ORIGINAL RESEARCH
Heal h, unc ionali y, and social suppo in amilies
wi h a child wi h a neu ode elopmen al diso de –
a pilo s udy
This a icle was published in he ollowing Do e P ess jou nal:
Neu opsychia ic Disease and T ea men
Diana Ca onius-
Rin ahaka
1,2
Anna Liisa Aho
3
A ja Vou ilainen
2
E a Bills ed
1
Ch is ophe Gillbe g
1
1
Gillbe g Neu opsychia y Cen e,
Ins i u e o Neu oscience and Physiology,
Uni e si y o Go henbu g, Sahlg enska
Academy, Go henbu g, Sweden;
2
Child
Psychia y, Neu opsychia ic Uni ,
Helsinki Uni e si y Hospi al (HUH),
Helsinki, Finland;
3
Facul y o Social
Sciences, Nu sing Science, Uni e si y o
Tampe e, Tampe e, Helsinki
In oduc ion: Se e al s udies ha e epo ed ha ha ing a child wi h a neu ode elopmen al
diso de (NDD) inc eases pa en al s ess and ha pa en al psychosocial unc ioning influ-
ences child`s de elopmen and beha io . I is unclea how pa en s o child en wi h NDD
expe ience amily unc ionali y, amily heal h and ecei e suppo and i he e a e di e ences
be ween expe iences o mo he s and a he s.
Me hods: Families wi h child en e e ed o a neu ocogni i e uni we e in i ed o he s udy.
A modified e sion o he FAmily Func ionali y, HEal h, and Social suppo (FAFHES)
ques ionnai e was used. Open-ended ques ions we e also included.
Resul s: Pa en s a ed hei social suppo lowe han hei amily unc ionali y and amily
heal h. Family unc ionali y co ela ed posi i ely wi h amily heal h. No significan di e -
ences we e ound be ween mo he s’and a he s’expe iences. A h ee-mon hs es - e es
using he FAFHES showed no significan change in a ings o amily unc ionali y, amily
heal h, and social suppo .
Conclusions: Family unc ionali y was connec ed o amily heal h in amilies wi h a child
wi h NDD. Mo he s and a he s expe ienced hei amily heal h, amily unc ionali y, and
ecei ed social suppo in simila ways.
Keywo ds: pa en s, amily heal h, amily unc ionali y, social suppo , neu ode elopmen al
diso de s
In oduc ion
Neu ode elopmen al diso de (NDD) is a e m used o desc ibe neu ological and
psychia ic diso de s wi h onse in ea ly childhood. NDD includes lea ning and
language diso de s, mo o coo dina ion diso de s, in ellec ual disabili ies, au ism
spec um diso de (ASD), a en ion-defici /hype ac i i y diso de (ADHD), ic dis-
o de s, and opposi ional defian diso de (ODD). Como bidi ies a e common and
include sleeping diso de s, eeding p oblems, and a ious senso y p ocessing p o-
blems. A change o symp om/de elopmen al p ofile may occu du ing he child-
hood pe iod
1
which is emphasized in he concep o ESSENCE (Ea ly Symp oma ic
Synd omes Elici ing Neu ode elopmen al Clinical Examina ions) coined by
Gillbe g.
1,2
All NDDs a e included unde he ESSENCE umb ella. A leas one in
en o all child en has a diagnosable NDD.
ADHD mani es s in he pa en s o siblings o child en wi h an ADHD diagnosis
2–8 imes mo e equen ly han in he popula ion in gene al.
3
On a e age, he
he i abili y o ADHD has been epo ed o be a ound 70%.
4,5
Gene ics ha e an
Co espondence: Ca onius-Rin ahaka, D
Gillbe g Neu opsychia y Cen e,
Ins i u e o Neu oscience and Physiology,
Uni e si y o Go henbu g, Sahlg enska
Academy, Go henbu g, Sweden
Tel +35 840 555 1511
Email diana.ca onius@hus.fi
Neu opsychia ic Disease and T ea men Do ep ess
open access o scien ific and medical esea ch
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impo an ole in he e iology o ASD
6
and he i abili y o
ASD is es ima ed o be app oxima ely 80%.
7
Consequen ly, ha ing a child wi h NDD o en means ha
o he membe s o he amily need suppo since he pa en
and/o one o se e al o he siblings in he amily a e
likely o also ha e NDD o symp oms o NDD.
8
Raising a child wi h NDD p esen s special challenges.
Compa ed o pa en s wi h “ ypically”de eloping child en,
s ess le els and pa en al i edness a e highe /mo e e-
quen . This a ec s amily unc ioning.
