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RESEARCH INFORMATION ON INDEPENDENT LIVING Family SupportDisability affects families throughout the world, across cultures and socioeconomic groups, and in different life cycle phases. The family member with a disability may be the parent, child, sibling, or another connection to the family unit. When disability enters a family’s life, members respond based on their previous experience with disability, the nature of the disability, whether the disability was gradual or immediate, religion, coping skills, cultural values, education, sense of control over disability, beliefs about the disability cause, prior experience with health care and rehabilitation, and social supports. Role importance, too, will shift within the family. Sibling relationships, which can potentially last longer than any other human relationship, may be marginal for a long time, then dramatically increase when parents intentionally or not transfer the caregiving role. The numbers are impressive: Five million siblings alone take care of dependent siblings with mental disabilities each year. A person with a disability, too, may develop a close social network with unrelated individuals in a shared living arrangement, at an employment site, through shared interests, or other means. The use of natural supports, which could be friends, neighbors, acquaintances, co-workers, volunteers, peers, church members, and others, involves assisting an individual to develop a sense of social belonging, dignity and self-esteem. Family behaviors will emerge, change, continue, and perhaps wane over time. Typical stages in disability adjustment are shock, denial, anxiety, fear, search for meaning, and reorientation. Coping can be in the form of using defensive strategies, solving problems, seeking information, taking action, turning to others for help, or redefining the situation. During the adjustment stage, the family works on learning about equipment, finding attendant care, keeping records, obtaining legal information, and unraveling government service provision. Families, too, may foster dependency or overprotect their family members with disabilities because they fear harm and lack of knowledge about independent living and its options. When adjusting to disability, family competence?the support and ability of family to successfully adapt?can determine how well a family copes with disability, which, in turn, influences how a family member with disability adjusts to his or her disability. A healthy family eases disability adjustment, provides empathy and resiliency, and works toward overcoming challenges. A strong family’s ability to make decisions, solve problems, resolve conflicts, and change role expectations helps relieve the stress of a person with disability and encourages that person’s adherence to treatment and learning to live independently. For instance, in a family competency study involving 64 black clients with visual impairment in vocational rehabilitation in a southern state, having a sense of connectedness and knowledge that the family was there for support eased the disability experience, as did family members willing to help out with tasks associated with the disability. In the past, rehabilitation focused on the person with a disability and ignored the family. Much research, too, in psychiatry has focused on the negative aspects of the family or its caregiving; however, more up-to-date research is looking at how families can improve the lives of its family members. In a schizophrenia study, for instance, warm families who had a relaxed coping style was associated with family members with schizophrenia who had lower relapse rates and improved independent living skills. High school and college students with varying disabilities also have reported family members were their best source for future planning. Families gave support by helping pay for colleges, giving advice, and even "nagging.” They also have said families can be a barrier to independent living, because families had a hard time "letting go," thinking past the present, not listening, exhibiting a need to be right, and trying to make all the students’ decisions.” On the flip side, the transition of a child with disability into the adult world can cause parents increased anxiety. In a 1995 study, researchers found that parents of students with cognitive disabilities had stress associated with long waiting lists for services, lack of a social network for their child, and the desire for independence conflicting with parental worry. They said professionals didn’t listen yet keep pushing for independence without understanding how much effort that goal requires. To be a continued resource, families and the family member with a disability may benefit from paid personal assistance. This type of assistance increases the independence of the person with a disability and wards off the burnout, resentment, and frustration that can accompany constant caregiving. Families also can contribute to the well being of their family members with disabilities when they finally give up their expectations and move on to support their relatives in finding an optimum, fluid level of independence.
Information for this review came from the interactive Research Information on Independent Living (RIIL) database at www.GetRiil.org, which contains research summaries related to independent living with disabilities. A special effort has been made to include information that independent leaders in the field said they wanted, namely topics regarding accessible, affordable housing, effective advocacy for rural areas, effective transition from schools and nursing homes, accessible, affordable transportation, reaching underserved populations, policies that impede independent living, rural health care services, and Medicaid/Medicare regulations for durable equipment. RIIL is a joint effort of the Research and Training Center on Independent Living at the University of Kansas and the Independent Living Research Utilization (ILRU) Program of TIRR |