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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)- ).

Design Characteristics

Allen et al., 1997 ⁴⁷ Cross Sectional

Investigate the impact of cancer diagnosis on psychological wellbeing of children and parents

34 M 27 F

Mixed diagnoses Median time post diagnosis 3 weeks

STAI BDI Parental anxiety was higher than norms. M were most anxious. There were no gender differences found in depression

Barakat et al., 1997 ⁴⁸ Cross Sectional

Compare PTSS in cancer survivors and parents with healthy children and parents

309 M 213 F

Mixed diagnoses Survivors Mean yr off treatment 5.8

PTSD-RI STAI IES FACES ALTTIQ SNRDAT

M and F had higher levels of PTSS than controls. Past perceived life threat and social support were contributors to PTSS

Grootenhuis & Last, 1997b ⁴⁹ Cross Sectional

Determine which variables predict emotional adjustment of parents

84 M 79 F

Mixed diagnoses In & off treatment Mean mo post diagnosis: 51 1. Remission 54 2. Relapse 47

BDI TRAIT SSERQ CSS A lack of positive expectations about the course of the illness was most strongly related to negative emotions. Having a child with a relapse predicted helplessness and uncertainty for M. Depression in the child was related to uncertainty of the father

Kazak et al., a. 1997 ²⁹ b. 1998 ³⁰ Cross Sectional

a. Examine psychological sequalae survivors and their parents compared to healthy controls

b. Compare symptoms of anxiety and PTSS

a-b.

130 M 96 F

a-b.

ALL & ANLL Survivors Mean yr off treatment 5.8

a. FACES SNRDAT a-b.

IES STAI PTSD-RI

a. No differences in family functioning and social support

a-b.

More PTSS in M and F of survivors

Moore & Mosher, 1997 ⁵⁰ Cross sectional

Examine adjustment responses of mothers and children (self care and anxiety) to cancer

74 M Mixed diagnoses In & off treatment

STAI DCAPQ M of children off treatment showed better adjustment responses than M of children in treatment. Basic conditioning factors predict adjustment responses. A relationship between mother/child adjustment was found

Sawyer et al., a. 1997 ⁵¹ b. 1998 ⁵² c. 2000 ⁵³ Longitudinal

a. Follow prospectively adjustment of children and parents fi rst 2 years post diagnosis

b. Examine relation parent and family adjustment post diagnosis and adjustment of the child 2 yr post c. Assess psychological adjustment of children treated for cancer and their parents

a-b.

38 M 31 F c. 39 M 31 F

a-b-c Mixed diagnoses In & off treatment T1: mean weeks post diagnosis 5 a. T2: 1 & 2 yr post T1

b. T2: 2 yr post T1 c. T2-T5: 1, 2, 3 and 4 yr post T1

a-b-c FAD-GFS GHQ

a. Children and parents reported more emotional distress than controls post diagnosis. N of problems declined the fi rst year and stabilized at comparable level with controls

b. Distress level M post diagnosis were potential important infl uence on child adjustment

c. Parents and children reported more psychological problems than controls post diagnosis. In the longer term, there were no differences in the number of problems

Design Characteristics

Hoekstra-Weebers et al., 1998 ²⁴ RCT

Evaluate psycho educational intervention program parents of children with cancer

20 M 19 F

Mixed diagnoses In treatment T1: ≤ 14 days, T2: 6 and T3: 12 mo post diagnosis

STAI-State SCL90 SSL-D GHQ-12 Intensity Emotions List

Although there was a positive clinical evaluation, the structured intervention program was no more effective than standard care

Hoekstra-Weebers et al.,

a. 1998 ⁵⁴ b. 1999 ⁵⁵ c. 2001 ⁵⁶ Wijnberg-Williams et al.,

d. 2006 ⁵⁷ e. 2006 ⁵⁸ Prospective

a. Examine gender differences in adaptation to diagnosis, and relation with coping style of parents of children with cancer

b. Examine risk variables for future, immediate and persistent psychological distress parents c. Investigate level support and concurrent, prospective effects support on functioning parents d. Explore effects social support on psychological distress of parents of pediatric cancer patients e. Examine change and gender differences in self reported distress

a-b-c.

T1: 85 M 79 F T2-T3:

66 M 62 F d-e.

T4: 58 M 57 F

a-b-c.

Mixed diagnoses In treatment T1: ≤ 14 days, T2: 6 and T3: 12 mo post diagnosis d-e.

