Comparison of Mother-Father Perceptions of their Child's Self-Management of Diabetes

COMPARISON OF MOTHER-FATHER PERCEPTIONS OF THEIR CHILD’S SELF-MANAGEMENT OF DIABETES

BARBARA J. LEONARD, PhD, Rh’ School of Nursing, University of Minnesota, Minneapolis, Minnesota, USA

BARBARA J. KRATZ, MS, CPNP Park Nicollet Clinic-HealthSystem Minnesota, Bloomington, Minnesota, USA

CAROL L. SKAY, PhD MARGUERITE M. RHEINBERGER, JD, MPH School of Nursing, University of Minnesota, Minneapolis, Minnesota, USA

This study compared mothers’ and fathers’ perceptions of their children’s self- management of diabetes. Participants included a subsample of 29 paired parents of children and youth with diabetes, ages 8-14, who attended a diabetes camp in the Midwest. Parents completed a self-report structured questionnaire that included content specific to self-management. Results showed high ratings for child responsibility for self-management, style of care delivery, and mother-father self-efficacy in managing specific tasks of diabetes self-management. Although overall ratings were similar, in the majority of measures mothers’ ratings were higher than fathers’ ratings. Areas of similarity and significant differences in perceptions are identified with implications for practice stated.

Diabetes mellitus is the most common metabolic disorder of childhood, affecting 1 in 500 individuals under age 20 (Giordano, Petrila, Banion, & Neuenkirchen, 1992). Most of the responsibility for care of youth with any chronic illness is initially placed on their parents. The transition to self-care is a progressive process that is ideally started in childhood, with adolescents assuming increased responsibility commensurate with their developmental capacities (Giordano et al., 1992).

Transferring responsibility for self-care to the adolescent is complex and requires assessment of the interplay of a variety of factors, including knowledge, performance, cognitive complexity, locus of control, family factors, and perceptions (Follansbee, 1989; Giordano et a]., 1992). The

Address correspondence to Barbara J. Leonard, University of Minnesota School of Nursing, 6-101 Weaver Densford Hall, 308 Harvard St. SE, Minneapolis, MN 55455.

Issues in Comprehensive Pediatric Nursing, 20:6e87, 1997 Copyright 0 1997 Tqlor & Francis

0146-0862/97 $12.00 -+ .OO 69

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70 B. J. Leonard et al.

family has been identified as the primary social context of a young person with a disability (Patterson, 1991). Families, specifically parents, play a critical role in the child’s self-care of a chronic illness (Deatrick, Angst, & Madden, 1994; Follansbee, 1989; Saucier & Clark, 1993). Family func- tioning will have either an enhancing or an undermining effect on the accomplishment of critical developmental tasks and transitions (Patterson, 1991).

Although the concept of self-care and the interchangeable concept of self-management have received increased attention in the literature in relation to youth with a chronic illness, less attention has been given to the roles of parents and families in relation to self-care with children and adolescents. A paucity of literature exists specific to each parent’s perceptions of self-care (Eiser, Havermans, Pancer, & Eiser, 1992).

There is support for exploring the difference in parental perceptions and the need to define the meaning any differences may have in relationship to management of care for children with chronic illness or developmental disabilities (Beckman, 199 1 ; Copeland & Clements, 1993; Cummings, 1976; Eiser et al., 1992). Eiser et al. found differences in the way mothers and fathers perceived their children and their self-management of diabetes. In an analysis of paired data, fathers were found to perceive their children as more dependent and more likely to have diffi- culty with peers compared with mothers; however, there were no overall differences in parents’ ratings (Eiser et al., 1992).

Allen, Tennen, McGrade, Affleck, and Ratzan (1 983) found that parents’ perceptions of increased independence in various aspects of diet management were related to more successful coping by parents and their children and improved compliance.

Mothers’ and fathers’ perceptions of diabetes in adolescent daughters and its impact on the family were examined in a study by Dashiff (1993). Most parents felt unprepared for the periods of poor diabetic control encountered as their daughters entered adolescence. Parents described periods of emotional distress for themselves due to the metabolic insta- bility that commonly occurs during adolescence. Mothers reported more worry and intermittent feelings of guilt when contrasted with fathers (Dashiff, 1993).

The purpose of this study was to compare mothers’ and fathers’ perceptions of their children’s self-management of diabetes. Specific inquir- ies included mothers’ and fathers’ perceptions about the amount of responsibility their children assume for diabetes self-management, dimensions of care delivery style among their health care providers, their own level of self-efficacy in independent self-management of diabetes tasks, and the way tasks or situations specific to diabetes management are handled in the family. In addition, we examined factors influencing mothers

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Self-Management of Diabetes 71

and fathers in deciding how much responsibility their children should assume in diabetes self-management.

METHOD

The survey respondents for this study were a subsample of a larger study of 120 parents of children and youth aged 8-17 years who were attending two sessions of a diabetes camp in the Midwest. The subsample con- sisted of 29 matched sets of parents (mothers and fathers) of children and youth aged 8-14 years. Parents were recruited to complete surveys at the camp registration and product information fairs that were held the first day of each of two 1-week camp sessions. All available matched pairs of parents were included in this study. In all 29 cases, both mother and father lived with the child with diabetes.

