Skip to main content
Top
Published in: BMC Nephrology 1/2014

Open Access 01-12-2014 | Research article

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

Authors: Veronica M Swallow, Andrew G Hall, Ian Carolan, Sheila Santacroce, Nicholas JA Webb, Trish Smith, Noreen Hanif

Published in: BMC Nephrology | Issue 1/2014

Login to get access

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.
Appendix
Available only for authorised users
Literature
1.
2.
go back to reference DOH: The National Service Framework for Renal Services. 2006, London: Department of Health: Working for Children and Young People DOH: The National Service Framework for Renal Services. 2006, London: Department of Health: Working for Children and Young People
3.
go back to reference Goldstein S: Quality of life in children with CKD: research expanding, but more solely needed. Nephrology Times. 2009, 1517: 285-297. Goldstein S: Quality of life in children with CKD: research expanding, but more solely needed. Nephrology Times. 2009, 1517: 285-297.
4.
go back to reference Murray E, Burns J, See Tai S, Lai R, Nazareth I: Interactive health communication applications for people with chronic disease. Cochrane Database Syst Rev. 2005, Art. No.: CD004274. doi:10.1002/14651858.CD004274.pub4, 4CrossRef Murray E, Burns J, See Tai S, Lai R, Nazareth I: Interactive health communication applications for people with chronic disease. Cochrane Database Syst Rev. 2005, Art. No.: CD004274. doi:10.1002/14651858.CD004274.pub4, 4CrossRef
5.
go back to reference National-Statistics-Online: Households with access to the internet. 2008 National-Statistics-Online: Households with access to the internet. 2008
6.
go back to reference Swallow V: An exploration of mothers’ and fathers’ views of their identities in chronic-kidney-disease management: parents as students?. J Clin Nurs. 2008, 17 (23): 3177-3186. 10.1111/j.1365-2702.2008.02642.x.CrossRefPubMed Swallow V: An exploration of mothers’ and fathers’ views of their identities in chronic-kidney-disease management: parents as students?. J Clin Nurs. 2008, 17 (23): 3177-3186. 10.1111/j.1365-2702.2008.02642.x.CrossRefPubMed
7.
go back to reference Speros C: Health literacy: concept analysis. J Adv Nurs. 2005, 50 (6): 633-640. 10.1111/j.1365-2648.2005.03448.x.CrossRefPubMed Speros C: Health literacy: concept analysis. J Adv Nurs. 2005, 50 (6): 633-640. 10.1111/j.1365-2648.2005.03448.x.CrossRefPubMed
8.
go back to reference Swallow V, Lambert H, Clarke C, Campbell S, Jacoby A: Childhood chronic-kidney-disease: a longitudinal-qualitative study of families learning to share management early in the trajectory. Patient Educ Couns. 2008, 73: 354-362. 10.1016/j.pec.2008.07.052.CrossRefPubMed Swallow V, Lambert H, Clarke C, Campbell S, Jacoby A: Childhood chronic-kidney-disease: a longitudinal-qualitative study of families learning to share management early in the trajectory. Patient Educ Couns. 2008, 73: 354-362. 10.1016/j.pec.2008.07.052.CrossRefPubMed
9.
go back to reference Gibson CH: The process of empowerment in mothers of chronically ill children. J Adv Nurs. 1995, 21 (6): 1201-1210. 10.1046/j.1365-2648.1995.21061201.x.CrossRefPubMed Gibson CH: The process of empowerment in mothers of chronically ill children. J Adv Nurs. 1995, 21 (6): 1201-1210. 10.1046/j.1365-2648.1995.21061201.x.CrossRefPubMed
10.
go back to reference Swallow V, Lambert H, Santacroce S, Macfadyen A: Fathers and mothers developing skills in managing children’s long-term medical conditions: how do their qualitative accounts compare?. Child Care Health Dev. 2011, 37 (4): 512-523. 10.1111/j.1365-2214.2011.01219.x.CrossRefPubMed Swallow V, Lambert H, Santacroce S, Macfadyen A: Fathers and mothers developing skills in managing children’s long-term medical conditions: how do their qualitative accounts compare?. Child Care Health Dev. 2011, 37 (4): 512-523. 10.1111/j.1365-2214.2011.01219.x.CrossRefPubMed
11.
go back to reference Bandura A: Self efficacy: The exercise of control. 1997, New York: W H Freeman Bandura A: Self efficacy: The exercise of control. 1997, New York: W H Freeman
12.
go back to reference Boeije H: A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Qual Quant. 2002, 36 (4): 391-409. 10.1023/A:1020909529486.CrossRef Boeije H: A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Qual Quant. 2002, 36 (4): 391-409. 10.1023/A:1020909529486.CrossRef
13.
go back to reference Higham S: The evolving role of fathers in the care of their sick children in. Children and Young People’s Nursing Practice and Health. 2011, London: Hodder Arnold: Edited by Davies R, Davis A, 31-56. Higham S: The evolving role of fathers in the care of their sick children in. Children and Young People’s Nursing Practice and Health. 2011, London: Hodder Arnold: Edited by Davies R, Davis A, 31-56.
14.
go back to reference Smith J, Cheater F, Bekker H: Parents’ experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expect. 2013, n/a-n/a Smith J, Cheater F, Bekker H: Parents’ experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expect. 2013, n/a-n/a
15.
go back to reference Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, O’Malley J: Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. 2009, jsp034- Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, O’Malley J: Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. 2009, jsp034-
16.
go back to reference Ritchie J: Lewis J (eds.): Qualitative Research Practice: A guide for Social Science Students and Researchers. 2003, London: Sage Publications Ritchie J: Lewis J (eds.): Qualitative Research Practice: A guide for Social Science Students and Researchers. 2003, London: Sage Publications
17.
go back to reference Swallow V, Newton J, Van Lottum C: Research in brief. How to manage and display qualitative data using ‘Framework’ and MICROSOFT Excel. J Clin Nurs. 2003, 12 (4): 610-612. 10.1046/j.1365-2702.2003.00728.x.CrossRefPubMed Swallow V, Newton J, Van Lottum C: Research in brief. How to manage and display qualitative data using ‘Framework’ and MICROSOFT Excel. J Clin Nurs. 2003, 12 (4): 610-612. 10.1046/j.1365-2702.2003.00728.x.CrossRefPubMed
