed: 27825330
pmcid: 5101847
Hastert TA, Ruterbusch JJ, Nair M, Noor MI, Beebe-Dimmer JL, Schwartz K, Baird TE, Harper FWK, Thompson H, Schwartz AG (2020) Employment outcomes, financial burden, anxiety, and depression among caregiving family of African American cancer survivors. J Oncol Pract 16:3. https://doi.org/10.1200/JOP.19.00410
doi: 10.1200/JOP.19.00410
Jonasson JM, Hauksdóttir A, Nemes S, Surkan PJ, Valdimarsdóttir U, Onelöv E, Steineck G (2011) Couples’ communication before the wife’s death to cancer and the widower’s feelings of guilt or regret after the loss - A population-based investigation. Eur J Cancer 47:10. https://doi.org/10.1016/j.ejca.2011.01.010
doi: 10.1016/j.ejca.2011.01.010
Ketcher D, Otto AK, Vadaparampil ST, Heyman RE, Ellington L, Reblin M (2021) The psychosocial impact of spouse-caregiving family chronic health conditions and personal history of cancer on well-being in patients with advanced cancer and their caregiving family. J Pain Symptom Manag 62:2. https://doi.org/10.1016/j.jpainsymman.2020.12.008
doi: 10.1016/j.jpainsymman.2020.12.008
Koop PM, Strang VR (2003) The bereavement experience following home-based family caregiving for persons with advanced cancer. Clin Nurs Res 12:2. https://doi.org/10.1177/1054773803012002002
doi: 10.1177/1054773803012002002
LeSeure P, Chongkham-Ang S (2015) The experience of caregiving family living with cancer patients: a systematic review and meta-synthesis. J Personalized Med 5:4. https://doi.org/10.3390/jpm5040406
doi: 10.3390/jpm5040406
Lim HA, Tan JYS, Chua J, Yoong RKL, Lim SE, Kua EH, and Mahendran R (2017) Quality of life of family caregiving family of cancer patients in Singapore and globally. Singap Med J 58;5. https://doi.org/10.11622/smedj.2016083
Lkhoyaali S, El Haj MA, Omrani FE, Layachi M, Ismaili N, Mrabti H, Errihani H (2015) The burden among family caregiving family of elderly cancer patients: Prospective study in a Moroccan population. BMC Res Notes 8:1. https://doi.org/10.1186/s13104-015-1307-5
doi: 10.1186/s13104-015-1307-5
Losada A, Márquez-González M, Peñacoba C, Romero-Moreno R (2010) Development and validation of the caregiving family guilt questionnaire. Int Psychogeriatr 22(4):650–660. https://doi.org/10.1017/S1041610210000074
doi: 10.1017/S1041610210000074
pubmed: 20170587
Meier DE (2011) Increased access to palliative care and hospice services: opportunities to improve value in health care. Milbank Q 89:3. https://doi.org/10.1111/j.1468-0009.2011.00632.x
doi: 10.1111/j.1468-0009.2011.00632.x
Mohamed Hussin NA, Mohammad T, Azman A, Guàrdia-Olmos J, Aho AL (2018) The dynamics of spousal relationships after the loss of a child among bereaved Malay parents. Interpersona 12(1):51–67
doi: 10.5964/ijpr.v12i1.288
Nouzari R, Najafi SS, and Momennasab M (2019) Post-traumatic growth among family caregiving family of cancer patients and its association with social support and hope. Int J Community Based Nurs Midwifery 7;4. https://doi.org/10.30476/IJCBNM.2019.73959.0
Pinquart M, Sörensen S (2006) Gender differences in caregiving family stressors, social resources, and health: an updated meta-analysis. J Gerontol - Ser B Psychol Sci Soc Sci 61:1. https://doi.org/10.1093/geronb/61.1.P33
doi: 10.1093/geronb/61.1.P33
Rodenbach RA, Norton SA, Wittink MN, Mohile S, Prigerson HG, Duberstein PR, Epstein RM (2019) When chemotherapy fails: emotionally charged experiences faced by family caregiving family of patients with advanced cancer. Patient Educ Couns 102:5. https://doi.org/10.1016/j.pec.2018.12.014
doi: 10.1016/j.pec.2018.12.014
Sandén U, Nilsson F, Thulesius H, Hägglund M, Harrysson L (2019) Cancer, a relational disease exploring the needs of relatives to cancer patients. Int J Qual Stud Health Well Being 14:1. https://doi.org/10.1080/17482631.2019.1622354