The authors of the study developed all but one section of the survey, the Diabetes Family Responsibility Questionnaire (DFRQ; Anderson, Auslander, Jung, Miller, & Santiago, 1990). The 17 questions on the DFRQ make up three subscales: General Health Maintenance, Regimen Tasks, and Social Presentation of Diabetes, Anderson et al. found internal consistency, with alphas ranging from .69 for the shortest scale, Social Presentation of Diabetes, to .85 for the total DFRQ scale. Concurrent validity was found for the Regimen Task subscale and the total DFRQ when correlations were performed between the mothers’ scores on the DFRQ and the mothers’ scores on the Moos Family Environment Scale (FES; Moos, 1986; Anderson et al., 1990). For the sections other than the DFRQ, face and content validity were established by two parents of children with diabetes and three nurse practitioners reviewing and comment- ing on the questions. The instrument was rewritten incorporating their suggestions. Reliability was not established.

RESULTS

The analysis compared mothers’ and fathers’ perceptions of care regard- ing their children’s self-management of diabetes. These comparisons include mothers’ and fathers’ perceptions as they related to (a) the amount of responsibility their children assumed for diabetes self-management compared with the average child with diabetes of the same age, (b) how certain factors influenced mothers and fathers in deciding how much responsibility their children should assume in diabetes self-management, (c) ratings of the children’s health care providers along specific dimensions of style of care delivery, (d) mothers’ and fathers’ ratings of their own self-efficacy in independently managing specific tasks related to self- management of diabetes, and (e) how tasks or situations related to diabetes management were handled in the family.

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We used McNemar's chi-square for dependent proportions and paired t tests in the analysis. Both of these methods adjust for the dependence or correlation expected owing to mothers and fathers being paired subject units within a family.

Family Demographics

This was a highly educated group. The majority, 20 (69%) of the mothers and 22 (76%) of the fathers, had vocational-technical, some college, or a college degree. Fourteen percent of the mothers and fathers had some graduate work or a graduate degree. Five (1 7%) of the mothers and 3 (10%) of the fathers had a high school diploma or equivalent. All fathers were employed, whereas only 4 (14%) mothers were unemployed or home- makers. Results showed that 14 (48%) mothers and 12 (41%) fathers were in unskilled or skilled occupations. A higher percentage of fathers (59%) than mothers (3 8%) were in technical, semiprofessional, professional, or managerial occupations (see Table 1 ) .

Fifteen of the 29 children with diabetes had second-degree relatives with diabetes, including grandmothers, grandfathers, aunts, and uncles. One child had a first-degree relative (father) with diabetes.

Twenty-eight of the 29 children in the sample were White. Race was not reported for 1 child. Sixteen (55%) of the children were male, and 13 (45%) were female. The campers' mean age was 11.1 years, with a range from 8 to 14 years; the mean age at diagnosis was 7.2 years, with a range from I to 12 years. At the time of the survey, the mean time since diagnosis had been 3.8 years, with a range of 0.7 to 9.3 years. Twenty

Table 1. Family demographics

Parent's self-reported: Mother (YO) Father (YO)

Level of education High school diploma or equivalent 17 10

College degree 17 45 Some graduate work 3

Some college or vo-tech 52 31

- Graduate degree 10 14

Unemployed or homemaker 14 Unskilled laborer 7 3 Skilled laborer 41 38 Technical or semiprofessional 17 14

Occupation -

Professional or managerial 21 45

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(69%) of the children with diabetes had previously attended the camp for children with diabetes.

Seven (24%) of the 29 children had an additional health condition or disability (3% had arthritis; lo%, asthma; 7%, miscellaneous or other; and 3%, combined asthma and allergies (see Table 2).

Table 2. Demographics of children with diabetes

Frequency YO of sample

Camper age (years) 8 9

10 11 12 13 14

1 2 4 5 6 7 8 9

10 11 12

Less than 1 1 2 3 4 5 6 7 8 9

Age at diagnosis (years)

Time since diagnosis (years)

2 4 6 3 8 2 4

I 1 2 2 3 8 4 3 2 2 1

4 5 3 5 5 2 1 2 1 I

Additional health conditions or disabilities Arthritis 1 Asthma 3 Miscellaneous or other 2 Asthma and allergies 1

7 14 21 10 28

7 14

3 3 7 7

10 28 14 10 7 7 3

14 17 10 17 17 7 3 7 3 3

3 10 7 3

Note. N = 16 boys (550/,) and 13 girls (45%).

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Responsibility for Diabetes Self-Management

We computed means for both mothers’ and fathers’ perceptions of the amount of responsibility their children assume for diabetes self-management compared with the parents’ perception of what an average child with diabetes was like. The mothers’ perceptions (means) were slightly higher than the fathers’ in all areas except one. Fathers’ ratings were slightly higher in the area of responsibility for insulin injection. Mothers and fathers both perceived their children as being well above average for age in the areas of responsibility for insulin injection (mother mean = 3.90, father mean = 4.00, on a 5-point numeric scale) and responsibility for blood glucose monitoring (mother mean = 4.17, father mean = 4.07, on a 5-point scale). In only two of six areas, the child assumed responsibility for diet or meal plan and the child assumed responsibility for overall management plan; p values of .057 showed close to significant results when comparing mother and father means (see Table 3).

