Stress and well-being among parents of children with rare diseases: a prospective intervention study

AIM: This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention. BACKGROUND: Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders. METHOD: We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability. RESULTS: We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network. CONCLUSION: Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.     

Gender differences in the use of coping strategies among Taiwanese parents whose children have cancer

This study explores parental gender-based similarities and differences in the use of coping strategies when their children suffer from cancer. The data from the 171 parent-couples who served as subjects for this study were selected from a larger data set of surveys from parents whose children were receiving treatment or follow-up care for cancer. The results show that no major differences were found between fathers and mothers in coping behaviors while caring for children with cancer. In addition to quantitative measure of coping behaviors, a qualitative orientation with more in-depth data is needed to explore how parents cope with children with cancer. More data are needed on additional variables that may influence coping such as the presence and severity of child's illness. Nurses need to be aware of the various coping behaviors that mothers and fathers use while caring for children with cancer. Assessment of coping strategies is a prerequisite to planning care for parents with cancer.     

Stress and coping in families of children with myelomeningocele.

This pilot study examined differences in and relationships between parent health-related stressors (child care needs and parental concerns), daily hassles, and coping strategies of 17 mothers and 17 fathers of preschool and school-age children with myelomeningocele (MMC). Help related to play was the most frequent need among mothers; fathers needed the most help with school activities. Among the greatest concerns of both parents were their child's future and sufficient income. Too many things to do was a frequently mentioned hassle by both parents. Having faith in God was the coping strategy mentioned most often by both parents.     

Stress among Mothers of Children with Intellectual Disabilities in Urban India: Role of Gender and Maternal Coping

Background The study assessed stress among mothers of young children with intellectual disabilities in urban India and examined the extent to which child functioning and maternal coping predict maternal stress. Through qualitative analyses, the study identified negative and positive dimensions of Indian mothers’ caregiving experiences. Materials and Methods Mothers completed Parenting Stress Index‐Short Form, and children’s teachers completed Vineland‐II teacher rating form. Maternal responses to a semi‐structured interview were rated to assess maternal coping and content analysed to derive qualitative themes. Results Three‐fourths of the sample obtained a clinically significant stress score, and maternal coping emerged as a robust predictor of stress for mothers of boys with intellectual disabilities. Qualitative analyses indicated positive and negative maternal experiences related to self, child, family and community. Conclusions The high level of stress has important clinical implications. Similarly, the significant role of maternal coping, moderating role of child gender and the multidimensional caregiving experiences have implications for future research and family interventions in India.     

Coping strategies of parents facing child diabetes mellitus

This study identified differences in strategies used by mothers and fathers (N = 60) in coping with their child's insulin-dependent diabetes mellitus. The Ways of Coping Questionnaire (WCQ) was administered during a home interview. Results showed that both parents used planful problem solving, exercised positive reappraisal, and sought social support frequently, with mothers using more planful problem-solving strategies than fathers. Within the family, analyses showed that fathers were more likely to use distancing, independent of the child's sex, whereas mothers were more likely to frequently use all the coping strategies when the child was a girl. The implications of the results for nursing are discussed.     

Mothers and Fathers of Children with Cerebral Palsy: Differences in Future Expectations

Parents’ expectations are known to be a central component in children’s development through multiple pathways; however, limited information exists regarding expectations of parents of children with developmental disabilities. The purpose of the current study was to examine future expectations of parents of children with cerebral palsy (CP), as well as the differences in expectations between mothers and fathers. Forty-nine mothers and fathers of children with CP (6–12 years) participated in this study. Parents completed a Parental Future Expectations Questionnaire for Children with Disabilities, and a Perception of Child’s Ability questionnaire, as well as the Pediatric Evaluation Disability Inventory (PEDI). The Gross Motor Function Measure-66 (GMFM-66) was completed by physical therapists. Parental differences in future expectations were analyzed and multiple-stepwise regressions established parental expectations’ predictors. Parents’ expectations correlated with their child’s characteristics. Parents of children with lower levels of functioning reported lower expectations. No differences were found between mothers’ and fathers’ future expectations; however, differences were found between expectations’ predictors. Predictors of mothers’ expectations were their perceptions of their child’s abilities as well as child’s performance. Fathers’ predictors were child’s level of functional impairment and their perceptions of their child’s abilities. The results indicate that parental expectations relate to their child’s functional ability and differ between parents in relation to the child’s level of impairment (fathers) or child’s actual performance (mothers). These differences should be acknowledged by clinicians when they provide specific support for children with chronic physical disabilities and their families.     

Family resiliency during childhood cancer: the father's perspective.

Most studies of childhood cancer have focused on mothers, but few studies have examined the views of fathers on the effects of their child's cancer diagnosis and treatment on the family. The purpose of this study was to explore the resources that help fathers adapt to life after their child's diagnosis using the resiliency model of family stress, adjustment, and adaptation as a framework. Eight fathers whose children had received treatment in a university pediatric oncology clinic in the prior 12 months were interviewed in depth. Data were coded thematically using NVivo. Results indicated that support from extended family, the church, and health care professionals was necessary for fathers to remain positive during their child's illness; spousal and parent-child relationships strengthened; and changes in family life varied based on the composition of the household. Further studies are warranted to better understand how fathers cope, so that pediatric oncology nurses and other health care professionals can provide holistic care that addresses the unique needs of all family members.     

