Congenital abnormalities: experiences of parents atoshakati intermediate hospital, oshana region, Namibia

Abstract

Background: Congenital abnormality (CA) is one among eminent problems in the society that affects the livelihood of the individual, communities and the health sector. It creates uncertainty among family members as they strive to identify ways and means to assist one another in the upbringing of these children born with an anomaly. The ultimate purpose of this study was to describe and explore the experiences of parents of children with congenital abnormalities and to identify the source of support such as parents employs when dealing with the child born with congenital abnormalities. This study was conducted at Intermediate Hospital Oshakati (IHO) in Namibia's Oshana region. Methods: A qualitative, explorative and a contextual study design using a phenomenological approach was utilized throughout this study. In-depth interviews were conducted with twelve "purposefully" selected participants from the population of parents of children born with congenital abnormalities whose children were either admitted in hospital or brought for follow-up. Data analysis was done using a content analytical method. Results: Data were derived from 12 participants interviewed, comprised of parents of children with reversible and irreversible conditions, long hospitalization, more frequent follow ups and those waiting for surgery. The results were categorized in seven categories, including: 1) A child with congenital abnormalities: the impact of disability; 2) Family relationships; 3) Parenting expectations and practices; 4) Altering one's family daily life-treading a new path; 5) Social support; 6) Formal services; 7) Societal and community acceptance. Conclusion: The expectations parents had for a normal child becomes a nightmare when the child they were expecting is born with the disability. Living with such a child can be stressful for parents and other family members. Therefore, exploring and describing the lived experiences of parents of children born with congenital abnormalities is an important in the process of finding ways to assist or support parents to provide proper care for their children.

Impact of Cerebral Palsy on Parents and Families

“…Literature has shown that, the presence of a child with CP may have positive and negative influences on the relationships between families [2]. On the positive side, it can broaden horizons, increase family members' awareness of inner strength, enhance family bond and encourage networks to existing community groups [1], on the other hand, the physical, emotional demands and logistical complexities associated with raising a child with CP may have a negative effect on parents and families. Living with such a child can be a source of distress to families who might face several challenges to come to terms with the functional limitation of a child with CP.…”

“…Given the indication that some children with CP often exhibit higher rates of behavioral problems than typically developing children, the relation of behavioral problems to parental wellbeing indicates that, interventions which address the child behavioral problems should be well-thought-out [1,16]. The impact of a conflicting marriage on parental wellbeing should be well understood by trained professionals such as teacher and health care providers, who interacts with these families from time to time.…”

“…The impact of a conflicting marriage on parental wellbeing should be well understood by trained professionals such as teacher and health care providers, who interacts with these families from time to time. Some literatures have revealed the act of blame especially among fathers of children with CP, where they are blaming mothers for being responsible for the child 's developmental disability [1]. This may however, result in high stress level and depression to the mother.…”

“…The blame game can be a starting point of conflicting relationship which may result in divorce of such parents. Therefore, it is of utmost importance for professionals in the health sector to include parents, especially mothers when designing intervention for a child with CP as parents seems to be more affected than the people they are caring for [1,17].…”

“…The dream of every parent becomes a nightmare if the baby they were expecting is born with cerebral palsy (CP). It is a complex neurodevelopmental disorder and is the leading cause of physical disability in childhood [1]. The condition affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance.…”