8,9
Pa en al s ess
appea s o be e en mo e p onounced when he child has an
NDD wi h high le el o como bidi y,
10,11
and also when
pa en s a e olde .
11,12
Inc eased a es o dep ession
13,14
and o dep essi e pe sonali y diso de ha e also been
epo ed in pa en s o child en wi h NDD compa ed o
pa en s o “neu o ypical”child en.
15,16
On he o he
hand, pa en al psychosocial heal h and amily dys unc ion
influence he child’s de elopmen ega dless o whe he
he child has NDD o no .
17,18
Families wi h child en wi h NDD benefi om pa en al
educa ion p og ams. These should ocus on enhancing
pa en communica i e skills, p o ide psycho-educa ion
and beha io al managemen s a egies.
19
In e en ions
should also aim o help pa en s esol e possible emo ional
conflic s associa ed wi h hei child’s diagnosis
20
and p o-
mo e hei own psychosocial well-being.
18
Acco ding o some s udies, he e a e di e ences be ween
mo he s’and a he s’ways o cope wi h hei child’sdiag-
nosis and wi h s ess ul li e e en s o example.
12
In summa y, pa en al s ess, amily dynamics, and amily
unc ionali y a e key issues o be conside ed when designing
in e en ions o amilies wi h child en wi h NDD.
21,22
Howe e , he e is need o mo e knowledge ega ding how
amilies wi h a child wi h NDD a e managing hei daily li es.
In his s udy o amilies wi h child en wi h NDD, we
ocused on he pa en s’subjec i e pe spec i e on hei own
amily heal h, amily unc ionali y, and on ecei ed suppo
and wha expec a ions hey ha e ega ding suppo . We also
wan ed o explo e whe he mo he s and a he s had di e en
o simila pe spec i es, and whe he pa en al age had an
impac . We used he FAmily Func ionali y, HEal h, and
Social suppo (FAFHES) ques ionnai e ha has been mod-
ified o use – o he fi s ime –in his a ge g oup.
P e iously, FAFHES has been used only in amilies wi h
ca diac pa ien s and pedia ic in ensi e ca e pa ien s.
23,24
The FAFHES is a check-lis s yle ques ionnai e p o iding
quan i a i e da a. We also included some open-ended – ee-
w i ing –ques ions o quali a i e analysis.
The fi s aim o he s udy was o epo he expe iences
o pa en s o child en wi h NDD in e ms o amily unc-
ionali y, amily heal h, and ecei ed suppo and hei asso-
cia ion wi h backg ound da a using he modified FAFHES
ques ionnai e. We a e pa icula ly in e es ed in how amily
heal h and unc ion co ela e wi h pe cei ed social suppo .
The second aim was o s udy o e a h ee-mon h pe iod
whe he he e we e any changes in pa en s’expe ience o
amily unc ionali y, heal h, and social suppo . The hi d
aim was o s udy pa en s’opinions abou hei expec a ions
ega ding suppo om heal h p o essionals.
Me hods
P ocedu e
The da a we e collec ed a he neu ocogni i e ou pa ien clinic
o he Child Neu ology depa men a Helsinki Uni e si y
Hospi al (HUH), which p o ide mul idisciplina y assessmen s
pe o med by child neu ologis s, neu opsychologis s, nu ses,
occupa ional he apis s, speech he apis s, and social wo ke s.
A e assessmen a HUH, a habili a ion is ca ied ou wi hin
HUH o a a clinic wi hin he p ima y heal h ca e sys em.
Pa en s o child en e e ed o he neu ocogni i e clinic
a HUH o he fi s ime we e in i ed o ake pa in he
s udy when hey me he ollowing inclusion c i e ia: bio-
logical pa en o legal gua dian li ing wi h a child (age
4–16 yea s) wi h suspec ed NDD, and ha ing good lan-
guage skills in Finnish, Swedish, o English and isi ing
HUH o he fi s ime. T ained nu ses a he clinic ga e
o al and w i en in o ma ion abou he s udy o he pa en s
a he fi s isi and in i ed hem o pa icipa e in he s udy.
Pa icipa ion in he s udy included comple ing he
FAFHES ques ionnai e (wi h some open-ended ques ions)
ha was mailed o bo h pa en s a e w i en in o med
consen had been ob ained. The en elope also included
a p epaid en elope o e u ning he ques ionnai es by
mail. Those who app o ed and comple ed he FAFHES
ques ionnai e a he inclusion o he s udy ecei ed an
addi ional FAFHES ques ionnai e o comple ion h ee
mon hs la e . Reminde was sen o pa en s who did no
e u n he second FAFHES ques ionnai e a e 3 mon hs.
Pa icipan s
The numbe o amilies who ecei ed de ailed in o ma ion
abou he s udy and who ag eed o pa icipa e was 67.