Social competence of school-aged children with chronic illnesses.

This study examines social competence among 67 chronically ill children, aged 7 to 14 years, whose families participated in a grounded theory study of how families define and manage a child's chronic illness. Child Behavior Check List ratings (Achenbach & Edelbrock, 1983) by both fathers and mothers indicated a significantly greater risk for social competence difficulties among the chronically ill children as compared with the normative sample. Case vignettes, drawn from extensive interviews with family members, are used to show contrasting styles of family management and child coping and to suggest nursing interventions aimed at fostering social competence.     

Swedish parents of children with Down's syndrome

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.     

Mothers' and fathers' interactions with children with motor delays.

OBJECTIVE: In early intervention programs, parents are often asked to teach their child new skills. As fathers are increasingly involved in intervention, clinicians need more information on fathers' unique interactive style. This pilot study compared mothers' and fathers' parent-child interactions during a teaching episode to identify similarities and differences in order to better understand parents' strengths. METHODS: The Nursing Child Assessment Teaching Scale was used to observe 10 mothers and 10 fathers interacting with their 10- to 28-month-old children in their homes. The children were receiving early intervention for a motor delay. The Caregiver Scores (parent's contribution to the interaction) of mothers and others were compared using paired t tests. RESULTS: Mothers had more optimal interactions as indicated by significantly higher Caregiver scores than fathers, t (9) = 3.83, p = .004. The subscales with statistically significant differences were Caregiver Contingency and Cognitive Growth Fostering. Children's scores when they interacted with their mothers or fathers did not differ. CONCLUSION: When observing fathers teaching their child new skills, therapists should remember that fathers of children with motor delays (and typically developing children) may use a more task-oriented communication style with less consideration of the child's actions than do mothers.     

Effects of a father-based in-home intervention on perceived stress and family dynamics in parents of children with autism

Parents of children with autism report high rates of stress. Parental differences in stress are inconsistent, with most research indicating that mothers report higher levels of stress than fathers. We explored parental differences before and after an in-home training program. Fathers were taught an intervention designed to improve their child's social reciprocity and communication; they then trained mothers. Stress was assessed with the Parenting Stress Index-Short Form, and family dynamics was assessed with the Family Adaptability and Cohesion Evaluation Scales II. Both mothers and fathers reported high preintervention levels of stress. After intervention, fathers' stress was reduced, but not significantly, possibly because of the variability in fathers' scores; mothers' stress scores were significantly reduced. Parenting styles were significantly different before and after intervention. Interdisciplinary teams, including occupational therapists, nurses, and special educators, can work.together to have a positive impact on the lives of families of children with autism.     

Factors influencing health promoting activities of mothers caring for ventilator-assisted children

The extensive care a ventilator-assisted child (VAC) requires when cared for in the home can impact the mother's ability to participate in health promotion activities. The purpose of this study was to examine health promotion activities and the relationships among functional status of the child, impact of the illness on the family, coping, social support, and health promotion activities of mothers who care for ventilator-assisted children at home. Thirty-eight primary female caregivers, mostly mothers, participated in the study and completed the Personal Lifestyle Questionnaire (PLQ), measures of child's functional status, impact of the illness on the family, coping, social support, and demographic data. Findings revealed that the mothers scored low on the nutrition, exercise, relaxation, and general health promotion subscales of the PLQ. Functional status of the child and coping were positively correlated with participation in health promotion activities, whereas impact of the child's illness on the family was inversely related to health promotion of the mothers. Regression analysis revealed that functional status of the child and coping were significant predictors of mothers' participation in health promotion activities. The high demands associated with caring for a VAC with poor functioning can be a significant risk factor for not participating in health promotion activities. Nurses need to help mothers with coping and finding resources to help mediate the stress related to caring for their child, thereby helping the mothers to maintain their own health.     

Quality of life,coping strategies,and family routines in children with headache

OBJECTIVE: To identify the relationship between headache severity, child coping, and quality of life (QoL) in the context of everyday family life. BACKGROUND: In the pediatric headache research only 3 studies have examined children's coping strategies and only 4 studies considered QoL. METHODS: A sample of 48 Italian families with children seeking treatment for primary headaches was interviewed using an adaptation of the Ecocultural Family Interview (EFI). The EFI is a parent interview that explores the daily routines of family life in which the child and parent participate and the main concerns regarding how that routine is organized. RESULTS: As expected the Lisrel analyses consistently showed that QoL is affected by a child's coping abilities in a causal direction. Headache frequency and duration have a significant impact on a child's QoL. The family daily routine influences significantly both the child's coping ability and QoL. Surprisingly enough, children's coping strategies are not related to headache severity. CONCLUSIONS: More research is needed on the causal factors influencing child's ability to cope with pain, and in particular more attention should be devoted to the contextual and family factors related to pediatric headache.     

