Journal of Intellectual Disability Research (2006 in press)

Stress trajectories in mothers of young children with Down syndrome

D. E. Most¹, D. J. Fidler², C. Laforce-Booth³ & J. Kelly³
¹School of Education, Colorado State University, Fort Collins, CO, USA
²Human Development and Family Studies, Colorado State University, Fort Collins, CO, USA
³Family & Child Nursing, University of Washington, Seattle, WA, USA

Background. In this study, we investigated the early development of stress in mothers of children with Down syndrome, compared with mothers of children with developmental disabilities of mixed aetiologies. Growth modelling analyses were used to explore: (1) whether mothers of children with Down syndrome demonstrated distinct patterns of stress during their children's early development, compared with mothers of children with other developmental disabilities; and (2) whether there was a relation between child behavioural characteristics and the level and rate of change in stress observed in each population.
Method. The stress trajectories of mothers of young children with Down syndrome (n = 25) and a mixed-aetiology comparison group (n = 49) were estimated, using growth modelling on data collected at ages of 15, 30 and 45 months.
Results. On average, stress in the mixed comparison group was higher at Time 1 and remained unchanged over time, while stress in the Down syndrome group was lower at Time 1 but increased steadily. After taking diagnostic group membership into account, more advanced cognitive-linguistic functioning and lower levels of maladaptive behaviours at all time points were associated with lower levels of maternal stress.
Conclusions. These findings suggest that the cognitive-linguistic and behavioural trajectory observed in early development in Down syndrome may contribute to the changes in maternal stress levels observed throughout these early years. Implications for developing targeted and time- sensitive family interventions for families of children with Down syndrome are discussed.
Scandinavian Journal of Caring Sciences 16 (4): 424 (2002 Dec)

Swedish parents of children with Down's syndrome. Parental stress and sense of coherence in relation to employment rate and time spent in child care

G. Hedov1¹, G. Annerén² & K. Wikblad³
¹Unit of Paediatrics, Department of Woman and Child Health, Uppsala University, Uppsala, ²Unit of Clinical Genetics, Department of Genetics and Pathology, Uppsala University, Uppsala and ³Department of Welfare and Care, Faculty of Health Sciences, Linköping University, Linköping, Sweden
Becoming parents of a child with Down's syndrome (DS) challenges the adjustment ability in parenthood. Individuals with higher sense of coherence (SOC) are supposed to manage stressors better than those with lower SOC. The aims of this study were to investigate parental self-perceived stress, SOC, frequency of gainful employment and amount of time spent on child care in Swedish DS parents (165 parents; 86 mothers, 79 fathers) and to compare those with control parents of healthy children (169 parents; 87 mothers, 82 fathers). The mean age of the children was 4.7 years. Parents responded to questionnaires separately including Hymovich's Parent Perception Inventory as stress measurement and Antonovsky's short version of the Orientation to Life. No differences concerning total employment rate were observed, but the DS mothers were more often employed part-time than control mothers. The DS parents did not spend more time on child care than the control parents and they did not differ in mean SOC score, but the DS parents perceived greater stress. The differences in stress, particularly between the DS and control mothers, were related to time-demanding areas. Parents with high SOC scores experienced significantly less self-perceived stress.
Journal of Intellectual Disability Research 47 (4-5): 273-284 (2003 May)

Fathers of children with Down's syndrome versus other types of intellectual disability: perceptions, stress and involvement

L. A. Ricci & R. M. Hodapp
UCLA Graduate School of Education and Information Studies, Los Angeles, California, USA

Background. The present study examined fathers' perceptions of, stress relating to and involvement with children with Down's syndrome (DS) (n = 30) versus those with other types of intellectual disability (ID) (n = 20).
Methods. Fathers and mothers completed questionnaires about their children's personalities and maladaptive behaviours, their own parenting stress, and the fathers' level of involvement.
Results. Both fathers and mothers rated their children with DS as having more positive personality traits and fewer maladaptive behaviours. Possibly because of these positive perceptions, fathers of children with DS also reported less child-related stress, particularly in the areas of acceptability, adaptability and demandingness. The two groups of fathers were very similarly involved in child rearing. The personality, age and maladaptive behaviours of the children related to stress levels in the fathers of children with DS, while maladaptive behaviours, gender and the fathers' education levels related to stress levels in the fathers of children with other types of ID.
Conclusions. These results highlight the importance of examining parental stress and involvement with children with different types of ID.
Parenting 1(4): 317-337 (2001)

