Advertisement

Family interactions in childhood leukemia: an exploratory descriptive study

  • Jaefar Moghaddasi
  • Fariba Taleghani
  • Alireza Moafi
  • Azadeh Malekian
  • Mahrokh Keshvari
  • Mahnaz Ilkhani
Original Article
  • 3 Downloads

Abstract

Background

A child’s cancer not only affects the child in question, but also their family members and even closes relatives and friends. The nature of this disease is such that, while imposing a high level of care workload on the family, it also affects various family aspects including personal, familial, and social interactions and relationships, as well as family functioning. This study aims to describe family interactions in childhood leukemia.

Methods

This study was an exploratory descriptive study, conducted on 58 participants (40 family members and 18 members of the health team), with purposeful sampling and semi-structured interviews—63 personal interviews and four group interviews—in the research context of the Cancer Hospital in Isfahan, 2016–2017. Data analysis in this study was carried out with qualitative content analysis using the Graneheim method.

Results

In the data analysis, four main categories and 13 subcategories were revealed. The first category, changes in roles, included the subcategories of super caregiver mother, supportive super father, role shift, self and others’ forgetfulness, and confusion in roles and tasks; the second category, changes in interpersonal relationships, included the subcategories of changes in spousal relationships, changes in parent-child relationships, and changes in relationships between children; the third category, changes in social interactions, included the subcategories of changes in relationships with relatives, changes in relationships with peers, changes in relationships with the therapy team, and changes in interaction with supportive social networks; and the fourth category, changes in relationship with God, included the subcategories of spiritual bond and spiritual illness.

Conclusion

Regarding the findings of this study, it is expected that health system policymakers in the country, while striving to strengthen the positive aspect of changes in family relationships and interactions, will develop and execute operational, comprehensive, and society-based plans in order to eliminate the barriers and problems of relationships within the family, as well as in relation to the larger community, taking into consideration the family’s cultural and social beliefs.

Keywords

Child Leukemia Interaction Family Qualitative study Iran 

Notes

Acknowledgements

The authors thank the participants in the university training center attached to the IUMS in which the study was conducted; the financial support of the IUMS Vice-President for Research is sincerely appreciated as well.

Funding information

This research was conducted with the financial support of the Vice-Chancellor for Research, Isfahan University of Medical Sciences (IUMS, research project number 395268)

Compliance with ethical standards

Ethical consideration

This study was approved by the Ethics Committee of the Isfahan University of Medical Sciences (No. IR.MUI.REC.1395030268). Written and oral consent was obtained from the participants. The location and time of the interviews were determined according to the participants’ comments. They were also assured of the confidentiality of their information and the right to resign from the research. Their names were classified and a code was assigned to each participant so as to provide access to the text of the interviews in the phases of analysis and report. Participants with negative and distressing experiences were psychologically supported by being referred to psychologists.

Conflict of interest

The authors declare that they have no conflict of interest.

