Getting from here to there: future planning as reported by adult siblings of individuals with disabilities.

BACKGROUND: Although they will often serve as caregivers for their brothers-sisters with intellectual and developmental disabilities (IDD), adult siblings are rarely included in future planning. METHOD: This study examined 495 American siblings who completed a web-based questionnaire about themselves, their brother-sister with IDD, parents and whether their families completed 11 future planning activities. RESULTS: Although virtually all families completed some future planning, on average, families completed slightly over half of the 11 activities (75% completed eight or fewer). Families more frequently identified a successor to current caregivers and engaged in planning discussions with one another and with the brother-sister; least often, families completed a letter of intent or began securing residential placements. Future planning activities comprised three domains: (1) legal activities, (2) residential activities and (3) family discussions about the future. Variables relating to one or more domains included whether the brother-sister lived in or outside of family home; brother-sister independent living abilities; presence of an intellectual disability; parent caregiving ability; and current sibling caregiving and involvement with the brother-sister with IDD. CONCLUSIONS: Although most families engage in some future planning, performance varies widely within and across future planning domains. Future planning involves different considerations and interventions depending on whether one is considering legal, residential or family discussions.

Getting by with a little help from my friends: siblings report on the amount of informal support received by adults with disabilities.

BACKGROUND: Given decreased formal supports for adults with intellectual and developmental disabilities (IDDs) in many industrialised countries, we need to know more about informal, or natural, supports. METHOD: Adult siblings (N = 632) responded to a web-based survey about the informal supports received by their brothers/sisters with IDDs. RESULTS: Informal support was organised by the life domains of recreation, employment and housing. Adults with IDDs received the most extensive informal support in recreation and the least extensive in housing; low levels characterised all domains. Individuals with greater numbers of supporters in a domain experienced higher levels of support, as did those residing with family and who received more state-supported, formal benefits. CONCLUSIONS: Unpaid, informal supports supplement the support needs of adults with IDDs. Connections between formal and informal supports for adults with IDDs need to be examined further.

Determining the amount, timing and causes of mortality among infants with Down syndrome.

OBJECTIVE: To examine the amount, timing and causes/correlates of infant mortality among newborns with Down syndrome. METHODS: Using the Tennessee Department of Health Birth, Hospital Discharge and Death records, infants were identified who were born with Down syndrome from 1990 to 2006. Those who died during the first year were separated into three groups (first day death, neonatal mortality, post-neonatal mortality) and data from the Birth and Death records were used to compare the three death groups and the survival group on correlates of mortality. RESULTS: Of 1305 infants born in Tennessee with Down syndrome from 1990 to 2006, 97 died within the first year, for a mortality rate of 74 per 1000. Most Down syndrome infant deaths occurred during the post-neonatal period (56%), although many occurred during the first day (27%). Newborns who died during the first day had significantly lower birthweight, 5-min Apgar scores and gestational lengths, whereas those who died in the post-neonatal period had significantly more heart-related causes of death (all Ps < 0.001). No associations were found in this sample between increased infant mortality and maternal age, education, race, marital status or familial urban residence. CONCLUSIONS: Infants with Down syndrome experience high rates of mortality occurring at three distinct times during the first year. These groupings are tied to specific, different causes of death.

Adult siblings of individuals with Down syndrome versus with autism: findings from a large-scale US survey.

BACKGROUND: As adults with Down syndrome live increasingly longer lives, their adult siblings will most likely assume caregiving responsibilities. Yet little is known about either the sibling relationship or the general functioning of these adult siblings. Using a national, web-based survey, this study compared adult siblings of individuals with Down syndrome to siblings of individuals with autism in terms of a potential 'Down syndrome advantage' and changes across age of the brother/sister with disabilities. METHODS: Two groups were examined, siblings of persons with Down syndrome (n = 284) and with autism (n = 176). The Adult Sibling Questionnaire measured the number and length of contacts between siblings and their brothers/sisters with disabilities; the warmth, closeness and positiveness of the sibling relationship; and the sibling's overall levels of perceived health, depression and rewards of being a sibling. RESULTS: Compared with siblings of brothers/sisters with autism, siblings of brothers/sisters with Down syndrome showed closer, warmer sibling relationships, along with slightly better health, lower levels of depressive symptoms and more contacts. Across age groups of the brother/sister with disabilities, both groups showed lessened contacts, with less close sibling relationships occurring when brothers/sisters with disabilities were aged 30-44 years and 45 years and older (in Down syndrome) and 45 years and older (in autism). Within both groups, closer sibling relationships were associated with more frequent and lengthy contacts, brothers/sisters with disabilities who were better at maintaining friendships and had lower levels of behavioural/emotional problems, and siblings who felt themselves more rewarded by being a sibling to a brother/sister with disabilities. CONCLUSIONS: In line with earlier work on families of children with disabilities, this study shows an advantage for siblings of adults with Down syndrome, in terms of both sibling relationships and of slightly better health and lessened depressive symptoms. Both joint contacts and close sibling relationships do, however, differ when the brother/sister with disabilities is older. As the first generation of probable caregivers, siblings of persons with Down syndrome who are in their forties, fifties and sixties require increased research attention.

