Dr. Elizabeth Mazur, Associate Professor of Psychology at Penn State Greater Allegheny, recently published an article, Positive and Negative Events Experienced by Parents with Acquired Physical Disabilities and Their Adolescent Children, in the journal Families, Systems, & Health of the American Psychological Association.
The article presents the findings of Mazur's research interviews with 50 respondents including parents with acquired physical disabilities, their spouses, adolescent children, and health care professionals and researchers in the physical disability field.
Mazur's study focused on the daily life experiences of parents who acquired a physical disability after the birth of their first child; therefore, they all began parenting expecting to have mobility and good health during their child raising years and many of their adolescent children, and certainly the spouses, remembered the parents before disability?s onset.
Participants were recruited through the regional chapter of the Multiple Sclerosis Society, their affiliate support groups, a local Parents with Disabilities Project, advertisements in the Pittsburgh Post-Gazette, referrals from other participants, and email notification to members of the Penn State Greater Allegheny community. Physical disability was defined as a substantial limitation of one or more basic physical activities such as walking, climbing stairs, reaching, lifting, or carrying. Parents who participated and those of the interviewed adolescents were required to have a diagnosed chronic, nonterminal physical disability of at least 6 months duration that began after the first child?s birth, have at least one child ages12-21 living at home, and not have severe vision, auditory, or cognitive disabilities.
Those who chose to participate were individually interviewed by phone, and these interviews were coded to develop two comprehensive lists (positive and negative events) of all topics discussed for each scale (Adolescent and Parent). Positive events were those that participants considered helpful, and negative events were those participants considered difficult or challenging.
Mazur?s study found that the events most frequently nominated by participants as positive for the parents included the parent attending a support group for people with the same or similar disability; child and spouse each assisting with household chores, parent discussing the disability with the child, and the parent spending enjoyable free time with one?s child. Participants most frequently nominated the following experiences as negative for physically disabled parents: being unable to participate in an activity with one?s child, such as playing sports, fishing, and roughhousing; a household chore taking more time to complete than before the disability or than it would for a nondisabled person; the parent being unable to take the child to a desired place or activity; and the parent asking another adult for assistance
The events most frequently volunteered as positive for children who lived with a parent with a physical disability included discussion of the disability between the child and the parent, meeting families of persons with similar disabilities as the parent?s, the child reading about the parent?s disability on his or her own, and the child writing a paper about the disability for school. The experiences most frequently nominated as negative included the child doing a household chore; and the parent with physical disability struggling with an everyday task, being unable to take the child some place he or she wanted to go, needing help from the child for daily personal tasks, and being unable to participate in a physical activity with the child.
This study was the first to look closely at the daily hassles and uplifts, or what some disability activitists call ?disabling? and ?enabling? process, in the lives of parents with physical disabilities and of their adolescent children. There has been little research on this topic, and contrary to common misperceptions of disability as tragedy, parents with acquired physical disabilities and their adolescent children do not appear besieged by aversive disability experiences, though all but one study participant volunteered at least one negative event. In fact, overall, participants identified more positive than negative experiences related to parental physical disability.
Mazur?s research was made possible by both a direct Penn State Research Development Grant to pay participants and for materials and by student stipends for undergraduate researchers, who conducted all interviews, coded the data, and helped analyze the results via computer.