Burden and Parental Satisfaction in Informal Caregivers of People with Angelman Syndrome: A Mix-method Study

Abstract

Background: Studies focusing on the burden of parents informally caring for offspring with chronic illnesses such as Angelman Syndrome are rare, despite the challenging task of parenting a person with such a disabling illness. The present article seeks to study the experience of being a parent and, simultaneously, an informal caregiver for a person with Angelman Syndrome, pursuing to investigate the effects of autonomy on the caregiver burden and how parental satisfaction mediates this relationship. Methods: A mixed methods research was conducted. The quantitative cross-sectional study involved 24 parents of a person with Angelman Syndrome, 75% mothers (Mothers Mage = 42.9, SD= 2.1; Fathers Mage =50.00, SD= 4.4). Five self-reported instruments were applied: sociodemographic questionnaire, Katz Index, Parental Satisfaction Scale and Zarit Caregiver Burden Scale. The qualitative study involved four parents (75% mothers), to whom we conducted a semi-structured interview. Results: The results show that the greater the general satisfaction, the lower the feelings of burden. Also, an indirect effect of autonomy on caregiver burden through general satisfaction was found. The qualitative study revealed the presence of feelings such as burden, sadness, shock, fear, uncertainty, and hope, being the main complaints the lack of personal time and the multitude of responsibilities and activities. All data was collected during a global pandemic situation, inevitably affecting the results of the study. Conclusion: Results confirm the emotional impact of being, simultaneously, a parent and a caregiver of a person diagnosed with Angelman Syndrome. Further studies with this population are needed to find out the risk and protective factors of symptoms of burden within this population.

Keywords

• angelman syndrome
• informal caregiver
• burden
• parental satisfaction
• autonomy.