Family coping with pediatric leukemia: Ten years after treatment
Abstract
As part of a longitudinal study of family coping with pediatric leukemia, 28 former patients (16 male; 12 female; M age = 19.1 years) and their parents (23 mothers; 12 fathers) participated in a follow-up study at 10 years posttreatment. Measures included the Current Adjustment Rating Scale, the Brief Symptom Inventory, the Ways of Coping Scale, the Family Coping Scale, and a semistructured interview. Long-term survivors and their parents continued to be well-adjusted to life posttreatment. Coping and perceived adjustment in long-term survivors were positively related to socioeconomic status and mother's coping and negatively related to academic problems. A strong bidirectional relationship was found between survivors' and mother's adjustment. Coping strategies were variable and not significantly correlated with coping adequacy or adjustment.
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Parents' (particularly mothers') QOL is closely associated with their child's QOL.
“Some evidence suggests that parents’ (particularly mothers’) QOL is closely associated with their child’s QOL [5,14,15,16].”
From Providing psychological support to parents of childhood cancer survivors: ‘cascade’ intervention trial results and lessons for the future (2021) · cites this paper as [14]
The impact of poor parent coping may extend for years; even 10 to 15 years post-diagnosis, coping in child cancer survivors may still be related to their mother's coping.
“The impact of poor parent coping may extend for years, with evidence that even 10 to 15 years post-diagnosis, coping in child cancer survivors may still be related to their mother’s coping [23].”
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MethodPsychosocial Functioning in Pediatric Cancer
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BackgroundResultThematic Evidence of Psychosocial Thriving in Childhood Cancer Survivors
Parry, C., & Chesler, M. A. (2005) · Qualitative Health Research · doi:10.1177/1049732305277860 · Cited by 197 · see citing works
“Furthermore, many survivors report some positive outcomes from their experience with cancer, including an improved life outlook and better relationships (Andrykowski, Brady, & Hunt, 1993; Fritz & Williams, 1988; Kupst et al., 1995).”
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“The landmark longitudinal study of 64 families of children with leukemia conducted by Kupst and Schulman (1988) supports the persistence of "good copers" and family functioning throughout treatment and up to 10 years later in the 28 participants available for the long-term follow up (Kupst et al., 1995).”
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“However, an estimated 25–33% of the parents continue to suffer from problems (Kupst et al., 1995; HoekstraWeebers et al., 1999; Kazak et al., 2003).”
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BackgroundCoping strategies in parents of children with cancer
Norberg, A. L., Lindblad, F., & Boman, K. K. (2004) · Social Science & Medicine · doi:10.1016/j.socscimed.2004.06.030 · Cited by 148 · see citing works
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BackgroundFamilial Impact and Coping with Child Heart Disease: A Systematic Review
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“Longitudinal studies have shown that outcome variables, in particular parent distress and coping strategies, change over the course of the illness [3,24,64,65], and indeed that gender differences may vary according to time since diagnosis [24,33,42].”
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Coping in long‐term survivors of childhood cancer: relations to psychological distress
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Cancer-Related Parental Beliefs: The Family Illness Beliefs Inventory (FIBI)
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BackgroundKupst, M. J., Penati, B., Debban, B., Camitta, B. M., Pietryga, D. W., Margolis, D. M., Murray, K., & Casper, J. T. (2002) · Bone Marrow Transplantation · doi:10.1038/sj.bmt.1703683 · Cited by 73 · see citing works
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“Although studies indicate that parents of children with cancer are at increased risk for developing stressrelated symptoms upon diagnosis and shortly thereafter, a majority of studies investigating long-term adjustment suggest that these symptoms naturally decline over time and that most parents return to normal funct…”
BackgroundReview of Family-Based Psychosocial Interventions for Childhood Cancer
Meyler, E., Guerin, S., Kiernan, G., Postgrad Dip Counselling and Psychotherapy, P., & Breatnach, F. (2010) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsq032 · Cited by 68 · see citing works
“Numerous studies have highlighted the family-level impact of the illness, documenting individual psychosocial effects for all family members (Chia-Chen, Chen, Wang, Wu, & Yeh, 2003; Kupst et al. 1995).”
