Challenges of Parents of Daughters with Multiple Sclerosis: A Phenomenological Study

Chronic illness in the child increases the mental health risk in parents. Parents also get new roles and responsibilities for the physical and emotional needs of their children in order to preserve and recreate the routine family activities. This study aimed to explain the challenges of parents with a daughter suffering from multiple sclerosis.
This research was a qualitative study with a phenomenological approach that was carried out with the participation of parents of girl's members of MS Association of Ardabil. Inclusion criteria were; living with family since MS beginning, having the MS history, and willingness to participate in the study. Data were collected by semi-structured interview with 12 participants. Finally, the collected data were analyzed using a quantitative method.
Data analysis showed 3 themes and 8 sub-themes as; 1. Distress (anxiety and fear, discomfort, dissatisfaction, the future of waking and mental activity), 2. Compatibility barriers (economic burden and treatment problems), and 3. Restriction (isolation and despair).
The challenges mentioned by parents in the current study were: mental and emotional distress such as anxiety, discomfort, and mental engagement. Also, most of the parents lost their social dynamicity and felt helpless and frustrated due to unsatisfied treatment results. Problems in the treatment process and economic burden were also among challenges preventing parents from coping with their child's disease. Providing these challenges to health care planners and managers can have a significant impact on the process of eliminating the problems.