How Parents With Disabilities View or Define Quality of Life

PURPOSE: The purpose of this study was to explore how parents with disabilities view or define quality of life. Few studies show the perspectives of parents living with disabilities. This study provided the perspective of a group of parents with disabilities that may inform the development of potential interventions to improve their quality of life.

DESIGN AND METHOD: This is a qualitative study. The researchers collected data through an online survey of open-ended questions housed on SurveyMonkey (San Mateo, CA). Researchers recruited parents with disabilities with permission from an open Facebook community, the Disabled Parenting Project, and the Disabled Parenting Project listserv. Researchers also recruited parents with disabilities from the closed Fibro and Pain Facebook group and via Twitter and word of mouth. Inclusion criteria were parents age 18 yr or older with a disability currently living in the United States. Participants provided electronic informed consent by clicking “agree” before filling out the qualitative survey. No personal identifying information, IP addresses, or personal health information was collected.

Parents with disabilities were presented with open-ended questions about how they define or view QOL and how their disabilities affect their QOL through the online survey. The study was approved by the university’s institutional review board. Aggregate data from the open-ended surveys were analyzed using grounded theory until saturation was reached. A team of three researchers and data from multiple sources ensured rigor, triangulation, and trustworthiness of the data. An experienced qualitative researcher reviewed the data.

RESULTS: Parents with disabilities did not define quality of life in terms of their health or disability. These parents with disabilities viewed or defined quality of life in terms of occupational autonomy, the ability to do what they want to do when they want to do it. These findings are consistent with research on occupational autonomy. The parents wanted to serve as role models for their children and the world. Parents with disabilities express the same hopes and aspirations as parents without disabilities.

DISCUSSION: Based on the literature on quality of life, one would expected to find that people with chronic conditions and disabilities define QOL in terms of their health. Parents with disabilities in this study, however, did not refer to their health when asked to define what QOL meant to them. These parents with disabilities defined quality of life in terms of occupational autonomy, their freedom to do what they want, when they want, in their everyday lives—in short, independence and participation. Interestingly, these parents with disabilities reported that their disability gave them a different perspective on life, allowing them to do things they did not know were possible. The only negative impact of their disabilities on quality of life came from the attitudes of others. Parents expressed that their hopes, wishes, and dreams were the same as those of parents without disabilities, and they wanted to leave a mark on the world through their children.

CONCLUSION: This study allowed researchers to gain insight into what this group of parents with disabilities deemed most important in their daily lives. It also explored how parents with disabilities coped while performing other roles and occupations. This study contributes new knowledge to the field of occupational therapy and other health care professions by providing the perspective of parents with disabilities on quality of life in terms of occupational autonomy, and it lays the groundwork for further research into the perspectives of parents with disabilities.