[Analysis of a Family-centred Care Programme with Follow-up Home-visits in Neonatology - In Times of the Directive from G-BA]. / Konzeptanalyse einer stationären und ambulanten psychosozialen familienzentrierten Betreuung in der Neonatologie in Zeiten des G-BA-Beschlusses.

BACKGROUND: Marked progress in neonatology changed care of very preterm infants (VLBW) over the last decades - but also the attitude towards family-centred care (FCC). With the directive of the German Federal Joined Committee (G-BA), politicians recognize the necessity of neonatal FCC. AIM: To evaluate time and personnel costs necessary at a centre of established FCC. METHODS: Elternberatung "Frühstart" is a FCC programme for VLBW and seriously ill neonates from preganancy at risk to follow-up home-visits delivered by one interdisciplinary team. Analysis (2011-2014): 1.) Number of cases /participation in programme, 2.) resources of time, 3) and personnel, 4.) funding, 5) economic impact. RESULTS: 1.1.2011-31.12.2014: 441 cases (total cases: 2 212) participated in the programme. Participation of VLBW: mean 92% (86.4-97,2%). Costs of time are highest in neonates with congenital malformations: median 13.8 h, VLBW: median 11,2 h. Transition to home is most time intensive: median 7,3 (0-42.5) h. In average of 3.1 full-time nurses (part-time workers) are able to counsel 48 families/quarter. In severe cases funding is partly provided by health care insurances for social medical aftercare: positive applications: mean 92.7% (79.6-97.7%). CONCLUSION: Participation in the FCC programme in neonatology is high and costs of time are manageable.

Decision-making for a successful bowel continence program.

Bowel continence is one of the most difficult challenges for patients with spina bifida. Incontinence acts as a social stigma for children and a barrier for adults seeking employment. We present an algorithm for stepwise decision-making in construction of personalized continence programs for greater likelihood of success. The protocol contains 13 assessment points including; stool consistency, frequency and amount; mobility; level of paraplegia: diet; medication; anal/rectal canal tone; prior programs attempted; family routines; age; accessibility; and learning issues. Based on outcomes of these assessments, an individualized bowel program is constructed. The algorithm helps the practitioner and patient decide on components and indicators of a successful continence program. The recommended program might include timed toileting, suppository, continence enema, and ACE procedure, or a combination. Evaluation and patient education address adequate fluid/fiber, appropriate toileting equipment, and use of stool softeners/laxatives. Descriptions are available. Key elements in monitoring a continuing plan for continence include: the degree of constipation and its etiology; changing age; family availability for assistance until interdependence is optimal; wheelchair accessibility of the toilet; and ability to transfer to and from the toilet. Use of the algorithm allows for careful decision-making based on information from the patient and family. This has led to greater success in bowel continence in children with spina bifida.