Less Stress, More Rewarding: Parenting Children With Down Syndrome

Robert M. Hodapp, Tran M. Ly, Deborah J. Fidler, Leila A. Ricci

Objective. We argue that, compared to other children with disabilities, parents of children with Down syndrome may experience less stress and more rewards. Design. After reviewing changes in studies examining parenting children with disabilities, we note how specific genetic disorders predispose children to different, etiology-related behaviors, which in turn predispose their parents to particular reactions. We then survey studies of both stress and rewardingness in parents of children with Down syndrome versus children with other disabilities. Results. Parents of children with Down syndrome report less stress and more child-related rewards than parents of children with other disabilities; indeed, parents of children with Down syndrome may feel equally rewarded compared to parents of same-aged typical children. Conclusions. By comparing feelings of parents of children with Down syndrome versus children with other disabilities, we begin to understand which child behaviors bring about which parental reactions. Such information provides both theoretical and practical benefits to professionals interested in parenting.
Early Education & Development 11 (4): 407-422 (2000 Jul)

Positive adjustment in parents rearing children with Down syndrome

Flaherty, Evelyn M.; Masters Glidden, Laraine
St Mary's College of Maryland, Department of Psychology, St Mary's City, MD, USA

The current research investigated adjustment in mothers and fathers rearing children with Down syndrome. Families who had a Down syndrome child by birth were compared with families who had knowingly adopted a child with Down syndrome and, therefore, were likely to be well-adjusted. With this design, child characteristics were controlled to assess more accurately the impact of a birth of a child with developmental disabilities on family adjustment. For this study, both mothers and fathers completed the Family Strengths Inventory, the Holroyd QRS, and the Locke-Wallace Marital Adjustment Test. Additionally, 105 mothers only completed the Beck Depression Inventory and the Nelson Index of Parental Satisfaction with Child. Results demonstrated that birth mothers and fathers were functioning quite similarly to adoptive mothers and fathers on the outcome variables. Only one significant difference was found and the adoptive/birth factor accounted for only 8% of it variance. Overall, birth as well as adoptive families appeared to be adjusting well to the challenges of rearing a child with Down syndrome.
Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation 9 (4): 415-422 (2000 Jun)

Self-perceived health in Swedish parents of children with Down's syndrome

Hedov, G.; Annerén, G.; Wikblad, K.
Uppsala University, Children's Hospital, Department of Clinical Genetics, Uppsala, Sweden

Investigated self-perceived health in parents of children with Down's syndrome (DS). 165 parents (mean ages 37.8-39.6 yrs) of 86 DS children (aged 3.5-7 yrs) completed questionnaires. The survey assessed 8 health domains, including physical functioning, vitality, and mental health. Results show significant differences in self-perception of health between the mothers and fathers of DS children, with mothers reporting health problems more frequently than fathers. DS mothers reported significantly lower vitality scores than did DS fathers. DS mothers reported lower scores in mental health and tendencies to lower scores in another 4 domains compared with mothers of children without DS. DS fathers had lower mean scores for vitality and mental health compared with fathers of children without DS.
International Journal of Nursing Studies 36 (6): 465-477 (1999 Dec)

Longitudinal effects of an early family intervention programme on the adaptation of parents of children with a disability

Pelchat, Diane; Bisson, Jocelyn; Ricard, Nicole; Perreault, Michel; Bouchard, J. -M.
Universite de Montreal, Faculty of Nursing, Montreal, PQ, Canada

Assessed the longitudinal effects of an original early intervention program on the adaptation of parents of children with a disability (Down syndrome [DS] and cleft lip/palate [CLP]). Variations in the effects of the program according to the time of measurement, the type of disability and parent's gender are also examined.74 17-52 yr old mothers and fathers of children with DS or CLP who did or did not participate in the program were assessed. A series of analyses was conducted to compare the experimental and control groups on family and demographic variables and treatment. Results show a better adaptation among parents who participated in the intervention program. These parents had lower levels of parental stress, more positive perceptions and attitudes concerning their child's disability and their parental situation, they were more confident in their own resources and the help they could receive from others, they had lower levels of emotional distress, anxiety and depression and they perceived more emotional support from their spouse. These gains were maintained throughout the year when the children were between 6-18 mo of age, they were relatively similar for parents of children with DS and parents of children with CLP, as well as for mothers and fathers.
American Journal on Mental Retardation 104 (5): 422-36 (1999 Sep)