Children ’s Responsibility in Diabetes Self-Management

Parents were asked to rate how the following factors influenced them in deciding how much responsibility their children should assume in self- management: child support group, parent support group, new school or day care setting, social opportunity (meals, sleepovers, day trips), child’s temperament and personality, and book or magazine articles. Answers were rated on a 5-point numeric scale, with 1 being no influence and 5 being great influence. Mothers perceived social opportunities (mothers’ mean = 4.44, fathers’ mean = 3.81) and child’s temperament and personality (mothers’ mean = 4.48, fathers’ mean = 3.70) as having a strong influence (i.e., a mean greater than 4.0, with 5.0 being the highest). In all areas, mothers’ perceptions of the amount of influence of specific factors was slightly higher than fathers’. Differences between mothers and fathers were found for the following three factors: parent support group influence, 422) = 2.1 1, p = .047; social opportunity influence, t(27) = 2.77, p = 010; and child’s temperament or personality influence, t(27) 3.23, p = .003 (see Table 4).

Style of Care Delivery

Mothers and fathers rated their health care providers (those who assisted parents and children in managing diabetes) on 5-point numeric scales for four dimensions: (a) 1 being authoritarian and 5 being acknowledging family authority, (b) 1 being having a disease orientation and 5 being having a health orientation, (c) 1 being narrowly focused with an interest

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Tab

le 3

. C

ompa

riso

n of

mot

hers

’ and

fath

ers’

per

cept

ions

of th

eir

child

ren’

s ab

ility

for

self-

man

agem

ent

Item

or

scal

e

M

SD

n M

othe

r Fa

ther

M

othe

r Fa

ther

t

P

Chi

ld a

ssum

es r

espo

nsib

ility

for

die

t or

mea

l pla

n 29

3.

45

3.28

0.

736

0.70

2 1.

98

.057

C

hild

ass

umes

resp

onsi

bilit

y fo

r in

sulin

inj

ectio

n 29

3.

90

4.00

1.

047

1.00

0 4

.65

,5

22

Chi

ld a

ssum

es re

spon

sibi

lity

for

bloo

d-gl

ucos

e m

onito

ring

29

4.17

4.

07

0.96

6 0.

753

0.72

.4

77

Chi

ld a

ssum

es re

spon

sibi

lity

for u

rine-

keto

ne m

onito

ring

27

3.04

2.

96

1.12

6 1.

055

0.40

,6

91

Chi

ld a

ssum

es r

espo

nsib

ility

for

act

ivity

lev

el m

onito

ring

29

3.45

3.

28

0.73

6 0.

591

1.54

.1

34

Chi

ld a

ssum

es re

spon

sibi

lity

for

over

all m

anag

emen

t pla

n 28

3.

71

3.54

0.

713

0.69

3 1.

99

.057

~

~~

Not

e. A

nsw

ers w

ere

rate

d on

a n

umer

ic s

cale

rang

ing from 1

to 5

, with

1 b

eing

wel

l bel

ow a

vera

ge fo

r ag

e and

5 be

ing

wel

l abo

ve a

vera

ge fo

r ag

e.

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Tabl

e 4.

Fact

ors i

nflu

enci

ng m

othe

rs’ a

nd fa

ther

s’ d

ecisi

on to

dec

ide

thei

r ch

ildre

n’s

self-

man

agem

ent

resp

onsib

ility

Item

or

scal

e

M

SD

n M

othe

r Fa

ther

M

othe

r Fa

ther

t

P

Chi

ld s

uppo

rt gr

oup

influ

ence

on

pare

nt i

n de

cidi

ng h

ow

20

2.35

2.

25 -

1.53

1 1.

209

0.35

.7

33

muc

h re

spon

sibi

lity

child

ass

umes

in d

iabe

tes

self-

m

anag

emen

t

muc

h re

spon

sibi

lity

child

ass

umes

in

diab

etes

sel

f-

man

agem

ent

deci

ding

how

muc

h re

spon

sibi

lity

child

ass

umes

in

diab

etes

sel

f-m

anag

emen

t

muc

h re

spon

sibi

lity

child

ass

umes

in d

iabe

tes

self-

m

anag

emen

t

pare

nt in

dec

idin

g ho

w m

uch

resp

onsi

bilit

y ch

ild

assu

mes

in d

iabe

tes

self-

man

agem

ent

deci

ding

how

muc

h re

spon

sibi

lity

child

ass

umes

in

dia

bete

s se

lf-m

anag

emen

t

Pare

nt s

uppo

rt gr

oup

influ

ence

on

pare

nt in

dec

idin

g ho

w

22

2.59

2.

18

1.70

9 1.

332

2.11

.0

47*

New

sch

ool o

r day

car

e se

tting

influ

ence

on

pare

nt i

n 14

2.

14

2.07

1.

562

1.20

7 0.

21

,836

Soci

al o

ppor

tuni

ty i

nflu

ence

on

pare

nt i

n de

cidi

ng h

ow

27

4.44

3.

81

0.89

2 1.

145

2.77

.0

10**

Influ

ence

of c

hild

’s te

mpe

ram

ent

or p

erso

nalit

y on

27

4.

48

3.70

0.

700

1.20

3 3.

