Child and parental adaptation to pediatric oncology Vrijmoet-Wiersma, J.

Citation

Vrijmoet-Wiersma, J. (2010, January 14). Child and parental adaptation to pediatric oncology. Retrieved from https://hdl.handle.net/1887/14561

Version: Corrected Publisher’s Version

License: Licence agreement concerning inclusion of doctoral thesis in the Institutional Repository of the University of Leiden Downloaded

from: https://hdl.handle.net/1887/14561

Note: To cite this publication please use the final published version (if applicable).

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Table 1. Summary of the studies included in the review

No Year, Author

Aim N parents

N and age range/

mean age children

Methodological features

Measures Results

1 1990,

Dermatis

Determine the nature and prevalence of the psychological symptomatology in parents of children undergoing SCT.

Investigate relationship of certain psychosocial factors to parental distress associated with the informed consent process.

46 M, 15 F

61 children Range 1-17 yrs

Single-centered Cross-sectional

BSI, WOC, newly constructed scale on the quality of the physician-parent communication

47% of fathers and 60% of mothers exhibited signifi cant psychological distress of a generalized nature. Mothers reported more severe levels of depression and anxiety than fathers did.

2 1997,

Nelson

Examine the stress responses of mothers during their child’s hospitalization for SCT;

Determine the relationships between mothers’ stress responses and the resources for coping and social support.

50 M

50 children Mean age 9.3 yrs

Single-centered Longitudinal, time points: time of admission (T1), second (T2), tenth (T3) and twentieth (T4) day post-SCT

STAI, CES-D, HAS, IES, SSS

Maternal anxiety and depressive scores decreased signifi cantly over time

The coping style defi ned as ‘active reviewing of feelings or information associated with the situation’ signifi cantly explained variance in scores for anxiety, depressive symptomatology, somatic complaints and sleep behavior.

3 2000,

Streisand

Document levels of stress in mothers of children undergoing SCT.

Pilot a psychological intervention program.

11 M

11 children Range 2-16 yrs Mean age 8.8 yrs

Single-centered Longitudinal, time points: pre admission to 3 weeks post-SCT

DSI, PSI, SSINT Most stress was reported pre-admission.

Mothers reported using more stress management techniques post-intervention than mothers in the standard care condition.

The analyses revealed no signifi cant differences in stress between intervention and control mothers.

4 2001,

Manne

Examine anxiety and depressive symptoms among mothers of children undergoing SCT.

115 M

115 children Range 4 months-20 yrs Mean age 9.2 yrs

Multi-centered Cross-sectional:

85% of mothers on day -7 to day -1;

15% of the mothers 10 days post-SCT

BAI, BDI, SCID-NP 20% of mothers were diagnosed with a MDD, a GAD, or a PD. There was evidence of comorbidity between anxiety and depressive disorders.

Mothers with lower incomes, who were Caucasian, had received prior psychiatric care and were caring for female SCT patients may be at higher risk for adverse psychological reactions.

5 2002,

Manne

Investigate the role of cognitive and social processing in post- traumatic stress symptoms and disorder (PTSD) among mothers of children undergoing SCT.

90 M

90 children Range 9 months-20 yrs Mean age 8.8 yrs

Multi-centered Longitudinal, time points: time of SCT, 3 and 6 months past SCT

SCID-NP-PTSD, PCL-C, BAI, BDI, fear network, CSI, LSCM

Emotional distress, SCT-related fears, and negative responses of family and friends assessed at the time of SCT hospitalization were predictive of later PTSD symptoms.

Cognitive processing (the appraisal of threat) at the time of transplantation played the most important role in later PTSD symptoms.

6 2002,

Oppenheim

Understand parents’ perception of children treated in an SCT unit.

40 pairs of parents No details given

Single-centered Cross-sectional

Interviews Parents expressed intense distress and disorientation and sometimes diffi cult relations with their child. Many parents expressed having an ambivalent relation with care providers.

X]VeiZg)

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7 2003a,

Manne

Evaluate the role of maternal coping strategies in depressive symptoms experienced by mothers of children undergoing SCT.

207 M

207 children Mean age 8.3 yrs

Multi-centered Longitudinal, time points: at SCT, 3 and 6 months post-SCT

COPE, BDI, appraisal of fear/

worry medical risk

Acceptance and humor were associated with reductions in maternal depressive symptoms. Planning and alcohol/

substance use were associated with increases in maternal depressive symptoms. Active problem solving and use of instrumental support did not predict changes in depressive symptoms.

