Betting on the development of integrated, family-centered and intersectoral health policies is crucial to improve the quality of life of mothers and fathers of very preterm infants (ie, children born at less than 32 weeks of gestation). Some of these policies could include redesigning parental leave, and designing interventions focused on reducing the negative effects of the need for constant vigilance and hygiene that these infants often require.
The findings are based on a study by the Epidemiology Research Unit (EPIUnit) of the Instituto de Saúde Pública da Universidade do Porto (ISPUP), which evaluated the quality of life of mothers and fathers of very preterm infants four months after childbirth.
The literature shows that the quality of life of parents of very preterm infants may be compromised due to sleep disturbances, fatigue, stress and psychopathological symptoms. It is important to understand how the fathers and mothers of these children evaluate the factors that influence their quality of life to delineate more family-centered policies and health services in the context of prematurity.
In this study, the quality of life of parents of very preterm infants was evaluated four months after childbirth. It is a time when most babies have already been discharged from the Neonatal Intensive Care Unit (NICU) and are home. In addition, four months corresponds, in Portuguese law, to the normal period of parental leave, and therefore many mothers are preparing to return to work at that time. Therefore, we considered that this was an important period for the evaluation of the quality of life of these parents”, explains Mariana Amorim, the first author of the study, coordinated by the ISPUP researcher Susana Silva.
The authors used a questionnaire from the World Health Organization (WHO) to assess the quality of life of parents, which includes parameters such as physical health, psychological status, social relations and the relationship with the environment. This quantitative evaluation included 67 mothers and 64 fathers. Semi structured qualitative interviews were also carried out with 26 couples. Participants were systematically recruited during the hospitalization of infants in all seven NICUs in the North of Portugal between July 2013 and June 2014.
It was found that mothers and fathers evaluate their quality of life in a similar way, which is negatively affected by parental stress, anxiety and depression. The quality of life of mothers seems to be negatively influenced by a low socioeconomic position. In fathers, factors such as the length of time the child is hospitalized and the existence of health problems in the baby also have a negative impact on their quality of life.
The study also revealed that there are no significant differences between the perception of the quality of life of mothers and fathers of very preterm children, and the general population. According to Mariana Amorim, this can be explained, among other factors, by the fact that parents activate internal accommodation mechanisms. “Faced with a very stressful life event, such as the birth of a very preterm child, parents activate internal mechanisms to cope with the situation, such as being optimistic about life, reorganizing their goals, comparing their children with children who find themselves in worse situations. In short, they reformulate their expectations. These mechanisms make the factors that negatively and positively influence quality of life be balanced”, she says.
Research has also shown that constant vigilance in relation to the child and the need for permanent hygiene negatively influence the quality of life of the parents. On the other hand, access to health care was referred to as an aspect that positively influences parental quality of life, since parents are aware that the hospitalization of a very preterm child is quite expensive.
Taking into account the results of the study, the authors stress the importance of developing integrated and family-centered inter sectoral policies within and outside NICUs to improve the quality of life of these parents.
One suggestion could be to “create a specific parental leave for very pre-term children. The period of hospitalization of the baby should not be included in the time of the parental leave”, says Mariana Amorim. In addition, it would be important to “create focused interventions to address the negative effects of the need for constant vigilance and hygiene have on the quality of parental life”.
Despite all medical and technological advances, children who are born very preterm have a higher risk of death and delays in neurodevelopment, so preterm birth is an important public health problem.
The study, published in the journal “Health and Quality of Life Outcomes”, is entitled “Quality of life of parents of very preterm infants 4 months after birth: a mixed methods study”. The researchers Elisabete Alves, Michelle Kelly- Irving and Ana Isabel Ribeiro also participated in the study.
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