23

.003

**

Influ

ence

of b

ook

or m

agaz

ine

artic

le o

n pa

rent

in

25

3.08

2.

76

1.47

0 1.

052

1.14

.2

66

~

Nof

e A

nsw

ers

wer

e ra

ted

on a

num

eric

sca

le r

angi

ng fr

om 1

to

5, w

ith 1

bei

ng no

rnflu

ence

and

5 b

eing

gre

at r

nji’u

ence

*p

I 0

5 **

p 5

01

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in the disease process as it affects the child oniy and 5 being having a holistic focus, and (d) 1 being having adult-focused discussions and 5 being inviting child’s input in decision making. Mothers and fathers rated health care providers as acknowledging family authority, having a health orientation with a primary focus on growth and development, having a holistic perspective that considers the whole child and the whole family, and inviting the child’s input with decision making. In all areas, mothers’ perspectives of these dimensions were slightly higher than fathers’. Two of the areas showed differences between mothers and fathers: disease orientation versus health orientation, t(28) = 2.65, p = .013, and discussion focus with adults versus addresses child, invites child’s input in decision making, t(28) = 2.93, p = .007 (see Table 5) .

Mothers’ and Fathers’ Serf-Efjcacy

Mothers and fathers were asked to rate their level of confidence in managing specific tasks related to diabetes management. Answers were rated on a 5-point numeric scale, with 1 being not confident at all and 5 being vevy conJident. In 15 of 17 areas identified in Table 6 mothers felt very confident in their ability to manage tasks (ie.’ a mean greater than 4.00). Fathers also felt very confident in 12 of the 17 areas. In the item “I can adjust my child’s management plan if s h e gets a cold or flu,” mothers’ mean was 3.83 and fathers’ mean was 3.59, and in the item “I can talk to my child about the realities of long-term complications without undue upset,” mother’ mean 3.69 was equal to fathers’. In these two items, mothers and fathers felt least confident. In all areas, mothers’ level of confidence was slightly higher than fathers’. The following three items showed significant differences between mothers and fathers: ‘‘I can adjust child’s management plan when she is more active than usual,” t(28) = 2.58, p = .016; “ I can teach my child how to take more responsibility for diabetes management,” t(29) = 2.36, p = .026; and “I can adjust my child’s management plan to allow for an overnight stay away from home without parents,” t(28) = 2.79, p = .010 (see Table 6).

Handling of Tasks or Situations Related to Diabetes Management

Parents were given a list of tasks or situations relating to diabetes management in their family and were asked to identify whether (a) the parent(s) takes or initiates responsibility for this almost all the time, (b) parent(s) and child share responsibility for this equally, or (c) the child takes or initiates responsibility for this almost all the time. We computed statistics on a scale ranging from 1 to 3, with 1 being the parent($ taking respon-

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Tab

le 5

. M

othe

r an

d fa

ther

rat

ings

of c

hild

’s h

ealth

car

e pr

ovid

ers’

sty

le o

f car

e de

liver

y

Item

or

scal

e

M SD

n M

othe

r Fa

ther

M

othe

r Fa

ther

t

P

Aut

horit

aria

n (g

ives

stri

ct g

uide

lines

for m

anag

emen

t) ve

rsus

28

4.

43

4.18

0.

790

0.94

5 1.

49

.I48

ac

know

ledg

es fa

mily

’s a

utho

rity

(wor

ks o

ut a

man

agem

ent

plan

with

chi

ld a

nd f

amily

)

orie

ntat

ion

(con

side

rs n

orm

al g

row

th,

deve

lopm

ent f

irst)

only

) ver

sus

holis

tic p

ersp

ectiv

e (c

onsi

ders

the

who

le

child

and w

hole

fam

ily)

invi

tes c

hild

’s in

put i

n de

cisi

on m

akin

g

Med

ical

orie

ntat

ion

(con

side

rs d

isea

se fi

rst)

vers

us h

ealth

28

4.

25

3.71

0.

701

1.11

7 2.

65

.013

*

Nar

row

foc

us (i

nter

est i

n di

seas

e pr

oces

s as

it a

ffec

ts c

hild

28

4.

32

4.00

1.

020

0.86

1 1.

67

.lo7

Focu

ses

disc

ussi

on o

nly

with

adu

lts v

ersu

s ad

dres

ses c

hild

, 28

4.

54

4.07

0.

744

0.90

0 2.

93

.007

**

Not

e. Answers w

ere

rate

d on

a n

umer

ic s

cale

rang

ing

from

1 to

5,

with

1 b

eing

aut

hori

tari

an an

d 5

bein

g ac

know

ledg

esfa

mily

’s au

thor

iwy;

with

1

bein

g m

edic

al o

rien

tatio

n an

d 5

bein

g he

alth

ori

enta

tion;

with

1 b

eing

nar

row

focus a

nd 5

bei

ng h

olis

tic p

ersp

ectiv

e; a

nd w

ith 1

bei

ng fo

cuse

s di

scus

sion

onl

y w

ith a

dults

and

5 b

eing

add

ress

es c

hild

. *p

I .05.

**p

5.01

.

