Literature DB >> 24756554

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

Abby R Rosenberg1, Helene Starks, Barbara Jones.   

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.

Entities:  

Mesh:

Year:  2014        PMID: 24756554      PMCID: PMC4264630          DOI: 10.1007/s00520-014-2249-5

Source DB:  PubMed          Journal:  Support Care Cancer        ISSN: 0941-4355            Impact factor:   3.603


  33 in total

1.  Measuring quality of life: Is quality of life determined by expectations or experience?

Authors:  A J Carr; B Gibson; P G Robinson
Journal:  BMJ       Date:  2001-05-19

Review 2.  The adolescent resilience model as a guide to interventions.

Authors:  Joan E Haase
Journal:  J Pediatr Oncol Nurs       Date:  2004 Sep-Oct       Impact factor: 1.636

3.  Three approaches to qualitative content analysis.

Authors:  Hsiu-Fang Hsieh; Sarah E Shannon
Journal:  Qual Health Res       Date:  2005-11

Review 4.  Implications of resilience concepts for scientific understanding.

Authors:  Michael Rutter
Journal:  Ann N Y Acad Sci       Date:  2006-12       Impact factor: 5.691

5.  Resilience and psychosocial outcomes in parents of children with cancer.

Authors:  Abby R Rosenberg; Joanne Wolfe; Miranda C Bradford; Michele L Shaffer; Joyce P Yi-Frazier; J Randall Curtis; Karen L Syrjala; K Scott Baker
Journal:  Pediatr Blood Cancer       Date:  2013-11-19       Impact factor: 3.167

6.  Screening for serious mental illness in the general population with the K6 screening scale: results from the WHO World Mental Health (WMH) survey initiative.

Authors:  Ronald C Kessler; Jennifer Greif Green; Michael J Gruber; Nancy A Sampson; Evelyn Bromet; Marius Cuitan; Toshi A Furukawa; Oye Gureje; Hristo Hinkov; Chi-Yi Hu; Carmen Lara; Sing Lee; Zeina Mneimneh; Landon Myer; Mark Oakley-Browne; Jose Posada-Villa; Rajesh Sagar; Maria Carmen Viana; Alan M Zaslavsky
Journal:  Int J Methods Psychiatr Res       Date:  2010-06       Impact factor: 4.035

Review 7.  A new quality standard: the integration of psychosocial care into routine cancer care.

Authors:  Paul B Jacobsen; Lynne I Wagner
Journal:  J Clin Oncol       Date:  2012-03-12       Impact factor: 44.544

8.  The Posttraumatic Growth Inventory: measuring the positive legacy of trauma.

Authors:  R G Tedeschi; L G Calhoun
Journal:  J Trauma Stress       Date:  1996-07

Review 9.  The challenge of quality care for family caregivers in pediatric cancer care.

Authors:  Barbara L Jones
Journal:  Semin Oncol Nurs       Date:  2012-11       Impact factor: 2.315

10.  Resilience among patients across the cancer continuum: diverse perspectives.

Authors:  Yamile Molina; Jean C Yi; Javiera Martinez-Gutierrez; Kerryn W Reding; Joyce P Yi-Frazier; Abby R Rosenberg
Journal:  Clin J Oncol Nurs       Date:  2014-02       Impact factor: 1.027

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  6 in total

Review 1.  The central role of meaning in adjustment to the loss of a child to cancer: implications for the development of meaning-centered grief therapy.

Authors:  Wendy G Lichtenthal; William Breitbart
Journal:  Curr Opin Support Palliat Care       Date:  2015-03       Impact factor: 2.302

2.  Commentary: Resilience Defined: An Alternative Perspective.

Authors:  Abby R Rosenberg; Joyce P Yi-Frazier
Journal:  J Pediatr Psychol       Date:  2016-03-24

3.  Parent Perceptions of Team-Delivered Care for Children With Advanced Cancer: A Report From the PediQUEST Study.

Authors:  Angela M Feraco; Prasanna Ananth; Veronica Dussel; Hasan Al-Sayegh; Clement Ma; Abby R Rosenberg; Chris Feudtner; Joanne Wolfe
Journal:  J Pain Symptom Manage       Date:  2020-05-22       Impact factor: 3.612

4.  Contributors and Inhibitors of Resilience Among Adolescents and Young Adults with Cancer.

Authors:  Abby R Rosenberg; Joyce P Yi-Frazier; Claire Wharton; Karen Gordon; Barbara Jones
Journal:  J Adolesc Young Adult Oncol       Date:  2014-12-01       Impact factor: 2.223

5.  The Lived Experience of Resilience in Parents of Children With Cancer: A Phenomenological Study.

Authors:  Yuanhui Luo; Ho Cheung William Li; Wei Xia; Ankie Tan Cheung; Laurie Long Kwan Ho; Joyce Oi Kwan Chung
Journal:  Front Pediatr       Date:  2022-05-30       Impact factor: 3.569

6.  Resilience, health, and quality of life among long-term survivors of hematopoietic cell transplantation.

Authors:  Abby R Rosenberg; Karen L Syrjala; Paul J Martin; Mary E Flowers; Paul A Carpenter; Rachel B Salit; K Scott Baker; Stephanie J Lee
Journal:  Cancer       Date:  2015-08-19       Impact factor: 6.860

  6 in total

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