Howe e , only 29 (43%) o hese amilies ac ually sen
back comple ed FAFHES ques ionnai e in he fi s ound
o da a collec ion (Time 0 mon hs). In o al, 46 comple ed
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FAFHES ques ionnai es we e e u ned (by 29 mo he s and
17 a he s). The g oup which did no e u n he ques ion-
nai e was e y simila in e ms o child en`s diagnosis,
gende , and age wi h he pa icipa ing g oup. (Table 2)
Fo he h ee-mon hs ollow-up s udy (Time 3 mon hs),
18 amilies (62% o hose who pa icipa ed a Time
0 mon hs, 18 mo he s and 9 a he s) comple ed he
FAFHES.
Families aking pa o his s udy had child en a he
neu ocogni i e ou pa ien clinic o he Child Neu ology
depa men a HUH wi h ollowing NDD diagnoses:
delayed miles one, speech and language diso de , specific
lea ning diso de , de elopmen al coo dina ion diso de ,
mixed specific de elopmen al diso de , au is ic diso de ,
a en ion defici /hype ac i i y diso de , selec i e mu ism,
Tou e es synd ome, and phobic anxie y diso de (Table 2).
Ins umen used
The FAFHES ques ionnai e
25
was de eloped o pa ien s
wi h ca diac disease and hei amily membe s wi h a iew
o s udying hei expe iences ega ding amily unc ional-
i y, heal h, and he social suppo ecei ed om s a a
a hospi al uni . The FAFHES has been es ed since 2002,
26
and used in se e al clinical con ex s.
23,27–29
The FAFHES ins umen was modified o his s udy so
as o be applicable in amilies o child en wi h NDD. The
pe mission o use and modi y he ins umen was ob ained
om he copy igh holde s.
In he modified FAFHES, ce ain ques ions ha e been
changed ( o example, he i em n .53 “Conce n o he ill
amily membe ’s condi ion causes dis ess in o he amily
membe s”was changed o “The child’s symp oms gi e
ise o s ess in o he amily membe s”). In his s udy,
he FAFHES was used as a pa en ques ionnai e.
The fi s sec ion in he modified FAFHES ins umen is
ela ed o demog aphic (age, ma i al s a us, and educa ional
le el) and backg ound da a (quali y o amily ela ionship,
and men al heal h p oblems in he amily, and how his
a ec s he amily). In his modified e sion, addi ional
demog aphical i ems we e added such as he equency o
NDD in he amily. Backg ound a iables ha we e
included in he analysis o associa ion o amily unc ion-
ali y, amily heal h, and social suppo we e age o he
pa en , numbe o siblings o he index child, quali y o
he ela ion be ween pa en s (Like scale 1–5, 1=excellen ,
5= e y poo ), expe ience o own cu en heal h (Like
scale 1–5, 1=excellen , 5=ex emely bad), age o onse o
neu ocogni i e diso de p oblems in he index child, and
expe ience o s eng h in being a pa en (Like scale 1–5,
1=ex emely well, 5=ex emely poo ly).
The FAFHES hen con inues wi h h ee addi ional sec-
ions: 1) Family unc ionali y (19 i ems), 2) amily heal h
(23 i ems), and 3) social suppo p o ided by p o essionals
(21 i ems). The i ems a e measu ed on Like - ype scale
anging om 1 (I disag ee o ally) o 6 (I ag ee o ally). The
in e nal consis ency o he scale on he basis o C onbach`s
alpha alues was. 78-0.98. The modified FAFHES ques ion-
nai e also included h ee open-ended ques ions: 1) Wha kind
o hopes and expec a ions do you ha e o he s a when hey
mee you and hose close o you? 2) How would you like o
de elop he amily in e en ions p o ided by he s a ? 3) Is
he e any hing else ha you would like o add?
Da a analysis
S a is ical analysis was conduc ed wi h SPSS e sion 23.
Desc ip i e s a is ics we e used o desc ibe he la ge numbe
o quan i a i e da a om FAFHES ques ionnai es. Family
unc ionali y, amily heal h, and social suppo domain a i-
ables a e epo ed om he pa en s' combined pe spec i es,
bu also mo he s’and a he s’sepa a e pe spec i es. The
ela ionship be ween FAFHES domains was in es iga ed
using Pea son co ela ion coe ficien , and Spea man co e-
la ion was used in s udying backg ound a iables and
FAFHES domains. Di e ences be ween amily heal h,
amily unc ionali y, and social suppo domains we e ana-
lyzed using Pai ed Samples - es , which could be used
since he da a we e no mally dis ibu ed. The Mann–
Whi ney es was used o dicho omous a iables, and he
K uskall–Wallis es o ca ego ical a iables. The alpha
le el o s a is ical significance was se a p io i a 0.05.
