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.     

Families of children with Down syndrome: responding to "a change in plans" with resilience

The purpose of the present investigation, which was guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, was twofold: (a) to describe maternal perceptions of parental and family adaptation in families raising a child with Down syndrome, and (b) to examine linkages between family demands, family resources, family problem solving and coping, and family adaptation in families of children with Down syndrome. Seventy-six mothers completed mailed questionnaires. Seventy percent of the mothers rated their family's overall functioning as either a 4 or a 5 on a 5-point scale (1 = poor; 5 = excellent). In their written comments, most mothers reported that their family was doing well or very well. Three family variables (i.e., family demands, family resources, and family problem-solving communication) were significantly associated with family adaptation. These results provide support for the belief that many families of children with Down syndrome respond to "a change of plans" with resilience. That is, they are able to endure, survive, and even thrive in the face of ongoing challenges associated with raising a child with Down syndrome.     

Effect of Social Support on Parenting Stress of Korean Mothers of Children with Cerebral Palsy

[Purpose] This study investigated the effect of perceived social support on the parenting stress of mothers who have children with cerebral palsy (CP). [Methods] This study was conducted using surveys, literature review, and interviews. Survey data were collected from 181 mothers of children (under 18 years of age) with CP. [Results] Level of disability, mother''s health status and social support were significant predictors of the parenting stress of mothers. [Conclusion] We have to comprehend and share the psychological and physical affliction of mothers having much difficulty nurturing children with CP. Also, the government should take social responsibility for the upbringing of their children, developing back-up programs for mothers and making them comprehensively available to support the psychological and physical health of mothers of children with CP.Key words: Cerebral palsy, Parenting stress, Social support     

Fatigue in the mothers of children with cerebral palsy

Purpose: To evaluate fatigue in the mothers of children with cerebral palsy (CP), and to determine its associations with clinical parameters of CP, depression and quality of life (QoL). Method: Ninety children (50 girls and 40 boys) with spastic CP and their mothers were included. Control group comprised mothers of healthy children. Gross motor function classification system (GMFCS) was used for determining functional status. Spasticity was evaluated by using modified Ashworth scale. Fatigue symptom inventory (FSI) was used for assessing maternal fatigue, Nottingham health profile (NHP) for maternal QoL, and Beck Depression Scale (BDS) for maternal depression. Results: Mothers of children with CP scored significantly higher in all FSI subgroups (intensity of fatigue, duration of fatigue and interference with QoL), all NHP subgroups and BDS (p?p?< 0.01). No association was found between FSI and clinical parameters of children with CP including age, gender, type of CP, tonus and functional impairment (p?>?0.05). Conclusions: Our findings indicate that fatigue levels of mothers with CP children are higher than those with healthy children and associated with depression and deterioration in QoL in terms of physical, social and emotional functioning. This should be considered while designing a family centred rehabilitation programme for children with CP.

• Implications for Rehabilitation

• Caring for a child with cerebral palsy has psychological, social and financial impacts on familiesand is associated with increased levels of fatigue among mothers.

• The capacity of current programs and services needs to be strengthened to accommodate theneeds of children with CP and their mothers in order to reduce fatigue of mothers.

• New programs need to be developed to provide psychosocial support for the mothers andto reduce their fatigue as they continue to care for their children.

• Provision of assistive technology devices (particularly suitable wheelchairs) will be useful inreduction of fatigue levels of mothers.

     

Stress and coping in high-risk mothers: difficult life circumstances,psychiatric-mental health symptoms,education, and experiences in their families of origin

A pilot study was conducted to test methods and measures used to assess factors related to stress and coping in high-risk mothers and their effect on parenting. Twenty mothers with 12-month-old toddlers were recruited from a WIC population; they came into an observational laboratory where they were interviewed about stressors in their lives and their symptoms of stress and were videotaped interacting with their children. Maternal difficult life circumstances, psychiatric-mental health symptoms, education, maternal experiences in their families of origin, and parenting stress explained 74% of the variance in maternal sensitive-responsiveness with their toddlers in the laboratory setting. The findings support the methods of the study. Clinical implications and implications for future research to assist in the development of interventions for this population are discussed. Increased attention to screening for maternal psychiatric-mental health symptoms and for negative experiences in mothers' families of origin may provide important opportunities for intervention with these mothers.     

