Strategies of Mothers in Life Management Along with a Child with Congenital Heart Disease: Valuable Experience of Iranian Mothers

Caregiving strategies in families of children with congenital heart disease: A qualitative study

“…They acted based on their own experiences and followed their physician's instructions on suitable nutrition and diet limitations based on the child's cardiac disease in order for the child to gain weight, which is consistent with the results of similar studies. [ 13 15 ] As children with CHD cannot eat well because of fatigue, tachypnea, and dyspnea, most often, they do not gain weight and they have anorexia. Therefore, parents are recommended to feed their child using formula and high-calorie foods.…”

“…[ 15 ] In addition, in previous studies, teaching children self-care such as how to act during dyspnea, lack of physical vigor, and temperature changes have been considered as families' caregiving strategies. [ 12 13 ] It is necessary that families consult cardiac pediatricians about the level of limitations in children's activities and sports in order to manage children's playing. Furthermore, in the present study, families followed their special ways of meeting the affective needs of children by giving them attention and affection.…”

“…In similar studies, mothers/parents needed support to gain their wellbeing and strength,[ 10 ] and spirituality had an important role in providing calmness and emotional support in different cultures. [ 12 13 ] They received social and emotional support from their spouse, family, physician/nurse, peers, workplace, and the community. [ 23 24 ] Some studies found that parents did not receive enough support and they were dissatisfied, which was inconsistent with the present study findings.…”

“…[ 8 9 12 ] The results of qualitative studies have revealed that strategies of mothers/families for managing the care of children with CHD/chronic illnesses include accepting the situation, enduring difficulties, seeking social support, personal empowerment, adjusting and changing routines, and balancing care and life. [ 12 13 ]…”

“…Some differences in cultural norms and values shape the caregiving experiences,[ 14 ] and families' caregiving practices are influenced by socioeconomic contexts, available resources, and support. [ 13 15 ] It is important to understand how families respond to the illness and manage their daily life despite caregiving challenges. [ 3 ] The families of children with CHD experience challenges in the child's caregiving process, which need to be managed; however, and to our knowledge, very few qualitative researches have been conducted on these families' caregiving strategies.…”