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Study: Families’ Perspectives on ADHD and its Treatment

In 2005 the Amer­i­can Acad­e­my of Pedi­atrics (AAP) began an ini­tia­tive to pro­mote an approach to care among its mem­bers in which “…the pedi­atric team works in part­ner­ship with a child and a child’s fam­i­ly to assure that all of the med­ical and non-med­ical needs of the patient are met.” A crit­i­cal­ly impor­tant focus of this approach is the role of the fam­i­ly and child — as devel­op­men­tal­ly appro­pri­ate — in the devel­op­ment of an over­all plan of care.

This shared deci­sion-mak­ing approach is espe­cial­ly impor­tant for con­di­tions like ADHD where there is not a sin­gle treat­ment that is the most appro­pri­ate and pre­ferred option for all patients. How­ev­er, lit­tle research has addressed the extent to which med­ical care for ADHD con­forms to a ‘shared deci­sion mak­ing approach, and those stud­ies that have exam­ined this issue sug­gest it is lack­ing.

For exam­ple, com­pared to reports of fam­i­lies whose child was treat­ed for asth­ma — which is also a chron­ic med­ical con­di­tion — par­ents of chil­dren with ADHD report­ed feel­ing less like active part­ners in their child’s care, and were less like­ly to feel that clin­i­cians lis­tened to their per­spec­tive or pro­vid­ed them with suf­fi­cient infor­ma­tion to make well informed deci­sions.

A study recent­ly pub­lished online in the Jour­nal of Atten­tion Dis­or­ders [Davis et al., (2011). Putting fam­i­lies in the cen­ter: Fam­i­ly per­spec­tive on deci­sion mak­ing and ADHD and impli­ca­tions for ADHD care. Jour­nal of Atten­tion Dis­or­ders, pub­lished online 10/5/2011,DOI:10.1177/1087054711413077] presents new data on fam­i­lies’ expe­ri­ence with ADHD and it’s treat­ment. Par­tic­i­pants were a racial­ly and socioe­co­nom­i­cal­ly diverse group of 28 fam­i­lies from the San Diego area who were inter­viewed about their expe­ri­ence hav­ing a child with ADHD as well as their expe­ri­ence with treat­ment. The researchers were espe­cial­ly inter­est­ed in how fam­i­lies felt about:

1. the treat­ment deci­sion mak­ing process;

2. their per­spec­tives on the cause and impact of their child’s symp­toms; and,

3. their treat­ment goals and pref­er­ences.

Results

- Fam­i­lies’ per­spec­tives on deci­sion mak­ing: The major­i­ty of fam­i­lies believed that par­ents or fam­i­ly mem­bers should be respon­si­ble for treat­ment deci­sion mak­ing while approx­i­mate­ly 20% pre­ferred a shared process that includ­ed physi­cians. Very few fam­i­lies felt that physi­cians should be sole­ly respon­si­ble for treat­ment deci­sions.

Fam­i­lies’ per­spec­tives on the caus­es of their child’s ADHD symp­toms

Fam­i­lies’ per­spec­tives were divid­ed into 4 broad domains: fac­tors inter­nal to the child, e.g., a ‘chem­i­cal imbal­ance’, genet­ics; fac­tors exter­nal to the child, e.g., parental con­flict or sep­a­ra­tion, sig­nif­i­cant stres­sors; mixed inter­nal and exter­nal fac­tors, and devel­op­men­tal fac­tors, e.g., ‘boys are just like this but he’ll grow out of it’.

Each type of expla­na­tion was pro­vid­ed by mul­ti­ple fam­i­lies with­in the sam­ple. Thus, although ADHD is wide­ly con­sid­ered to be a bio­log­i­cal­ly based con­di­tion with strong genet­ic com­po­nent, many fam­i­lies attrib­uted their child’s symp­toms to stress­ful life cir­cum­stances and/or tran­sient devel­op­men­tal fac­tors.

For many fam­i­lies, a sub­stan­tial change in under­stand­ing of their child’s symp­toms emerged over time. In almost all cas­es, the change was from a developmental/nonpathological per­spec­tive to one that empha­sized genet­ic and oth­er bio­log­i­cal vul­ner­a­bil­i­ties. This was more like­ly to occur when par­ents felt that physi­cian val­ued their input and involved them in a shared deci­sion mak­ing approach. Par­ents who felt their input was not val­ued were less like­ly to accept the physician’s bio­log­i­cal­ly based expla­na­tion and treat­ment rec­om­men­da­tions.

Fam­i­lies’ per­spec­tive regard­ing the impact of their child’s symp­toms

Most fam­i­lies felt that their child’s ADHD caused stress and strain on fam­i­ly rela­tion­ships. Many fam­i­lies report­ed adverse health and men­tal health con­se­quences with­in the fam­i­ly, mar­tial con­flict and sib­ling con­flict.

Some fam­i­lies report­ed that their child’s symp­toms had affect­ed their job per­for­mance. Help­ing their child with home­work was a sig­nif­i­cant time bur­den in some fam­i­lies. A small num­ber of fam­i­lies felt ostra­cized by neigh­bors and oth­ers because of their child’s behav­iors.

Fam­i­lies per­spec­tive on the impact on their child

Most fam­i­lies felt ADHD had the great­est neg­a­tive impact on their child’s school per­for­mance. Many also expressed con­cern about how ADHD was impact­ing their child’s social rela­tion­ships and self-esteem.