Mothers and fathers of children with Down syndrome: Parental stress and involvement in childcare

*Roach, Mary A.; *Orsmond, Gael I.; Barratt, Marguerite S.
* University of Wisconsin-Madison and Michigan State University

Parental stress was examined in socioeconomically matched samples of mothers and fathers (aged 21-50 yrs) of children with Down syndrome (aged 15-57 mo) and typically developing children (aged 9-57 mo). Parents of children with Down syndrome perceived more caregiving difficulties, child-related stress (distractibility, demandingness, unacceptability), and parent-related stress (incompetence, depression, health problems, role-restriction) than did parents of typically developing children. For the combined groups of parents, mothers' stress was associated with children's caregiving difficulties, fathers' stress with children's group status (Down syndrome, typically developing). Mothers who reported more responsibility for childcare perceived more difficulties with health, role restriction, and spousal support. Fathers who reported more responsibility for childcare perceived fewer difficulties with attachment and parental competence. Partner stress was associated both with mothers' and with fathers' stress.
Journal of Rational-Emotive & Cognitive Behavior Therapy 15 (4): 249-67 (1997)

The effect of rational-emotive parent education on the stress of mothers of young children with Down syndrome

Greaves, D.
Psychology & Health 12 (4): 579-587 (1997)

Parents' attributions of blame for the birth of a child with Down syndrome: A pilot study

Hall, Sue; Bobrow, Martin; Marteau, Theresa M.
University of London, United Medical & Dental Schools of Guy's & St Thomas's Hospitals, Psychology & Genetics Research Group, London, England

Investigated parents' attributions of blame for, and adjustment to, the birth of a child with Down's syndrome (DS), within the context of widespread availability of prenatal screening. Parents of 28 children with DS participated in the study; all 28 mothers and 23 of the fathers agreed to be interviewed. Results show that no parent blamed themself or their partner, but 8 fathers and 5 mothers blamed others. In every case this was a health professional or the health care system in general for not having prevented the birth of their child with DS by detecting the affected pregnancy. Mothers, but not fathers, who blamed were significantly more angry and depressed than those who did not blame. In contrast to parents who did not blame, both fathers and mothers who blamed had higher scores on a parenting stress scale.
American Journal on Mental Retardation 102 (2): 161-71 (1997 Sep)

Psychological Distress of Parents of Infants with Down Syndrome

Scott, B. S., Atkinson, L., Minton, H. L., & Bowman, T.
University of Hong Kong

The distress level of parents who had infants with Down syndrome (study parents) was compared to that of control parents of infants without disability (infants were all less than 2 years of age). Data were collected in two independent surveys. We matched subjects case-by-case on socioeconomic status. Analysis of pooled data indicated significantly greater depression for the study parents. However, effect sizes were small, and the prevalence of clinical depression was 5.56% (n = 108) among matched study parents and 4.26% (n = 188) among unmatched study parents. Parenting an infant with Down syndrome may cause less distress than previously thought.
American Journal on Mental Retardation 100 (2): 115-127 (1995 Sep)

Effects of children with Down syndrome on parents' activities

Barnett, W. Steven; Boyce, Glenna C.
Rutgers University, New Brunswick, NJ, USA

Investigated the effects of children with Down syndrome (DS) on parents' daily activities. Data on the allocation of time to daily activities were obtained from time diaries provided by 2 samples of parents with at least one child under age 17 yrs. Parents in one sample had a child with DS; parents in the other sample did not. Both parents of a child with DS devoted more time to child care and spent less time in social activities. Mothers of children with DS allocated less time to paid employment and increased child care time by 9 hrs per week. Fathers increased child care time by 4 hrs per week and reduced social activities by 2 hrs per week. Time allocated to shopping, passive leisure, personal care, and educational activities was not affected.
Developmental Psychology 31 (4): 668-676 (1995 Jul)

Cognitive coping, affective distress, and maternal sensitivity: Mothers of children with Down syndrome