References

  1. 1.
    Hunger SP, Lu X, Devidas M, Camitta BM, Gaynon PS, Winick NJ, Reaman GH, Carroll WL (2012) Improved survival for children and adolescents with acute lymphoblastic leukemia between 1990 and 2005: a report from the children's oncology group. J Clin Oncol 30(14):1663–1669CrossRefPubMedPubMedCentralGoogle Scholar
  2. 2.
    Siegel RL, Miller KD, Jemal A (2016) Cancer statistics, 2016. CA Cancer J Clin 66(1):7–30CrossRefPubMedGoogle Scholar
  3. 3.
    Lanzkowsky P, Lipton JM, Fish JD (2016) Lanzkowsky’s manual of pediatric hematology and oncology. London, UK: Academic Press is an imprint of Elsevier.Google Scholar
  4. 4.
    Litzelman K, Catrine K, Gangnon R, Witt WP (2011) Quality of life among parents of children with cancer or brain tumors: the impact of child characteristics and parental psychosocial factors. Qual Life Res 20(8):1261–1269CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Kliegman RM, Stanton B, Geme JS, Schor NF, Behrman RE (2015) Nelson textbook of pediatrics. Philadelphia, PA: Elsevier/SaundersGoogle Scholar
  6. 6.
    Hudson MM, Meyer WH, Pui C-H (2015) Progress born from a legacy of collaboration. J Clin Oncol 33(27):2935–2937CrossRefPubMedGoogle Scholar
  7. 7.
    Cebeci F, Yangın HB, Tekeli A (2012) Life experiences of women with breast cancer in south western Turkey: a qualitative study. Eur J Oncol Nurs 16(4):406–412CrossRefPubMedGoogle Scholar
  8. 8.
    Aghajani H, Eatemad K, Goya M, Ramezani R, Modirian M, Nadali F (2012) Iranian annual of national cancer registration report. Tehran: nashre javan 154 pGoogle Scholar
  9. 9.
    Fyta K (2008) Parenting a child with leukemia: Mothers' and fathers' sense of competence and orientation towards uncertainty (Order No. NR47562). Available from ProQuest Dissertations & Theses A ProQuest Dissertations & Theses Global. (304799911). Retrieved from https://search.proquest.com/docview/304799911?accountid=41305 or https://papyrus.bib.umontreal.ca/mwg-internal/de5fs23hu73ds/progress?id=DBIWHUPr3EgQ-IzxH5qNrGOmM7oRHq3qKv_5TSMk98w
  10. 10.
    Valizadeh L, Joonbakhsh F, Pashaee S (2014) Determinants of care giving burden in parents of child with cancer at Tabriz children medical and training center. Journal of Clinical Nursing and Midwifery 3(2):13–20Google Scholar
  11. 11.
    Shi L, Gao Y, Zhao J, Cai R, Zhang P, Hu Y, Li Z, Li Y (2017) Prevalence and predictors of posttraumatic stress symptoms in parents of children with ongoing treatment for cancer in South China: a multi-centered cross-sectional study. Support Care Cancer 25(4):1159–1167CrossRefPubMedGoogle Scholar
  12. 12.
    Wang J, Shen N, Zhang X, Shen M, Xie A, Howell D, Yuan C (2017) Care burden and its predictive factors in parents of newly diagnosed children with acute lymphoblastic leukemia in academic hospitals in China. Support Care Cancer 25(12):3703–3713CrossRefPubMedGoogle Scholar
  13. 13.
    Gianinazzi ME, Rueegg CS, Vetsch J, Lüer S, Kuehni CE, Michel G (2016) Cancer’s positive flip side: posttraumatic growth after childhood cancer. Support Care Cancer 24(1):195–203CrossRefPubMedGoogle Scholar
  14. 14.
    Nordgren L, Asp M, Fagerberg I (2007) An exploration of the phenomenon of formal care from the perspective of middle-aged heart failure patients. Eur J Cardiovasc Nurs 6(2):121–129CrossRefPubMedGoogle Scholar
  15. 15.
    Kuan HY (2000) Identifying the needs of Chinese family caregivers of children with cancer in Hong Kong (Order No. 9975716). Available from Nursing & Allied Health Database; ProQuest Dissertations & Theses A ProQuest Dissertations & Theses Global. (304676770). Retrieved from https://search.proquest.com/docview/304676770?accountid=41305 or http://hdl.handle.net/10397/4161