18.
go back to reference Corbin J, Strauss A: Basics of Qualitative Research. 2008, London: Sage Corbin J, Strauss A: Basics of Qualitative Research. 2008, London: Sage
19.
go back to reference Green J, Thorogood N: Qualitative methods for health research. 2004, London: Sage Green J, Thorogood N: Qualitative methods for health research. 2004, London: Sage
20.
go back to reference BRS: The Renal Team, A Multi-Professional Renal Workforce Plan For Adults and Children with Renal Disease. 2002 BRS: The Renal Team, A Multi-Professional Renal Workforce Plan For Adults and Children with Renal Disease. 2002
21.
go back to reference Whyte KL, Hunter I: Internet access, utilisation and perception by parents. Arch Dis Child. 2008, 93 (5): 448-b-449. 10.1136/adc.2008.137851.CrossRefPubMed Whyte KL, Hunter I: Internet access, utilisation and perception by parents. Arch Dis Child. 2008, 93 (5): 448-b-449. 10.1136/adc.2008.137851.CrossRefPubMed
22.
go back to reference Wainstein BK, Sterling-Levis K, Baker SA, Taitz J, Brydon M: Use of the internet by parents of paediatric patients. J Paediatr Child Health. 2006, 42 (9): 528-532. 10.1111/j.1440-1754.2006.00916.x.CrossRefPubMed Wainstein BK, Sterling-Levis K, Baker SA, Taitz J, Brydon M: Use of the internet by parents of paediatric patients. J Paediatr Child Health. 2006, 42 (9): 528-532. 10.1111/j.1440-1754.2006.00916.x.CrossRefPubMed
23.
go back to reference Darzi: High Quality Care for All: NHS Next Stage Review Final Report. 2008, The Stationery Office: Norwich Darzi: High Quality Care for All: NHS Next Stage Review Final Report. 2008, The Stationery Office: Norwich
24.
go back to reference Resnick B: Self-efficacy. In: Middle Range Theories: Application to Nursing Research. 2004, Philadelphia: Lipincott Williams & Wilkins: edn. Edited by Peterson S, Bredow T Resnick B: Self-efficacy. In: Middle Range Theories: Application to Nursing Research. 2004, Philadelphia: Lipincott Williams & Wilkins: edn. Edited by Peterson S, Bredow T
25.
go back to reference Knafl KA, Darney BG, Gallo AM, Angst DB: Parental perceptions of the outcome and meaning of normalization. Res Nurs Health. 2010, 33 (2): 87-98.PubMedPubMedCentral Knafl KA, Darney BG, Gallo AM, Angst DB: Parental perceptions of the outcome and meaning of normalization. Res Nurs Health. 2010, 33 (2): 87-98.PubMedPubMedCentral
26.
go back to reference Clarke C, Reed J, Wainwright D, McClelland S, Swallow V, Harden J, Walsh A: The discipline of improvement: something old, something new?. J Nurs Manag. 2004, 12: 85-96. 10.1111/j.1365-2834.2004.00463.x.CrossRefPubMed Clarke C, Reed J, Wainwright D, McClelland S, Swallow V, Harden J, Walsh A: The discipline of improvement: something old, something new?. J Nurs Manag. 2004, 12: 85-96. 10.1111/j.1365-2834.2004.00463.x.CrossRefPubMed
27.
go back to reference Bandura A: Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977, 84 (2): 191-215.CrossRefPubMed Bandura A: Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977, 84 (2): 191-215.CrossRefPubMed
28.
go back to reference Merkel RM, Wright T: Parental self-efficacy and online support among parents of children diagnosed with type 1 diabetes mellitus. Pediatr Nurs. 2012, 38 (6): 303-308.PubMed Merkel RM, Wright T: Parental self-efficacy and online support among parents of children diagnosed with type 1 diabetes mellitus. Pediatr Nurs. 2012, 38 (6): 303-308.PubMed
29.
go back to reference Bandura A: Social Foundations of Thought and Action. 1986, Prentice Hall: Englewood Cliffs, New Jersey Bandura A: Social Foundations of Thought and Action. 1986, Prentice Hall: Englewood Cliffs, New Jersey
30.
go back to reference MRC: Developing and evaluating complex interventions. 2008, London: Medical Research Council: new guidance MRC: Developing and evaluating complex interventions. 2008, London: Medical Research Council: new guidance
31.
go back to reference Marr S, Steele K, Swallow V, Craggs S, Procter S, Newton J, Sen B, McNabb A: Mapping the range and scope of emergency nurse practitioner services in the Northern and Yorkshire region: a telephone survey. Emerg Med J. 2003, 20 (5): 414-417. 10.1136/emj.20.5.414.CrossRefPubMedPubMedCentral Marr S, Steele K, Swallow V, Craggs S, Procter S, Newton J, Sen B, McNabb A: Mapping the range and scope of emergency nurse practitioner services in the Northern and Yorkshire region: a telephone survey. Emerg Med J. 2003, 20 (5): 414-417. 10.1136/emj.20.5.414.CrossRefPubMedPubMedCentral
32.
go back to reference Pieper P: Telephone interviews in research with children. J Pediatr Healthc. 2011, 25 (6): 409-412. 10.1016/j.pedhc.2010.11.002.CrossRef Pieper P: Telephone interviews in research with children. J Pediatr Healthc. 2011, 25 (6): 409-412. 10.1016/j.pedhc.2010.11.002.CrossRef
33.
go back to reference Irvine A, Drew P, Sainsbury R: ‘Am I not answering your questions properly?’ Clarification, adequacy and responsiveness in semi-structured telephone and face-to-face interviews. Qual Res. 2013, 13 (1): 87-106. 10.1177/1468794112439086.CrossRef Irvine A, Drew P, Sainsbury R: ‘Am I not answering your questions properly?’ Clarification, adequacy and responsiveness in semi-structured telephone and face-to-face interviews. Qual Res. 2013, 13 (1): 87-106. 10.1177/1468794112439086.CrossRef
Metadata
Title
Designing a web-application to support home-based care of childhood CKD stages 3-5: Qualitative study of family and professional preferences
Authors
Veronica M Swallow
Andrew G Hall
Ian Carolan
Sheila Santacroce
Nicholas JA Webb
Trish Smith
Noreen Hanif
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Nephrology / Issue 1/2014
Electronic ISSN: 1471-2369
DOI
https://doi.org/10.1186/1471-2369-15-34