Hospitalizations of infants and young children with Down syndrome: evidence from inpatient person-records from a statewide administrative database.

BACKGROUND: Although individuals with Down syndrome are increasingly living into the adult years, infants and young children with the syndrome continue to be at increased risk for health problems. Using linked, statewide administrative hospital discharge records of all infants with Down syndrome born over a 3-year period, this study 'follows forward' over 200 infants with Down syndrome from each individual's birth until they turn 3 years of age. By utilizing this procedure, we were able to assess the amount, reasons for, and timing of inpatient hospitalization and to investigate how congenital heart defects (CHDs) relate to hospitalization for young children with Down syndrome. METHOD: This population-based, retrospective study used statewide administrative hospital discharge data. Subject inclusion criteria included residents of Tennessee, born between 1997 and 1999, and diagnosed with Down syndrome at birth. Inpatient records were linked to create person-record histories of hospitalization from birth to age 3. Main outcomes included the number of Non-birth Hospitalizations, length of stay, principal and other diagnosis codes to indicate reason(s) for hospitalization, and patient's age at first (non-birth) hospitalization. Procedure codes were added to determine if children with CHD were hospitalized primarily for operations on the heart. RESULTS: Of 217 births, 213 children survived birth; 54% (115) had CHDs. Almost half (49.8%) of all children were hospitalized before age 3; these 106 children were admitted 245 times. Children with CHDs were 2.31 times more likely to be hospitalized than children without CHDs. Respiratory illnesses affected 64.9% of all hospitalized children with CHD, were the principal diagnoses in 38.3% of their hospitalizations, and were the main principal diagnoses for non-CHD children. Thirty-three (of 77) hospitalized children with CHD underwent cardiac surgeries, accounting for 19.3% of all admissions. Median time to first hospitalization was 96 days (CI: 78-114) for CHD infants, 197 days (CI: 46-347) for non-CHD infants. CONCLUSIONS: Children with Down syndrome are at high risk for early hospitalization. Prevention and treatment of respiratory illnesses require more attention. Down syndrome is associated with early, serious, physical health problems and substantial inpatient care use.

Early vocal development in tactually aided children with severe-profound hearing loss.

The vocalizations of six children with severe-profound hearing loss were audio-recorded in two conditions during individual speech-language intervention sessions: (a) auditory amplification alone, and (b) auditory amplification plus the Tactaid II, a two-channel vibrotactile device (Franklin, 1986). Utterances were categorized according to the infraphonological framework described by Oller (1980, 1986) and Oller and Lynch (1992). Vocalizations were categorized in a developmental framework relative to mature speech. Those utterances containing well-formed consonant-vowel syllables were transcribed with broad phonetic transcription and analyzed at both the syllabic and segmental levels. Statistically significant differences were found between the two conditions for vocal volubility (i.e., quantity of vocalizations produced); subjects vocalized more when using both auditory amplification and the Tactaid II together than with auditory amplification alone. Trends in the early vocal development of these children with severe-profound hearing loss are described at the infraphonologic, segmental, and syllabic levels.

Automated electrophysiologic hearing testing using a threshold-seeking algorithm.

