Jeff Jackson and Dr. Susanne Frost Olsen, Marriage, Family, and Human Development
The purposes of this research study are to (a) determine the overall patterns evident in the processes involved in deciding to place a family member with severe developmental disabilities in an out-of-homecare program or facility, (b) examine parental perceptions regarding the effectiveness of those processes, (c) investigate the resultant psycho-emotional effects of this decision on the family, and (d) evaluate the perceived availability and effectiveness of counseling available to families.
Executing this research project has been more difficult than anticipated; unfortunately, the research for this study has not yet been completed. The projected date of completion for this study was originally August 31, 2000; however, extenuating circumstances beyond the researcher=s control have caused the projected completion date to be pushed back to May 31, 2001. Reasons for this change are as follows.
The first setback occurred shortly after the principal investigator was awarded an ORCA grant. While the proposal for Institutional Review Board (IRB) was being finalized, the researcher serendipitously discovered that research involving people with disabilities also had to be approved by the Department of Human Services Protection of Human Rights Review (PHRR) Committee, the IRB for the State Department of Human Services. Because the PHRR Committee deals specifically with research on people with disabilities, the stipulations and requirements were more specific and detailed than those of the IRB, which handles research proposals from all fields and areas. Consequently, several aspects of the proposal had to be reconsidered and reworked. Although this process required more time, deliberation, and research, the resulting additions and modifications improved the quality and structure of the proposed study.
The other predominant setback was a difficulty in obtaining the sample of prospective subjects. In accordance with confidentiality laws regarding people with disabilities and their families, the only way to recruit appropriate subjects for this study was to ask agencies providing services to the targeted population to make initial contacts on the researcher=s behalf. Two agencies agreed to assist in the process of recruitment, which was greatly appreciated, seeing as they were not receiving any direct compensation for their help. The agencies had to call the parents of their clients to briefly inform them about the purposes of this study and ask if they would be willing to have their name and phone number released to a researcher who would contact and inform them more thoroughly about the study, and answer any of their questions. The agencies were supposed to have given the researcher names by the end of April; however, none were received until the end of July. This was a major setback as the researcher had initially planned to do all of the interviewing during the summer. Since the names were received, two interviews have been successfully completed. The researcher anticipates concluding the remaining 28 interviews by the end of January 2001.
From the first two interviews, some preliminary general ideas and impressions include the following. Parents report that there tend to be specific triggering events that cause them to realize that the safety for their child, the family, and/or the neighborhood might be jeopardized if placement for their child is not found. Parents seem satisfied with their approach to the decision-making process. Study participants also report that compared to pre-placement family life, post-placement family life seems less stressful. Placement decisions tend to be permanent in nature, with there being few circumstance that would reverse their decision. They also report that waiting lists for placement services are quite extensive.
Parents have expressed a desire for specialized support groups that cater more specifically and effectively to their needs. In addition, parents perceive that available therapy is not adequate for people in their situation. Finally, many of the recommendations from the parents interviewed to parents in similar circumstances have centered around feeling guilt: feeling guilty is normal; being involved in your child=s programs, habilitation plans, and having consistent visits will ease the guilt and the pain of the placement decision; it takes time to get over feelings of guilt.
It is too early to tell if one dominant decision-making process will be determined; most likely the process will be situational, varying from family to family according to the particular needs and factors associated with the respective circumstances. At this point, creating a checklist of questions to consider when contemplating placement seems a possibility for helping parents in the future that is both flexible and feasible.
It is hoped that the results of this study will provide insights and understanding regarding the decision making process parents go through when considering out-of-home placement, ultimately, providing valuable information and assistance to families who are in the process of making the decision and those who will face the decision to place their child in an out-of-home-care program or facility in the future.