Comparison of those included and not included in this analysis showed no significant difference in age group of the child, sex, child’s place of birth, number of siblings, maternal education, mother’s work status, family income or having a partner. There were differences between the groups in use of private health insurance (62% of those included had health insurance compared with 50% of those excluded, p=0.03), experiencing financial stress (46% of those included indicated “they could save a bit every now and then” compared with only 36% of those excluded, p=0.07), birth order of child (30% of children of those included were first-born compared with 45% of those excluded, p=0.02) and metropolitan or rural residence (29% of those included were from rural WA compared with only 15% of those excluded, p=0.04).
The majority (70.8%) of participating families lived in the metropolitan area. Of the 250 mothers completing the questionnaire, 237 were biological mothers, 11 were adoptive mothers, one was a foster mother and one was a stepmother. The mean age of the mothers at the time the questionnaire was completed was 44.4 years and the majority (88%) were married or in a de facto relationship. Just over a third (38.6%) of the mothers had obtained university qualifications and half (50.2%) were in full or part-time work. The combined gross income of families in 2004 was reported as < $26 000 (Australian dollars) by 26.2%, $26 000 to $51 999 by 30%, and > $51 999 by 43.8%. However, nearly half (46.5%) of the families described a high level of financial stress. The mean age of the child with Down syndrome was 11.9 years, and there were slightly more males (54.4%) than females (45.6%). Only 7.2% of the children with Down syndrome had no siblings, with the majority (58.4%) having 2 or 3 siblings. In those families with siblings the child with Down syndrome was the eldest in 22.4%.
The majority (60.9%) of children had 1 or 2 current health problems, with 8.9% having four or more and 16.6% having no current health problems. The most commonly reported were eye, ear and muscle/bone problems, in 52%, 32% and 22% respectively (co-occurring in a number of these). Although almost all (89.6%) mothers reported at least one episode of illness for their child during 2004, the vast majority of children (84%) did not require hospital admission. Using a cut-off of 44 (sensitivity/specificity of ~ 83%) we found that nearly a third (66/211, 31.3%) of children had scores above the clinical threshold for abnormal developmental behaviour.22
There were almost equal proportions of males and females (p=0.99). There were slightly higher proportions of children with abnormal scores in the 5–9 year age group (39.6%) and 10–13 years (37.8%), but no statistically significant differences between age groups. For children aged 12 years and older, the majority needed help with money management, shopping, using public transport and meal preparation.
The average maternal PCS score was 50.2 (SD: 9.6), significantly higher than but within 1 SD of the Australian female norm of 48.423
(p=0.015). The univariate analyses found that lower mean physical health scores (ie, worse physical health) were observed in mothers of children with current heart problems (mean: 44.2; SD: 12.5) (p
= 0.036) (; available at www.jpeds.com
). There was no significant difference in maternal physical health based on the number of current health problems in the child nor episodes of illness. Lower physical health scores were seen in mothers of children who had higher DBC scores (ie, more dysfunctional personalities, emotions and behaviour), with significant differences seen in the disruptive/antisocial and anxiety subscales. There was no significant difference in maternal physical health based on the child’s ability to be understood, but mothers had significantly better physical health if their child understood all conversations. Significantly better physical health scores were seen in mothers of children who required no help/supervision in learning new skills () and domestic tasks (; available at www.jpeds.com
The average maternal MCS score was 45.2 (SD: 10.6), which is significantly lower than but within 1 SD of the Australian female norm of 51.423
< 0.0001). Mother’s mental health improved with maternal age overall (by a factor of 0.16 per year of age, p=0.05). In relation to child’s age group the effect was not linear with the scores being lowest in those aged 10–13 years, significantly higher (p=0.02) in those aged 14–17 years and intermediate in those under 9 years. Once the effect of mother’s age on mental health was adjusted for, the co-occurring effect of child’s age group on mother’s mental health was no longer significant.
In the univariate analyses, worse maternal mental health was associated with the child with Down syndrome having current ear problems and current muscle/bone problems (). Compared with mothers of children with one episode of illness in 2004 those whose children had 4–6 or ≥ 7 episodes also had poorer mental health. Across all subscales, significantly lower mental health scores (ie, worse mental health) were seen in mothers of children with higher DBC scores (ie, more dysfunctional personalities, emotions and behaviour) (p < 0.001). Better mental health was observed in mothers of children who were able to make themselves understood to strangers in comparison to those only able to make their basic needs known.
With respect to functional ability, higher mental health scores (ie, better mental health) were seen in mothers of children who, compared with those who needed help, required no help/supervision in dressing waist down, problem solving () and, in children above 12 years, using the telephone (p = 0.083) and at social events (). Also, significantly better mental health was also seen in mothers of older children when only supervision was required for the daily activities of meal preparation, money management, using the telephone, using public transport, shopping, and at social events, compared with those mothers whose children required help for these tasks ().
In the final multivariate model the only child variables shown to affect maternal physical health positively were those observed on basic functional activities using the WeeFIM and in advanced functional activities in the community. Mothers of children who required no help/supervision in learning new skills, domestic tasks, public transport, and shopping, showed significantly higher mean physical health scores. On the other hand, mothers of children who scored higher on the DBC disruptive/antisocial scale (ie, more disruptive/antisocial behaviour) displayed lower mean physical health scores ( p = 0.043) ().
The final multivariate model showed the child variables positively associated with better maternal mental health were no help/supervision needed for dressing waist down, problem solving () and using the telephone, and supervision needed using the telephone, using public transport, and at social events (). Significantly lower mental health scores were seen in mothers of children who had current muscle/bone problems, ≥ 3 current health problems, 4–6 episodes of illness in 2004, ≥ 7 episodes of illness in 2004, and children who had more dysfunctional personality, emotions and behaviour ().