Effect of cardiac surgery in young children with congenital heart disease on parenting stress in central South Africa: Initial outcomes

Smith, Robyn; Potterton, Joanne; Ntsiea, Veronica; Brown, Stephen C.

doi:10.24170/14-3-2715

Cited by 3 publications

(5 citation statements)

References 39 publications

(129 reference statements)

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“…These results show higher stress levels than two previous studies in South Africa examining stress in caregivers in children with CP (Haniff et al 2005; Pugin 2007). They are, however, comparable to South African caregivers of infants who are HIV infected (Potterton, Stewart & Cooper 2007) and caregivers of children with congenital heart disease (Smith et al 2017). Sung and Park (2012) also found no reduction in stress levels after a 5-day-long family support programme for caregivers of children with disabilities.…”

Section: Discussionmentioning

confidence: 67%

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The effect of the Hambisela programme on stress levels and quality of life of primary caregivers of children with cerebral palsy: A pilot study

Aswegen

Myezwa

Potterton

et al. 2019

South African Journal of Physiotherapy

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Background Caregivers of children with cerebral palsy (CP) are at risk of having high stress levels and poor quality of life (QOL) which could have a detrimental effect on themselves and their children. Taking caregivers’ well-being into consideration is therefore important when providing rehabilitation to children with CP. Interventions to mediate primary caregiver stress and QOL using an educational tool have not been tested in this population in South Africa. Objectives The aim of this study was to determine the effect of a group-based educational intervention, Hambisela, on stress levels and QOL of primary caregivers of children with CP in Mamelodi, a township in Gauteng, South Africa. Method Eighteen primary caregivers of children with CP participated in a quasi-experimental pretest–post-test pilot study. Hambisela, a group-based educational intervention, was carried out once a week over 8 consecutive weeks. Caregiver stress and QOL were assessed before and after the intervention using the Parenting Stress Index-Short Form (PSI-SF) and the Paediatric Quality of Life-Family Impact Module (PedsQL TM -FIM). Sociodemographic information was assessed using a demographic questionnaire. The Gross Motor Function Classification System (GMFCS) was used to assess the gross motor level of severity of CP in the children. Results Data were collected for 18 participants at baseline and 16 participants at follow-up. At baseline, 14 (87.5%) participants had clinically significant stress which reduced to 11 (68.8%) at follow-up. There was no significant change in primary caregiver’s stress levels ( p = 0.72) and QOL ( p = 0.85) after the Hambisela programme. Higher levels of education were moderately associated with lower levels of primary caregiver stress ( r = −0.50; p = 0.03). Conclusion Most primary caregivers in this pilot study suffered from clinically significant stress levels. Hambisela, as an educational intervention, was not effective in reducing the stress or improving the QOL in these primary caregivers of children with CP. Future studies with a larger sample size are needed to investigate the high stress levels of primary caregivers of children with CP. Clinical implications Rehabilitation services for children with disabilities should include assessments to identify caregivers with high stress levels. Holistic management programmes should also include care for the carers.

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Section: Discussionmentioning

confidence: 67%

“…The PSI-SF has good test–retest reliability with Pearson correlations of 0.84 for the Total Stress Scores and 0.68–0.85 for subscale scores (Abidin 1995). The PSI-SF has not been validated in South Africa, but it has previously been used in a South African population and was found to be reliable (Potterton 2007; Smith et al 2017).…”

Section: Methodsmentioning

confidence: 99%

The effect of the Hambisela programme on stress levels and quality of life of primary caregivers of children with cerebral palsy: A pilot study

Aswegen

Myezwa

Potterton

et al. 2019

South African Journal of Physiotherapy

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“…Some studies have shown that psychosocial adjustment is possible in the long-term; in the first six months following the child's cardiac surgery progress, parental stress symptoms were found to decrease [11,29,31]. A similar reduction in parental stress was also found in studies with a longer follow-up period [31,32].…”

