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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lZgZWdgc^ci]Z[daadl^c\Xdjcig^Zh/BdgdXXd!Ijg`Zn!6gjWVVcYHjg^cVb#I]ZX]^aYgZc

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&#

5 years post SCT

10 years post SCT

28 eligible families

5 families refused

23 willing to participate

15 mothers 14 fathers

15 families did return booklets 8 families did not

return booklets

54 eligible families

8 families refused

46 willing to participate

23 mothers 21 fathers

25 families did return booklets 3 blank booklets

18 not returned Figure 1. Flow chart of participants

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]^\]#HZZIVWaZ'#

Table 1. Descriptive information about study participants and their children

Factor 5 years post SCT (29)

Mean (sd)

10 years post SCT (44) Mean ( sd)

Parent age (years) 44.7 (4.7)

Range 37-58

46.3 (5.5) Range 39-63

N (%) N ( %)

Parent gender

Female 15 (55) 23 (48)

Parental education Primary school only High school only MBO HBO

University degree Unknown

3 (10) 6 (21) 10 (35) 4 (14) 5 (17) 1 (3)

6 (14) 9 (21) 9 (21) 14 (31) 2 (4) 4 (9) Country of origin

Dutch (The Netherlands) Other

25 (86) 4 (14)

36 (82) 8 (18)

Child age (years) 13.4 (4.8)

Range 5-22

16.6 (4.4) Range 11-26 Child gender

Female Male

9 (53) 8 (47)

10 (40) 15 (60)

N (%) N ( %)

Diagnosis child ALL, AML, CML,JMML MDS

Immune defi ciency Fanconi anemia Other blood diseases Metabolic disorders X-LPD

Other diseases

8 (48) - 2 (12) 3 (18) - - 2 (12) 2 (12)

14 (56) 3 (12) 1 (4) - 5 (20) 1 (4) - 1 (4)

MBO, Post high school education, community college level; HBO, College level;

ALL, acute lymphoblastic leukemia; AML, acute myeloid leukemia; CML, chronic myelogenous leukemia; MDS, myelodysplastic syndrome; X-LPD, X-linked lymphoprolerative disorder

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i]Vci]ZXdbeVg^hdc\gdje[Vi]ZghI2(#+'!e1#%&0bdi]ZghI2(#'%!e1#%&#

Table 2. Parental stress scores of study groups and reference groups: means and standard deviations for mothers and fathers

Outcome measure 5 years post-SCT Mean (sd)

10 years post-SCT Mean (sd)

Reference group Mean (sd) Mothers

(N=15) (N=23)

PIP-SF Total 66.4 (28.7) 55.4 (25.6) ^a,b 74.4 (24.0)

GHQ 2.2 (3.1) 1.4 (2.2) 1.8 (0.8)

CVS 18.7 (7.6) ^a 16.2 (8.0) ^a,b 2.1 (2.5)

Fathers

(N=14) (N=21)

PIP-SF Total 55.4 (25.6) 42.6 (15.6) ^a 69.2 (23.6)

GHQ 1.4 (2.2) 1.6 (2.2) 1.3 (0.3)

CVS 18.3 (8.0) ^a 16.2 (3.7)^a,b 2.1 (2.4)

PIP-SF, Pediatric Inventory for Parents, short form; GHQ, General Health Questionnaire; CVS, Child Vulnerability Scale. ^a signifi cant difference with reference group, ^b signifi cant difference between 5 and 10 years post SCT

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aZkZahVXXdjciZY[dg*,d[i]ZkVg^VcXZ^cY^hZVhZ"gZaViZYhigZhhE>E"H;^cbdi]ZghVcY

Table 3. Correlation matrix between parental stress, perceived vulnerability and infl uencing variables for mothers (N=38) and fathers (N=35)

PIP-SF total

GHQ CVS Time

since SCT

Ethnicity Malignant/non- malignant

Parent age

Mothers

PIP-SF total - .44* -.71** .36 .56* .43* .13

GHQ - -.21 .08 .42** .07 .02

CVS - -.16 -.59** -.20 -06

Time since SCT - -.04 -.04 .15

Ethnicity - .28 -.17

Malignant/non- malignant disease

- .01

Parent age -

Fathers

PIP-SF total - .36 -.77** .33 .39 .27 .58

GHQ - -.24 .01 .30 .09 .17

CVS - -.15 -.47** .33* -.42

Time since SCT - -.01 -.08 .10

Ethnicity - .18 .04

Malignant/non- malignant disease

- .12

Parent age -

* correlation is signifi cant at the 0.05 level, * correlation is signifi cant at the 0.01 level