The h ee addi ional semi-s uc u ed open-ended ques-
ions we e analyzed ollowing a esea ch p ocedu e using
induc i e con en analysis.
30
P edefined a iables we e no
iden ified in ad ance. Pa en s’w i en esponses we e ead
and ex ha was ele an o he esea ch ques ion was
highligh ed. A he nex s age, simila sen ences we e
iden ified and classified o a “subca ego y”(g ouping and
combining simila o ela ed answe s) and named close o
he ac ual con en ecei ed. Di e en hemes we e iden i-
fied and subca ego ies we e c ea ed. In he las s age,
“main ca ego ies”we e c ea ed om he subca ego ies
ocusing on simila i ies and di e ences close o he con-
en ecei ed. The esul s a e p esen ed as ou main ca e-
go ies (Table 4). S eps included in he quali a i e analysis
p ocedu e we e:
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1. Reading he esponses.
2. W i ing all esponden s’answe s unde he h ee
open-ended ques ions.
3. C ea ing condensed meaning uni s (desc ip ion
close o he ex = educ ion).
4. G ouping and combining simila o ela ed answe s.
5. Iden i ying hemes and c ea ing subca ego ies.
6. C ea ing main ca ego ies.
E hical app o al
The Medical E hical Commi ee o Helsinki Uni e si y
Cen al Hospi al app o ed he s udy (106/13/03/03/2012).
All p ocedu es pe o med in he s udy we e in acco dance
wi h he e hical s anda ds o he ins i u ional esea ch
commi ee and wi h he 1964 Helsinki decla a ion and i s
la e amendmen s o compa able e hical s anda ds.
In o med consen was ob ained om all pa icipan s
included in he s udy.
Resul s
Demog aphic and backg ound da a o
pa en s and child en
Mean pa en al age was 40.5 yea s (SD=5.3), e y simila o
mo he s and a he s. The majo i y (87%) o he 29 amilies
we e ma ied o cohabi ing (Table 1), and 41% o he pa en s
desc ibed he ela ion wi h he o he pa en as excellen . The
majo i y o he pa en s (85%) epo ed hei own heal h being
e y good o good. Ten amilies (22%) epo ed ha ing one
o mo e han one amily membe wi h a NDD. The majo i y
o he pa en s (76%) a ed “ex emely/qui e well”on he i em
“How a e you managing as a pa en in daily li e?”(Table 1).
In all, 30% had isi ed ano he clinic o hospi al
ega ding hei child’s NDD symp oms be o e coming o
he neu ocogni i e clinic a HUH, bu o 70% o he
amilies he isi o HUH was hei fi s con ac wi h
a clinic o hei child’s NDD. A he ime o he s udy,
he numbe o isi s o he HUH anged om 1 o 3 in he
s udy g oup.
Du ing he day ime, he child en we e ei he a school
(n=16, 55% o he whole g oup), a dayca e (n=10, 35%),
o a home (n=3, 10%). The diagnoses o he child en a
he HUH a ied (Table 2). The majo i y o he pa en s
(63%) epo ed ha he NDD symp oms o en a ec ed
hei child en`s daily li e.
Table 1 Demog aphic da a o he s udy g oup.
n%
Rela ionship
Mo he s/ a he s 29/
17
63/
37
Age o pa en s (mean age 40.5, SD 5.3)
<40-yea s old 19 41
≥40 -yea s old 26 56
Ma i al s a us
Ma ied/cohabi ing 40 87
Do no li e oge he (including 1 widowed) 6 13
Quali y o he ela ionship be ween pa en s
Excellen 19 41
Good 17 37
Mode a e 7 15
Poo / e y poo 2 4
Basic educa ion o pa en s
Comp ehensi e school 14 30
Ma icula ion examina ion 30 65
P o essional educa ion
No oca ional qualifica ion 4 9
Basic-le el qualifica ion 4 9
College-le el educa ion 14 30
Uni e si y deg ee/academic deg ee 23 50
Numbe s o child en in amily o ally
1 child 2 4
2 child en 20 43
3 child en 11 24
>4 child en 11 24
O he membe s o he amily ha e
neu ocogni i e diso de s o diagnoses?
Yes 10 22
No 34 74
Pa en s sel - epo ed heal h
Ve y good/good 39 85
Mode a e 6 13
Poo / e y poo 1 2
How a e you managing as a pa en in daily li e?
Ex emely/qui e well 35 76
Mode a e 10 22
Ra he /ex emely poo ly 1 2
Long- e m illnesses o neu opsychia ic
diso de s
Yes 10 22
No 35 76
No e: Numbe o he pa icipan s (N=46).
