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“I know it when I see it.” The complexities of measuring resilience among parents of children with cancer

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Abstract

Purpose

Promoting parent resilience may provide an opportunity to improve family-level survivorship after pediatric cancer; however, measuring resilience is challenging.

Methods

The “Understanding Resilience in Parents of Children with Cancer” was a cross-sectional, mixed-methods study of bereaved and non-bereaved parents. Surveys included the Connor–Davidson Resilience scale, the Kessler-6 psychological distress scale, the Post-Traumatic Growth Inventory, and an open-ended question regarding the ongoing impact of cancer. We conducted content analyses of open-ended responses and categorized our impressions as “resilient,” “not resilient,” or “unable to determine.” “Resilience” was determined based on evidence of psychological growth, lack of distress, and parent-reported meaning/purpose. We compared consensus impressions with instrument scores to examine alignment. Analyses were stratified by bereavement status.

Results

Eighty-four (88 %) non-bereaved and 21 (88 %) bereaved parents provided written responses. Among non-bereaved, 53 (63 %) were considered resilient and 15 (18 %) were not. Among bereaved, 11 (52 %) were deemed resilient and 5 (24 %) were not. All others suggested a mixed or incomplete picture. Rater-determined “resilient” parents tended to have higher personal resources and lower psychological distress (p = <0.001–0.01). Non-bereaved “resilient” parents also had higher post-traumatic growth (p = 0.02). Person-level analyses demonstrated that only 50–62 % of parents had all three instrument scores aligned with our impressions of resilience.

Conclusions

Despite multiple theories, measuring resilience is challenging. Our clinical impressions of resilience were aligned in 100 % of cases; however, instruments measuring potential markers of resilience were aligned in approximately half. Promoting resilience therefore requires understanding of multiple factors, including person-level perspectives, individual resources, processes of adaptation, and emotional well-being.

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References

  1. Barakat LP, Alderfer MA, Kazak AE (2006) Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. J Pediatr Psychol 31:413–419

    Article  PubMed  Google Scholar 

  2. Bonanno GA (2004) Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events? Am Psychol 59:20–28

    Article  PubMed  Google Scholar 

  3. Bonanno GA, Westphal M, Mancini AD (2011) Resilience to loss and potential trauma. Annu Rev Clin Psychol 7:511–535

    Article  PubMed  Google Scholar 

  4. Campbell-Sills L, Stein MB (2007) Psychometric analysis and refinement of the Connor–Davidson Resilience Scale (CD-RISC): validation of a 10-item measure of resilience. J Trauma Stress 20:1019–1028

    Article  PubMed  Google Scholar 

  5. Campbell-Sills L, Cohan SL, Stein MB (2006) Relationship of resilience to personality, coping, and psychiatric symptoms in young adults. Behav Res Ther 44:585–599

    Article  PubMed  Google Scholar 

  6. Carlson LE, Waller A, Mitchell AJ (2012) Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol 30:1160–1177

    Article  PubMed  Google Scholar 

  7. Carr AJ, Higginson IJ (2001) Are quality of life measures patient centred? BMJ 322:1357–1360

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  8. Carr AJ, Gibson B, Robinson PG (2001) Measuring quality of life: is quality of life determined by expectations or experience? BMJ 322:1240–1243

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  9. Connor KM, Davidson JR (2003) Development of a new resilience scale: the Connor–Davidson Resilience Scale (CD-RISC). Depress Anxiety 18:76–82

    Article  PubMed  Google Scholar 

  10. Haase JE (2004) The adolescent resilience model as a guide to interventions. J Pediatr Oncol Nurs 21:289–299, discussion 300-284

    Article  PubMed  Google Scholar 

  11. Hsieh HF, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Health Res 15:1277–1288

    Article  PubMed  Google Scholar 

  12. Institute of Medicine (2007) Cancer care for the whole patient: meeting psychosocial health needs. National Academies, Washington, DC