8 2003b,

Manne

Examine the role of perceived partner criticism and avoidance in anxiety and depressive symptoms of mothers of children undergoing SCT.

148 M

148 children Range 4 months-17 yrs Mean age 8.5 yrs

Multi-centered Longitudinal, time points: at SCT, 3 and 6 months post-SCT

SCID-NP-PTSD, PCL-C, BAI, BDI, Fear Network, CSI, CSI, LSCM

Fear structure, distress, and unsupportive responses by family and friends measured at transplantation were predictive of PTSD symptom severity at 6 months after SCT.

Perceived partner criticism was associated with higher average depressive symptoms. ICU transfers and number.

of days of hospitalization 6 months post-SCT were risk factors.

9 2003, Nelson Examine the relationships between maternal anxiety and depressive symptoms and resources during their child’s SCT.

23 M

23 children Mean age 8.1 yrs

Single-centered Longitudinal, time points: admission and 10 days post- SCT

STAI, CES-D, SPSI, SSS

The majority of mothers reported moderate to high anxiety levels and were at risk of developing depression.

Most of the mothers indicated low or moderate satisfaction with the perceived social support. A relationship was found between a negative problem solving orientation and emotional responses.

10 2004, DuHamel

Investigate the role of cognitive processing in maternal adjustment to a life-threatening pediatric medial procedure.

91 M

91 children Range 9-19 yrs Mean age 8.7 yrs

Multi-centered Longitudinal, time points: 3 days prior to SCT and 3 months post-SCT

Structured interviews Fear network IES, BAI, BDI

Mothers’ fear network, intrusions and avoidance played a primary role in their adjustment to their child’s transplantation, during and after hospitalization.

The article shows a cognitive processing model of psychological distress.

11 2004, Forinder

To get in-depth knowledge of the parents’ situation during the SCT-process.

20 pairs of parents

20 children, no details given

Single-centered Longitudinal, time points: 4 to 8 yrs post transplant and 4 yrs after fi rst time point

2 semi-structured qualitative interviews Jalowiec Coping Scale

The child’s illness and treatment played an important role in the parents’ lives for many years. Those parents who managed to put reason before emotion rated their coping as better. A sense of participation was also a useful coping strategy.

12 2004, Manne

Examine the prevalence and predictors of anxiety, depression and PTSD among mothers of children who underwent HSCT.

111 M

111 children Range 1-18 Mean age 8.2 yrs

Multi-centered Longitudinal, time points: at time of SCT and 18 months post-SCT

BAI, BDI, TSS, ISSB, WOC, COPE 18 month follow up:

SCID-NP

Approximately 20% of mothers had clinically signifi cant distress reactions. Mothers who were most at risk were younger and reported anxiety and depressive symptoms at the time of transplantation. The prevalence of depressive disorders declined after 18 months.

No Year, Author

Aim N parents

N and age range/

mean age children

Methodological features

Measures Results

13 2004, Phipps

Examine changes in parental distress across the acute phase of SCT.

Examine the relationship of parental distress to child distress during the SCT process.

136 M, 9 F, 6 others

136 children Range 1-20 yrs Mean age 8.9 yrs

Single-centered Longitudinal, 13 time points: weekly from week -1 to week +6, after that on a monthly basis through month +6

POMS, PSS, CBS, BASES-P, BASES-C

Parents demonstrated modest, but signifi cant elevations in distress, particularly during the early period from admission through week +3. Parental distress was unrelated to child age, gender, diagnosis, or type of transplant, but was signifi cantly related to parental SES.

Moderate correlations were observed between measures of parent and child distress.

14 2004a, Rini

Examine the relation between life stress and basic beliefs about self-worth.

100 M

Range 9 months-20 yrs Mean age 8 yrs

Multi-centered Longitudinal, time points: at admission and

1 year post-SCT

WAS, TSS, LES, SF36 Prior trauma and negative events were associated with basic beliefs during hospitalization and with changes in basic beliefs in the subsequent year, with distress mediating some of these relations. Relations were found between basic beliefs and maternal physical and mental functioning.

