Paediatric chronic kidney disease requires complex care, both in hospital and at home. It drastically changes the everyday life of the entire family. Everyday routines need to be changed, the home adapted, new routines for a complex diet created, school and social relations adjusted, and the child’s care managed.
“The demands placed on parents are excessive due to the complexity of the care. The home-based interventions that parents are expected to manage are technically demanding”, says Andrea Bruno de Sousa, who recently completed her doctorate in the Phoenix Erasmus Mundus joint doctoral programme in Dynamics of Health and Welfare.
She has studied parental experiences of managing the care of a child with chronic kidney disease. What are their lived experiences, how do they view and practice their parenthood and what circumstances affect their ability to handle the child's care? Andrea Bruno de Sousa has followed 21 families in Portugal to understand their daily routines. The study is based on interviews and observations.
Financial and social conditions
Parents’ abilities to handle their child’s chronic kidney condition are influenced by their everyday circumstances, the study shows. Factors such as social and economic status, how involved relatives can be, what resources are available at the child’s school, and the geographical location of the hospital and the home, have an impact on parents’ abilities.
“Financial and social status is critical to a family’s opportunities. Families with a stable financial condition and larger social network, including close friends and grandparents, can create a network of care to help them with household chores and childcare”, says Andrea Bruno de Sousa.
A strained financial situation or a limited social network can pose major challenges for the family. Healthcare services could help strengthen families’ abilities to care for an ill child, according to Andrea Bruno de Sousa.
“This can be done by creating a programme with home care visits, home care training, support for the families to adapt the home as well as a direct phone line to assist the families.”
Creating normality
Caring for a child with kidney disease is demanding, but it gives life a meaning, according to the parents taking part in the study. The goal is to create a sense of being a ‘normal’ family and having a ‘normal’ everyday life.
This could be called ‘readiness parenting’.
“The parents are constantly vigilant but take risks to give their child a normal upbringing, The parents must constantly assess risks, support the child’s autonomy but be ready to intervene, and must also relate to social norms and negotiate parental responsibility.”
Women shoulder the greatest responsibility in this, the study shows.
A challenge to study families in crisis
Studying parents’ experiences of caring for an ill child is challenging. However, these challenges can offer opportunities to discovering the complex realities that families face, says Andrea Bruno de Sousa.
“It is important understanding how care and parenthood work when living in a sort of ‘chronic crisis’ with ups and downs and uncertainties.”