    Google Scholar 

  13. Jacobsen PB, Wagner LI (2012) A new quality standard: the integration of psychosocial care into routine cancer care. J Clin Oncol 30:1154–1159

    Article  PubMed  Google Scholar 

  14. Jacobsen PB, Holland JC, Steensma DP (2012) Caring for the whole patient: the science of psychosocial care. J Clin Oncol 30:1151–1153

    Article  PubMed  Google Scholar 

  15. Jones BL (2012) The challenge of quality care for family caregivers in pediatric cancer care. Semin Oncol Nurs 28:213–220

    Article  PubMed  Google Scholar 

  16. Kessler RC, Andrews G, Colpe LJ, Hiripi E, Mroczek DK, Normand SL, Walters EE, Zaslavsky AM (2002) Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychol Med 32:959–976

    Article  CAS  PubMed  Google Scholar 

  17. Kessler RC, Barker PR, Colpe LJ, Epstein JF, Gfroerer JC, Hiripi E, Howes MJ, Normand SL, Manderscheid RW, Walters EE, Zaslavsky AM (2003) Screening for serious mental illness in the general population. Arch Gen Psychiatry 60:184–189

    Article  PubMed  Google Scholar 

  18. Kessler RC, Green JG, Gruber MJ, Sampson NA, Bromet E, Cuitan M, Furukawa TA, Gureje O, Hinkov H, Hu CY, Lara C, Lee S, Mneimneh Z, Myer L, Oakley-Browne M, Posada-Villa J, Sagar R, Viana MC, Zaslavsky AM (2010) Screening for serious mental illness in the general population with the K6 screening scale: results from the WHO World Mental Health (WMH) survey initiative. Int J Methods Psychiatr Res 19(Suppl 1):4–22

    Article  PubMed Central  PubMed  Google Scholar 

  19. Luthar SS, Cicchetti D, Becker B (2000) The construct of resilience: a critical evaluation and guidelines for future work. Child Dev 71:543–562

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  20. Mancini AD, Bonanno GA (2009) Predictors and parameters of resilience to loss: toward an individual differences model. J Pers 77:1805–1832

    Article  PubMed  Google Scholar 

  21. Masten AS (2001) Ordinary magic. Resilience processes in development. Am Psychol 56:227–238

    Article  CAS  PubMed  Google Scholar 

  22. Middleton W, Raphael B, Burnett P, Martinek N (1998) A longitudinal study comparing bereavement phenomena in recently bereaved spouses, adult children and parents. Aust N Z J Psychiatry 32:235–241

    Article  CAS  PubMed  Google Scholar 

  23. Molina Y, Yi JC, Martinez-Gutierrez J, Reding KW, Yi-Frazier JP, Rosenberg AR (2014) Resilience among patients across the cancer continuum: diverse perspectives. Clin J Oncol Nurs 18:93–101

    Article  PubMed Central  PubMed  Google Scholar 

  24. Patterson JM (2002) Integrating family resilience and family stress theory. J Marriage Fam 64:349–360

    Article  Google Scholar 

  25. Patterson JM, Holm KE, Gurney JG (2004) The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors. Psychooncology 13:390–407

    Article  PubMed  Google Scholar 

  26. Robinson KE, Gerhardt CA, Vannatta K, Noll RB (2007) Parent and family factors associated with child adjustment to pediatric cancer. J Pediatr Psychol 32:400–410

    Article  PubMed  Google Scholar 

  27. Rosenberg AR, Baker KS, Syrjala KL, Back AL, Wolfe J (2013) Promoting resilience among parents and caregivers of children with cancer. J Palliat Med 16:645–652

    Article  PubMed Central  PubMed  Google Scholar 

  28. Rosenberg AR, Wolfe J, Bradford MC, Shaffer ML, Yi-Frazier JP, Curtis JR, Syrjala KL, Baker KS (2014) Resilience and psychosocial outcomes in parents of children with cancer. Pediatr Blood Cancer