Fam­i­lies’ treat­ment goals and pref­er­ences

The major­i­ty of fam­i­lies were will­ing to use med­ica­tion to treat their child’s symp­toms. How­ev­er, the process of accept­ing med­ica­tion was often a grad­ual one and that emerged after oth­er options were not suc­cess­ful.

Many fam­i­lies expressed strong inter­est in alter­na­tive treat­ments to address core ADHD symp­toms includ­ing dietary mod­i­fi­ca­tions, bio/neurofeedback, and exer­cise-based approach­es. Many fam­i­lies expressed frus­tra­tion at what they per­ceived to be the lim­it­ed infor­ma­tion they received about ADHD treat­ment options.

Fam­i­lies’ treat­ment goals

Most fam­i­lies were inter­est­ed in treat­ments that addressed issues beyond the man­age­ment of core ADHD symp­toms. A com­mon­ly expressed desire was for non­phar­ma­co­log­i­cal inter­ven­tions that would enhance their child’s over­all qual­i­ty of life. Towards that end, some par­ents sought out social skills train­ing to help their child with peer rela­tions, oth­ers sought coun­sel­ing to address self-esteem issues, and oth­ers looked for addi­tion­al aca­d­e­m­ic sup­ports. In addi­tion to seek­ing these sup­ports for their child, many par­ents empha­sized a desire for sup­port­ive coun­sel­ing for them­selves. Here is a par­tic­u­lar­ly poignant quote from one of the par­ents:

I need ther­a­py. I do; it’s just terrible…you start to build resent­ment, you get angry, and then he gets me angry, so angry all the time that I say things I shouldn’t say of course.”

Anoth­er par­ent expressed, “I think coun­sel­ing for chil­dren does help, but there should be more coun­sel­ing avail­able for the parents…because it’s very tough and you always, always feel bad.”

Sum­ma­ry and impli­ca­tions

Results from this study high­light pro­vide impor­tant infor­ma­tion for under­stand­ing what is impor­tant to many fam­i­lies seek­ing treat­ment for a child with ADHD. Fam­i­lies desire an active role in mak­ing deci­sions about their child’s treat­ment and are intent on address­ing broad qual­i­ty of life issues in addi­tion to man­ag­ing core ADHD symp­toms. The under­stand­ings that fam­i­lies bring to clin­i­cians con­cern­ing the basis for their child’s symp­toms can vary wide­ly and will influ­ence the types of treat­ment approach­es that will most res­onate with them.

Espe­cial­ly impor­tant are find­ings per­tain­ing to the impact of ADHD on par­ents’ own feel­ings of stress and well being, the con­flicts it can cause with­in fam­i­lies, and the spillover effects this can have on par­ents’ work life. Unfor­tu­nate­ly, these impor­tant issues may not be addressed or even con­sid­ered in many instances even though it is clear that “…inte­grat­ing approach­es that tar­get the child’s iden­ti­fied needs and address parental stres­sors, includ­ing mar­i­tal interventions…into treat­ment pro­grams for fam­i­lies of chil­dren with ADHD” is impor­tant to pur­sue.

Anoth­er inter­est­ing find­ing from this study is that par­ents’ under­stand­ing of their child’s ADHD, and the types of treat­ment approach­es they are open to, can change over time. Many par­ents also have strong inter­est in learn­ing about alter­na­tive ADHD treat­ments that can com­ple­ment tra­di­tion­al inter­ven­tions, but feel that the infor­ma­tion required to make well-informed deci­sions about the best over­all approach for their child is dif­fi­cult to obtain.

Mak­ing it eas­i­er for fam­i­lies to obtain such infor­ma­tion, assess­ing fam­i­lies pref­er­ences with regard to their role in deci­sion mak­ing about their child’s treat­ment, and devel­op­ing evi­dence-based inter­ven­tions that address a broad range of impair­ments beyond core ADHD symp­toms all emerge from this study as impor­tant avenues to pur­sue. Also valu­able would be con­tin­u­ing the work begun here with a larg­er and broad­er rep­re­sen­ta­tion of fam­i­lies so that the issues iden­ti­fied per­tain­ing to fam­i­lies’ per­spec­tives on ADHD and it’s treat­ment can be fur­ther delin­eat­ed and bet­ter under­stood. Ulti­mate­ly, such infor­ma­tion can help clin­i­cians bet­ter pro­vide fam­i­ly-cen­tered care for ADHD that address­es the wide range of con­cerns that fam­i­lies seek assis­tance for.

Rabiner_David– Dr. David Rabin­er is a child clin­i­cal psy­chol­o­gist and Direc­tor of Under­grad­u­ate Stud­ies in the Depart­ment of Psy­chol­ogy and Neu­ro­science at Duke Uni­ver­sity. He pub­lishes Atten­tion Research Update, an online newslet­ter that helps par­ents, pro­fes­sion­als, and edu­ca­tors keep up with the lat­est research on ADHD, and teach­es the online course  How to Nav­i­gate Con­ven­tion­al and Com­ple­men­tary ADHD Treat­ments for Healthy Brain Devel­op­ment.

–> For relat­ed arti­cles by Dr. David Rabin­er on atten­tion deficits, click Here.

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