BackgroundQuality of life issues and cancer survivorship
Zebrack, B., & Zeltzer, L. K. (2003) · Current Problems in Cancer · doi:10.1016/s0147-0272(03)00027-8 · Cited by 68 · see citing works
“In addition, reports indicate that survivors diagnosed at an older age (Kupst et al., 1995) or who are older at the time of inquiry (Barakat et al.”
BackgroundEmotional Burden and Coping Strategies of Parents of Children with Rare Diseases
Picci, R., Oliva, F., Trivelli, F., Carezana, C., Zuffranieri, M., Ostacoli, L., Furlan, P., & Lala, R. (2013) · Journal of Child and Family Studies · doi:10.1007/s10826-013-9864-5 · Cited by 66 · see citing works
“Conversely, a few studies suggested that the emotional consequences decline over time (Fife, Norton, & Groom, 1987; Kupst et al., 1995) As regards gender differences in parental coping, it has been reported that mothers of CCD more commonly cope using emotion-focused strategies, such as seeking of…”
Commentary: The Psychological Impact of Pediatric Cancer Hardiness, the Exception or the Rule?
Noll, R. B., & Kupst, M. J. (2007) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsm049 · Cited by 62 · see citing works
“…in our longitudinal follow-up studies of these children and families (Bingen et al., 2004; Gartstein, Vannatta, & Noll, 2000; Kupst & Schulman, 1988; Kupst et al., 1995, 2002; Reiter-Purtill, 2004; Reiter-Purtill, Gerhardt, Vannatta, Passo, & Noll, 2003a; Verrill, Schafer, Vannatta, & Noll, 2000).”
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The Long-Term Psychosocial Effects of Cancer Diagnosis and Treatment on Children and Their Families
Quin, S. (2005) · Social Work in Health Care · doi:10.1300/j010v39n01_09 · Cited by 59 · see citing works
“A study by Kupst et al. (1995) found that the most significant predictor of the child’s coping and adjustment was the coping ability of its mother.”
BackgroundResultCoping among children and adolescents with chronic illness
Hampel, P., Rudolph, H., Stachow, R., Laß-Lentzsch, A., & Petermann, F. (2005) · Anxiety Stress & Coping · doi:10.1080/10615800500134639 · Cited by 58 · see citing works
“…diagnosis of maladaptive coping styles ensures the identification of risk populations for psychological maladjustment and therefore provides them with an early prevention program (cf. Bull & Drotar, 1991; Kupst et al., 1995; McQuaid & Nassau, 1999; Sanger et al., 1991; Spirito et al., 1995).”
BackgroundMullins, L. L., Molzon, E. S., Suorsa, K. I., Tackett, A. P., Pai, A. L. H., & Chaney, J. M. (2015) · Family Relations · doi:10.1111/fare.12104 · Cited by 56 · see citing works
“Importantly, many of these children demonstrate resiliency, effectively negotiating the challenges and emotions related to their disease (e.g., Kazak, Christakis, Alderfer, & Coiro, 1994; Kupst et al., 1995; Mackie, Hill, Kondryn, & McNally, 2000; Patenaude & Kupst, 2005).”
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“…Learnin g problems associated with Meadows (1989) lymphoma adaptability, maternal distress, lower family cohesion, parental distress lower adaptability Kupst et al. (1995) Leukemia 14–30 years 10 years Academic problems Coping, stress, Family coping related to positive survivor (at 10-year f/u)…”
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“Such mechanisms can only be identified prospectively utilizing longitudinal research designs (Kupst et al., 1995).”
BackgroundFamilies of infants and young children with cancer: A post-traumatic stress framework
Kazak, A. E., & Baxt, C. (2007) · Pediatric Blood & Cancer · doi:10.1002/pbc.21345 · Cited by 54 · see citing works
Barakat, L. P., Kazak, A. E., Gallagher, P. R., Meeske, K., & Stuber, M. L. (2000) · Journal of Clinical Psychology in Medical Settings · doi:10.1023/a:1009516928956 · Cited by 53 · see citing works
“Prospective studies in childhood cancer are few but consistently suggest the following links: (1) between parent distress at different points in treatment (Sloper, 2000); (2) between distress during the active treatment phase and posttraumatic stress and anxiety in the survivor phase in parents in particular (Kazak &…”
BackgroundImpact of Social Support on Bereaved Siblings’ Anxiety
Eilertsen, M. B., Eilegård, A., Steineck, G., Nyberg, T., & Kreicbergs, U. C. (2013) · Journal of Pediatric Oncology Nursing · doi:10.1177/1043454213513838 · Cited by 52 · see citing works
“The presence of social support, both perceived and actual, may determine how well a family copes and how they assess their psychological health (Kupst & Schulman, 1988; Kupst et al., 1995; Magni, 1986).”