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Pa en s’expe ience o amily unc ionali y,
heal h, and social suppo
The mean sco e o amily unc ionali y was 4.6 (SD=0.8), o
amily heal h 4.4 (SD=0.7), and o social suppo 3.7
(SD=1.3). No s a is ically significan di e ences we e ound
be ween mo he s and a he s in FAFHES (Table 3). The e was
a s ong posi i e co ela ion be ween amily unc ionali y and
amily heal h ( =0.75, n=46, p<0.001), a medium co ela ion
be ween amily heal h and social suppo ( =0.36, n=43,
p=0.019) whe eas he co ela ion be ween social suppo and
amily unc ionali y was non-significan ( =0.19, n=43,
p=0.224) (Table 3).
Associa ions be ween backg ound da a
and FAFHES domains
No co ela ion was ound be ween pa en al age and
FAFHES o amoun o siblings and FAFHES. Nega i e
co ela ions we e ound be ween amily unc ionali y and
quali y o ela ions be ween pa en ( s=−0.643, n=45,
p<0.001), expe ience o own heal h ( s=−0.552, n=46,
p<0.001), and age o onse neu ocogni i e diso de p oblems
( s=−0.374, n=43, p=0.014). Nega i e co ela ions we e also
ound be ween amily heal h and quali y o ela ions be ween
pa en ( s=−0.331, n=45, p=0.026), and expe ience o own
heal h ( s=−0.420, n=46, p<0.001). Finally, expe ience o
s eng h in pa en hood co ela ed o amily heal h
( s=−0.724, n=46, p<0.004) and amily unc ionali y
( s=−0.636, n=46, p<0.001).
FAFHES ollow-up o e a h ee-mon h
pe iod
The FAFHES shows no s a is ically significan changes in
pa en s’expe ience o amily unc ionali y, heal h, and
social suppo be ween he wo measu es pe o med o e
h ee-mon h pe iod (Table 3).
Open-ended ques ions
Resul s o he open-ended ques ions pa o he s udy we e
p esen ed as ou main ca ego ies ha illus a e pa en s’hopes
and expec a ions owa ds heal h ca e p o essionals (Table 4).
The fi s main ca ego y “Pa en s wan dialogue”
included he ollowing subca ego ies “In e ac ion wi h
s a ”,“Communica ion be ween p o essionals a school,
dayca e and hospi al”,“Hope o be lis ened o”, and “Hope
o ge mo e ime om pe sonnel”. Pa en s w o e o exam-
ple “I hope o ha e mo e ime o discussion wi h s a ”.
Table 2 Cha ac e is ics o he child en aking pa in he s udy
(n=29) and o he child en no aking pa in he s udy (n=36).
Pa icipa ing g oup Non-
pa ici-
pa ing
g oup
n% n%
Age o child ( ange 4.6–16.1, SD
3.2, a e age age 8,5)
<7 yea s old 11 38% 12 33%
≥7 yea s old 18 62% 24 67%
Gende o child
Gi l 5 17% 9 25%
Boy 24 83% 27 75%
Day ime ac i i y o child
In dayca e 10 35%
A school 16 55%
O he 3 10%
Reasons o child e e al
Delayed miles one 2 7% 7 19%
Speech and language diso de s 3 10% 5 14%
Specific lea ning diso de 8 29% 9 25%
De elopmen al coo dina ion
diso de
13%13%
Mixed specificde elopmen al
diso de s
6 21% 7 19%
Au is ic diso de 4 14% 1 3%
A en ion- defici /hype ac i i y
diso de
2 7% 4 11%
Selec i e mu ism 1 3% 0 0%
Tou e e synd ome 1 3% 1 3%
Phobic anxie y diso de 1 3% 0 0%
No diagnosis 0 0% 1 3%
Fi s conce n acco ding o pa -
en s abou child neu opsychia-
ic p oblems
1-3 yea s 20 43%
>3–7 yea s 23 50%
The child’s neu opsychia ic
p oblems a ec his/he daily li e
(n=46 pa en s)
No symp om/ha dly any symp oms 13 28%
Symp oms occasionally 10 22%
Symp oms o en 29 63%
Symp oms dis u bing all he ime 2 4%
Visi o he clinic/hospi al o his/
he neu ocogni i e diso de
ea lie
Yes 14 30%
No 32 70%
(Con inued)
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“We wan open communica ion in bo h di ec ions du ing
he child`s e alua ion p ocess a he hospi al”.
“We hope ha he s a has a genuine abili y o lis en o he
pa en s”.
