Psychosocial functioning in parents of mps iii patients

Project Abstract

Parents of children with rare and severe genetic disorders, such as Mucopolysaccharidosis type III (MPS III), face unique challenges that can significantly impact their psychosocial functioning. This study aimed to explore the psychosocial functioning of parents of MPS III patients, focusing on their emotional well-being, social support, coping strategies, and overall quality of life. A mixed-methods approach was employed, utilizing both quantitative measures and qualitative interviews to gather comprehensive data on the experiences of parents caring for MPS III children. Quantitative assessments included standardized measures of anxiety, depression, stress, and quality of life, while qualitative interviews provided in-depth insights into the lived experiences of these parents. Preliminary findings suggest that parents of MPS III patients experience high levels of psychological distress, including symptoms of anxiety and depression. The chronic stress of caregiving, coupled with the uncertainty of the disease progression and prognosis, contributes to the emotional burden experienced by these parents. Despite these challenges, parents also reported a strong sense of resilience and dedication to their children, which served as a motivating factor in their caregiving role. Social support was identified as a crucial factor in buffering the negative impacts of caring for an MPS III child, with many parents relying on family, friends, and support groups for emotional and practical assistance. Coping strategies varied among parents, with some engaging in problem-focused coping, seeking information and resources to better care for their child, while others utilized emotion-focused coping, focusing on finding ways to manage their own emotional responses to the challenges they faced. Overall, the quality of life of parents of MPS III patients was found to be significantly impacted by the demands of caregiving, but also influenced by their ability to find meaning and purpose in their role as caregivers. The findings from this study have important implications for the development of targeted interventions to support the psychosocial well-being of parents of MPS III patients, including the provision of mental health services, respite care, and peer support programs.

Project Overview

<p> </p><div><p><em>Background</em>: Mucopolysaccharidosis type III (MPS III or Sanfilippo syndrome) is a lysosomal storage disease resulting in progressive neurocognitive decline during childhood and early demise. Its diagnosis may have a great impact on parents, potentially leading to psychosocial problems such as anxiety, depression, parental distress, and posttraumatic stress.</p><p><em>Methods</em>: Twenty-six mothers and 19 fathers of 34 Dutch MPS III patients completed the “Hospital Anxiety and Depression Scale” (HADS), the “Distress Thermometer for Parents” (DT-P), and the “Self-Rating Scale for Posttraumatic Stress Disorders” (SRS-PTSD). Independent-sample T-tests and chi-square tests were used to assess differences between parents of MPS III patients and reference groups regarding anxiety and depression (HADS), distress (DT-P), and posttraumatic stress (SRS-PTSD).</p><p><em>Results</em>: Mothers met the criteria for clinically relevant anxiety (50%) and depression (34.6%) more frequently compared to reference mothers (<em>p</em>&nbsp;= 0.001). Fathers more often met the criteria for clinically relevant depression (36.8%) compared to reference fathers (<em>p</em>&nbsp;= 0.022). Clinically relevant distress was highly prevalent in mothers (84.6%) and fathers (68.4%) of MPS III patients compared to reference parents (<em>p</em>&nbsp;&lt; 0.01). Finally, the prevalence of PTSD was strikingly higher in both mothers (26.9%) and fathers (15%) than reported in the general Dutch population (respectively, <em>p</em>&nbsp;&lt; 0.001 and <em>p</em>&nbsp;&lt; 0.05).</p><p><em>Conclusions</em>: We report a clinically relevant impact of parenting an MPS III patient on psychosocial functioning, which is demonstrated by high levels of anxiety, depression, distress, and a remarkably high prevalence of PTSD. Structural monitoring of the psychosocial functioning of MPS III parents is therefore essential and may be beneficial for the whole family.</p><p>Keywords<br>Anxiety Depression MPS III Parental distress Posttraumatic stress symptoms Psychosocial functioning</p><p></p></div><h3></h3><br> <br><p></p>