15 2004b, Rini

Examination of children’s medical risk and mother’s dispositional optimism and socio-demographic resources as predictors of benefi t fi nding at admission (T1) and 6 months later (T2).

144 M

144 children Range 9 months-20 yrs Mean age 8 yrs

Multi-centered Longitudinal, time points: at admission and 6 months after the fi rst time point

LOF, SF-36 (MHSS), 2 newly created items for benefi t fi nding

Predictors of benefi t fi nding differed systematically across assessments, with optimism and medial risk predicting benefi t fi nding at both time points. Socio demographic resources predicted only T2 benefi t fi nding. T1 benefi t fi nding was positively associated with T2 adaptation only for mothers who scored high in optimism.

16 2005, Phipps

Examine psychosocial predictors of distress in parents of children undergoing SCT.

139 M, 9 F, 3 others

151 children Range 1-20 yrs Mean age 8.9 yrs

Single-centered Longitudinal, time points: weekly basis through week +6 post-SCT, monthly until +6

POMS, PSS, CBS, PIES, CBCL, FES, ISSB, WOC

Signifi cant changes were observed in parental distress across the course of SCT, with relatively high levels of parental distress at admission, slightly increasing and peaking at week +2.

Predictors of stress: prior parent and patient illness- related distress, pre-morbid child internalizing behavior problems, the family relationship dimensions of the family environment and parental avoidant coping behaviors.

17 2007, DuHamel

Investigate several potential antecedents of maternal fear appraisals: maternal optimism, recent negative life events, lifetime history of traumatic events, and medical characteristics.

140 M

140 children Range 9 months-19 yrs Mean age 8 yrs

Multi-centered Longitudinal, time points: at admission, 3 and 6 months post-SCT

LOT, LES, TSS, newly created items for fear appraisals

Lower optimism and a greater number of negative life events were independently associated with greater maternal fear appraisals. Lifetime history of trauma was not

associated with maternal fear appraisals. Mothers’ fear appraisals during their child’s hospitalization were associated with their fear appraisals up to 6 months later.

18 2008, Vrijmoet- Wiersma

To assess levels of parenting stress compared to a norm group, to assess differences in parenting stress pre- and post- SCT and to assess the effect of parenting stress on parent- reported HRQoL of the child.

19 M

21 children Range 3-18 yrs Mean age 8 yrs

Single-centered Longitudinal, time points: two weeks before SCT and on average 10 months post-SCT

PSI Compared to parents of healthy children, parenting stress was higher post-SCT. Post-SCT, parenting stress levels were higher than pre-SCT, both total parenting stress and the perceived demandingness of the child.

High levels of parenting stress were predictive of poor parental ratings of child HRQoL post-SCT.

No Year, Author

Aim N parents

N and age range/

mean age children

Methodological features

Measures Results

Explanation of abbreviations used M= mothers; F= fathers; yrs = years

BAI = Beck Anxiety Inventory; BASES-P/C = Behavioral, Affective, and Somatic Experiences Scales – Parent version/Child version; BDI = Beck Depression Inventory; BSI = Brief Symptom Inventory; CBCL = Child Behavior Check List; CBS = Caregiver Burden Scale; CES-D = Center of Epidemiologic Studies Depression Scale; CSI = Cancer Support Inventory; DSI = Daily Stress Inventory; Faces III = Family Adaptability and Cohesion Evaluation Scale; FES = Family Environment Scale; HAS = Health Assessment Scale; IES = Impact of Events Scale; ISSB = Inventory for Socially Supportive Behaviors; LES = Life Experiences Survey; LOF = Life Orientation Test; LSCM = Lepore’s Social Constraints Measure; MHSS-SF36 = Mental Health Summary Scale of the Short Form-36; PCL-C = Post-traumatic Symptom Disorder Checklist-Civilian version; PIES = Prior Illness Experience Scale; POQOLS = Pediatric Oncology Quality of Life Scale; POMS = Profi le of Mood States; PSI = Parenting Stress Index; PSS = Perceived Stress Scale; SCID-NP = Structured Clinical Interview for DSM-IV, Non-Patient version; SSINT = Semi-structured Interview;

SSS= Stress Support Scale; STAI = State-Trait Anxiety Inventory; TSS = Traumatic Stress Schedule; VABS = Vineland Adaptive Behavior Scales; WAS = World Assumptions Scale; WOC = Ways of Coping Checklist.

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