BackgroundHocking, M. C., Kazak, A. E., Schneider, S. J., Barkman, D., Barakat, L. P., & Deatrick, J. A. (2013) · Supportive Care in Cancer · doi:10.1007/s00520-013-2083-1 · Cited by 51 · see citing works
“Family and parental adjustment in the period immediately after diagnosis is predictive of later survivor and family adaptation [20, 21], and family-based interventions have the potential to alleviate distress among family members [22].”
Multiattribute approach to the assessment of health-related quality of life: Health utilities index
Feeny, D., Furlong, W. J., & Barr, R. D. (1998) · Medical and Pediatric Oncology · doi:10.1002/(sici)1096-911x(1998)30:1+ · Cited by 83 · see citing works
Cultural Beliefs and Coping Strategies Related to Childhood Cancer
Banerjee, A., Watt, L., Gulati, S., et al. (2011) · Journal of Pediatric Oncology Nursing · doi:10.1177/1043454211408106 · Cited by 50 · see citing works
“Studies that focus on how parents cope report that most parents of children with cancer cope adequately, even improving their adjustment to the cancer diagnosis in the long term (Hoekstra-Weebers, Jaspers, Kamps, & Klip, 1998; Kazak, 1997; Kupst et al., 1995; Larson, Wittrock, & Sandgren, 1994; Majidi-Ahi, 1996).”
BackgroundRomantic relationships of emerging adult survivors of childhood cancer
Thompson, A. L., Marsland, A. L., Marshal, M. P., & Tersak, J. M. (2008) · Psycho-Oncology · doi:10.1002/pon.1471 · Cited by 50 · see citing works
Grinyer, A. (2009) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2009.04.002 · Cited by 49 · see citing works
Hoekstra‐Weebers, J. E. H. M., Jaspers, J., Kamps, W. A., & Klip, E. C. (1998) · Journal of Marriage and the Family · doi:10.2307/353642 · Cited by 48 · see citing works
“Six and 10 years after diagnosis, parents were reported to cope well (Kupst et al., 1995).”
BackgroundHoekstra‐Weebers, J. E. H. M., Wijnberg-Williams, B. J., Jaspers, J., Kamps, W. A., & van de Wiel, H. B. M. (2011) · Psycho-Oncology · doi:10.1002/pon.1987 · Cited by 45 · see citing works
“A few studies found no relationship between different coping strategies and psychological adjustment [6,16].”
BackgroundKoopman, H. M., Koetsier, J. A., Taminiau, A. H. M., Hijnen, K. E., Bresters, D., & Egeler, R. M. (2005) · Pediatric Blood & Cancer · doi:10.1002/pbc.20408 · Cited by 46 · see citing works
“Most long-term studies indicate low prevalence of behavioral and social problems [3,9,13–15].”
BackgroundGrootenhuis, M. A., & Last, B. F. (1997) · Journal of Psychosocial Oncology · doi:10.1300/j077v15n01_04 · Cited by 46 · see citing works
Eilertsen, M. B., Lövgren, M., Eilegård, A., & Kreicbergs, U. C. (2017) · Palliative & Supportive Care · doi:10.1017/s1478951517000529 · Cited by 45 · see citing works
“The presence of social support—perceived and actual—may determine how well a sibling and other family members cope (Kupst et al., 1995), possibly also influencing their stamina and endurance, as well as decreasing their experience of loneliness and vulnerability during the grieving process.”
BackgroundGage‐Bouchard, E. A., Devine, K. A., & Heckler, C. E. (2013) · Journal of Clinical Psychology in Medical Settings · doi:10.1007/s10880-013-9362-3 · Cited by 44 · see citing works
“Further, in that same study, only SES was related to good (vs. poor) family coping at 10 years post treatment, suggesting that SES is an important factor in long-term family adjustment (Kupst et al., 1995).”
