Home Parenteral Nutrition
Conditions
Brief summary
Description of the life style of patients and families during the course of long term HPN. 1. Evaluation of the familial impact of HPN, and the way it is perceived 2. Evaluation of the satisfaction regarding the management by the multi-professional team (Medical, nursing, home care company and logistic, social, psychologist etc..) for improving the global management of these challenging patients 3. Analysis of the factors related to specific distress and the protective factors
Detailed description
Gastrointestinal diseases may cause intestinal failure (IF) requiring long term parenteral nutrition (PN) which is, most of the time, performed at home (HPN). However such conditions represent a great burden for the parents and the family. The birth of a child with such disease changes the life of the entire family including life style, leisures, social relationships and professional activities. These condition obligate to change the personal and familial organization according to the course of the disease. The PN treatment which was seen as life saving when first started might become a burden altogether physically and psychologically for the child and his/her family. The Necker-Enfants Malades hospital developed home PN in the early eighties as an alternative to very long hospitalizations. Nowadays, there are 7 expert centers for HPN in France. The Necker HPN program is the oldest and the largest looking after i a third of the 400 children on HPN in France. Our organization is based on a specializednursing team together with medical doctors specialized in pediatric clinical nutrition. The nursing team is also a teaching team for training the parents for daily PN care. The HPN team works in collaboration with professional partners: pharmacists, dieticians, psychologists, occupational therapistsand speech specialists as well as with social workers. Results of our clinical activities have been published in international peer review journals. However those publications reported only clinical data in terms of diagnosis, prognosis, mortality, morbidity and growth.There was any data on family quality of life (QOL) and on life style changes (LSC). In other words, by reporting only on medical aspects, there was any analyze on familial, psychosocial and professional impact of long term HPN.
Interventions
None listed
Sponsors
Hôpital Necker-Enfants Malades
Imagine Institute
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Months to 23 Years
Healthy volunteers
No
Inclusion criteria
* Patients followed up by the Necker HPN expert center * HPN ≥ 12 months * HPN between 2004 and 2020 * Parents reading and writing French language
Exclusion criteria
* Refusal of the parents to participate to the survey
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Demographic data and socio-familial life style with a child on long-term | Base line | socio-familial life style |
| Data involving the management of HPN | Base line | Logistics organization |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Perception of the familial impact of HPN on life style in case of protracted HPN dependency | Base line | Child development |
| Satisfaction level of the management by the HPN expert center | Base Line | Medical and nursing logistics |
| Factors influencing the familial burden | Base Line | Type of disease |
Countries
France
Outcome results
None listed