Other articles of this Issue 1/2014

BMC Nephrology 1/2014 Go to the issue
Live Webinar | 27-06-2024 | 18:00 (CEST)

Keynote webinar | Spotlight on medication adherence

Live: Thursday 27th June 2024, 18:00-19:30 (CEST)

WHO estimates that half of all patients worldwide are non-adherent to their prescribed medication. The consequences of poor adherence can be catastrophic, on both the individual and population level.

Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.

Prof. Kevin Dolgin
Prof. Florian Limbourg
Prof. Anoop Chauhan
Developed by: Springer Medicine
Obesity Clinical Trial Summary

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine

Highlights from the ACC 2024 Congress

Year in Review: Pediatric cardiology

Watch Dr. Anne Marie Valente present the last year's highlights in pediatric and congenital heart disease in the official ACC.24 Year in Review session.

Year in Review: Pulmonary vascular disease

The last year's highlights in pulmonary vascular disease are presented by Dr. Jane Leopold in this official video from ACC.24.

Year in Review: Valvular heart disease

Watch Prof. William Zoghbi present the last year's highlights in valvular heart disease from the official ACC.24 Year in Review session.

Year in Review: Heart failure and cardiomyopathies

Watch this official video from ACC.24. Dr. Biykem Bozkurt discusses last year's major advances in heart failure and cardiomyopathies.