The Daily Life of Children with ADHD and their Moms

Although thousands of studies on children with ADHD and their families have been conducted, it is surprising how little is known about the quality of their day-to-day lives. Behavior rating scales tell us relatively little about the quality of moment-to-moment interactions, and observational studies, although a rich source of data, are necessarily limited to extremely small samples of time.

A fascinating study to be published in an upcoming issue of the Journal of Abnormal Child Psychology addresses this important gap in the literature (Whalen, et al. (2006). Toward mapping daily challenges of living with ADHD: Maternal and Child Perspective using Electronic Diaries).

In this study, Personal Digital Assistants - PDAs - were used to provide a unique window into the challenges of living with ADHD, challenges that remain despite important benefits that may be provided by medication treatment.

Participants were 27 children with ADHD (average age 10.5 years, 18 boys, 9 girls) and their moms as well as 25 children without ADHD (average age 10.5 years, 15 boys, 10 girls) and their moms.  All children in the ADHD group were being treated with a long acting stimulant - either Concerta or Adderall XR - at the time of the study.  Children in the comparison group had no known learning or behavioral problems.  Because the authors were interested in examining mother-child relationship issues, enrollment was limited to mother-child dyads together for at least 4 hours each day. 

To learn about participants' the day to day experience, electronic diary monitoring using Personal Digital Assistants - PDAs - was scheduled across 7 consecutive days during nonschool hours.  The PDAs were programmed to beep approximately every 30 minutes to signal that it was time to complete a diary checklist.  Both mothers and children had their own PDA, which were programmed to beep at different times, and each completed their own electronic diary.  The PDAs were programmed to beep when mothers and children were likely to be together - before school, after school, and on weekends.

The diary items were selected to "...tap contexts, behaviors, and moods that are relevant to the daily lives of parents and school age children, to capture the quality of their interactions, and to include dimensions that often prove problematic for children with ADHD.

Each time the PDA beeped, participants used the PDA to identify their location, social context, i.e., by themselves, with each other, with peers, and their current activity.  Then, mother and child rated the child's symptomatic behaviors (e.g., impatient, restless), and moods (.e.g., angry, good mood).  Mothers also rated their own moods.  Each also rated the difficulty of the activity they were currently engaged in and evaluated their ability to do it successfully. 

Despite the frequent recording demands, moms and children did a good job of completing the diary entries.  Mothers received an average of 91 signals to complete a diary entry during the 7-day period while children received an average of 95 signals.  Completion rates were approximately 90% for mothers and children, and did not differ between the ADHD and comparison group.  Thus, even though some children in the study were as young as 8, the use of a PDA to learn about children's ongoing experience appears to be a very viable research method.


 RESULTS

- Child Problem Behaviors -

Compared to mothers of comparison children, mothers of children with ADHD were more likely to record their child as displaying problematic behavior when prompted by the PDA.  The specific results are as follows:

Impatience - 26%  vs. 12%
Restless - 34% vs. 7%
Talking too much - 20% vs. 7%
Too loud - 17% vs. 7%

Thus, during 26% of the nearly 100 recording intervals spread across the week, moms of children with ADHD rated their child as displaying impatience.  In contrast, moms of comparison children observed impatience during only 12% of the intervals. The other problem behaviors can be interpreted in a similar manner.  These results highlight that moms of children with ADHD felt themselves to be dealing with challenging behavior far more often, and provides an indication of the greater challenges they face on a daily basis, DESPITE the fact that their child was receiving medication treatment. 

Interestingly, ratings provided by children did not show the same differences.  In fact, children with ADHD did not report that they were engaging in these problem behaviors at higher rates than comparison children, and highly the significant discrepancy between maternal and child perception of children's behavior.


- Child Moods -

Mothers of children with ADHD were also more likely than moms of comparison children to observe their child in problematic mood states.  The specific results are as follows:

Bored - 15% vs. 9%
Sad/discouraged - 11% vs. 4%
Angry/frustrated - 19% vs. 10%
Stress - 14% vs. 11%
Good mood - 71% vs. 79%

Thus, during 15% of the nearly 100 recording intervals spread across the week, moms of children with ADHD rated their child as displaying boredom.  In contrast, bordeom was observed by moms of comparison children during 9% of the intervals.  The other mood states can be interpreted in a similar manner.  Although these differences in observed mood are not as pronounced as differences in problem behavior, they point to a consistent pattern in which moms of children with ADHD were more likely to see their child in a negative mood state and less likely to see their child in a positive mood.

In rating their own moods, differences between children with and without ADHD were also found.  Specifically, in the mornings, children with ADHD were three times more likely than comparison children to report being sad (7.5% of morning recording intervals vs. 2.5%).  They also reported over three times the rate of restlessness (14% vs. 4%).

