Short summary

Due to increased survival rates of infants with anomalies in the gastrointestinal tract, an increasing number of families are caring for infants with complex care needs. Studies have identified posttraumatic stress in parents to children with congenital gastrointestinal malformations and impaired quality of life. The projekt aim to identify riskfactors and needs of support from the parents and the home health nurses perspectives, and aim to increase cross sectoral collaboration.

Rationale

Background

Rare congenital anomalies and diseases of the gastrointestinal tract include the esophagus, the abdominal wall, bowel, rectum and diaphragm, which almost universally are associated with serious morbidity and for some infants mortality (1). Medical treatment, anesthesia, surgery, and care has developed over the last decades resulting in an increased survival (1). An increasing number of families are therefore caring for infants suffering from these congenital anomalies and diseases and they face many daily challenges. Infants that have had gastrointestinal surgery are at increased risk of morbidity, and have complex care needs after hospital discharge such as; stoma care, tube feeding, wound care, parenteral nutrition and continued observation for risk factors(2). When discharging infants with complex care needs, parents are trained to manage these tasks at home. During the last years, there have been increased focus on the management of infants and children with complex care needs in the community (3). To ensure success in transferring complex medical infants to home, increased collaboration between home health nurses and hospital specialists is essential in the first period after hospital discharge (4). However, the majority of the European countries do not have policies to support the coordination of care between sectors. Further, home health care for complex medical infants as a model of care does not meet the current needs of the families (5). Furthermore, a study has shown that parents of children with congenital malformations are in need of close contact to the hospital after discharge (2). Finally, the experiences and needs from the home health care nurses, managing infants in the home after neonatal gastric surgery, are yet to be studied. A review recommends tailored follow-up post-discharge for this group of infants, but not how follow-up should be carried out (2). Experiences when discharging preterm infants for tube feeding in the home have been widely studied (6-10) and the cross-sectoral collaboration after discharge for this group of infants and their parents is well-organized in many countries (7, 11). When support does not meet the needs of the parents, it can be a great burden if the responsibility, feels higher than the parents are capable of. Studies have identified posttraumatic stress in parents to children with congenital gastrointestinal malformations with mothers more frequently affected than fathers (12,13). Parents of children with esophageal atresia report impaired quality of life compared to background populations and again with mothers more affected than fathers (14). This indicates that there is a need for a long-term support to parents of infants receiving gastric surgery as neonates as parental mental challenges may have long-term consequences such as , less sensitive parent-infant interactions and consecutive child attachment- and behavior problems(15-17). A meta-analysis have shown an association between self-compassion and well-being(18), but it is not known if self-compassion protects mental health and well-being in parents with sick infants.

The mentioned studies on parental outcome when having an infant requiring gastric surgery as a neonate in regards to mental health and Quality of Life have not been conducted during their first admission. On this background, the psychological status of the parents during the infants' first admission is unknown, as well as the knowledge on the specific needs in the cross-sectoral collaboration in the patient pathway between the hospital and home health care nurses concerning these infants and parents.

Aim>/p> >p>To investigate experiences and needs from parents and health care professionals at hospital and at home when looking at the patient pathway after infant neonatal gastric surgery. To answer the overall study aim three sub-studies will be conducted.

Aim Sub-study one: To conduct an integrative review on the experiences of parents of newborn infants requiring gastrointestinal surgery and their experience of the patient pathway.

Aim Sub-study two:

Identifying risk-factors associated with Post Traumatic Stress Disorder, confidence, well-being and selfcompassion in parents of infants receiving neonatal gastric surgery.

Aim Sub-study three:

To identify needs of support and experiences in the patient pathway and the cross-sectional collaboration from the perspectives of hospital clinicians, parents and home health nurses.

Description of the cohort

Odense University Hospital (OUH) is one of two Danish hospitals with the highest level of medical care for patients with neonatal and pediatric surgery as defined by the Danish Health Authorities. Parents of infants with abdominal gastric malformations and diseases requiring surgery as neonates will be included in substudy two and three. Further, clinicians involved in the patient pathway will be included in sub-study three. Parents will be recruited for the study during infant admission. The parents will be approached when survival of the infant is expected and will be informed about the study from a project nurse or the primary investigator (PhD student). Inclusion criteria for participation is being a parent of an infant requiring neonatal gastric surgery due to necrotizing enterocolitis, spontaneous intestinal perforation, meconium ileus, abdominal wall defect, esophagus atresia, atresia in the gut or diaphragma hernia, and being Danish speaking.

Data and biological material

Demografic data, Diagnosis, questionnaire data, observational data, interview data,

Collaborating researchers and departments

Department of Nursing, UCL University College Lillebaelt