The second main ca ego y is “Pa en s wan mo e knowl-
edge and suppo in daily li e“including subdomains “Need o
ge knowledge abou he child’s symp oms and ca e”,“Need o
ge knowledge abou how o suppo he child’sde elopmen ”,
“Suppo o daily li ing”,and“Economical suppo and pos-
sibili ies o pee suppo ”. One pa en w o e “I hope o ge
in o ma ion abou habili a ion possibili ies o he child”.
“We wan somebody o come home and obse e and
gi ing us conc e e guidance in daily li e”.
“We hope somebody ells us abou he child`s diagnose
and ells us wha we need o do as pa en s”.
The hi d main ca ego y was “Pa en s hope o ge
compe en s a o hei child and amily”including sub
domains “P o essional s a ”and “O ganized/well
planned ca e”. One pa en w o e, “we hope he pe son-
nel highligh he s eng hs o he child and suppo he
child’s sel -es eem”.
“We wan p o essionals, who know abou NDD and
ells us wha is going o happen in be o ehand abou
e alua ion-, ca e-, and ehabili a ion p ocesses”.
The ou h main ca ego y was “Pa en s hope he whole
amily o be included by heal h p o essionals”including
subca ego ies “All amily membe s need a en ion”,
“Conc e e help”, and “To belie e in omo ow”. One
example om a pa en is “We need knowledge abou
how he amily as whole finds he s eng h o ca y on”.
“We wan o know whe e o ge help o he whole
amily”.
“The amily si ua ion is always including all amily
membe s and we hope o ge help as a amily”.
Discussion
The esul s om his s udy sugges ha in amilies wi h
child en wi h NDD amily heal h is connec ed o he
expe ience o amily unc ionali y. Family heal h is
a ec ed posi i ely i eg esponsibili ies conce ning amily
cho es a e di ided e enly in he amily and e e yone in
he amily pa icipa es. Fu he mo e, he expe ience o
ecei ing social suppo om ou side he amily ma e s
ega ding he amily heal h. This is in line wi h wha
Du y
31
has p oposed, ha in e nal amily dynamics and
ex e nal en i onmen al ac o s in e ela e and a ec he
heal h p omo ion beha io s inside he amily. Posi i e,
al hough weak co ela ion, was also ound in ano he
s udy using FAFHES in pedia ic in ensi e ca e be ween
social suppo gi en by nu ses and amily heal h expe i-
enced by pa en s.
23
In addi ion, ea lie s udies using
FAFHES in amilies o adul pa ien s wi h ca diac disease
epo an associa ion be ween amily heal h and amily
unc ionali y.
32
Howe e , we ound no co ela ion be ween
social suppo and amily unc ionalli y which would ha e
been expec ed conside ing he gene al knowledge and
imp ession o he impo ance o suppo . Also, he pa en s'
quali a i e esponses highligh ed he need o social sup-
po in hei pa en hood. This sugges s ha o he ac o s
han social suppo , in addi ion o amily heal h, migh
ha e an impac on unc ionali y in amilies wi h child en
Table 3 FAFHES ques ionnai e a baseline and h ee-mon hs la e .
Subdomains To al
n=42–46
Mo he s
n=29
Fa he s
n=17
p- alue 3 mon hs
n=27
p- alue Mo he s*
n=17
p- alue
Mean (SD) Mean (SD) Mean (SD) Mean (SD) Mean (SD)
F Func ion 4.6 (0.8) 4.5 (0.9) 4.6 (0.6) 0.793 4.3 (0.6) 0.119 4.6 (0.9) 0.760
F Heal h 4.4 (0.7) 4.4 (0.7) 4.6 (0.6) 0.586 4.2 (0.6) 0.056 4.3 (0.7) 0.198
S Suppo 3.7 (1.3) 3.8 (1.3) 3.5 (1.3) 0.576 3.5 (1.3) 0.158 3.7 (1.1) 0.591
No e: *Pai ed sample - es be ween mo he s (n=17) and a he s (n=17) o he same child.
Table 2 (Con inued).
Pa icipa ing g oup Non-
pa ici-
pa ing
g oup
n% n%
Numbe o isi s o he clinic/
hospi al
Once 5 36%
Twice 4 29%
≥3 imes 5 36%
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Table 4 Resul s o he open-ended ques ions p esen ed as ou main ca ego ies ha illus a e pa en s’hopes and expec a ions
owa ds heal h ca e p o essionals.
