Open Access Highly Accessed Research article

Designing a web-application to support home-based care of childhood CKD stages 3-5: Qualitative study of family and professional preferences

Veronica M Swallow1*, Andrew G Hall1, Ian Carolan12, Sheila Santacroce3, Nicholas JA Webb2, Trish Smith2 and Noreen Hanif2

Author Affiliations

1 School of Nursing, Midwifery & Social Work, University of Manchester, University of Manchester, Oxford Road, Manchester M13 9PL, UK

2 Royal Manchester Children’s Hospital, Central Manchester University Hospitals NHS Foundation Trust, Oxford Road, Manchester M13 9WL, UK

3 School of Nursing, University of North Carolina at Chapel Hill, School of Nursing 2007, Carrington Hall Campus Box 7460, Chapel Hill, NC 27599-7460, USA

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BMC Nephrology 2014, 15:34  doi:10.1186/1471-2369-15-34

Published: 18 February 2014

Abstract

Background

There is a lack of online, evidence-based information and resources to support home-based care of childhood CKD stages 3-5.

Methods

Qualitative interviews were undertaken with parents, patients and professionals to explore their views on content of the proposed online parent information and support (OPIS) web-application. Data were analysed using Framework Analysis, guided by the concept of Self-efficacy.

Results

32 parents, 26 patients and 12 professionals were interviewed. All groups wanted an application that explains, demonstrates, and enables parental clinical care-giving, with condition-specific, continously available, reliable, accessible material and a closed communication system to enable contact between families living with CKD. Professionals advocated a regularly updated application to empower parents to make informed health-care decisions. To address these requirements, key web-application components were defined as: (i) Clinical care-giving support (information on treatment regimens, video-learning tools, condition-specific cartoons/puzzles, and a question and answer area) and (ii) Psychosocial support for care-giving (social-networking, case studies, managing stress, and enhancing families’ health-care experiences).

Conclusions

Developing a web-application that meets parents’ information and support needs will maximise its utility, thereby augmenting parents’ self-efficacy for CKD caregiving, and optimising outcomes. Self-efficacy theory provides a schema for how parents’ self-efficacy beliefs about management of their child’s CKD could potentially be promoted by OPIS.

Keywords:
Interactive health communication applications (IHCA); Self-efficacy; Online parent information and support (OPIS) application; Chronic kidney disease (CKD); Children; Clinical support; Parental care-giving; Long-term