Atkinson, Leslie; Scott, Brian; Chisholm, Vivienne; Blackwell, Janis; et al

This study investigated relations among maternal cognitive coping style (approach-avoidance), affective state, and sensitivity. Fifty-six mothers and their children with Down syndrome were followed for 2 years. Cognitive coping and affective distress inventories were administered and sensitivity was rated on the basis of mother-child observations. Results indicated that approach and avoidance have been widely studied under different designations and are stable across time. These cognitive coping variables may mediate the stress of parenting a child with a disability in complex ways. Mothers with a strong tendency to monitor stressors report greater affective distress than do mothers who adopt a less vigilant coping style. At the same time, cognitive avoidance of stressors and affective distress reduce the behavioral sensitivity of the mother toward her child.
Journal of Child & Family Studies 4 (1): 103-117 (1995 Mar)

Fathers' views of the effects on their families of children with Down syndrome

Hornby, Garry
University Hull, School of Education, England

Examined fathers' views about the effects of children with Down's syndrome (DS) on themselves and their families. Taped interviews were obtained from 90 fathers (aged 27-62 yrs) of children (aged 7-14 yrs) with DS. Analysis of the interview data revealed 28 categories of comments made by Ss. The most frequent comment, made by 46% of the Ss, was about the cheerful personality of their child with DS. About 42% of the Ss talked about the initial trauma they experienced following the diagnosis. 43% of Ss discussed the restrictions imposed on the family, and 30% commented that the child had minimal effects on family life. The most frequent concern, expressed by 36% of Ss, was the long-term provision for their children. Thus, although many fathers experience some negative effects of having a child with DS, only a small minority of them experience difficulties so great that some form of intervention may be needed.
Psychological Medicine 25 (2): 419-422 (1995 Mar)

The stability of the Ways of Coping (Revised) Questionnaire over time in parents of children with Down's syndrome: A research note

Hatton, Christopher; Knussen, C.; Sloper, P.; Turner, S.
Victoria University of Manchester, Hester Adrian Research Center, England

Assessed the stability of the Ways of Coping (Revised) Questionnaire. The scores of 68 mothers and 53 fathers of school aged children with Down's syndrome, were compared over 3 yrs. Five coping strategy subscales were used; mothers' and fathers' scores were analyzed separately. The parents' scores did not change significantly with time. Time 1 and Time 2 scores were strongly associated on all subscales, except for the fathers' scores on the Stoicism subscale. Test-retest reliability was adequate for all subscales, except mothers' scores on Passive Acceptance subscale, and fathers' on the Stoicism subscale. Results demonstrate the stability of the Ways of Coping (Revised) Questionnaire over the time period studied, and illustrate the utility of this instrument for investigating coping in families with special problems.
Australia & New Zealand Journal of Developmental Disabilities 20 (3): 175-188 (1995)

A comparison of couples' views on caring for their child with intellectual disability

Ainge, David J.
James Cook University of North Queensland, School of Education, Townsville, Australia

Compared the impact of having a child with an intellectual disability (e.g., Down's syndrome) on parenting views of both fathers and mothers. Fathers and mothers (aged 27-70 yrs) of 19 children (aged 4-31 yrs) with intellectual disabilities completed a rating scale regarding 84 issues involved in parenting a person with intellectual disabilities and rated their feelings about each issue. On over 75% of items, couples either rated identically or disagreed only marginally, supporting the view that children with intellectual disability have a deterministic influence on both their parents.
American Journal on Mental Retardation 98 (4): 463-480 (1994 Jan)

Relations among maternal stress, cognitive development, and early intervention in middle - and low - SES infants with developmental disabilities

Brinker, R.P., Seifer, R., Sameroff, A.J.
University of Illinois at Chicago

Relations between maternal stress and the development of infants with handicaps was examined in 72 middle-SES and 72 low-SES families who attended a weekly early intervention program. Measures of maternal stress and development of infants were obtained 10 months apart. Regression analyses predicted 81% of variance in later developmental level with initial Bayley MA, initial Mental Development Index (MDI), SES, initial stress, early intervention participation, and SES x Initial Stress x Attendance interaction. Subsequent maternal stress was predicted (42% variance explained) by initial stress, attendance, initial MDI, number of intervention agencies and MDI x SES x Attendance. Results were interpreted in terms of a transactional model.
Children & Society 8 (1): 31-41 (1994)