The efficacy of utilizing an automated algorithm to identify auditory brainstem responses (ABR) was studied. A microcomputer-based threshold-seeking algorithm utilizing click-evoked ABR was developed to determine evoked-response thresholds for automated hearing screening. The software consists of an evoked-response recognizer unit, which determines the presence or absence of a response, and a threshold-tracking unit, which controls the click intensity in order to track the threshold. The response recognizer is based upon correlation methods. Threshold tracking is accomplished using a Parameter Estimation by Sequential Testing (PEST) procedure, which is commonly used to study psychophysical properties of the auditory system. Sound level is automatically adjusted, based on the results of the recognizer and the threshold tracker. Test results were generally obtained in less than 15 minutes per ear. The results of the automated procedure correlate very highly with expert judgments of ABR threshold and show good test-retest reliability, suggesting that automated procedures are viable alternatives to traditional testing methods.

Vocal development in infants with Down syndrome and infants who are developing normally.

The development of early vocalizations was investigated with 13 infants who had Down syndrome and 27 infants who were developing normally at bimonthly intervals from 4 to 18 months of age. A perceptually based framework was used to categorize utterances according to their developmental relations with adult, well-formed, or "canonical" syllables. Over time, both groups demonstrated increased production of mature vowel and canonical consonant-vowel syllables (characterized by full vowels, consonants, and rapid, well-coordinated articulatory movements) and decreased production of less mature "quasi-vowel" and marginal syllables. Infants in both groups were also quite variable in vocal development, both within group and across time.

Influences of acculturation and musical sophistication on perception of musical interval patterns.

Influences of acculturation and musical sophistication on music perception were examined. Judgments for mistuning were obtained for Ss differing in musical sophistication who listened to a melody that was based on interval patterns from Western and Javanese musical scales. Less musically sophisticated Ss' judgments were better for Western than Javanese patterns. Musicians' thresholds did not differ across Western and Javanese patterns. Differences in judgments across scales are accountable to acculturation through listening exposure and musical sophistication gained through formal experience.

Teenagers and the mothering experience.

PURPOSE: To determine the relationship between maternal age, perceived social support, and home environment to mother-child interaction. METHOD: Thirty-three adolescent mother-child pairs and 33 older mother-child pairs were randomly selected from a pool of 63 adolescent mothers and 111 older mothers. The Nursing Child Assessment Feeding Scale (NCAFS), the Personal Resource Questionnaire (PRQ), and the Home Observation for Measurement of the Environment (HOME) were completed during a scheduled home visit. One way ANOVA and Multiple Correlation were used to analyze the data. RESULTS: Mother's sensitivity to cues and social-emotional growth-fostering from the NCAFS favored older mothers. Avoidance of restriction and punishment from the HOME favored older mothers. There was a significant relationship between perceived social support and mother-child interaction for both groups. CONCLUSIONS: Maternal behavior was related to mother's age. A mother's perception of the adequacy of her social support resources may be a critical factor in how she interacts with her child.

Multisensory narrative tracking by a profoundly deaf subject using an electrocutaneous vocoder and a vibrotactile aid.

A congenitally, profoundly deaf adult who had received 41 hours of tactual word recognition training in a previous study was assessed in tracking of connected discourse. This assessment was conducted in three phases. In the first phase, the subject used the Tacticon 1600 electrocutaneous vocoder to track a narrative in three conditions: (a) lipreading and aided hearing (L + H), (b) lipreading and tactual vocoder (L + TV), and (c) lipreading, tactual vocoder, and aided hearing (L + TV + H). Subject performance was significantly better in the L + TV + H condition than in the L + H condition, suggesting that the subject benefitted from the additional information provided by the tactual vocoder. In the second phase, the Tactaid II vibrotactile aid was used in three conditions: (a) lipreading alone, (b) lipreading and tactual aid (L + TA), and (c) lipreading, tactual aid, and aided hearing (L + TA + H). The subject was able to combine cues from the Tactaid II with those from lipreading and aided hearing. In the third phase, both tactual devices were used in six conditions: (a) lipreading alone (L), (b) lipreading and aided hearing (L + H), (c) lipreading and Tactaid II (L + TA), (d) lipreading and Tacticon 1600 (L + TV), (e) lipreading, Tactaid II, and aided hearing (L + TA + H), and (f) lipreading, Tacticon 1600, and aided hearing (L + TV + H). In this phase, only the Tactaid II significantly improved tracking performance over lipreading and aided hearing. Overall, improvement in tracking performance occurred within and across phases of this study.