Survivors Deceased T4: 5 yr post diagnosis

a. SCL90 b. STAI-Trait SIB QREE RSES

a-b.

UCL a-b-c-d-e.

GHQ-12 b-c-d.

SSL-I SSL-D e. SCL90 STAI-State

a. More psychiatric symptoms and psychological distress at diagnosis, no gender differences. Distress declined with time. Few gender differences coping

b. Trait anxiety was the strongest predictor of distress. Social support additional risk factor F. Previous life events and assertive behavior additional risk factors M

c. Most support at diagnosis. Decrease of support with time but parents were equally satisfi ed. Dissatisfaction with social support and negative interaction was a risk factor for F, not M. Well adjusted M got more support than M who remained clinically distressed d. Decreased distress and support T1-T4. No change in satisfaction support and negative interaction. Dissatisfaction with support and negative interactions affected distress F, not M

e. Decreased distress, psycho-neurotic symptoms and anxiety to normal level T4, except on GHQ. M more anxiety than F.

Parents of children who relapsed reported more anxiety than parents of survivors or deceased children

Kazak et al., 1998 ³⁰ Cross Sectional

Predict PTSS in parents of childhood cancer survivors

320 M 224 F

Mixed diagnoses Survivors Mean yr off treatment 5.7

PTSD-RI STAI FACES SNRDAT ALTTIQ

Anxiety was the strongest predictor of PTSS.

Other contributors were: perceived life threat, treatment intensity and social support

Kazak et al., 1999 ²⁰ Case control

Piloting Surviving Cancer Competently Intervention Program (SCCIP). Evaluate changes in PTSS, anxiety and family functioning

19 M 13 F

Mixed diagnoses Survivors Off treatment

PTSD-RI IES STAI- State FLS

PTSS and anxiety decreased in the participants. Changes in family functioning were diffi cult to discern

*% *&

Design Characteristics

Barakat et al., 2000 ⁵⁹ Longitudinal

Explore impact PTSS on long- term, psychological functioning of cancer survivors and M

65 M Mixed diagnoses Survivors T1: Mean mo off treatment 58 T2: 18 months post T1

T1:

PTSD-RI IES ALLTIQ T2: BSI LES

PTSS at T1 predicted general adjustment at T2, approximately 18 months later

Dockerty et al., 2000

60

Cross Sectional

Assess mental health parents of children with cancer, compared to healthy controls

218 M 179 F

Mixed diagnoses In treatment

GHQ-12 VAS CAGE LTE-Q B-SSQ

Signifi cant but small differences in mental health M and F of children with cancer compared to controls. Parents of children with cancer are relatively resilient

Manne et al., 2000 ⁶¹ Cross Sectional

Investigate individual differences in coping style, lifetime traumatic events, social support and PTSS

72 M Mixed diagnoses Survivors Mean yr off treatment 2.5

PCL-C ISEL MBSS LEC 13.5 % of the M had symptoms indicative of cancer related PTSS Perceived social constraints and ‘lack of belonging’ were associated with PTSS.

Sloper, 2000 ⁶² Longitudinal

Investigate psychological distress in parents and relations between illness variables, appraisal, psychosocial resources and coping strategies

68 M 58 F

Mixed diagnoses In & off treatment T1: 6 mo and T2: 18 mo post diagnosis

T1-T2: MI T1: FES SSRM-SNSS BLCS WCQ

51% M and 40% F reported high distress levels at T1 and T2. M: Appraisal of strain, ability to deal, more self-directed coping and family cohesion were predictive of distress.

F: risk employment problems, number of hospitalizations, appraisal and family cohesion were predictive of distress

Best et al., 2001 ³¹ Longitudinal

Evaluate association parental anxiety during treatment childhood leukemia and PTSS post treatment

66 M 47 F

ALL & AML T1: In treatment T2: Mean yr off post T1 3.7

T1: PPQ T2: STAI-State PAAS IES-R PTGI SNRDAT

Anxiety during treatment was a predictor of PTSS for M, not F. Anxiety, self-effi cacy, posttraumatic growth and time since treatment were associated with avoidance

Frank et al., 2001 ⁶³ Cross Sectional

Determine whether cognitive appraisals, perceptions of child behavior and social support predict affective responses differentially for M and F

77 M 48 F

Mixed diagnoses In & off treatment Mean yr post diagnosis:

M: 2.7 and F: 2

BDI STAI ASQ CHIP Parents did not differ on any of the variables.

