Transitions and Health Trajectories of Parents Caring for Children with Intellectual Disabilities
Alison Lee Eldredge
Little is known about transitions and lifetime health trajectories of parents caring for children with intellectual disabilities (ID). Parental health is important because of its far-reaching effects on parents themselves, their children, and society at large. The purpose of this qualitative study was to describe (1) how parents in mid-and later life (≥55 years of age) caring for children with mild to moderate ID narrate the transitions of this experience, and (2) parental perceptions of the
... luence of raising a child with ID on their health trajectories. Through a series of three in-depth, semistructured interviews, one of which included a lifeline illustration of their personal health trajectory, 6 couples and 6 additional mothers (n=18) shared their experiences raising children with ID and its relation to their life transitions overall. Parents narrated unique stories of resilience containing individual variations in both the content and prominence of the following challenges: (1) discovering, receiving, and accepting my child's limitations and diagnosis of ID, (2) caring for my child's health issues, (3) managing behavioral issues, (4) facilitating attainment of early developmental milestones, (5) ensuring a good education for my child, and (6) increasing my child's autonomy. In response to these challenges, parents initially took action to provide for their children. Over time, they learned to reflect over their experiences and utilize additional coping mechanisms for support. As parents adapted, they gained skills and learned lessons greatly enriching their lives. iv Parents could not link personal, physical health problems to their child's disability; however, they reported receiving benefits to their emotional, social, and spiritual health. Many parents initially experienced negative feelings, but over their lifespan, these feelings were replaced with increased love and gratitude for their child. Marriages and families became stronger as families worked together. Most parents found strength and/or meaning in their religious and spiritual practices.