BackgroundInfluentialA Mixed Methods Assessment of Coping with Pediatric Cancer
Hildenbrand, A. K., Alderfer, M. A., Deatrick, J. A., & Marsac, M. L. (2013) · Journal of Psychosocial Oncology · doi:10.1080/07347332.2013.855960 · Cited by 45 · see citing works
“For example, seeking and maintaining social support during treatment (an approach strategy) is positively related to emotional adjustment for pediatric cancer survivors (Kupst et al., 1995; Kyngas et al., 2001).”
BackgroundFactors Influencing Depressive Symptoms of Children Treated for a Brain Tumor
Barrera, M. E., Schulte, F., & Spiegler, B. J. (2007) · Journal of Psychosocial Oncology · doi:10.1300/j077v26n01_01 · Cited by 45 · see citing works
Barrera, M. E., Hancock, K., Rokeach, A., Cataudella, D., Atenafu, E. G., Johnston, D. L., Punnett, A., Nathan, P. C., Bartels, U. K., da Silva, M. F., et al. (2013) · Pediatric Blood & Cancer · doi:10.1002/pbc.24774 · Cited by 44 · see citing works
“Although over time the majority of families seem to adjust well [9,10], a significant number continue to experience long-term psychosocial difficulties [1,7,11,12].”
BackgroundWhat About School? Educational Challenges for Children and Adolescents With Cancer
Donnan, B., Webster, T., Wakefield, C. E., Dalla‐Pozza, L., Alvaro, F., Lavoipierre, J., & Marshall, G. M. (2015) · The Educational and Developmental Psychologist · doi:10.1017/edp.2015.9 · Cited by 45 · see citing works
Longitudinal research in pediatric psychology: an introduction to the special issue.
Holmbeck, G., Bruno, E. F., & Jandasek, B. N. (2006) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsj070 · Cited by 47 · see citing works
“Several longitudinal studies have focused on longterm adjustment and developmental outcomes in pediatric populations, including cancer, spina bifida, traumatic brain injury (TBI), and juvenile rheumatoid arthritis (e.g., Friedman, Holmbeck, Jandasek, Zukerman, & Abad, 2004; Kupst et al., 1995; Reiter-Purtill, Gerhardt…”
BackgroundInfluentialBarrera, M. E., Hancock, K., Rokeach, A., Atenafu, E. G., Cataudella, D., Punnett, A., Johnston, D. L., Cassidy, M., Zelcer, S. M., da Silva, M. E. P., et al. (2013) · Psycho-Oncology · doi:10.1002/pon.3386 · Cited by 42 · see citing works
“Supporting this explanation and consistent with previous studies [9,11], child’s QOL outcomes in all but two QOL dimensions and parental anxiety showed improvement by T2 in both groups.”
BackgroundResultImpact of Growing Up with a Chronically Ill Sibling on Well Siblings' Late Adolescent Functioning
Fleary, S. A., & Heffer, R. W. (2013) · ISRN Family Medicine · doi:10.5402/2013/737356 · Cited by 42 · see citing works
Tackett, A. P., Cushing, C. C., Suorsa, K. I., Mullins, A. J., Gamwell, K. L., Mayes, S., McNall‐Knapp, R. Y., Chaney, J. M., & Mullins, L. L. (2015) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsv093 · Cited by 42 · see citing works
The Role of Social Support in Families Coping with Childhood Brain Tumor
Jackson, A. C., Enderby, K., O’Toole, M., Thomas, S. A., Ashley, D. M., Rosenfeld, J. V., Simos, E., Tokatlian, N., & Gedye, R. (2009) · Journal of Psychosocial Oncology · doi:10.1080/07347330802614634 · Cited by 39 · see citing works
“Certain demographic variables such as low socioeconomic status (Kupst et al., 1995; Mulhern, Fairclough, Smith, & Douglas, 1992; Speechley & Noh, 1992), age of parents (Mulhern et al., 1992), and marital status (Mulhern et al., 1992; Speechley & Noh, 1992) appear to affect the adjustment of parents…”
BackgroundKirch, R., Reaman, G. H., Feudtner, C., Wiener, L. S., Schwartz, L. A., Sung, L., & Wolfe, J. (2016) · CA A Cancer Journal for Clinicians · doi:10.3322/caac.21347 · Cited by 38 · see citing works
Psychosocial health in children and adolescents surviving cancer
Eilertsen, M. B., Rannestad, T., Indredavik, M. S., & Vik, T. (2011) · Scandinavian Journal of Caring Sciences · doi:10.1111/j.1471-6712.2011.00883.x · Cited by 37 · see citing works
Wakefield, C. E., Sansom-Daly, U. M., McGill, B. C., McCarthy, M., Girgis, A., Grootenhuis, M., Barton, B., Patterson, P., Osborn, M., Lowe, C., et al. (2015) · Trials · doi:10.1186/s13063-015-0681-6 · Cited by 35 · see citing works
“The impact of poor parent coping may extend for years, with evidence that even 10 to 15 years post-diagnosis, coping in child cancer survivors may still be related to their mother’s coping [23].”