PIP-SF, Pediatric Inventory for Parents, short form; GHQ, General Health Questionnaire; CVS, Child Vulnerabili

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dgcdilVhgZaViZYidY^hZVhZ"gZaViZYhigZhh#;dg[Vi]Zgh!l]Zi]Zgi]ZjcYZgan^c\Y^hZVhZ

lVh bVa^\cVci dg cdi lVh gZaViZY id eZgXZ^kZY kjacZgVW^a^in# EVgZcih d[ X]^aYgZc l^i] V

bVa^\cVciY^hZVhZVgZjhjVaan[VXZYl^i]bdgZhigZhhWZ[dgZH8Ii]VceVgZcihd[X]^aYgZc

l^i]Vcdc"bVa^\cVciY^hZVhZ!YjZidaZc\i]neZg^dYhd[igZVibZcil^i]X]Zbdi]ZgVen

VcY"^cbVcnXVhZh"]Vk^c\idYZVal^i]i]Zh]dX`d[VgZaVehZYY^hZVhZ#I]ZhZeg^dg^aacZhh

ZmeZg^ZcXZh ^c[ajZcXZ eVgZciVa higZhh aZkZah Yjg^c\ VcY V[iZg i]Z H8I igV_ZXidgn P&.R#

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Vcdi]ZggZaVehZ!hdbZi^bZhgZ[ZggZYidVhi]Z9VbdXaZhhncYgdbZÉP&!&&R!XVcWZegZhZci

^cWdi]XVcXZghjgk^kdghVcYi]Z^geVgZcih[dgVadc\i^bZ#

Table 4. Simultaneous Regressions (Beta) for Measures of Adjustment1

CVS PIP-SF total GHQ

Mothers Adjusted R square

(sign. of F)

.30* .56 ** .07

Parent age -.09

Time Since SCT .09

Ethnicity (yes/no) .56** .15 .22

Malignant (yes/no) -.08 .20

CVS - -.57** -.07

Fathers

CVS PIP-SF total GHQ

Adjusted R square (sign. of F)

.35** .66 ** .07

Parent age -.32 -.30* -.13

Time since SCT

Ethnicity (yes/no) -.39** -.02 .06

Malignant (yes/no) -.25

CVS - -.63** -.27

1values reported are standardised regression coeffi cients (Beta) with signifi cance of t, with the exception of the rows presenting Adjusted R squares with signifi cance of F. * p < 0.05 ** p < 0.01

CVS = Child Vulnerability Scale; PIP-SF= Pediatric Inventory for Parents, short form;

GHQ = General Health Questionnaire

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Appendix. Item-total and item-scale correlations of the PIP short form scales

Items

Corrected Item-Total Correlation Frequency

Corrected Item-Total Correlation Diffi culty

1 (5)^*. Being unable to go to work/job .61 .56

2 (7). Speaking with doctor .65 .40

3 (13). Being with my child during medical procedures .72 .59

4 (16). Seeing my child sad or scared .72 .62

5 (17). Talking with the nurse .63 .66

6 (18). Making decisions about medical care or medicines .62 .41 7 (25). Having little time to take care of my own needs .71 .55 8 (26). Feeling helpless over my child’s condition .69 .49 9 (28). Handling changes in my child’s daily medical routines .58 .53

10 (29). Feeling uncertain about the future .70 .59

11 (30). Being in the hospital over weekends/holidays .69 .64 12 (33). Helping my child with medical procedures (e.g. giving

shots, swallowing medicine, changing dressing) .61 .56 13 (36). Feeling scared that my child could get very sick or die .65 .40 14 (38). Watching my child during medical visits/procedures .72 .59 15 (42). Spending a great deal of time in unfamiliar settings .72 .62

*The numbers between brackets refer to the item numbers in the original questionnaire.

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