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Tab

le 6

. M

othe

r an

d fa

ther

sel

f-effi

cacy

: Sel

f-effi

cacy

leve

ls in

inde

pend

ently

man

agin

g sp

ecifi

c tasks r

elat

ed

to d

iabe

tes m

anag

emen

t

M

SD

n M

othe

r Fa

ther

M

othe

r Fa

ther

t

P Ite

m o

r sc

ale

Hig

hest

sel

f-ef

ficac

y le

vels

(ba

sed

on p

-val

ues)

I ca

n ad

just

my

child

’s m

anag

emen

t pla

n to

allo

w f

or a

n 28

4.

57

4.21

I ca

n ad

just

my

child

’s m

anag

emen

t pla

n w

hen

she

or h

e 28

4.

60

4.18

I ca

n te

ach

my

child

how

to ta

ke m

ore

resp

onsi

bilit

y fo

r 29

4.

24

3.83

I ca

n or

gani

ze o

ur fa

mily

mea

ltim

es a

nd s

ched

ule

so th

at m

y 27

4.

44

4.04

I ca

n ad

just

my

child

’s i

nsul

in d

ose

base

d on

the

resu

lts o

f 28

4.

32

3.96

over

nigh

t st

ay a

way

fro

m h

ome

with

out

pare

nts

is m

ore

activ

e th

an u

sual

diab

etes

man

agem

ent

child

can

eat

mos

t mea

ls w

ith f

amily

mem

bers

eac

h da

y

bloo

d or

urin

e te

sts

Low

est

self-

effic

acy

leve

ls (

base

d on

p-v

alue

s)

I ca

n ta

lk to

my

child

abo

ut th

e re

aliti

es o

f lo

ng-te

rm

29

3.69

3.

69

I ca

n ch

ange

my

child

’s d

octo

r if

I do

n’t

like

him

or

her

28

4.39

4.

36

I can

be

succ

essf

ul in

get

ting

my

child

to

follo

w h

is o

r 27

4.

04

4.00

he

r m

anag

emen

t pla

n, e

ven

whe

n sh

e or

he

may

be

relu

ctan

t or

resi

stan

t at

firs

t I c

an a

dvoc

ate

for

bette

r he

alth

car

e fo

r m

y ch

ild i

f I

am

conc

erne

d ab

out u

nfai

rnes

s or

unr

easo

nabl

enes

s

com

plic

atio

ns w

ithou

t und

ue u

pset

27

4.19

4.

07

I am

con

fiden

t in

my

abili

ty to

hel

p m

y ch

ild m

anag

e di

abet

es

29

4.14

3.

93

\1

0.63

4

0.62

9

0.87

2

0.89

2

0.90

5

1.16

8

1.03

1 1.

055

1.07

5

0.83

3

0.87

6

0.77

2

0.80

5

0.98

0

0.88

1

1.00

4

0.95

1 0.

784

0.91

7

0.88

4

2.79

2.58

2.36

1.79

1.78

0.00

0.15

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20

0.49

0.92

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.016

.026

.086

.086

1 .ooo

.882

.8

39

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.364

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N

ote.

Ans

wer

s w

ere

rated

on

a nu

mer

ic s

cale

rang

ing from 1

to 5

, with

1 b

eing

not

con

fiden

t at

all

and

5 be

ing

very

con

fiden

t wi

thou

t he

lp.

Issu

es C

ompr

Ped

iatr

Nur

s D

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form

ahea

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Tabl

e 7.

Han

dlin

g of

task

s or

situ

atio

ns re

late

d to

dia

bete

s man

agem

ent:

Com

pari

son

of m

othe

r an

d fa

ther

per

cept

ions

of

the

way

spe

cific

task

s or

situ

atio

ns re

late

d to

dia

bete

s m

anag

emen

t are

han

dled

in t

heir

fam

ily

Item

or

scal

e

Rem

embe

ring

day

of c

linic

app

oint

men

t Te

lling

teac

hers

abo

ut d

iabe

tes

Rem

embe

ring

to ta

ke m

orni

ng o

r ev

enin

g in

sulin

M

akin

g ap

poin

tmen

ts w

ith d

entis

ts a

nd d

octo

rs

Telli

ng r

elat

ives

abo

ut d

iabe

tes

Adj

ustin

g in

sulin

dos

e ac

cord

ing

to re

sults

of

bloo

d su

gar o

r ur

ine

test

s N

otic

ing

diff

eren

ces

in h

ealth

, suc

h as w

eigh

t cha

nges

or

sig

ns o

f an i

nfec

tion

Telli

ng f

riend

s ab

out d

iabe

tes

Not

icin

g ea

rly s

igns

of

an in

sulin

rea

ctio

n G

ivin

g in

sulin

inj

ectio

ns

Dec

idin

g w

hat s

houl

d be

eat

en w

hen

fam

ily h

as m

eals

out

Ex

amin

ing

feet

and

mak

ing

sure

sho

es fi

t pro

perly

C

arry

ing

som

e fo

rm of

suga

r in

cas

e of

an

insu

lin r

eact

ion

Expl

aini

ng a

bsen

ces

from

sch

ool t

o te

ache

rs o

r ot

her

scho

ol p

erso

nnel

R

otat

ing

inje

ctio

n si

tes

Che

ckin

g ex

pira

tion

date

s on

med

ical

sup

plie

s R

emem

berin

g tim

es w

hen

bloo

d su

gar

or u

rine

shou

ld

be te

sted

M SD

n M

othe

r Fa

ther

~ Mot

her

Fath

er

t P

29

29

29

29

29

29

29

29

29

29

29

28

29

29

29

28

29

1.31

1.