BackgroundWu, L. M., Bonanno, G. A., DuHamel, K. N., Redd, W. H., Rini, C. K., Austin, J., Nereo, N. E., Ostroff, J. S., Parsons, S. K., Martini, R., et al. (2007) · British Journal of Health Psychology · doi:10.1348/135910707x204236 · Cited by 34 · see citing works
Aylward, B. S., Roberts, M. C., Colombo, J. A., & Steele, R. G. (2007) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsm122 · Cited by 33 · see citing works
“Kupst et al. (1995) 62 0.”
InfluentialFATHERS' PERSPECTIVES ON THE TREATMENT FOR PEDIATRIC HEMATOLOGY: EXTENDING THE FINDINGS
McGrath, P. D., & Chesler, M. A. (2004) · Issues in Comprehensive Pediatric Nursing · doi:10.1080/01460860490279545 · Cited by 33 · see citing works
“Prior research suggested that fathers experience lower levels of anxiety and psychological distress than mothers do initially, but that this difference equals out over time (Dahlquist et al., 1996; Drotar et al., 1984; Kupst et al., 1995; Larson et al., 1994).”
BackgroundPsychological Research in Childhood Cancer: The Children’s Oncology Group Perspective
Armstrong, F. D., & Reaman, G. H. (2004) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsi020 · Cited by 34 · see citing works
“Longitudinal studies of coping in children with ALL (Kupst et al., 1995) and sociometric approaches to assessment of”
BackgroundInfluentialPsychological Sequelae in Parents of Extreme Low and Very Low Birth Weight Infants
Elklit, A., Hartvig, T., & Christiansen, M. (2007) · Journal of Clinical Psychology in Medical Settings · doi:10.1007/s10880-007-9077-4 · Cited by 31 · see citing works
- Authors
- Kupst, M. J., Natta, M. B., Richardson, C. C., Schulman, J. L., Lavigne, J. V., & Das, L.
- Affiliations
- Medical College of Wisconsin (US)
- Loyola University Chicago (US)
- Northwestern University (US)
- Corresponding author
- Kupst, Mary Jo
- ORCID
- Lavigne, John V.
- Venue
- Journal of Pediatric Psychology
- Publisher
- Oxford University Press (OUP)
- Published
- 1995
- Volume
- 20
- Issue
- 5
- Pages
- 601-617
- ISSN
- 0146-8693 (ISSN-L)
- 1465-735X
- OpenAlex
- W2172212536
- Cited by
- 200
- References
- 0
- Citations by year
- 2025: 1 · 2024: 1 · 2023: 2 · 2022: 3 · 2021: 4 · 2020: 2 · 2019: 4 · 2018: 2 · 2017: 7 · 2016: 3 · 2015: 10 · 2014: 5 · 2013: 12 · 2012: 10
- FWCI
- 5.90
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Pediatric Psychology (publishedVersion)
- PubMed (publishedVersion)
- HighWire Press Open Archive (submittedVersion)
- Funders
- National Cancer Institute (CA19344)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- pediatric leukemia, long-term survivors, family coping, parental coping, child adjustment, coping strategies, socioeconomic status, academic difficulties, childhood cancer survivors
- MeSH terms
- Adaptation, Psychological, Adolescent, Adult, Child, Female, Follow-Up Studies, Humans, Leukemia, Male, Parent-Child Relations, Parents, Personality Assessment, Personality Development, Risk Factors, Sick Role
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