Adverse Childhood Experiences in Mothers With Chronic Pain and Intergenerational Impact on Children

Adverse childhood experiences (ACEs; eg, parental divorce, physical or sexual abuse) are more prevalent in individuals with chronic pain compared with the general population. Both increased maternal ACEs and chronic pain have been associated with poor physical and emotional functioning in offspring. However, the mechanisms driving these associations are poorly understood. Thus, this cross-sectional study evaluated the relation between maternal ACEs, mothers’ current functioning, and children's physical and emotional functioning in a sample of mothers with chronic pain and their 8- to 12-year-old children. Results indicated a higher prevalence of ≥1 ACE in this sample of mothers with chronic pain (84%) compared with normative data from a community sample of women. Higher maternal ACE scores corresponded with lower physical and social functioning, greater anxiety and depressive symptoms, greater fatigue and sleep disturbances, and greater pain intensity and pain interference in mothers. Higher maternal ACE scores significantly correlated with higher child self-reported depressive symptoms, but not somatic symptoms or functional impairment. A path model indicated that maternal depressive symptoms accounted for the relation between higher maternal ACE scores and children's depressive symptoms. Intervening on maternal depression among mothers with chronic pain may reduce the impact of intergenerational ACE transmission.Perspective: This article presents evidence regarding the intergenerational impact of ACEs in a large sample of mothers with chronic pain and their school-aged children. Maternal depressive symptoms accounted for the relation between maternal ACEs and children's depressive symptoms providing evidence regarding targets for preventive interventions.     

Coping, satisfaction, and the life cycle in families with mentally retarded persons.

The study focused on the variables influencing the functioning of 62 families with MR (mentally retarded) persons, living at home, in various stages of the life cycle. Results demonstrated the importance of some father characteristics to maternal coping skills in two-parent households. Although mean maternal coping scores were not statistically different between two-parent and single-parent households, single mothers' coping skills showed strong negative associations with both the number of children in the household and the age of the mother. This was not true of mothers in two-parent households. Single-parent mothers also appeared to be considerably more dissatisfied with family functioning than mothers in two-parent households. The supportive role of older fathers in mothers' coping in two-parent households also was apparent. Clinical implications of the study point to the need for greater support for mothers of young children with MR, mothers who are sole caregivers, and parents with many children. Differential support to mothers and fathers of an MR person may be required over the life cycle.     

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.     

Maternal experiences of caring for an infant with neurological impairment after neonatal encephalopathy in Uganda: a qualitative study

Abstract

Purpose: The study investigated maternal experiences of caring for a child affected by neurological impairment after neonatal encephalopathy (NE) (“birth asphyxia”) in Uganda. Methods: Between September 2011 and October 2012 small group and one-on-one in-depths interviews were conducted with mothers recruited to the ABAaNA study examining outcomes from NE in Mulago hospital, Kampala. Data were analysed thematically with the aid of Nvivo 8 software. Findings: Mothers reported caring for an infant with impairment was often complicated by substantial social, emotional and financial difficulties and stigma. High levels of emotional distress, feelings of social isolation and fearfulness about the future were described. Maternal health-seeking ability was exacerbated by high transport costs, lack of paternal support and poor availability of rehabilitation and counselling services. Meeting and sharing experiences with similarly affected mothers was associated with more positive maternal caring experiences. Conclusion: Mothering a child with neurological impairment after NE is emotionally, physically and financially challenging but this may be partly mitigated by good social support and opportunities to share caring experiences with similarly affected mothers. A facilitated, participatory, community-based approach to rehabilitation training may have important impacts on maximising participation and improving the quality of life of affected mothers and infants.

• Implications for Rehabilitation

• Caring for an infant with neurological impairment after NE in Uganda has substantial emotional, social and financial impacts on families and is associated with high levels of emotional stress, feelings of isolation and stigma amongst mothers.

• Improved social support and the opportunity to share experiences with other similarly affected mothers are associated with a more positive maternal caring experience. High transport costs, lack of paternal support and poor availability of counselling and support services were barriers to maternal healthcare seeking.

• Studies examining the feasibility, acceptability and impact of early intervention programmes are warranted to maximise participation and improve the quality of life for affected mothers and their infants.

     

‘Catch up’ in children born prematurely: Maternal expectations

The term catch-up forms part of discourses that surround discussions about the development of children born prematurely. However, it is a critically unchallenged term. Doctoral research explored maternal expectations that have arisen from the adoption of the term catch-up when used in relation to the development of children born prematurely. Messages about ‘catch-up’ were captured from two discussion boards and two email groups that support families with children born prematurely and from 17 mothers living in the South West of England. Two major themes were identified as underpinning the discussions. The first theme was that of paradoxical hope where the hope offered by catch-up underpinned mothers' discussions around catch-up, irrespective of whether they regarded hope as aspirational or as false hope. The second theme was drawn from mothers who challenged the discourse of catch-up demonstrating a different way of thinking about their children's development.