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

Abstract

BackgroundThere is a lack of online, evidence-based information and resources to support home-based care of childhood CKD stages 3-5.MethodsQualitative 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.Results32 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).ConclusionsDeveloping 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.

Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration

“…In the emerging field of evidence-based app development for children with long-term conditions [48-50], a partial, misinterpreted or distorted understanding of children’s, parents’, and professionals’ requirements can lead to the development of health care apps that are suboptimal and not fit for purpose. While there is significant debate around the rigor and transferability of qualitative health research findings, in particular Framework Analysis as used in this study [33,51], little attention is paid to the following: (1) the growing need to use qualitative research methods to gather information about users’ requirements and (2) the development of integrated health apps for personal mobile devices for children in a participatory way [14].…”

Informações on-line como suporte às famílias de crianças e adolescentes com doença crônica

“…In the second category, the weaknesses of the use of online information to support the parents of children and adolescents with chronic diseases were: difficulties in understanding the information (14,19) ; the "digital divide" (limited knowledge of different languages, use of high-cost electronic devices, and access for the low-income population) (16,(19)(20)(21) ; restriction of online therapeutic models to populations in specific chronic conditions (15) ; low quality (23)(24) and reliability (24) of the available content; low availability of data for adolescents (23) ; deficit of skills of health professionals to identify and conduct the use of online support tools (20)(21)(22)(23)(24) , and ignorance of legal regulations on online communication (20) .…”

“…Chart 1 -Characterisation of the papers included in the review (continue) In the first category, the potentialities of the use of online information to support children and youths with chronic disease were: search for online information, both sexes, in families with chronically ill children, which serves as relief for the parents since they verified that the symptoms and behaviours of their children are appropriate for the age and provide knowledge for the family members to discuss treatment with the physician (13) ; source of complementary knowledge (17) ; supports caregivers due to the dynamism, flow, and possibility of exchanging information (18,20) ; helps parents cope with chronic diseases (14,16,(19)(20)(21)(22) ; attracts teenage audiences (16) ; contributes in self-care (17)(18) ; has positive results in online therapeutic follow-up, as in the consultations at the doctors' offices (15) ; and although the internet is widely accessed, health professionals continue to be the main source of information (20) . In the second category, the weaknesses of the use of online information to support the parents of children and adolescents with chronic diseases were: difficulties in understanding the information (14,19) ; the "digital divide" (limited knowledge of different languages, use of high-cost electronic devices, and access for the low-income population) (16,(19)(20)(21) ; restriction of online therapeutic models to populations in specific chronic conditions (15) ; low quality (23)(24) and reliability (24) of the available content; low availability of data for adolescents (23) ; deficit of skills of health professionals to identify and conduct the use of online support tools (20)(21)(22)(23)(24) , and ignorance of legal regulations on online communication …”

“…The dynamism of the internet provides a flow of simultaneous communication and becomes an instrument of support to caregivers in decision making and reduces family stress, which only benefits the child and/or adolescent (18,(20)(21)(22)(23)(24)(25)(26)(27)(28)(29)(30) . In addition to the content available on the internet and online services, in order to cope with the chronic condition, parents, children, and adolescents use applications that focus on the specific pathology (14,16,(19)(20)(21)(22) .…”

“…In addition to the content available on the internet and online services, in order to cope with the chronic condition, parents, children, and adolescents use applications that focus on the specific pathology (14,16,(19)(20)(21)(22) . These tools allow them to expand their health education and manage their own condition as considered convenient (31) .…”