There were differential predictors of affective responses for mothers and fathers

Fuemmeler et al., 2001 ³³ Cross Sectional

Examine PTSS and general distress among parents of children with a brain tumor

18 M 10 F

Brain tumor Off treatment Mean yr post diagnosis 6.8

PDS BSI PPUS WCQ Parents of survivors of brain tumor were found to be at risk for PTSS and general distress. Uncertainty in illness was a primary risk factor for adjustment problems

Goldbeck, 2001 Longitudinal ⁶⁴

Study effect coping dissimilarity within couples on QoL of parents of children with cancer, compared to parents of children with diabetes or epilepsy

25 M 25 F

Mixed diagnoses In treatment Mean weeks post diagnosis:

T1: 1-2 T2: 8-12

ULQIE CHIP TCS Parents of children with cancer used more rumination, defense, information seeking, and less social support seeking than controls.

M more frequent and effective coping strategies than F, but no differences in QoL.

Coping dissimilarity F and M has a differential effect on family members

Design Characteristics

Mu et al., 2001 Cross Sectional ⁶⁵

Examine impact of stress experienced by M during cancer treatment of the child

100 M Mixed diagnoses

In treatment Mean length of treatment 12 mo

STAI-State PPUS BAS SMS

Sense of mastery was a mediator for uncertainty and anxiety. Uncertainty was a good predictor for boundary ambiguity

Iqbal & Siddiqui, 2002 ³² Cross Sectional

Determine frequency of depression in parents of children with ALL

37 M 23 F

ALL Off treatment First remission within last month

SCID-IV MMSE Depression found in 34 parents, more common among M, less educated parents, lower SES

Goldenberg-Libov et al., 2002 ⁶⁶ Cross Sectional

Examine prevalence and predictive factors of PTSD and PTSS in M

49 M Mixed diagnoses Survivors Off treatment

SCID-PTSD PSEI 20 % M current and 27 % M lifetime PTSD.

The number of low magnitude stressors past year, the perception of the cancer threat and income were contributors to the prediction of PTSS

Mu et al., 2002 ⁶⁷ Cross Sectional

Examine stress impact on F caring for children undergoing cancer treatment

76 F Mixed diagnoses In treatment Mean weeks in treatment 15

STAI-State PPUS PMS Uncertainty and level of education were good predictors of anxiety

Sahler et al., 2002 ²¹ Two-arm RCT

Examine feasibility and effects Problem Solving Skills Therapy (PSST) with M of newly diagnosed children

50 M Mixed diagnoses In treatment Mean weeks from diagnosis to T1:

PSST 8.9 Controls 9.3

POMS SPSI-C M in PSST-intervention condition showed enhanced problem-solving skills and decreased negative affectivity compared to controls

Santacroce, 2002 ⁶⁸ Cross Sectional

Describe relations between uncertainty, anxiety and PTSS in parents

12 M 3 F

Mixed diagnoses In treatment Mean weeks post diagnosis 5

STAI-State PTSD-RI PPUS

Level of uncertainty was lower than expected.

Anxiety level was comparable to hospitalized persons with anxiety disorders. Level of PTSS was higher than parents of survivors. There was a signifi cant relation between anxiety and PTSS

Yeh, 2002 ⁶⁹ Cross sectional

Investigate gender differences stress in parents of C with cancer diagnosis

164 M 164 F 1. 48 M & F 2. 43 M & F 3. 23 M & F 4. 47 M & F

Mixed diagnoses In & off treatment 1. Diagnosis ≤ 2 mo 2. In remission 3. Relapse 4. Off treatment

PSI-SF MSS SCL35-R M reported higher distress levels than F.

Parents of children newly diagnosed with cancer showed higher levels of depression, anxiety, stress and marital dissatisfaction

Boman et al., a. 2003 ⁷⁰ b. 2004 ⁷¹ Cross Sectional

a. Understand reactions M and F of children with cancer b. Compare incidence disease- related distress symptoms in M and F of children with cancer and parents of children with diabetes

a-b.

146 M 118 F

a-b.

Mixed diagnoses In & off treatment Mean mo post diagnosis 34

a-b.

PPD-C

a. Distress levels (loss control, self-esteem, anxiety, depression, sleep disturbance, psychological and physical distress) were lower with more time elapsed since diagnosis b. Parents of children with cancer reported higher levels of anxiety, depression, loneliness, psychological and physical distress than parents of children with diabetes