24

1.76

1.

86

2.17

2.

14

1.07

1.

10

1.45

1.

48

1.79

1.

59

1.69

1.

52

2.38

2.

41

2.76

2.

59

2.38

2.

48

2.3 1

1.

93

2.00

1.

71

2.03

1.

97

1.34

1.

48

2.3

1 2.

17

1.43

1.

18

2.21

2.

07

0.47

1 0.

435

0.51

1 0.

516

0.53

9 0.

581

0.37

1 0.

310

0.50

6 0.

509

0.72

6 0.

628

0.60

4 0.

634

0.62

2 0.

682

0.43

5 0.

628

0.67

7 0.

738

0.47

1 0.

371

0.60

9 0.

600

0.56

6 0.

499

0.48

4 0.

634

0.76

1 0.

711

0.69

0 0.

390

0.55

9 0.

593

0.70

-0

.83

0.30

-0

.57

-0.3

0 1.

99

1.15

-0.2

1 1.

54

-1.1

4 4.

14

1.98

0.

57

4.9

4

0.85

1.

66

1.68

.489

,4

15

.769

.5

73

.769

.0

56

.258

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34

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.oo

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58

.573

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55

.403

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09

.103

Not

e. A

nsw

ers w

ere r

ated

on a

num

eric

scal

e ra

ngin

g fro

m 1

to 3

, with

1 b

eing

pare

nt($

tak

e or

ini

tiate

res

pons

ibili

ty fo

r th

is a

lmos

t al

l of

the

trine

, 2 b

eing p

aren

t@) a

nd c

hild

sha

re r

espo

nsib

ility

for

this

abo

ut e

qual

ly, a

nd 3

bei

ng c

hild

take

s or

initi

ates

res

pons

ibili

ty fo

r th

is a

lmos

t aN

ofth

e tim

e.

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sibility; 2, the parent and child sharing responsibility, and 3, the child taking responsibility. The following ranges were used to interpret the results: (a) less than 1.5, parent taking or initiating responsibility; (b) 1.5 to 2.5, shared responsibility between parents and child; and (c) greater than 2.5, child taking or initiating responsibility.

The following areas had parents taking or initiating responsibility: (a) remembering day of clinic appointment, (b) making appointments with dentists and doctors, (c) telling relatives about diabetes, (d) explaining absences from school to teachers or other school personnel, and (e) checking expiration dates on medical supplies. The majority of the tasks or situations related to diabetes management were perceived to have shared responsibility between parent(s) and child. The only area where the child was perceived to initiate or take responsibility was in noticing early signs of an insulin reaction (see Table 7).

DISCUSSION

The matched sets of parents (mothers and fathers) allowed comparisons of areas of similarities and differences between parents as they related to their children’s self-management of diabetes. Mothers and fathers in this study were actively involved in the care and management of their children.

Throughout, the results of mothers’ and fathers’ ratings (means) were high. Specifically, their overall ratings were high related to the children’s responsibility for self-management, style of care delivery, and mothers’ and fathers’ self-efficacy related to independently managing the specific tasks related to diabetes management. Mothers’ ratings (means) were similar but slightly higher than fathers’ ratings (means) in 11 of the 17 areas, with the 1 area of significant difference being deciding what should be eaten when the family has meals out. Eiser et al. (1992) demonstrated a similar pattern in investigating age and gender differences in adjustment to chronic disease in children suffering from one of five conditions, including diabetes. Their ratings of adjustment and disease-related restric- tions, obtained separately from mothers and fathers, found that fathers’ ratings did not contradict mothers’ ratings, although they were less dif- ferentiated. We would concur with Eiser et al. in their postulation that the differences may reflect fathers’ decreased involvement with the children and less realistic expectations about behavior and are characteristic of parents’ views of their children with or without chronic disease.

In all areas, mothers and fathers perceived that their children were average or above average for the amount of responsibility their children assumed for diabetes self-management compared with the average child

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82 B. J. Leonard el al.

with diabetes of the same age. In five of the six areas, mothers’ means were higher than fathers’ means, with no areas of significant difference. Of interest, the two areas rated highest by parents for children’s responsibility for self-management compared with the average child with diabetes the same age were the following: child assumes responsibility for insulin injection and child assumes responsibility for blood-glucose monitoring. Allen et a]. (1983) found in their study that parents attached particular significance to giving insulin injections as an indication of their children’s independence in diabetes management. Although results show that parents perceive their children as average or above average for responsibility, it is important that the parents stay actively involved in their support to their children and that the children are comfortable with the level of responsibility they have assumed (Follansbee, 1989; Frey & Fox, 1990).

The two factors that showed the most influence for both mothers’ and fathers’ perceptions in deciding how much responsibility their children should assume for diabetes self-management were social opportunity (meals, sleepovers, and day trips) and children’s temperament or personality. The fact that social opportunity was rated high as a motivating factor is a positive finding supportive of normal development for the age group studied. Parents may seek ways to normalize life for their children with diabetes, thus the children would need to assume responsibility for self- management in order for them to participate in age-appropriate social opportunities.

