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Mental health issues

Children suffering with Spinal Muscular Atrophy, depending on the type of SMA, may have possible complications that include contractions of muscles and tendons, scoliosis, episodes of aspiration and difficulty in breathing. Such symptoms may lead to psychological comorbidities that may hamper their quality of life as well as that of their caregivers. Few examples are explained below:

  • Limitations on social activities-Both parents and patients do have to limit their ability to socialize and engage in activities outside their homesdue to weakness and fatigue, which results in the patient’s frustration. Fear of infection can also lead caregivers and parents of children with SMA to avoid social situations.
  • Social discomfort and stigma-Individuals with SMA experience social discomfort and stigma such as embarrassment when they cannot perform physical activities. Some patients describe their frustration due to the lack of accessible services for the differently abled, and frustration with being stereotyped and treated differently from others without a physical disability.
  • Loss of sleep and stress-Many parents have to be awoken multiple times during the night to help their child roll-over to prevent bedsores, or even to simply adjust the covers to prevent the child from getting too hot or cold.
  • Coming to terms with lost expectations –The parents of SMA patients deal with conflicting feelings of deep love for their child and the sadness brought to their life because of the child’s condition.
  • Anxiety/Fear – Anxiety is common among caregivers and patients. Frequently, this is due to internalized fear that their child might be exposed to a life – threatening respiratory infection. Some anxiety reported among individuals with SMA is related to worries about how to mitigate the day-to-
    day social and physical consequences of their condition.
  • Depression – People with SMA often work out ways to compensate for lost abilities. But
    as the disease progresses, they realize that this is not always possible. Frustration about the
    lack of treatment options can also be a factor.
  • Post-Traumatic Stress Disorder -Child’s diagnosis may often leave parents traumatized
    and so can the repeated respiratory infections requiring hospital admission.

The diagnostic journey itself may cause prolonged distress among the caregivers and patients. Supporting patients in meeting their psychological needs should become an objective of person- centered care for this population. In line with the International Classification of Functioning framework, well – being of children and adults with SMA may be improved by increasing their (satisfaction with) participation. Moreover, clinical assessment and management should focus on optimizing patients’ satisfaction with their basic psychological needs (autonomy, competence, relatedness), as this is strongly related to indices of psychological well-being.

Therefore, the following  guidelines are suggested:
1.  To approach a professional for expert input in analyzing, counseling and working on the psychological stressors.
2. To prioritize play and provide time slots for the child’s play activities.
3. Arranging playdates with mates for developing social skills, even if that is virtual.
4. Making every step count and cherishing every minute goal achieved with spontaneity can make a big difference.
5. Family dynamics can play a major role in nourishing the quality of life of the child and the caregivers, with expert professional’s advice and input.
6. Formulating a Reward system with professional guidance that can add value to the child’s functional level.
7. Developing self -help skills for developing the child’s self-esteem and self-efficacy focused physical therapies.
8. Encouraging participation in social activities.
9. Developing a sense of belongingness amongst family members by sharing achievements and recognizing the contributions of every member.
10.Prioritizing the child’s emotional awareness through labeling and bonding over the emotionin concern.


Personal opinion collection from literature by:

  • Mrs. Shaireen Ali (Psychologist)
  • Ms. Shreyashee Dutta (Psychology intern)
  • Dr Arijit Chattopadhyay (Pediatric Neurologist)