doi: 10.1080/17482631.2019.1622354
Schrank B, Ebert-Vogel A, Amering M, Masel EK, Neubauer M, Watzke H, Zehetmayer S, Schur S (2016) Gender differences in caregiving family burden and its determinants in family members of terminally ill cancer patients. Psychooncology 25(7):808–14. https://doi.org/10.1002/pon.4005
doi: 10.1002/pon.4005
pubmed: 26477788
Senden C, Vandecasteele T, Vandenberghe E, Versluys K, Piers R, Grypdonck M, Van Den Noortgate N (2015) The interaction between lived experiences of older patients and their family caregiving family confronted with a cancer diagnosis and treatment: a qualitative study. Int J Nurs Stud 52:1. https://doi.org/10.1016/j.ijnurstu.2014.07.012
doi: 10.1016/j.ijnurstu.2014.07.012
Singh PM, Prajapati A (2013Jun) Burden of schizophrenia on caregivers in Nepal. Nepal Med Coll J 15(2):140–143 (PMID: 24696936)
pubmed: 24696936
Sklenarova H, Krümpelmann A, Haun MW, Friederich HC, Huber J, Thomas M, Winkler EC, Herzog W, Hartmann M (2015) When do we need to care about the caregiving family? Supportive care needs, anxiety, and depression among informal caregiving family of patients with cancer and cancer survivors. Cancer 1(121):91513–91519. https://doi.org/10.1002/cncr.29223
doi: 10.1002/cncr.29223
Spillers RL, Wellisch DK, Kim Y, Matthews BA, Baker F (2008) Family caregiving family and guilt in the context of cancer care. Psychosom 49(6):511–519. https://doi.org/10.1176/appi.psy.49.6.511
doi: 10.1176/appi.psy.49.6.511
Sue DW, Sue D (2003) Counseling the culturally different: theory and practice, 4th edn. Wiley, New York, NY, USA
Tangney JP, Dearing RL (2002) Shame and guilt. Guilford, New York
Teitelman J, Watts JH (2004) Family members’ recommendations for achieving a mental break from caring for a loved one with Alzheimer’s disease. Alzheimer Care 5:252–260
Teschendorf B, Schwartz C, Ferrans CE, O’mara, A., Novotny, P., & Sloan, J. (2007) Caregiving family role stress: when families become providers. Cancer Control 14:2
doi: 10.1177/107327480701400212
Oka T, Mohamed Hussin NA, Hagström AS (2017) The diversity of indigenous wisdom on grief: exploring social work approaches to bereavement. The IAFOR Int Conf Soc Sci, Hawaii
Wennman-Larsen A, Tishelman C (2002) Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregiving family. Scand J Caring Sci 16:3. https://doi.org/10.1046/j.1471-6712.2002.00091.x
doi: 10.1046/j.1471-6712.2002.00091.x
Wong SS, George TJ, Godfrey M, Le J, Pereira DB (2019) Using photography to explore psychological distress in patients with pancreatic cancer and their caregiving family: a qualitative study. Support Care Cancer 1:321–328
doi: 10.1007/s00520-018-4330-y
Yeung NCY, Zhang Y, Ji L, Lu G, Lu Q (2018) Guilt among husband caregiving family of Chinese women with breast cancer: the roles of male gender-role norm, caregiving burden and coping processes. Eur J Cancer Care 27:5. https://doi.org/10.1111/ecc.12872
doi: 10.1111/ecc.12872
Young J, Snowden A (2017) A systematic review on the factors associated with positive experiences in carers of someone with cancer. Eur J Cancer Care 26:3. https://doi.org/10.1111/ecc.12544
doi: 10.1111/ecc.12544
Zanini C, Amann J, Brach M, Gemperli A, Rubinelli S (2021) The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury. Spinal Cord 59:493–503. https://doi.org/10.1038/s41393-021-00618-4
doi: 10.1038/s41393-021-00618-4
pubmed: 33742117
pmcid: 8110474
Zarit SH, Stephens MAP, Townsend A, Greene R (1998) Stress reduction for family caregiving family: Effects of adult day care use. J Gerontol - Ser B Psychol Sci Soc Sci 53:5. https://doi.org/10.1093/geronb/53B.5.S267
doi: 10.1093/geronb/53B.5.S267