Item
Residential Transitions Among Adults With Intellectual Disability Across 20 Years
Metadados
Título
Residential Transitions Among Adults With Intellectual Disability Across 20 Years
Descrição
AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES - AAIDD
Autor
Ashley C. Woodman, Marsha R. Mailick, Kristy A. Anderson, and Anna J. Esbensen
Língua
Ano que foi publicado
2014
País de Origem
Tipo de pesquisa
Metodologia
The present study addresses critical gaps in the literature by examining residential transitions among 303 adults with intellectual disability (ID) over 10 years (Part 1) and 75 adults with Down syndrome over 20 years (Part 2)
Amostra
Part 1: Adults with intellectual disability (n = 362). Part 1 of the present study includes data from 362 adults with intellectual disability from the first eight waves of data collection (T1–T8). A total of 364 families participated in the study at T8. From the original sample, 35 were deceased and 62 were unable to be located or declined to participate. Two cases were excluded due to incomplete residential history data. Of the 362 adults in the sample for Part 1, 133 had Down syndrome; and 71 of these were included in the sample for Part 2. Adults with intellectual disability ranged in age from 25 to 68 (M 5 43.94, SD 5 7.30) at T8, and 55% were male. (See Table 1 for additional information.) The mother remained the primary respondent in 303 families. Two-thirds (66%) of mothers co resided with their child with intellectual disability at the time of the T8 interview. Mothers ranged in age from 64 to 95 years (M 5 75.04, SD 5 5.99) at T8. Fathers served as primary respondents in 14 families and ranged in age from 65 to 91 years (M 5 77.38, SD 5 7.38). Among fathers, 64% co resided with their child with intellectual disability at T8. For 39 families, an adult sibling served as the respondent. Siblings ranged in age from 38 to 63 years (M 5 51.02, SD 5 6.04). The majority (62%) of sibling respondents were sisters. Less than one quarter (21%) of sibling respondents were co-residing with their sibling with intellectual disability at the time of the T8 interview. In one family, the adult’s cousin served as primary respondent (age 44 years). In the remaining 5 families, the primary respondent was a nonrela tive. None of the nonrelative or other relative respondents were co-residing with the adult with intellectual disability. Table 2 shows descriptive statistics on demographic characteristics at T1. The sample for Part 1 of the study was compared to the 64 families in the original sample that did not participate at T8, excluding the 35 families in which the adult was deceased at the time of the T8 interview. At the start of the study (T1), families included in the sample for Part 1 reported higher family income, t(401) 5 23.71, p , .01, and higher maternal education, t(420) 5 24.11, p , .01, than other families. There were no significant differences in maternal age, t(420) 51.80, p 5 .07 or marital status, x2 (4, N 5 422) 54.46, p 5 .35, at T1. Families who participated in the study at T8 were more likely to be from Wisconsin than other families, x2 (1, N 5 422) 5 21.56, p , .01. With respect to the adult with intellectual disability, there were no significant differences in level of intellectual disability, x2 (3, N5411)55.41,p5.14, gender, x2 (1, N 5 422) 5.09, p 5 .76, adaptive behavior, t(420) 5 2.95,adults who participated in the study at T8 and those who dropped out. Adults with intellectual disability who continued to participate were significantly younger than the other adults at the start of the study, t(420) 5 3.56, p , .01. Part 2: Adults with Downsyndrome(n=75). Part 2 of the present study includes data from 75 adults with Down syndrome across nine waves of data collection (T1–T9). From the original sample of 169 adults with Down syndrome, 58 were deceased; and 32 adults were unable to be located or declined to participate at T9. An additional 4 adults with Down syndrome had no surviving family members to contact. Four of the adults with Down syndrome who participated at T9 were excluded from the sample in Part 1 due to missing data at T8. Adults with Down syndrome ranged in age from 37 to 65 years (M 5 51.1, SD 5 6.6) at T9, and 65% were male. Mothers remained the primary respondent in 34families at T9. These mothers ranged in age from 76 to 97 years (M 5 84.5, SD 5 5.1). Over one third (38%) of mothers co-resided with their child with Down syndrome. Fathers served as primary respondents in 6 families, with only one father co residing with his child with Down syndrome. Fathers ranged in age from 80 to 85 years (M 5 82.3, SD 5 1.9). Siblings served as primary respondents in the remaining 35 