Feelings of isolation, often crushing in their intensity, are commonplace for caregivers of young rare disease patients. In recent years, various interventions have been evaluated to gauge how successfully they can provide caregivers with emotional support. One interesting option, currently in clinical trials, is a smartphone app designed to promote positive mental health in nonprofessional caregivers, such as parents.
So far, study results are hopeful. A total of 114 caregivers participated in a trial that measured the app’s effectiveness based on their answers to questions in the Positive Mental Health Questionnaire (PMHQA). This tool evaluates mental health using 39 questions divided into 6 factors: F1–Personal satisfaction (8 items), F2–Prosocial attitude (5 items), F3–Self-control (5 items), F4–Autonomy (5 items), F5–Problem-solving and self-actualization (9 items), and F6–Interpersonal relationship skills (7 items). The questions are in the form of positive or negative statements, and patients give a rating on a scale from 1 to 4 according to how frequently they occur: 1=always or almost always, 2=quite often, 3=sometimes, and 4=rarely or never. The PMHQ provides a global score for positive mental health (sum of the item scores) as well as specific scores for each factor.
In this trial, after three months, participants showed a significant increase in 5 out of the 6 factors, with the greatest changes occurring in the areas of problem solving and self-actualization, prosocial attitude and self-control. Nearly 94% of participants said they would recommend this app to others.