Coping strategies used by caregivers of children with newly diagnosed brain tumors

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OBJECTIVE

The goal of this study was to determine what strategies caregivers use to cope with the stress of a child who has recently undergone surgical treatment for a newly diagnosed brain tumor. Results will be used to improve psychosocial assessments and treatments provided to these families during initial hospitalization.

METHODS

Caregivers of children with newly diagnosed brain tumors admitted to Children’s of Alabama were enrolled during the child’s initial hospitalization for surgical treatment from April 2016 to August 2017. The single-item, National Comprehensive Cancer Network visual analog Distress Thermometer (DT) was administered. Clinical and demographic variables were collected from the medical record. Approximately 1 month after patients were discharged from the hospital, caregivers participated in a semistructured interview that included questions about parent and family coping strategies. Broad questions about stress management since diagnosis were followed by specific questions about individual coping strategies. Interviews were recorded, transcribed, and coded for common themes. Themes were broadly characterized as adaptive versus maladaptive coping. Analysis was then performed to determine if DT scores or clinical or demographic factors were associated with the presence of maladaptive coping using a concurrent triangulation mixed-methods design.

RESULTS

Caregivers identified several adaptive coping strategies, such as active coping, acceptance coping, emotion-focused coping, spiritual coping, social support, and posttraumatic growth. Maladaptive coping strategies were mostly categorized as avoidant coping. Caregivers endorsed multiple different coping strategies (mean of 4.59 strategies per caregiver). No clinical or demographic variables, whether the tumor was benign or malignant, or the DT score correlated with caregiver endorsement of maladaptive coping strategies.

CONCLUSIONS

Caregivers of children newly diagnosed with brain tumors employ a number of coping strategies, some of which are maladaptive. The authors have not identified any method for predicting who is at risk for maladaptive coping. Assessment of coping skills and education about coping have the potential to improve overall care delivery to these families.

ABBREVIATIONS DT = Distress Thermometer.

Article Information

Correspondence Brandon G. Rocque: University of Alabama at Birmingham, AL. brandon.rocque@childrensal.org.

INCLUDE WHEN CITING Published online October 12, 2018; DOI: 10.3171/2018.7.PEDS18296.

Disclosures The authors report no conflict of interest concerning the materials or methods used in this study or the findings specified in this paper.

© AANS, except where prohibited by US copyright law.

Headings

References

1

Barraza M: The right thing. Narrat Inq Bioeth 4:39422014

2

Bennett EEnglish MWRennoldson MStarza-Smith A: Predicting parenting stress in caregivers of children with brain tumours. Psychooncology 22:6296362013

3

Bowen GA: Naturalistic inquiry and the saturation concept: a research note. Qual Res 8: 1371522008

4

Carver CSScheier MFWeintraub JK: Assessing coping strategies: a theoretically based approach. J Pers Soc Psychol 56:2672831989

5

Compas BEJaser SSDunn MJRodriguez EM: Coping with chronic illness in childhood and adolescence. Annu Rev Clin Psychol 8:4554802012

6

Creswell JWClark VGutmann MHanson W: Advanced mixed methods research designs in Tashakkori ATeddlie C (eds): Handbook of Mixed Methods in Social & Behavioral Research. Thousand Oaks, CA: Sage2003 pp 209240

7

Deisinger JACassisi JEWhitaker SL: Relationships between coping style and PAI profiles in a community sample. J Clin Psychol 52:3033101996

8

Goebel SMehdorn HM: Measurement of psychological distress in patients with intracranial tumours: the NCCN distress thermometer. J Neurooncol 104:3573642011

9

Goldbeck L: The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Qual Life Res 15:112111312006

10

Greening LStoppelbein L: Brief report: pediatric cancer, parental coping style, and risk for depressive, posttraumatic stress, and anxiety symptoms. J Pediatr Psychol 32:127212772007

11

Guest GBunce AJohnson L: How many interviews are enough? An experiment with data saturation and variability. Field Methods 18: 2016

12

Holahan CJMoos RH: Personal and contextual determinants of coping strategies. J Pers Soc Psychol 52:9469551987

13

Jackson ACEnderby KO’Toole MThomas SAAshley DRosenfeld JV: The role of social support in families coping with childhood brain tumor. J Psychosoc Oncol 27:1242009

14

Litman JA: The COPE inventory: dimensionality and relationships with approach- and avoidance-motives and positive and negative traits. Pers Individ Dif 41:2732842006

15

Moos RHHolahan CJ: Dispositional and contextual perspectives on coping: toward an integrative framework. J Clin Psychol 59:138714032003

16

National Comprehensive Cancer Network: Distress management. Clinical practice guidelines. J Natl Compr Canc Netw 1:3443742003

17

Okado YLong AMPhipps S: Association between parent and child distress and the moderating effects of life events in families with and without a history of pediatric cancer. J Pediatr Psychol 39:104910602014

18

Palmer SLLesh SWallace DBonner MJSwain MChapieski L: How parents cope with their child’s diagnosis and treatment of an embryonal tumor: results of a prospective and longitudinal study. J Neurooncol 105:2532592011

19

Patel SKFernandez NWong ALMullins WTurk ADekel N: Changes in self-reported distress in end-of-life pediatric cancer patients and their parents using the pediatric distress thermometer. Psychooncology 23:5925962014

20

Shortman RIBeringer APenn AMalson HLowis SPSharples PM: The experience of mothers caring for a child with a brain tumour. Child Care Health Dev 39:7437492013

21

Vollrath MAlnaes RTorgersen S: Differential effects of coping in mental disorders: a prospective study in psychiatric outpatients. J Clin Psychol 52:1251351996

22

Woodgate RLTailor KYanofsky RVanan MI: Childhood brain cancer and its psychosocial impact on survivors and their parents: A qualitative thematic synthesis. Eur J Oncol Nurs 20:1401492016

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