families, of which 35% were co-residing with their sibling with Down syndrome. Siblings ranged in age from 39 to 74 years (M 5 60.0, SD 5 7.2). The majority of siblings were sisters (71.4%). Table 2 shows descrip tive statistics on demographic characteristics at T1. The sample for Part 2 of the study was compared to the 37 other families in the original sample with adults with Down syndrome that did not participate at T9, excluding the 57 families in which the adult with Down syndrome was deceased at the time of the T9 interview. At the start of the study (T1), families in the sample for Part 2 reported higher maternal education, t(110) 522.01, p 5 .05, than other families. There were no significant differences in family income, t(108) 5 21.92, p 5 .06, maternal age, t(110) 5 1.47, p 5.15, or marital status, x2 (2, N 5 112) 5 4.20, p 5 .12, at T1. Families who participated in the study at T9 were not more likely to be from Wisconsin than other families, x2 (1, N 5 112) 5 2.46, p 5 .12. With respect to the adult with Down syndrome, there were no significant differences in level of intellectual disability, x2(3, N 5 112) 5 .77, p 5 .86, gender, x2 (1, N 5 112) 5 1.33, p 5 .25, age, t(110) 5 1.47, p 5 .14, or adaptive behavior, t(110) 5 21.50, p 5 .14, between adults who participated in the study at T9 and those who dropped out. Adults with Down syndrome who continued to participate reported significantly better health than other adults with Down syndrome at the start of the study, t(110) 5 22.45, p 5 .02.
Método de Pesquisa
Data were drawn from a larger longitudinal study of 461 families rearing children with intellectual disability. The first eight waves of data collection [Time 1–Time 8 (T1–T8)] were collected at 18 month intervals from 1988 to 2000. The final wave of data collection [Time 9 (T9)] took place 10 years later (2010/2011) and included only adults with Down syndrome. At the outset of the study, the son or daughter with intellectual disability was living at home with a mother between the ages of 55 and 85 (Krauss & Seltzer, 1999). Half the respondents lived in Massachusetts, and half lived in Wisconsin. Data collection procedures were identical in both states. The mother served as the primary respondent at each wave unless she either died or became incapacitated, in which case a ‘‘successor caregiver’’ served as the primary respon dent. If the mother was not alive or well enough to participate, fathers served as the primary respon dent. If neither the mother nor the father were alive or well enough to participate, an adult sibling served as the respondent. Other relative or nonrelative caregivers were identified in the event that siblings were unable to participate.
Principais Descobertas
Several characteristics of the adults with ID differed across settings, most notably adaptive behavior and the number of residential transitions, whereas characteristics such as age, type of disability, and behavior problems were less predictive of residential placements. The number of moves over the course of the study varied widely, with critical links to earlier family dynamics, social relationships, and health and adaptive behavior.
Comentário Avaliativo
This study has several limitations. First, the sample is of Caucasian descent, thereby limiting the generalizability to other racial or ethnic groups. Although we captured the number of residential transitions over the 20-year period, this study did not examine the reasons for relocations. Changes in adult and family characteristics were also not captured. Declining health, for instance, may have prompted relocations over the course of the study. This study may have lacked sufficient power to detect differences across residential groups, given the small group sizes. The number of adults living in nursing home or hospital settings was particularly small; therefore, the present results should be interpreted with caution because this small group may not be representa tive of adults in nursing home/hospital settings more broadly. The findings from the attrition analyses suggest the samples used in these analyses may be biased toward families with higher education and income, thereby limiting the generalizability to other socioeconomic groups. Because socioeconomic status was a risk factor for recurrent transitions, future research should make explicit efforts to capture the experiences of adults with intellectual disability from low income families. Last, this study relied on caregiver report and did not incorporate the perspectives of the adults with intellectual disability themselves. Consideration of their residential preferences would elucidate our understanding of reasons for residential transitions.