There were also intriguing differences between weekend and weekday reports in children's self-reported moods.  In fact, children with ADHD were over 10 times more likely than comparison children to report feeling stressed during the weekend, reporting this in 10% of weekend diary entries.  In conjunction with the findings reported above, these results suggest that mornings and weekends pose special challenges for children with ADHD.


- Time Spent Together: Negative Affect and Quality of Interactions -

There were no significant differences in the percentage of recording intervals that mothers and children in the two groups reported being together.  There were, however, important differences in the report quality of that time.

Group differences in mom's report of feeling angry when children were present were particularly striking.  Mothers of children with ADHD were over one and a half times as likely to report being angry when they were with their child than when not with their child.  They were also more than 3 times as likely to report diagreeing with their child, reporting this for 10% of the intervals when they were with their child vs. only 3% for comparison mothers.  

This was echoed in children reports, as children with ADHD reported disagreeing with their moms in 7% of intervals vs. 3% for comparison children.  Thus, although the absolute rate of reporting disagreement was relatively low, it was still a substantially more common experience for children with ADHD and their mothers.


- Parenting Perceptions and Quality of Day -

Mothers of children with ADHD were only half as likely as mothers of comparison children to report that their child made them feel good as a parent.  They were also less likely to report feeling effective as a parent and to report that their child limited both their and their families' activities. 


SUMMARY AND IMPLICATIONS

The use of PDAs to provide snap shots into the experience of children with ADHD and their mothers at multiple times across a typical week provides a unique insight into the challenges that each experience.

Although all children were being treated with stimulant medication - the treatment approach that currently has the strongest empirical support - the daily experience of children with ADHD and their moms still differed in important ways from that of other mother-child dyads.

Specifically, children with ADHD displayed higher rates of symptomatic behaviors, including restlessness, excessive talk and loudness, impatience, and difficulty concentrating. Mothers reported that these types of problematic behaviors occurred anywhere from 2 to 5 times as frequently as mothers of comparison children. 

In addition, children with ADHD were more likely to be seen by their mothers as angry, frustrated, and sad or discouraged and their interactions with their mothers were more likely to be marked by disagreement.  Based on children's own reports, mornings and weekends were particularly challenging times, and they reported feeling stressed on the weekends over 10 times as often as comparison children. 

Greater difficulty in the morning may be related to difficulties getting organized and ready for school.  On the weekends, however, children's schedule is typically more flexible, so this would seem unlikely to explain their more frequently report stress.  Instead, this may relate to the difficulty children with ADHD often have in peer relationships, which could result in fewer opportunities to participate successfully in organized peer group activities such as team sports.  This, of course, is quite speculative.

Although mothers of children with ADHD did not report more anger in general, their anger rates were elevated relative to other mothers when they were with their children.  They were also more likely to report feeling ineffective as a parent and that their child was limiting their activities.  This pattern of results suggests that children with ADHD "...may indeed have an impact on parenting interactions and the quality of family life, even when these children are being successfully treated with pharmacotherapy."

Overall, results from this intriguing study point to continued difficulties in the daily experience of children with ADHD and their mothers, and highlight that medication treatment - although it can be extremely helpful to many children -  often fails to normalize children's behavior. Instead, residual difficulties often adversely impact the daily lives of children with ADHD and their parents.  Of course, this does not necessarily apply to all children with ADHD and their parents, although the overall group trends were quite clear.

There are important limitations to this study that should be acknowledged. 

The sample size was relatively small, and the period of data collection - 1 week - was relatively short.  Also, the sample was predominantly middle class, and whether the findings would generalize to families of different socioeconomic status is unclear.

It should also be noted that the medication treatment received by these children was provided in regular community settings, which is often less carefully monitored and effective than what is found in clinical research trials.  Thus, it is certainly possible that medication treatment provided in a more stringent manner would eliminate, or at least reduce, many of the residual difficulties that were clearly evident in this sample.

The clear discrepancies in the report of problematic behavior provided by children and mothers, with mothers reporting higher rates of symptomatic behavior, is also worthy of consideration.  Whether mothers were "over reporting" or children were "under reporting" cannot be determined by this study, although biased reporting among parents of children with ADHD has not been found in prior studies.

Finally, it should be emphasized that one should not assume that problematic behavior in children with ADHD caused their mothers to feel angrier or less effective as parents.  Cause and effect relationships cannot be established in studies like this, tempting though such inferences are to make.

Despite these limitations, the creative data collection methods used in this study provides us with a fine-grained assessment of the ongoing experience of children with ADHD and their moms.  What has been documented is continued problematic behaviors and moods in children with ADHD, as well as negative impacts on mothers and families. 

Such findngs highlight the need to better understand the experience of children with ADHD and their families, the continued need to develop treatments that can complement benefits that medication can provide, and "...the need to extend treatment targets beyond the identifed child to include parents and perhaps other family members."  The study also documents the value that technology such as PDAs can play in helping us to better understand what it is like for children with ADHD and their parents.