Going home after infant cardiac surgery: a UK qualitative study

Abstract

ObjectiveTo qualitatively assess the discharge processes and postdischarge care in the community for infants discharged after congenital heart interventions in the first year of life.DesignQualitative study using semistructured interviews and Framework Analysis.SettingUK specialist cardiac centres and the services their patients are discharged to.SubjectsTwenty-five cardiologists and nurses from tertiary centres, 11 primary and secondary health professionals and 20 parents of children who had either died after discharge or had needed emergency readmission.ResultsParticipants indicated that going home with an infant after cardiac intervention represents a major challenge for parents and professionals. Although there were reported examples of good care, difficulties are exacerbated by inconsistent pathways and potential loss of information between the multiple teams involved. Written documentation from tertiary centres frequently lacks crucial contact information and contains too many specialist terms. Non-tertiary professionals and parents may not hold the information required to respond appropriately when an infant deteriorates, this contributing to the stressful experience of managing these infants at home. Where they exist, the content of formal ‘home monitoring pathways’ varies nationally, and families can find this onerous.ConclusionsService improvements are needed for infants going home after cardiac intervention in the UK, focusing especially on enhancing mechanisms for effective transfer of information outside the tertiary centre and processes to assist with monitoring and triage of vulnerable infants in the community by primary and secondary care professionals. At present there is no routine audit for this stage of the patient journey.

Identifying improvements to complex pathways: evidence synthesis and stakeholder engagement in infant congenital heart disease

“…The archetype service problems generated from evidence (left-hand side) are grouped in themes with linked recommendations for service improvements (right-hand side). Data originated from qualitative analyses of family interviews ,12 13 31 32 health professional interviews ,12 13 31 32 helpline staff interviews 31 and an online discussion forum 31. A&E, accident and emergency department; GP, general practitioner; HLHS, hypoplastic left heart syndrome; HP, health professional; IVS, intact ventricular septum; MDT, multidisciplinary team; M&M, mortality and morbidity meeting; PA, pulmonary atresia; UVH, functionally univentricular heart.…”

“…Interviews with parents and health professionals regarding their experiences at or following discharge;12 13 32…”

“…Our starting point was three separate data frameworks generated in qualitative analyses of health professional, family and helpline staff interviews,12 13 31 32 and a thematic analysis of an online discussion forum 31. Some of the analytical themes were judged to be very similar to themes in other analyses but addressed from a different perspective (eg, a family as opposed to health professional perspective).…”

“…The data on the left-hand side were interpreted as seven different manifestations of the same archetypal problem (‘poor access to local support services’) by the research team. In this example, the data originated from two qualitative analyses: a framework analysis of family interviews12 13 31 and a framework analysis of health professional interviews 1213 This archetypal problem sits within the theme ‘Discharge and transferring to non-specialist centres’.…”

“…To date, research has largely focused on in-hospital and short-term outcomes 7–10. However, there is now an established body of evidence showing appreciable mortality postdischarge (3–5%)11 and problems in accessing and providing appropriate support for babies and their families following discharge 12–16…”