Although mothers’ perceptions were always greater than fathers’ perceptions, areas of significant difference in their perceptions of diabetes self-management for their children included how parent support group, social opportunity, and child’s temperament or personality influenced them in deciding how much responsibility their children should assume in self- management. The significant difference in mothers’ and fathers’ perceptions of support group influence is documented by Copeland and Clements (1 993), who identified that fathers used reasoning strategies more than mothers and mothers used releasing and relating (support groups) strategies more than fathers. McKeever (1981) also identified fathers’ hesi- tancy to use support groups.

Parents’ perceptions about the style of care delivery by the child’s health care providers were very similar. These are positive findings in that this type of health care experience could facilitate the process for transfer of care from parent to child both by role modeling and providing support to parents. Dashiff (1993) found that parents perceived the health care provider as supportive when the provider permitted them to express feelings and still recognized the parents’ competence and primacy in overseeing care. Again, although in all areas mothers’ perceptions were

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higher than fathers’ perceptions, the two areas that showed significant difference were disease orientation versus health orientation and focuses discussion only with adults versus addresses child (invites child’s input in decision making). The significant areas of difference may be explained by the fact that mothers usually have more interaction with health care providers and may be more sensitive to the style of care delivery. Copeland and Clements (1993) found that mothers used relating strategies more than fathers. Mothers are often more focused on day-to-day management, which may include health care encounters (McKeever, 1981). These highly favorable results invite closer examination of the health care delivery system philosophy and components and the health care provider and family interactions and relationships that are supportive of parents.

Overall findings showed that both mothers and fathers felt very confident in their ability to independently manage specific identified tasks related to diabetes management. This is a positive finding specific to their parental ability to independently manage the identified tasks related to their children’s diabetes. The high levels of perceived self-efficacy may affect which activities are attempted, the amount of effort put into the specific task, and the length of persistence when difficulties are encountered (O’Leary, 1985). Adolescence is a time when the routine of diabetes management may be disrupted, and mothers’ and fathers’ positive perceptions of self-efficacy may be a strength supporting their persistence and involvement with the process of successfully transferring care.

In all areas except one (“I can talk to my child about the realities of long-term complications without undue upset”), where mothers’ and fathers’ ratings were equal, mothers’ ratings were higher than fathers’ ratings. The areas having significant difference were adjusting child’s management plan based on activity level, teaching child to take increased responsibility for self-management, and adjusting child’s management plan to allow for overnight stay. A possible explanation for these significant differences is that mothers may do more day-to-day planning for their children with diabetes.

The two lowest rated areas for both mothers and fathers were I can adjust my child’s management plan when s/he gets a cold or the flu (mothers’ mean = 3.83, fathers’ mean = 3.59) and I can talk to my child about the realities of long-term complications without undue upset (mothers’ and fathers’ means = 3.69). It would not be unusual to expect parents to seek guidance for how to adjust the management plan when their children are sick, and therefore this may be one possible reason for a lower rating. One might expect that talking to children about the realities of long-term complications without undue upset may be difficult and possi- bly not even appropriate depending on the children’s developmental level

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and status of disease. Canam (1987) conducted a study that explored ways parents coped with the adaptive task of communicating their children’s chronic illness within the family. She found that although 74% of parents identified feelings they thought their children were experiencing about having a chronic illness, 81% said they did not talk to their children about their feelings. Reasons for this included that it did not occur to parents to talk to their children about their feelings, their lack of aware- ness of the need to explore the children’s feelings, and they did not want to make their children feel worse. Ninety-one percent of parents stated they had received no guidance related to talking to children about feelings related to their chronic illness (Canam, 1987).

When given a list of specific tasks or situations related to diabetes management, parents in this study perceived that they initiated or took primary responsibility for the following most of the time: (a) remembering day of clinic appointment, (b) making appointments with dentists and doctors, (c) telling relatives about diabetes, (d) explaining absences from school to teachers or other school personnel, and (d) checking expiration dates on medical supplies. Considering the sample age range of the children in this study was 8-14, parents would routinely assume responsibility for health care encounters for their children, for checking expiration dates on medical supplies, and for telling relatives about diabetes. It also would not be unusual for a parent to be the person responsible for explaining absences to school personnel, and it is likely they would be expected to relay the reason. The majority (10 out of 16) of the tasks or situations related to diabetes management were perceived to have shared responsibility between parent(s) and child. This is important as we look at self-care capacity for adolescents. The only area where the child was perceived to initiate or take responsibility was noticing early signs of an insulin reaction. This is an important area for the child to assume responsibility so that appropriate intervention can occur in a timely way. Children in this sample would be at a developmental age where one would expect them to be spending timc alone or with friends; therefore, being able to recognize signs of an insulin reaction would be a necessary survival skill.

This study had a homogeneous sample in terms of race, education, and occupation that may represent the children with Type I diabetes in this region. It should be noted that more than half of the children came from outside major metropolitan areas in the upper Midwest and were identified as rural. The factors contributing to their high ratings by both parents were not specifically identified but may be the result of the highly educated sample. Twenty mothers and 22 fathers had vocational-technical, some college, or a college education. In addition, children who attend camp may comprise a highly motivated group that is more likely to

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exhibit self-care behaviors (Saucier & Clark, 1993). The cross-sectional nature of the study should also be noted, specifically recognizing that these parent perceptions were obtained at one point in time and may vary over time (Rodrigue, Geffken, Clark, & Hunt, 1994). Using a larger sample would allow age group comparisons in terms of age at diagnosis and time since diagnosis and other potential influencing factors. Further, although mothers and fathers in this study had more areas of similarity than difference, we continue to support analyses of separate results in future studies as families are becoming increasingly diverse.

