Parenting Stress Index (PSI) – Individuals with Rett syndrome and their families – Article Summary
Title: The effectiveness of music therapy for individuals with Rett syndrome and their families
Journal: Journal of the Formosan Medical Association (2019) 118
Authors: Ming-Yi Chou, Nai-Wen Chang, Chieh Chen, Wang-Tso Lee, Yi-Jung Hsin, Ka-Kit Siu, Chih-Jen Chen, Liang-Jen Wang, Pi-Lien Hung
Purpose: To determine the effect of 6 months of music therapy on the social, communicational, motor, and stress-related factors of young females with Rett syndrome (RTT, see below for details) and their families.
Population: Rett syndrome is a rare genetic mutation most often seen in girls that causes rapid loss of coordination of the extremities, mood and behavior disturbances, and societal withdrawal which takes place as early as 6-18 months of age/development.
Methods: A cohort of 23 volunteer females, aged 3-25 y/o, all of which received standard RTT care from a multidisciplinary team and had their “neurobehavioral” function tested before and after the 24-week period. The study group consisted of 11 who received the music therapy treatment in addition to the standard RTT care and 12 who received RTT care alone.
Outcome Measures: The authors used all of the following on pre- and post-intervention, on both the study and controls group. The Parenting Stress Index (PSI) assessed numerous stress-based parameters of the children (e.g., mood, demandingness, hyperactivity/distractibility, etc.) and the mothers and other caregivers (e.g., parental health, depression, relationship to a spouse, etc.). The Vineland Adaptative Behavior Scale (VABS) was used to assess the young women’s communication, ADL skills, socialization, and motor skills. The Rett Clinical Severity Scale (RCSS) measured language, nonverbal communication, respiratory dysfunction, autonomic symptoms, and epilepsy and/or seizure. Lastly, the Rett Syndrome Motor Behavioral Assessment (RMBA) measured eye contact, grip duration, motor/physical signs, orofacial/respiratory signs, and behavioral/social signs.
Intervention: Twice a week all of the study participants and their family members participated in a 2-hour, 5-part, group music therapy program which included: an opening song, musical sensory stimulation (rhythm, tempo, tone, etc.), musical improvisation, quiet time, and closing/farewell; all lead by a certified music therapist.
Results: The PSI indicated significantly lower parental stress within the study group parents, the acceptability and adaptability of the children had significantly increased. On the VABS there were significant increases in receptive communication, social interaction, and interpersonal relationships in both the study and control group, but no improvement in the ADL skills and motor skills. On the RCSS, there was an overall decrease in the severity scores for the study group, including significant increases in language function, non-verbal communication, as well as a noteworthy decrease of seizure in 3 of the participants without any change to their medications. And on the RMBA there was a similar decrease in the severity scores, and significant improvements in behavior/social performance, eye contact, and grip strength in the study group.
Strengths & Limitations: The study clearly shows the benefits of music therapy to reduce the stress levels of children with RTT and their parents, which is a boon for any kind of therapy. Also, through regular, structured social interactions a variety of social, interpersonal, and to a lesser extent physical improvements was also seen. All of which do credit to the researchers’ purpose and methodology. Due to the rarity of RTT, and the low birthrate in Taiwan, there was a limited pool of potential participants, which lead to further bias as only those families that were medically accessible were utilized, and they were then not randomized into a controlled trial.
Overall conclusion: Music therapy and group interaction lead to statically significant improvements in the areas such as parent stress, communication, and interpersonal interaction.
7 responses to “Parenting Stress Index (PSI) – Individuals with Rett syndrome and their families – Article Summary”
Leave a Reply
You must be logged in to post a comment.
This is really interesting. I think their findings make sense in that there was an improvement in communication and language skills but no improvement in ADL and motor skills, given there was no intervention specifically targeting those areas. I am curious to know if the reduced parental stress would be similar or different compared to the response after a support group. It seems the social interaction played a role, but I am curious how the music aspect of music therapy plays a role in this (I really don’t know much about music therapy).
An excellent question. And the authors shared your thought, as stated in the last lines of the discussion:”… there were possible synergetic effects between music therapy and group therapy, and further head-to-head study comparison of group therapy and music therapy effect on parental stress index should be mandatory.” While it may be hard to untangle where the benefits of music therapy and group therapy start and stop, the PSI showed there to be a significant increase of stress for the parents and children in the control group. My guess is that the guided musical program helped to facilitate group participation, cohesion, and “harmony”; whereas the control parents and children who simply had some RTT-related tests and interaction with health professionals at the beginning and end of a 24-week period experienced neither.
That is awesome that music therapy was able to help both the participants and the caregivers! Did the study mention if they music therapy may have helped the participants more or less depending on their age (3-25)?
Great question. Reviewing the data, the study group was a bit older (including the 25 y/o) and had a mean age of 14.45 +/- 6.38, while the control group (with two 3 y/os and a 4 y/o) had mean age was 12.08 +/- 6.65. And looking at the overall scores (not the subscores) for the PSI, RMBA, CSS, VABS I don’t see a clear correlation between age and better or worse scores. I would hope that if there was a clear connection that the researchers would have emphasized the importance of earlier intervention.
It is exciting that music therapy had such a significant impact in these patient’s lives! I like that this study included the PSI as an outcome measure. I think it important for a clinician to assess caregiver quality of life before and after an intervention, especially in the pediatric population. Other than Rett Syndrome, do you know of any other populations the PSI is used in?
Excellent question and I agree that it’s great to include the parent/caregiver/family as well as the child, especially for something as pervasive as stress! The researchers cited several publications on autism spectrum disorders, some directly in relation to music therapy, others not. I would have to take a closer look to know which/how many of these studies also used the PSI, but it is a useful T&M with pediatric populations where activity, participation, ADLs, and emotions need to be quantified.
Gus, great article summary! I have not learned or heard much about Rett syndrome previously so this was interesting to learn a little more about. I also think it’s interesting that they looked at music therapy since that is something that I’ve heard of but I haven’t learned much about it or how well it works but based on this study it seems like it can have positive effects on not only children with Rett syndrome but their parents as well.