Participatory design methods for the development of a clinical telehealth service for neonatal homecare

Objectives: Neonatal homecare delivered during home visits by neonatal nurses is a common method for supporting families of preterm infants following discharge. Telehealth has been introduced for the provision of neonatal homecare, resulting in positive feedback from parents of preterm infants. While the benefits are beginning to be realised, widespread uptake of telehealth has been limited due to a range of logistical challenges. Understanding user requirements is important when planning and developing a clinical telehealth service. We therefore used participatory design to develop a clinical telehealth service for neonatal homecare. Methods: The study adopted a participatory design approach to engage users in the development and design of a new telehealth service. Participatory design embraces qualitative research methods. Creative and technical workshops were conducted as part of the study. Tests of the telehealth service were conducted in the neonatal unit. Participants in this study were former and current parents of preterm infants eligible for neonatal homecare, and clinical staff (medical and nursing) from the neonatal unit. Preterm infants accompanied their parents. Results: Based on the results obtained during the workshops and subsequent testing, we developed an application (app), which was integrated into the medical record at the neonatal unit. The app was used to initiate videoconferences and chat messages between the family at home and the neonatal unit, and to share information regarding infant growth and well-being. Conclusion: Results obtained from the workshops and testing demonstrated the importance of involving users when developing new telehealth applications. The workshops helped identify the challenges associated with delivery of the service, and helped instruct the design of a new telehealth service for neonatal homecare based on the needs of parents and clinical staff.

[1]  M. Kyng,et al.  Participatory Design in Health Sciences: Using Cooperative Experimental Methods in Developing Health Services and Computer Technology , 2007, Qualitative health research.

[2]  Christian Nøhr,et al.  Participatory Design, User Involvement and Health IT Evaluation. , 2016, Studies in health technology and informatics.

[3]  Jane Clemensen,et al.  Nurses' Experience of Using an Application to Support New Parents after Early Discharge: An Intervention Study , 2015, International journal of telemedicine and applications.

[4]  A. Farmer,et al.  Interactive telemedicine: effects on professional practice and health care outcomes. , 2015, The Cochrane database of systematic reviews.

[5]  D. B. Danbjørg,et al.  Do families after early postnatal discharge need new ways to communicate with the hospital? A feasibilility study. , 2014, Midwifery.

[6]  Cheryl Tatano Beck,et al.  Essentials of Nursing Research: Appraising Evidence for Nursing Practice , 2001 .

[7]  Søren Hansen,et al.  The creative platform: a didactic approach for unlimited application of knowledge in interdisciplinary and intercultural groups , 2009 .

[8]  D. B. Danbjørg,et al.  Intervention among new parents followed up by an interview study exploring their experiences of telemedicine after early postnatal discharge. , 2015, Midwifery.

[9]  S. Fagerhaugh,et al.  Participant Observation , 1979 .

[10]  H. Klip,et al.  Early discharge with tube feeding at home for preterm infants is associated with longer duration of breast feeding , 2009, Archives of Disease in Childhood Fetal and Neonatal Edition.

[11]  M. Cerdá,et al.  Psychological stress of parents of preterm infants enrolled in an early discharge programme from the neonatal intensive care unit: a prospective randomised trial , 2008, Archives of Disease in Childhood Fetal and Neonatal Edition.

[12]  A. Örtenstrand,et al.  Hospital‐assisted home care after early discharge from a Swedish neonatal intensive care unit was safe and readmissions were rare , 2016, Acta paediatrica.

[13]  Jane Clemensen,et al.  The Model for Assessment of Telemedicine (MAST): A scoping review of empirical studies , 2017, Journal of telemedicine and telecare.

[14]  Lynn Sturm Implementation and Evaluation of a Home Gavage Program for Preterm Infants , 2005, Neonatal Network.

[15]  P. Kuhn,et al.  Eight principles for patient-centred and family-centred care for newborns in the neonatal intensive care unit , 2017, Archives of Disease in Childhood: Fetal and Neonatal Edition.

[16]  Lene Lindberg,et al.  The Stockholm Neonatal Family Centered Care Study: Effects on Length of Stay and Infant Morbidity , 2010, Pediatrics.

[17]  A. Brødsgaard,et al.  A preterm lifeline: Early discharge programme based on family-centred care. , 2015, Journal for specialists in pediatric nursing : JSPN.

[18]  S. McKnight,et al.  Does early hospital discharge with home support of families with preterm infants affect breastfeeding success? A randomized trial , 2000, Acta paediatrica.

[19]  Jane Clemensen,et al.  Participatory design methods in telemedicine research , 2016, Journal of telemedicine and telecare.

[20]  A. Örtenstrand,et al.  Early discharge of preterm infants needing limited special care, followed by domiciliary nursing care , 1999, Acta paediatrica.

[21]  A. Brown What Do Women Really Want? Lessons for Breastfeeding Promotion and Education. , 2016, Breastfeeding medicine : the official journal of the Academy of Breastfeeding Medicine.

[22]  J. Clemensen,et al.  Telemedicine in Neonatal Home Care: Identifying Parental Needs Through Participatory Design , 2016, JMIR research protocols.

[23]  Anna Gund,et al.  Using telemedicine in the care of newborn infants after discharge from a neonatal intensive care unit reduced the need of hospital visits , 2016, Acta paediatrica.

[24]  Christian Nøhr,et al.  Clinical simulation: A method for development and evaluation of clinical information systems , 2015, J. Biomed. Informatics.

[25]  Morten Kyng,et al.  Users and computers: A contextual approach to design of computer artifacts , 1996, Scand. J. Inf. Syst..

[26]  Jesper Simonsen,et al.  Routledge International Handbook of Participatory Design , 2012 .

[27]  Nigel R Armfield,et al.  Telemedicine ‐ is the cart being put before the horse? , 2014, The Medical journal of Australia.

[28]  Cameron D. Norman,et al.  eHealth Literacy: Essential Skills for Consumer Health in a Networked World , 2006, Journal of medical Internet research.

[29]  Mickael Bech,et al.  A MODEL FOR ASSESSMENT OF TELEMEDICINE APPLICATIONS: MAST , 2012, International Journal of Technology Assessment in Health Care.

[30]  Bengt Arne Sjöqvist,et al.  A randomized controlled study about the use of eHealth in the home health care of premature infants , 2013, BMC Medical Informatics and Decision Making.

[31]  Richard Wootton,et al.  Adoption of telemedicine: from pilot stage to routine delivery , 2012, BMC Medical Informatics and Decision Making.

[32]  H. Wigert,et al.  Parents' experiences with neonatal home care following initial care in the neonatal intensive care unit: a phenomenological hermeneutical interview study. , 2014, Journal of advanced nursing.