The Plight of Parents/Caregivers of Children with Heart Disease in the Rural Areas of Namibia: A Problem of Coping

Abstract

Providing care for a child with heart disease is a daunting task for any parent/caregiver, particularly for those living in poor conditions in rural Namibia. A qualitative, exploratory, phenomenological and contextual study was conducted to describe such parents’/caregivers’ experiences of providing care for a child with a heart disease. The study also examined the children's experiences of living with the burden of disease at home. The findings revealed experiences of emotional turmoil, disruptive social functioning and social relations, lack of support from the family, lack of organised forms of support from societal organisations, as well as experiences of low vitality among the children. These experiences together signify the overall poor coping by the parents/caregivers and the children. This paper presents the findings of a situational analysis of the experiences of caring for a child with heart disease and of living with heart disease.

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

“…(25) In addition to this, low levels of parent education contribute to financial insecurity, and therefore parenting stress. (25,26) Parents living in poverty are also less likely to have the necessary social support to assist them in their parenting role, (30,33) and as a result are also more likely to suffer from stress, anxiety and depression. (30)(31)(32) A lack of financial means impedes access to healthcare due to the costs and a lack of access to transport.…”

“…(30) More than half of the children in South Africa grow up in single-parent, mainly female-headed households, where the absent parent is largely uninvolved in the day-to-day parenting. (25,26,30) These families are at greater risk of poverty amplifying poor adaptation and coping. (25) In addition to this, low levels of parent education contribute to financial insecurity, and therefore parenting stress.…”

“…(25,26,30) These families are at greater risk of poverty amplifying poor adaptation and coping. (25) In addition to this, low levels of parent education contribute to financial insecurity, and therefore parenting stress. (25,26) Parents living in poverty are also less likely to have the necessary social support to assist them in their parenting role, (30,33) and as a result are also more likely to suffer from stress, anxiety and depression.…”

“…(30)(31)(32) A lack of financial means impedes access to healthcare due to the costs and a lack of access to transport. (25) Poor adaptation skills, and high levels of parenting stress, may be rooted in the lack of financial means to facilitate coping with the demands of care. (25) Accessing and complying with cardiac care is challenged in employed parents who may stand to lose income due to the frequent and sometimes extended periods of time needed off work in order to meet their child's care needs.…”

“…(25) Poor adaptation skills, and high levels of parenting stress, may be rooted in the lack of financial means to facilitate coping with the demands of care. (25) Accessing and complying with cardiac care is challenged in employed parents who may stand to lose income due to the frequent and sometimes extended periods of time needed off work in order to meet their child's care needs. (25,41,(46)(47)(48) A family's ability to come to terms with their child's cardiac diagnosis, and to then make the necessary lifestyle adjustments it demands, plays an important role in the outcome of the child with CHD, (1,7,15,38,39) currently driving interest into the impact of a child's CHD on parents' psychological health and parenting experiences.…”