Section: Introductionmentioning

confidence: 62%

“…Meanwhile, there are findings on the course of the parental stress phase around the time of the child's cardiac surgery. In the period prior to the child's cardiac surgery, parental stress levels start to rise [29], followed by high levels of stress and anxiety during the whole peri-operative period [30]. Moreover, affected parents are reported to have an increased risk for mental health issues, particularly in the immediate post-surgery period [25,28].…”

Section: Introductionmentioning

confidence: 99%

“…However, one third of parents continued to experience high levels of stress in the first six months after their child's heart surgery [29], and approximately 40% of affected parents reported a need for psychosocial care [14]. Mothers have been particularly reported to be at high risk of developing long-term consequences like mental health problems after their child's heart surgery, and have been found to have higher levels of stress, depression and trauma than fathers [22,25,36,37].…”

Section: Introductionmentioning

confidence: 99%

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Long-Term Effects of Child Early Surgical Ventricular Septal Defect Repair on Maternal Stress

Gerlach,

Decker,

Plank

et al. 2023

Children

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The ventricular septal defect (VSD) represents the most common congenital heart defect (CHD). The diagnosis of and cardiac surgery for their child’s VSD are highly stressful experiences for parents; especially mothers, who are at risk of developing long-lasting stress-related symptoms. This study examined long-term alterations in maternal stress including self-reported psychological and biophysiological stress levels in a case-control design. We investigated 24 mothers of children with an isolated, surgically corrected VSD compared to non-affected controls. Maternal self-reports on psychopathology, everyday stress, parenting stress and hair cortisol concentrations (HCC) were measured during children’s primary school age (6–9 years, t1) and early adolescence (10–14 years, t2). In maternal self-reports, psychopathology and stress symptoms in the VSD-group and controls were comparable at t1, whereas at t2, mothers in the VSD-group even showed a decrease in psychopathology. Maternal HCC levels in the VSD-group were significantly lower (hypocortisolism) than HCC levels of controls at t1. This effect was no longer observed at t2 reflecting an approximation of HCC levels in the VSD-group to controls’ levels. This study highlights the potential for improved stress hormone balance and psychological well-being in mothers following their child’s surgical VSD repair. However, the need for parent-centered interventions is discussed, particularly during peri-operative phases and in early child developmental stages.

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Parent-child bonding and attachment during pregnancy and early childhood following congenital heart disease diagnosis

Tesson

Butow

Marshall

et al. 2021

Health Psychology Review

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Diagnosis and treatment of congenital heart disease (CHD) can present challenges to the developing parent-child relationship due to periods of infant hospitalisation and intensive medical care, parentinfant separations, child neurodevelopmental delay and feeding problems, and significant parent and child distress and trauma. Yet, the ways in which CHD may affect the parent-child relationship are not well-understood. We systematically reviewed the evidence on parental bonding, parent-child interaction, and child attachment following CHD diagnosis, according to a pre-registered protocol (CRD42019135687). Six electronic databases were searched for English-language studies comparing a cardiac sample (i.e., expectant parents or parents and their child aged 0-5 years with CHD) with a healthy comparison group on relational outcomes. Of 22 unique studies, most used parent-report measures (73%) and yielded mixed results for parental bonding and parent-child interaction quality.Observational results also varied, although most studies (4 of 6) found difficulties in parent-child interaction on one or more affective or behavioural domains (e.g., lower maternal sensitivity, lower infant responsiveness). Research on parental-fetal bonding, father-child relationships, and child attachment behaviour was lacking. Stronger evidence is needed to determine the nature, prevalence, and predictors of relational disruptions following CHD diagnosis, and to inform targeted screening, prevention, and early intervention programs for at-risk dyads.

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Effect of cardiac surgery in young children with congenital heart disease on parenting stress in central South Africa: Initial outcomes

Abstract: ABSTRACT

Cited by 3 publications

References 39 publications

The effect of the Hambisela programme on stress levels and quality of life of primary caregivers of children with cerebral palsy: A pilot study

The effect of the Hambisela programme on stress levels and quality of life of primary caregivers of children with cerebral palsy: A pilot study

Long-Term Effects of Child Early Surgical Ventricular Septal Defect Repair on Maternal Stress

Parent-child bonding and attachment during pregnancy and early childhood following congenital heart disease diagnosis

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