  29. Rutter M (2006) Implications of resilience concepts for scientific understanding. Ann N Y Acad Sci 1094:1–12

    Article  PubMed  Google Scholar 

  30. Scali J, Gandubert C, Ritchie K, Soulier M, Ancelin ML, Chaudieu I (2012) Measuring resilience in adult women using the 10-items Connor-Davidson Resilience Scale (CD-RISC). Role of trauma exposure and anxiety disorders. PLoS One 7:e39879

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  31. Steinhardt M, Dolbier C (2008) Evaluation of a resilience intervention to enhance coping strategies and protective factors and decrease symptomatology. J Am Coll Health 56:445–453

    Article  PubMed  Google Scholar 

  32. Tedeschi RG, Calhoun LG (1996) The Posttraumatic Growth Inventory: measuring the positive legacy of trauma. J Trauma Stress 9:455–471

    Article  CAS  PubMed  Google Scholar 

  33. Woodgate RL (1999) Conceptual understanding of resilience in the adolescent with cancer: part I. J Pediatr Oncol Nurs 16:35–43

    CAS  PubMed  Google Scholar 

  34. Yi-Frazier JP, Smith RE, Vitaliano PP, Yi JC, Mai S, Hillman M, Weinger K (2010) A person-focused analysis of resilience resources and coping in diabetes patients stress. Health 26:51–60

    Google Scholar 

  35. Yi-Frazier JP, Yaptangco M, Semana S, Buscaino E, Thompson V, Cochrane K, Tabile M, Alving E, Rosenberg AR (2013) The association of personal resilience with stress, coping, and diabetes outcomes in adolescents with type 1 diabetes: variable- and person-focused approaches. J Health Psychol doi:10.1177/1359105313509846

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Acknowledgments

We would like to thank Barbara Stansfeld for her assistance in the coordination of this study. We are grateful to the parents and caregivers who participated and offered their thoughtful consideration to this work. ARR is a St. Baldrick’s Foundation Fellow and was supported by the Ruth L. Kirschstein National Research Service Award T32CA009351 and the Conquer Cancer Foundation of ASCO Jane C. Wright Young Investigator Award, supported by the ASCO and the Conquer Cancer Foundation Board of Directors. Any opinions, findings, and conclusions expressed in this material are those of the authors and do not necessarily reflect those of the American Society of Clinical Oncology, the Conquer Cancer Foundation, or the ASCO and the Conquer Cancer Foundation Board of Directors.

Conflict of interest

None of the authors has a financial or other conflict of interest to disclose. We have had full control of all data related to this study and have agreed to allow The Journal of Supportive Care in Cancer to review the data if requested.

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Authors and Affiliations

  1. Cancer and Blood Disorders Center, Seattle Children’s Hospital, 4800 Sand Point Way NE, M.S. M.B.8.501, PO Box B-6553, Seattle, WA, 98105, USA

    Abby R. Rosenberg

  2. Fred Hutchinson Cancer Research Center, Seattle, WA, USA

    Abby R. Rosenberg

  3. Treuman Katz Center for Pediatric Bioethics, Seattle, WA, USA

    Abby R. Rosenberg & Helene Starks

  4. University of Washington, Seattle, WA, USA

    Abby R. Rosenberg & Helene Starks

  5. The Institute for Grief, Loss, and Family Survival, Austin, TX, USA

    Barbara Jones

  6. The University of Texas at Austin, Austin, TX, USA

    Barbara Jones

Authors
  1. Abby R. Rosenberg
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  2. Helene Starks
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  3. Barbara Jones
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Correspondence to Abby R. Rosenberg.

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Rosenberg, A.R., Starks, H. & Jones, B. “I know it when I see it.” The complexities of measuring resilience among parents of children with cancer. Support Care Cancer 22, 2661–2668 (2014). https://doi.org/10.1007/s00520-014-2249-5

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  • DOI: https://doi.org/10.1007/s00520-014-2249-5

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