Health, Functionality, and social support in families with a child with a neurodevelopmental disorder : a pilot atudy

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 Open Access Full Tex A icle submi you manusc ip | www.do ep ess.com Neu opsychia ic Disease and T ea men 2019:15 1151–1161 1151 Do eP ess © 2019 Ca onius-Rin ahaka e al. This wo k is published and licensed by Do e Medical P ess Limi ed. The ull e ms o his license a e a ailable a h ps://www.do ep ess. com/ e ms.php and inco po a e he C ea i e Commons A ibu ion –Non Comme cial (unpo ed, 3.0) License (h p://c ea i ecommons.o g/licenses/by-nc/3.0/). By accessing he wo k you he eby accep he Te ms. Non-comme cial uses o he wo k a e pe mi ed wi hou any u he pe mission om Do e Medical P ess Limi ed, p o ided he wo k is p ope ly a ibu ed. Fo pe mission o comme cial use o his wo k, please see pa ag aphs 4.2 and 5 o ou Te ms (h ps://www.do ep ess.com/ e ms.php). h p://doi.o g/10.2147/NDT.S195722 Neu opsychia ic Disease and T ea men downloaded om h ps://www.do ep ess.com/ by 153.1.23.73 on 17-May-2019 Fo pe sonal use only. Powe ed by TCPDF (www. cpd .o g) 1 / 1 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 Ca onius-Rin ahaka e al Do ep ess submi you manusc ip | www.do ep ess.com Do eP ess Neu opsychia ic Disease and T ea men 2019:15 1152 Neu opsychia ic Disease and T ea men downloaded om h ps://www.do ep ess.com/ by 153.1.23.73 on 17-May-2019 Fo pe sonal use only. Powe ed by TCPDF (www. cpd .o g) 1 / 1 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: Do ep ess Ca onius-Rin ahaka e al Neu opsychia ic Disease and T ea men 2019:15 submi you manusc ip | www.do ep ess.com Do eP ess 1153 Neu opsychia ic Disease and T ea men downloaded om h ps://www.do ep ess.com/ by 153.1.23.73 on 17-May-2019 Fo pe sonal use only. Powe ed by TCPDF (www. cpd .o g) 1 / 1 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). Ca onius-Rin ahaka e al Do ep ess submi you manusc ip | www.do ep ess.com Do eP ess Neu opsychia ic Disease and T ea men 2019:15 1154 Neu opsychia ic Disease and T ea men downloaded om h ps://www.do ep ess.com/ by 153.1.23.73 on 17-May-2019 Fo pe sonal use only. Powe ed by TCPDF (www. cpd .o g) 1 / 1 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) Do ep ess Ca onius-Rin ahaka e al Neu opsychia ic Disease and T ea men 2019:15 submi you manusc ip | www.do ep ess.com Do eP ess 1155 Neu opsychia ic Disease and T ea men downloaded om h ps://www.do ep ess.com/ by 153.1.23.73 on 17-May-2019 Fo pe sonal use only. Powe ed by TCPDF (www. cpd .o g) 1 / 1 “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% Ca onius-Rin ahaka e al Do ep ess submi you manusc ip | www.do ep ess.com Do eP ess Neu opsychia ic Disease and T ea men 2019:15 1156 Neu opsychia ic Disease and T ea men downloaded om h ps://www.do ep ess.com/ by 153.1.23.73 on 17-May-2019 Fo pe sonal use only. Powe ed by TCPDF (www. cpd .o g) 1 / 1 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) Do ep ess Ca onius-Rin ahaka e al Neu opsychia ic Disease and T ea men 2019:15 submi you manusc ip | www.do ep ess.com Do eP ess 1157 Neu opsychia ic Disease and T ea men downloaded om h ps://www.do ep ess.com/ by 153.1.23.73 on 17-May-2019 Fo pe sonal use only. Powe ed by TCPDF (www. cpd .o g) 1 / 1 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 Ca onius-Rin ahaka e al Do ep ess submi you manusc ip | www.do ep ess.com Do eP ess Neu opsychia ic Disease and T ea men 2019:15 1158 Neu opsychia ic Disease and T ea men downloaded om h ps://www.do ep ess.com/ by 153.1.23.73 on 17-May-2019 Fo pe sonal use only. Powe ed by TCPDF (www. cpd .o g) 1 / 1 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. Re e ences 1. Gillbe g C. 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