Sense of Well-Being Tied to Ability to Take Part in Life and Engage with Others, SMA Patients Say

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by Jonathan Grinstein |

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For people with spinal muscular atrophy (SMA), psychological well-being is not driven by socioeconomic factors or even illness characteristics. Instead, patients closely relate it to being content with their ability to participate in activities, and to their sense of autonomy, competence, and relatedness, researchers report.

Their article, “Psychological well-being in adults with spinal muscular atrophy: the contribution of participation and psychological needs,” was published in Disability and Rehabilitation.

Research is limited into spinal muscular patients’ subjective psychological well-being — and very little is known about what factors might affect this. Studies that have been conducted also conflict in reported findings.

Researchers at the University Medical Centre Utrecht, for this reason, looked at patients’ sense of well-being in terms of self-esteem and emotional functioning, and at their sense of overall satisfaction with life.

“To the best of our knowledge, this study is the first to include satisfaction of basic psychological needs to explain variations in well-being among patients with neuromuscular disorders,” researchers wrote.

According to their study, “[a]utonomy refers to the sense of being able to act from personal interests and values. Relatedness concerns the feeling of being
connected with, respected and valued by others. Finally, competence is the sense of control over one’s actions and the environment.”

The team examined psychological well-being through two frameworks — one looking at participation using the 32-item Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P), which assesses both objective and subjective measures of household chores, work and social activities. The other is a measured ranking on issues related to autonomy, relatedness, and competence, called the Basic Psychological Needs Satisfaction and Frustration Scale (BPNSFS).

Questionnaires were completed by 92 SMA patients in the Netherlands, whose ages ranged from 18 to 73 (average 40.3) years, and who had been diagnosed with SMA for  an average 9.3 years. Most had SMA type 3 (52%), followed by SMA type 2 (40%), type 4 (4%), and type 1 (3%).

Nearly half were living independently, and about half had “an intimate relationship” with another person, the study reported.

Participants reported being restricted in doing household chores (67%), outdoor physical activity or exercise (57%), and going out, for instance to the movies or for dinner (43%). Most use electric wheelchairs, and were either unable to perform these activities or could do so only when assisted.

But most (over 85%) also reported being were very content with their amount of participation, and pleased with their social relationships with a partner, family, and friends. Additionally, more than four out of five respondents gave high marks for work, study, and leisure activities at home.

The study also showed high levels of satisfaction for basic needs of autonomy, competence, and relatedness — seen as predictors of well-being. Respondents’ average scores  ranged between 4.0 and 4.6 on a five-point scale for these domains, and findings indicate that satisfying these three needs are strongly related to SMA patients’ psychological well-being.

Interestingly, researchers found that sociodemographic (e.g. age, education) and clinical variables (i.e. time since diagnosis, SMA subtype, and motor function) were generally unrelated to the respondents’ psychological well-being. 

Researchers also looked at how these psychological well-being responses were linked with their self-esteem, emotional functioning, and overall life. They found that:

  • Self-esteem was most strongly related to respondents’ sense of competence, although it was related to contentment with participation.
  • Emotional functioning was most related to respondents’ sense of competence, frequency of participation, and restrictions in participation.
  • Overall life was most related to how pleased respondents’ were with their sense of competence and participation abilities.

The researchers suggest that, in addition to supporting patients in preserving an ability to participate in daily life, clinicians should be attentive throughout the illness trajectory to optimize autonomy, competence, and relatedness to improve psychological well-being.

 “Our results point to the importance of supporting patients in meeting their basic psychological needs, both within and outside of the medical domain,” the researchers wrote. “Importantly, paying attention to basic psychological needs should be a continuous concern throughout the trajectory of care.”