Reduc ion Sub ca ego y Main ca ego y
In e ac ion abou /du ing he child’s clinical isi
and he apies
In e ac ion wi h s a
Mee ings
Regula appoin men s
Open communica ion Communica ion be ween p o essionals in
school, dayca e, and hospi al
Open a i ude Pa en s wan dialog
How o each igh p o essionals
Taking pa en conce ns se iously Hope o be lis ened o
S a o ha e abili y o lis en
S a o suppo pa en s` opinions i p oblems in
school
Mo e ime o discussion Hope o ge mo e ime om pe sonnel
S a o ha e ime o pa en s
Knowledge abou neu ocogni i e symp oms Need o ge knowledge abou he child’s
symp oms and ca e
Knowledge abou he diagnosis
Knowledge abou he child’s symp oms
Knowledge abou child’s medica ion
Knowledge abou examina ions
Knowledge abou he educa ional possibili ies Need o ge knowledge abou how o suppo
he child’s de elopmen
Knowledge abou hobbies
Knowledge abou habili a ion Pa en s wan mo e knowledge and suppo
in daily li e
Knowledge abou how o help he child wi h
lea ning di ficul ies
Knowledge abou how o ell he child abou
lea ning di ficul ies
In o abou how o suppo he child wi h language
p oblems
Knowledge abou pa en ing issues
Pa en ing ad ice o pa en s
Knowledge abou how o help child manage
independen ly
Suppo o daily li ing
Tips how o manage daily li ing a home and
dayca e
Conc e e help o daily li ing
Conc e e help o daily demanding si ua ions
Ad ice how o habili a e he child a home
Help o make ou ines o he whole amily
Knowledge abou social benefi s Economical suppo and possibili ies o pee
suppo
Guidance o find pee g oups
Examples abou o he simila amilies
Educa ed s a P o essional s a
Compe en s a
(Con inued)
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wi h NDD. Fo example, we ha e no s udied i he pa en s
hemsel es had NDD defici s which migh ha e an impac
on pa en hood and which is likely conside ing he he i -
abili y o NDD diso de s.
Pa en s o he child en wi h NDD who isi ed he
neu ocogni i e uni s a HUH o he fi s ime epo ed
amily unc ionali y o be gene ally qui e good. The ac
ha he ela ionship be ween pa en s was assessed as qui e
good migh sugges ha he pa en s suppo each o he in
hei pa en hood. Pa en s’own opinions abou ha ing
s eng h du ing pa en hood seems o be connec ed o
hei opinion o ha ing good heal h and good ela ionship
wi h he o he pa en . Simila esul s we e epo ed om
pedia ic in ensi e ca e as he main ou come whe e pa en s
using FAFHES conside ed hei amily unc ioning and
heal h o be good.
23
No s a is ically significan di e ence was ound in his
s udy be ween a he s and mo he s, al hough s udies made
be o e ha e shown he di e ences be ween pa en s eg,
quali y o li e and s ess expe iences and also unique
suppo needs.
33,34
Reilly and colleagues
35
ha e in hei
s udy epo ed eg, how epilepsy o young child en can
ha e a e y significan impac on pa en al well-being and
how mo he s pa icula a e being a isk. The same epo
sugges s sc eening o men al heal h p oblems on a egula
basis in pa en s o child en wi h epilepsy.
35
Ano he s udy
shows a he s a ing hei child en as ha ing less p oblems
han mo he s.
36
The e a e also findings ha sugges ha
dep essi e symp oms ound in mo he s o child en wi h
ASD may be a ibu ed bo h o he inc eased s ess o
aising a child wi h ASD as well as au is ic ea u es in
he mo he s.
37
These kinds o findings did no appea in
ou s udy.
I is known ha pa en s’pe cep ions o amily unc-
ionali y a e o en a ec ed by he symp oms o o he
amily membe s.
38
This s udy emphasizes he pa en al
pe spec i e and how NDD o en a ec s he whole amily.
Family unc ionali y and he emo ional clima e in he
amily a e significan ac o s ega ding amily heal h.
Maybe his is he eason why pa en s in his s udy
exp essed hei hopes o he whole amily o be no iced
and aking in o conside a ion as a uni . Mo eo e , acco d-
ing o hese pa en s, siblings si ua ion in he amilies need
mo e a en ion.
Pa en s exp essed he need o addi ional communica-
ion and conside ed he dialogue wi h p o essionals con-
ce ning hei child as e y impo an . By main aining
a dialogue wi h he pa en s, he amily pe spec i e can
be included and a deepe unde s anding o he child is
p o ided.
Table 4 (Con inued).