Fathers—the secondary partners: Professional perceptions and fathers' reflections

Herbert, Elaine; Carpenter, Barry
Solihull Preschool & Home Teaching Service, England

Explores professional perceptions and fathers' reflections of issues surrounding a father's role in the early stages of parenting a child with a disability. Fathers of 9 infants with Down's syndrome born in a local health authority in 1986 and 1987 were interviewed. Topics discussed included disclosure of the diagnosis, information seeking, sources of support, and planning for the future, as well as professional predictions and perceptions of the father. Issues of professional accessibility during the period following the birth of a child with a disability are also examined, and implications for the parent-professional relationship are discussed including training, coordination of services, and the addressing of needs within the family.
Journal of Autism & Developmental Disorders 22 (2): 249-263 (1992 Jun)

Psychosocial adaptation of fathers of children with autism, Down syndrome, and normal development

Rodrigue, James R.; Morgan, Sam B.; Geffken, Gary R.
University of Florida, J. Hillis Miller Health Center, Gainesville, USA

Compared fathers of 20 autistic (mean age 10.8 yrs), 20 Down syndrome (mean age 11.9 yrs), and 20 developmentally normal children (mean age 3.8 yrs) on measures of psychosocial adaptation. Groups were matched on child's adaptive behavior age equivalent, gender, birth order, family size, and socioeconomic status (SES). The 3 groups differed significantly on measures of intrapersonal and family functioning but not on social-ecological variables. Fathers of children with autism or Down syndrome reported more frequent use of wish-fulfilling fantasy and information seeking as coping strategies as well as more financial impact and disruption of family activities than did fathers of developmentally normal children. There were few differences between fathers of children with autism and those of children with Down syndrome.
Journal of Autism & Developmental Disorders 21 (2): 159-176 (1991 Jun)

The pattern of care in families of adults with a mental handicap: A comparison between families of autistic adults and Down syndrome adults

Holmes, Nan; Carr, Janet
Kingston & Esher Health Authority, Department of Psychology, England

Studied the pattern of care in 39 families with a mentally handicapped adult member (20 with Down syndrome; 19 with autism). All Ss were aged 18-38 yrs. Interview data revealed no significant differences between the mothers, the fathers, or the siblings of Down syndrome and autistic adults in the amount of help offered with physical care, domestic tasks, and supervision duties. However, most caregiving fell on mothers, with fathers helping mainly with supervision rather than physical care or domestic tasks. Siblings offered less help than fathers. Autistic Ss exhibited significantly more behavior problems. Methods of coping with problems differed. Parents of autistic adults were more likely to "give in" and less likely to tell the handicapped person to stop than parents of Down syndrome adults.
Journal of Child Psychology & Psychiatry & Allied Disciplines 32 (4): 655-676 (1991 May)

Factors related to stress and satisfaction with life in families of children with Down's syndrome

Sloper, Patricia; Knussen, Christina; Turner, Stephen; Cunningham, Cliff C.
Victoria University of Manchester, Hester Adrian Research Center, England

In a study of 123 families of children (aged 6-14 yrs) with Down's syndrome in England, measures of parent, family, and child characteristics were obtained from mothers and fathers. Multivariable analyses investigated their relationships to outcome measures of psychosomatic symptoms of stress and parents' perceived satisfaction with life. Personality factors were related to outcome for both parents. For mothers, the children's levels of behavior problems, excitability, and self-sufficiency were strongly related to outcome. Coping strategies, family relationships, and socioeconomic factors also showed significant effects. For fathers, child characteristics were not related to outcome. The marital relationship was an important factor, and there was evidence that factors external to the family acted as stressors.
Exceptionality 2 (2): 97-110 (1991)

Parenting stress, child behavior problems, and dysphoria in parents of children with autism, Down syndrome, behavior disorders, and normal development

Dumas, J. E., Wolf, L. C., Fisman, S. N., & Culligan, A.
Dissertation 159 p. (1991)

