Investigating emotional wellbeing in children on HPN.
Research type
Research Study
Full title
Investigating the emotional wellbeing and mental health of patients and families with long term health conditions using the population of children on home parenteral nutrition.
IRAS ID
245443
Contact name
Akshay Batra
Contact email
Sponsor organisation
University Hospital Southampton NHS Trust
Duration of Study in the UK
0 years, 6 months, 0 days
Research summary
This research is a survey to assess emotional wellbeing and mental health of paediatric patients on home parenteral nutrition (HPN) and their carers. The population is a group of children with intestinal failure secondary to short bowel syndrome, neuromuscular disease or congenital enteropathy. PN is usually administered overnight and range from one to seven days a week. As such, these patients need support in the management of their condition, treatment, and daily life from their parents, guardians, or wider family.
The survey has been designed to assess the emotional wellbeing of paediatric patients with IF and the impact of caring for IF patients who receive PN. Carers must be aged 16 years or older and care for a paediatric HPN patient (aged 1 to 17 years old) who currently receives PN for one to seven days or nights per week. Patients aged 8 or above will be asked to participate in the study along with their carers.
We are seeking to recruit the population of 15 PN fed children who are under the care of the paediatric gastroenterology service at Southampton Children’s hospital and their carers. The survey will be completed within a routine clinic appointment and take ≤30 minutes to complete. Patients and carers will have support from a member of the medical team and a member of the psychology team with them to complete the questionnaires. They will have access to immediate and/or ongoing psychological support if the need arises during completion and scoring.
The survey comprises three broad sections: carer demographics, patient demographics, and emotional wellbeing. It includes study specific items and standardised measures:Demographic questionnaire
Hospital Anxiety and Depression Scale (Zigmond & Snaith, 1983)
Paediatric Inventory for Parents (Streisand, Braniecki, Tercyak & Kazak, 2001)
Brief COPE (Carver, 1997)Children over 8 years complete:
Revised Children’s Anxiety and Depression Scale (Chorpita, Yim, Moffitt, Umemoto & Francis, 2000)REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
18/NW/0619
Date of REC Opinion
15 Oct 2018
REC opinion
Further Information Favourable Opinion