Patterns of family adaptation to childhood asthma

This study examined patterns in adaptation among parents with a child who had moderate to severe persistent asthma. Specifically, we were interested in examining the differences in adaptation between mothers and fathers in which it was hypothesized that gender effects would be obtained in patterns of coping. Eighty-four parents participated in the study, representing 37 intact families in which both parents were present and 13 single-parent families. Within intact families, mothers exhibited greater efforts than fathers in coping patterns including strategies to acquire social support outside the family, enhance self-worth, and decrease psychological tensions. When compared to mothers in single-parent families, mothers within intact families had a greater tendency to use coping patterns related to family integration and cooperation. Such findings demonstrate a need for additional support for mothers in their role in caring for the chronically ill child. The implications of these findings for clinical practice are discussed.     

Factors Contributing to Stress in Parents of Individuals with Autistic Spectrum Disorders

Background The study explores the experiences of parents of individuals with autistic spectrum disorders (ASDs), and examines the influences of parent gender and child age on perceived stress, stress and coping, child‐rearing involvement, support and information/education accessed. Methods and Materials Questionnaires assessed general perceived stress, involvement, stress and coping related to caregiving, social support, and amount of information/education accessed in 23 mothers and 19 fathers of 3‐ to 18‐year‐old individuals with ASDs. Results When compared with fathers, mothers were significantly more stressed, more involved, and reported higher levels of stress and coping related to caregiving. Differences were found according to child age, regarding helpfulness of support and access to information/education. Parent gender and child age moderated correlations between some variables. Content analyses identified factors contributing to parental stress and its alleviation. Conclusions The positive relationships between the amount of information accessed and the quality of support received by parents, and between parental stress and involvement vary according to the life stage of the child. Mothers experienced a greater caregiving burden when compared with fathers.     

When the child's illness is life threatening: impact on the parents

An investigation of the impact on parents of children with life threatening (LT) and parents of children with non-life threatening (NLT) chronic illnesses measured satisfaction with social support received, perception of the impact of the child's illness, and coping behaviors. Eighty fathers and 80 mothers of children completed four questionnaires: (a) The Sociodemographic and Illness-related Questionnaire (Krulik, Hirschfield, & Sharon, 1984); (b) Social Support Questionnaire (London, 1988); (c) Perception of the Impact of the Child's Chronic Illness on the Parent Questionnaire (Katz, 1994); and (d) Coping Health Inventory for Parents (CHIP) (McCubbin, McCubbin, Patterson, et al., 1983). The results of parents together and fathers and mothers separately, and parents of LT and parents of NLT chronic illnesses were compared using ANOVA, MANOVA, and Doubly multivariate analysis. Parents of children with LT and NLT illnesses reported significant differences in social support, perception of the impact of the illness, and coping behaviors. Although fathers and mothers reported significant differences in the use of the medical team as a coping behavior, no significant differences were found between fathers and mothers related to social support and perception of the impact of the illness.     

Time use of mothers with school-age children: a continuing impact of a child's disability.

OBJECTIVE: The purpose of this study was to compare the time use of mothers of children with disabilities with the time use of mothers of children without disabilities. METHOD: Sixty mothers with children 3 to 14 years of age (30 mothers with children with disabilities and 30 mothers with children without disabilities) completed time diaries over seven 24-hour days. RESULTS: Significant differences were found between the two groups when comparing mean hours spent per week by mothers in occupations involving child-care activities and recreational activities. Mothers of children with disabilities spent significantly more time in child-care activities and significantly less time in recreational activities. In addition, mothers of children with disabilities reported fewer typical days and rated the quality of days as poorer. As children got older, the gap between the time mothers devoted to child care increased between the two groups. CONCLUSION: The type of occupations a mother participates in varies significantly dependent upon whether a child in the family has a disability and the age of the child. Professionals need to work collaboratively with families to assist parents to meet the family's daily needs particularly in light of the time demands of the mother.     

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

Mothers and fathers of children with Down syndrome were surveyed on overall patterns of adjustment and on frequency of chronic sorrow and coping behaviors. Fathers overwhelmingly (83%) depicted their adjustment in terms of steady, gradual recovery, while the majority of mothers (68%) reported a peaks-and-valleys, periodic crises pattern; chi 2 = 8.64, p less than .01. Mothers also reported higher frequencies for chronic sorrow as well as for behaviors such as self-blame and expression of negative affect. Thus, mothers and fathers in the same family may experience distinct differences in adjustment and coping as parents of a handicapped child.     

Children's coping with surgery: a process-oriented perspective

Assessing the manner in which children cope with surgery, by using a process-oriented perspective, requires attention to each child's viewpoint of the surgical event. Assessing coping as a process places great emphasis on the way a child appraises the event, which in turn determines the coping modes adopted. Illustrations are given from research with pediatric surgical patients that show how a coping interview based on a process-approach can be conducted clinically with children to gather data about their views of surgery and the ways they cope with it. Knowledge of how to assess coping that changes with appraisals provides nurses with the insight to clarify children's understanding of the event and to apply interventions to bolster children's coping and reduce the stress of both children and parents. Interventions for children and parents are suggested.