Leisure patterns of families who have a child with Down's syndrome

McLachlin, Laura Jane
Texas Woman's University

The study investigated the question "How does a child with Down's Syndrome impact family leisure patterns?" ln-depth interviews were conducted with 25 intact nuclear families who had at least three children one or more of whom had Down's syndrome. Four major conclusions were made. First, subjects perceived family members to be an important element of leisure experiences. Second, the majority of family leisure time was spent in sports-related activities, vacations, and television and video camera recorder (VCR) watching. Third, parents viewed recreation integration as a positive experience for both the child with Down's syndrome and for other children. However, minimal parental involvement in advocating for community services was reported. Finally, in most cases the presence of a child with Down's Syndrome did not significantly alter family leisure patterns. Some families, however, exhibited extreme adjustments based primarily on the severity of physical complications and behavioral problems associated with Down's Syndrome.
Canadian Journal of Psychiatry 34 (6): 519-525 (1989 Aug)

Marital intimacy in parents of exceptional children

Fisman, Sandra N.; Wolf, Lucille C.; Noh, Samuel
Children's Hospital of Western Ontario, London, Canada

Examined the role of perceived parenting stress and parental depression on marital intimacy between parents of handicapped children vs developmentally normal children, and investigated discrepancies between husbands' and wives' reports of marital intimacy. The parents of 31 autistic children (mean age 9.34 yrs), 31 Down syndrome children (mean age 9.11 yrs), and 62 developmentally normal children (mean age 7.62 yrs), matched for both mental and chronological age were studied. Results indicate significantly greater stress and depression, as well as lower marital intimacy for mothers of autistic children than for mothers of normal children or for mothers of Down syndrome children. Fathers of autistic children experienced significantly higher parenting stress than the other groups, as well as lower marital intimacy.
Nursing Research 38 (1): 25-30 (1989 Jan-Feb)

Self-reported adjustment, chronic sorrow, and coping of parents of children with Down syndrome

Damrosch, Shirley P.; Perry, Lesley A.
University of Maryland, School of Nursing, Baltimore, MD USA

Analyzed questionnaires from 18 fathers and 22 mothers of children with Down's Syndrome with an age range from infancy to adulthood (mean age 6.59 yrs). Fathers (83%) depicted their adjustment in terms of steady, gradual recovery, while the majority of mothers (68%) reported a peaks-and-valleys, periodic crises pattern. Mothers also reported higher frequencies for chronic sorrow as well as for behaviors such as self-blame and expression of negative affect. The study suggests that mothers and fathers in the same family may experience distinct differences in adjustment and coping as parents of a handicapped child.
Br J Psychiatry 149: 161-71 (1986 Aug)

Family background of children with Down's syndrome and of children with a similar degree of mental retardation

Gath A, Gumley D
Hospital for Sick Children, Psychiatric Research Unit, Toronto, Canada

The families of Down's Syndrome children and another group with a similar degree of retardation were compared using data collected at interview. Differences in social class distribution were explained by the maternal age effect in the Down's group. Divorce was more common in the control group but the quality of marriage in those parents still together and the health of parents were similar. No close associations were found between behaviour disorders in the children and family factors, except that behaviour disorders were likely to be associated with similar disturbance in siblings next in age and to be more common in the less happy marriages.
American Journal of Mental Deficiency 90 (6): 610-617 (1986 May)

Family responses to developmentally delayed preschoolers: Etiology and the father's role

Goldberg, Susan; Marcovitch, Sharon; MacGregor, Duane; Lojkasek, Mirek
Hospital for Sick Children, Psychiatric Research Unit, Toronto, Canada

Parents of 59 developmentally delayed children (aged 2-4.5 yrs) with Down's syndrome, neurological problems, or unknown etiologies responded to questionnaires including the Coopersmith Self-Esteem Inventory; Rotter's Internal-External Locus of Control Scale; and measures of support, coping, and psychological distress. There were group differences in maternal reports of positive experience with the child, self-esteem, reported support, and relations with grandparents. With the exception of self-esteem, all comparisons favored the Down's syndrome group. The lower self-esteem of the parents of Down's syndrome children may reflect a feeling of responsibility for the genetic defect. Fathers reported fewer distress symptoms, higher self-esteem, a more internal locus of control, and less support than did mothers, possibly reflecting traditional role divisions in the family. Findings indicate a need to understand individual differences among families of delayed children and illustrate that the effects of a child's handicap on fathers differ from those upon mothers.