  16. 16.
    Mandelblatt J, Figueiredo M, Cullen J (2003) Outcomes and quality of life following breast cancer treatment in older women: when, why, how much, and what do women want? Health Qual Life Outcomes 1(1):45CrossRefPubMedPubMedCentralGoogle Scholar
  17. 17.
    Kamaludin KM, Muhammad M, Wahat NWA, Ibrahim R (2013) Challenges in volunteering from cancer care volunteers perspectives. Asian Pac J Cancer Prev 14(8):4795–4800CrossRefPubMedGoogle Scholar
  18. 18.
    Hydary L, Mokhtari Hesari P (2015) Common breast cancer family care giving problems. Iran J Breast Dis 8(2):7–14Google Scholar
  19. 19.
    Abazari P, Taleghani F, Hematti S, Ehsani M (2016) Exploring perceptions and preferences of patients, families, physicians, and nurses regarding cancer disclosure: a descriptive qualitative study. Support Care Cancer 24(11):4651–4659CrossRefPubMedGoogle Scholar
  20. 20.
    Oliveira M, Campos M, Padilha J, Pereira F, Sousa P (2011) Exploring the family caregiving phenomenon in nursing documentation. Online J Nurs Inform 15(1). http://ojni.org/issues/?p=137
  21. 21.
    Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW (2010) Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin 60(5):317–339PubMedPubMedCentralGoogle Scholar
  22. 22.
    Grove SK, Burns N, Gray J (2014) Understanding nursing research: building an evidence-based practice: St. Louis, Missouri: ElsevierGoogle Scholar
  23. 23.
    Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 24(2):105–112CrossRefPubMedGoogle Scholar
  24. 24.
    Denzin NK, Lincoln YS (2011) The sage handbook of qualitative research. Thousand Oaks [etc.]: SageGoogle Scholar
  25. 25.
    Hosoda T (2014) The impact of childhood cancer on family functioning: a review. Graduate Student Journal of Psychology 15:18–30Google Scholar
  26. 26.
    Nikfarid L, Rassouli M, Borimnejad L, Alavimajd H (2017) Experience of chronic sorrow in mothers of children with cancer: a phenomenological study. Eur J Oncol Nurs 28:98–106CrossRefPubMedGoogle Scholar
  27. 27.
    Santo EARE, Gaíva MAM, Espinosa MM, Barbosa DA, Belasco AGS (2011) Taking care of children with cancer: evaluation of the caregivers' burden and quality of life. Rev Lat Am Enfermagem 19(3):515–522CrossRefGoogle Scholar
  28. 28.
    Kim MA, Yi J, Sang J, Kim SH, Heo I (2017) Experiences of Korean mothers of children with cancer: a photovoice study. J Psychosoc Oncol 35(2):128–147CrossRefPubMedGoogle Scholar
  29. 29.
    Leow MQ, Chan SW (2017) The challenges, emotions, coping, and gains of family caregivers caring for patients with advanced cancer in Singapore: a qualitative study. Cancer Nurs 40(1):22–30CrossRefPubMedGoogle Scholar
  30. 30.
    Rivero-Vergne A, Berrios R, Romero I (2008) Cultural aspects of the Puerto Rican cancer experience: the mother as the main protagonist. Qual Health Res 18(6):811–820CrossRefPubMedGoogle Scholar
  31. 31.
    Silva-Rodrigues FM, Pan R, Sposito AMP, Alvarenga WDA, Nascimento LC (2016) Childhood cancer: impact on parents' marital dynamics. Eur J Oncol Nurs 23:34–42CrossRefPubMedGoogle Scholar
  32. 32.
    Long KA, Marsland AL, Wright A, Hinds P (2015) Creating a tenuous balance: siblings’ experience of a brother’s or sister’s childhood cancer diagnosis. J Pediatr Oncol Nurs 32(1):21–31CrossRefPubMedGoogle Scholar
  33. 33.
    Alderfer MA, Long KA, Lown EA, Marsland AL, Ostrowski NL, Hock JM, Ewing LJ (2010) Psychosocial adjustment of siblings of children with cancer: a systematic review. Psycho-Oncology 19(8):789–805CrossRefPubMedGoogle Scholar