CONCL USION

The transfer of care from mothers and fathers to their children with any chronic illness is a complex process. Health care providers have the potential to affect this process and positively influence child outcomes. This study found both similarities and differences in the perceptions of mothers and fathers specific to their children’s self-management of diabetes. Health care providers can influence child outcomes by (a) realizing that parents may have different perceptions related to the care of their chijdren with diabetes and assisting parents in identifying the differences so improved spousal communication may enhance mutual support (Cope- land & Clements, 1993); (b) providing opportunities for both parents to express their feelings and to acknowledge their differences (Dashiff, 1993); (c) recognizing and supporting the role of the family in developing adolescent self-care abilities; (d) informing parents of the necessity to remain involved in the care of their children or adolescents with diabetes and providing them support while they negotiate the transfer of specific self- care tasks and management (Deatrick et al., 1994); (e) carefully assessing each individual child’s ability to take on self-care responsibilities and negotiating with families the gradual transfer of these responsibilities to the child (Giordano et al., 1992); and ( f ) encouraging a partnership relationship with the child where control by both are high and the partnership is characterized by collaboration and mutual support (Roter & Hall, 1992).

The parents in this study had high levels of perceived self-efficacy, which may have affected their high ratings. By planning strategies where parents can increase their skills and competence, perceived self-efficacy may become enhanced. For example, health professionals can encour- age parents to openly discuss concerns with them so they can address and alleviate these concerns and offer guidance in identifying and using parental strengths in the management of their children’s illness (Rodrigue et al., 1994). Family-centered care can be fostered when health professionals assess mothers’ and fathers’ perceptions rather than

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basing interventions on what they themselves perceive as best (Copeland, 1993).

REFERENCES

Allen, D. A., Tennen, H., McGrade, B., Affleck, G., & Ratzan, S. (1983). Parent and child perceptions of the management of juvenile diabetes. Journal of Pediatric Psy-

Anderson, B. J., Auslander, W. F., Jung, K. C., Miller, J. P., & Santiago, J. V. (1990). Assessing family sharing of diabetes responsibilities. Journal of Pediatric Psychol- ogy, 15(4), 477-492.

Beckman, P. J. (1991). Comparison of mothers’ and fathers’ perceptions of the effect of young children with and without disabilities. American Journal on Mental Retarda- tion, 95(5), 585-595.

Canam, C. (1987). Coping with feelings: Chronically ill children and their families. Nursing Papers, I9(3), 9-2 I .

Copeland, L. G. (1993). Caring for children with chronic conditions: Model of critical times. Holistic Nurse Practitioner, 8( I) , 45-55.

Copeland, L. G., & Clements, D. B. (1993). Parental perceptions and support strategies in caring for a child with a chronic condition. Issues in Comprehensive Pediatric Nursing, 16, 109-1 2 1.

Cummings, S. T. (1976). The impact of the child’s deficiency on the father: A study of fathers of mentally retarded and of chronically ill children. American Journal of Orthopsychiatry, 46( 2), 246-255,

Dashiff, C. J. (1993). Parents’ perceptions of diabetes in adolescent daughters and its impact on the family. Journal of Pediatric Nursing, 8(6), 361-369.

Deatrick, J. A., Angst, D. B., & Madden, M. (1994). Promoting self-care with adolescents. Capsules & Comments in Pediatric Nursing, 1(2), 11-20.

Eiser, C., Havermans, T., Pancer, M., & Eiser, I. R. (1992). Adjustment to chronic disease in relation to age and gender: Mothers’ and fathers’ reports of their childrens’ behavior. Journal of Pediatric Psychology, I7(3), 261-275.

Follansbee, D. S. (1989). Assuming responsibility for diabetes management: What age? what price? The Diabetes Educator, 15(4), 347-353.

Frey, M. A., & Fox, M. A. (1990). Assessing and teaching self-care to youths with diabetes mellitus. Pediatric Nursing, 16(6), 597-599.

Giordano, B. P., Petrila, A,, Banion, C. R., & Neuenkirchen, G. (1992). The challenge of transferring responsibility for diabetes management from parent to child. Journal of Pediatric Health Care, 6, 235-239.

Johnston, C. E., & Marder, L. R. (1994). Parenting the child with a chronic condition: An emotional experience. Pediatric Nursing, 20(6), 61 1 4 1 4 .

McKeever, P. T. (1981). Fathering the chronically ill child. MCN, 6, 124-128. Moos, R. H., & Moos, B. S. (1986). Family environment scale manual (2nd ed.). Palo

O’Leary, A. (1985). Self-efficacy and health. Behavior Research and Therapy, 23(4),

chology, 8(2), 129-141.

Alto, CA: Consulting Psychologists Press.

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Documents

Comparison of Mother-Father Perceptions of their Child's Self-Management of Diabetes