Reduc ion Sub ca ego y Main ca ego y
Guidance in English
Guidance in Swedish
S a o keep p omises Pa en s hope o ge compe en s a o hei
child and amily
Highligh he child´s s eng hs O ganized/well planned ca e
Suppo sel es eem
Sys ema ically o ganized ca e
Clea ime schedules
Hope abou no icing he whole amily All amily membe s need a en ion
Hope ha somebody would a ange ee ime o
he pa en s as couple
Knowledge abou how he amily as whole can
find he s eng h o ca y on
Pa en s hope he whole amily o be
included by heal h p o essionals
Help om amily wo ke s Conc e e help
Suppo o couple ela ionship
Childca e help
To ge some help as pa en o find he s eng h o
ca y on
To ge some help in belie ing in u u e To belie e in omo ow
To ge suppo as a pa en
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The open-ended ques ions apped in o he pa en s’hopes
and expec a ions. Al hough pa en s el hey managed well
as pa en s, hey all had simila hopes abou mo e collabo a-
ion be ween p o essionals. This has also been confi med in
o he s udies.
39–41
Pa en s hope o p ac ical guidance in
hei daily li e, o ad ice and conc e e aid in how o deal
wi h daily demands in aising hei child. Pa en s also hoped
o mo e indi idualized amily ocused heal hca e such as
indi idualized in o ma ion ega ding he child. Pa en s
u he exp essed he need o ailo ed suppo o all amily
membe s, and o pee suppo om o he amilies wi h
child en wi h simila symp oms. This was men ioned as an
impo an “pa en hood s eng hening ac o ”.
A sys ema ic e iew by Goode and colleagues
42
e ealed ha despi e he wide use o se e al pa en p o-
g ammes and in e en ion app oaches, he e a e s ill sig-
nifican gaps in knowledge ega ding he e ec i eness o
ADHD nonpha macological ea men s. The in o ma ion
deli e ed by pa en s in his s udy can fill an impo an
gap o knowledge when de eloping in e en ions o his
a ge g oup.
The s udy showed ha FAFHES ques ionnai e esul s
ob ained h ee mon hs a e he ini ial ound yielded simi-
la esul s as a he fi s ime. This sugges s ha amily
unc ionali y and heal h did no imp o e du ing he h ee-
mon h-pe iod, e en hough amilies ecei ed an assess-
men o he child and a habili a ion plan. Possible explana-
ions o his a e ha h ee mon hs o ollow-up is no long
enough o mo e posi i e changes in unc ionali y and
heal h ac o s in he amilies, o ha diagnosis/in e en ion
o he child does no a ec amily unc ionali y o heal h.
Limi a ions
A majo limi a ion o he s udy is he e y conside able
a i ion, and only 43% o he amilies who ag eed o
pa icipa e ac ually comple ed he FAFHES ques ionnai e.
Howe e , he e was no ob ious di e ence be ween ques-
ionnai e comple e s and non-comple e s. Ne e heless, i
is known om o he s udies ha , o e all, amilies wi h
ce ain ypes o NDDs ( o ins ance ADHD) a e less likely
o adhe e o ag eed p o ocols o appoin men s. The gen-
e alisabili y o he findings o all amilies wi h child en
wi h NDDs is he e o e in doub , and i is possible ha
mo e p oblems ela ed o amily unc ionali y and heal h
migh ha e been p esen in non- esponding amilies.
The s eng h o he s udy is he in o ma ion ha
esponding pa en s sha ed conce ning hei e e yday li e
wi h a child ha ing NDD and hei expec a ions is-a- is
heal h p o essionals. This in o ma ion confi ms ha he e
is a need o ailo amily in e en ions o his a ge g oup.
Conclusion
Family unc ionali y was ound o posi i ely co ela e wi h
amily heal h. Also, expe ience o s eng h in pa en hood
co ela ed o amily heal h. Nei he pa en al age no numbe
o siblings co ela ed wi h any o FAFHES subdomains. The
quali y o he ela ionship be ween he pa en s, expe ience o
own heal h, and age o onse o child NDD p oblems co ela ed
nega i ely wi h amily unc ionali y. Su p isingly, no co ela-
ion be ween social suppo and unc ionali y was ound.
Nega i e co ela ions we e also ound be ween Family heal h
and quali y o ela ions be ween pa en s. No di e ences
be ween mo he s and a he s we e ound. The e we e no sig-
nifican changes in pa en s’expe ience o amily unc ionali y,
heal h, and social suppo o e a h ee-mon h ollow-up pe iod.
Pa en s wan ed dialogue, in o ma ion, and conc e e guidance
om s a in daily ma e s ega ding hei child.
Acknowledgmen s
Ou wa mes hanks o he amilies pa icipa ing in his
s udy, o he s a a he HUH, and o P o esso Päi i
Ås ed -Ku ki and he copy igh holde s a Tampe e
Uni e si y, who ga e pe mission o modi y and use he
FAFHES ques ionnai e o his s udy.
Disclosu e
The au ho s epo no conflic s o in e es in his wo k.
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