  34. 34.
    Yi J, Zebrack B (2010) Self-portraits of families with young adult cancer survivors: using photovoice. J Psychosoc Oncol 28(3):219–243CrossRefPubMedPubMedCentralGoogle Scholar
  35. 35.
    Kazak AE, Brier M, Alderfer MA, Reilly A, Parker SF, Rogerwick S et al (2012) Screening for psychosocial risk in pediatric cancer. Pediatr Blood Cancer 59(5):822–827CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Njuguna F, Mostert S, Seijffert A, Musimbi J, Langat S, van der Burgt RHM, Skiles J, Sitaresmi MN, van de Ven PM, Kaspers GJL (2015) Parental experiences of childhood cancer treatment in Kenya. Support Care Cancer 23(5):1251–1259CrossRefPubMedGoogle Scholar
  37. 37.
    Castor C, Landgren K, Hansson H, Kristensson Hallström I (2018) A possibility for strengthening family life and health: family members’ lived experience when a sick child receives home care in Sweden. Health & Social Care in the Community 26(2):224–231Google Scholar
  38. 38.
    D'Urso A, Mastroyannopoulou K, Kirby A (2017) Experiences of posttraumatic growth in siblings of children with cancer. Clin Child Psychol Psychiatry 22(2):301–317CrossRefPubMedGoogle Scholar
  39. 39.
    Taleghani F, Fathizadeh N, Naseri N (2012) The lived experiences of parents of children diagnosed with cancer in Iran. Eur J Cancer Care (Engl) 21(3):340–348CrossRefGoogle Scholar
  40. 40.
    Gan LL, Lum A, Wakefield CE, Nandakumar B, Fardell JE (2017) School experiences of siblings of children with chronic illness: a systematic literature review. J Pediatr Nurs 33:23–32CrossRefPubMedGoogle Scholar
  41. 41.
    Kars MC, Grypdonck MHF, de Korte-Verhoef MC, Kamps WA, Meijer-van den Bergh EMM, Verkerk MA et al (2011) Parental experience at the end-of-life in children with cancer: 'preservation' and 'letting go' in relation to loss. Support Care Cancer 19(1):27–35CrossRefPubMedGoogle Scholar
  42. 42.
    Tenniglo LJA, Loeffen EAH, Kremer LCM, Font-Gonzalez A, Mulder RL, Postma A, Naafs-Wilstra MC, Grootenhuis MA, van de Wetering MD, Tissing WJE (2017) Patients’ and parents’ views regarding supportive care in childhood cancer. Support Care Cancer 25(10):3151–3160CrossRefPubMedPubMedCentralGoogle Scholar
  43. 43.
    Ballard-Reisch DS, Letner JA (2003) Centering families in cancer communication research: acknowledging the impact of support, culture and process on client/provider communication in cancer management. Patient Educ Couns 50(1):61–66CrossRefPubMedGoogle Scholar
  44. 44.
    Doumit MA, Huijer HA-S, Kelley JH, Nassar N (2008) The lived experience of Lebanese family caregivers of cancer patients. Cancer Nurs 31(4):E36–E42CrossRefPubMedGoogle Scholar
  45. 45.
    Hekmatpou D, Eghbali A, Memari F (2013) The experiences of parents of children with leukemia: a qualitative research. J Arak Uni Med Sci 15(9):28–40Google Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  • Jaefar Moghaddasi
    • 1
  • Fariba Taleghani
    • 2
  • Alireza Moafi
    • 3
  • Azadeh Malekian
    • 4
  • Mahrokh Keshvari
    • 2
  • Mahnaz Ilkhani
    • 5
  1. 1.Department of Nursing, School of Nursing and MidwiferyIsfahan University of Medical SciencesIsfahanIran
  2. 2.Nursing and Midwifery Care Research Center, Faculty of Nursing and MidwiferyIsfahan University of Medical SciencesIsfahanIran
  3. 3.Pediatric Hematology and OncologyIsfahan University of Medical SciencesIsfahanIran
  4. 4.Psychosomatic Research CenterIsfahan University of Medical SciencesIsfahanIran
  5. 5.Nursing-Midwifery Faculty University of Shahid BehashatiTehranIran

Personalised recommendations