Children and young people with CKD: a qualitative study of their views on desirable components for a developmentally appropriate, CKD-specific information and support software application

Description

Aims: 

• Establish a ‘virtual’, CKD-specific CYP and parent research advisory group to inform this and future studies;
• Collaboratively identify gaps in current online information and support, and determine the desirable components for a CKD and CYP-focussed intervention;
• Complete the modelling stage of our phased approach towards development and evaluation of a CKD-specific, online family information and support (OFIS) software application for parents and CYP in preparation for developing a protocol for a future, UK-wide confirmatory trial of OFIS.

Method

Phase 1: To achieve objective 1 we will follow NIHR INVOLVE guidelines to establish a sustainable, virtual, national CKD-specific, CYP and parent research advisory group.

Phase 2: To achieve objective 2 we will undertake a qualitative study in Leeds and Great Ormond Street Children’s Hospitals kidney units. We will explore the views of 5-18 year olds with CKD, parents and professionals on the gaps in current online information and support for CYP, and determine desirable components for a CYP-focussed software application. To do this we will purposively sample: CYP and their parents to achieve maximum variation regarding CYPs’ age, developmental stage, disease duration, ethnicity, sex, socioeconomic status and treatment type (recruiting 6-8 x 5-10 year olds, 6-8 x 11-14 year olds and 6-8 x15 –18 year olds); professionals to achieve maximum variation regarding discipline and level of experience. We will: offer individual or group qualitative interviews according to individuals’ preferences; use age and developmentally appropriate, technology-supported methods to explore CYPs’ views; analyse data using Framework Analysis.

Phase 3: To achieve objective 3 we will produce a software-development specification based on phase 2 data that will complete the modelling phase of our proposed OFIS intervention.

At completion, a protocol to NIHR for a full UK trial to test the individually-tailored intervention components (parent and CYP) and assess cost-effectiveness will be designed.  The project addresses the goals of both BKPA (to provide information and advice for those with kidney disease) and BRS (to promote effective patient-centred, multi-professional care to improve quality of life for people with kidney failure, their families and carers; advance education in the area of renal disease/RRT in the UK; and fund and support multi-professional research into kidney disease and its management).

Background

Living with chronic kidney disease stages 3-5 (CKD) can be challenging for children and young people aged 5-18 years (CYP); they need to understand and cope with their condition, adhere to complex and unpleasant treatment regimens, and develop self-management skills as they move towards adulthood. In our previous research we developed, evaluated and implemented into standard practice in one hospital a CKD-specific, online parent information and support software application. In that research CYP requested a CYP-friendly application to help them understand and live with CKD but we have found no reports of suitable applications that were rigorously developed with CYP and we do not know what components they would like in their application. Furthermore, no national, CKD-specific, CYP and parent research advisory group exists to guide the design and delivery of psychosocial research such as this.  

People

Swallow (PI), Hall, Nightingale, Feather, Brennan, Friedl

Funding body: British Renal Society £25800

Contact: Veronica Swallow