An exploratory qualitative design was applied to get relevant input from the users to the future development of a supportive eHealth intervention. This study is a part of the developmental phase of a larger research program with the overall goal of developing and testing an eHealth intervention to support parents and health care professionals during pediatric home infusion therapy. The Medical Research Council’s framework for the development and evaluation of complex interventions [27] and a participatory design [28] framed the overall research project. The framework guides researchers through 4 interconnected phases, development, feasibility, evaluation, and implementation. Engaging the users of the eHealth intervention throughout the research study ensured the developmental relevance of our study and its feasibility in clinical practice, improving the probability of successful implementation [26].

The study was conducted in 3 pediatric departments at a university hospital in Copenhagen, Denmark, 1 specializing in oncology and hematology (20 in-patient beds), 1 in organ and infection diseases (12 in-patient beds), and 1 day hospital (7 beds), with around 2000 combined admissions annually.

In 2018, the departments started offering home infusion therapy with portable pumps as an option to children with diagnoses such as cancer or with an acute infection with no underlying condition. The therapy was primarily used for intravenous antibiotic treatment and always initiated during hospitalization at an in-patient ward or in an out-patient setting. The children had a central venous catheter or midline catheter. A nurse informed and trained primarily one of the child’s parents before home infusion therapy was initiated and administered the portable pump to the child at the hospital before discharge. The child returned the following day to the hospital to receive a new dose in the pump or to discontinue treatment. The parent’s task was to clinically observe the child, the pump and infusion at home, and react if problems arose, such as reactions to the medicine or a pump alarm sounding. If the child had a serious reaction, the parent was instructed to immediately call an ambulance. Health care professionals also taught some parents how to change the pump medication or replace the elastomeric pump with a new one to allow the family to stay at home 1 or 2 additional days before returning to the hospital,

A purposeful sampling strategy of children, parents, and health care professionals was used to obtain rich and varied data on the home infusion therapy [31]. Inclusion criteria for children were 0 to 18 years of age, having received home infusion therapy with a portable pump with any type of medication, having the parent living with the child part or full time, and the parent speaking Danish or English. Most children receiving the therapy had an underlying long-term illness, but children with an acute infection with no underlying condition were also approached. In total, 14 children and their parents were informed about the study, and all agreed to participate. The children were invited to participate in an interview together with their parent, which resulted in 13 children participating, 2 of whom actively joined in. In 3 families, both parents participated and were interviewed jointly or separately (Table 1). Inclusion criteria for health care professionals were: (1) nurse or a physician, (2) working at one of the 3 departments, and (3) had experience with providing home infusion therapy. A total of 15 health care professionals were approached, and all agreed to participate.

Data were collected from February to July 2020. Parents were interviewed based on a 2-part exploratory semistructured interview guide. The first part covered experiences and needs regarding home infusion therapy in terms of provision of and responsibility for it, preparation and training, and sense of safety, worries, and challenges. The second part presented concrete examples of digital features to generate ideas on how technology could address the needs and preferences of the child and parent, in addition to focusing on how an eHealth intervention could support home infusion therapy. We asked which digital features to include, such as possible advantages and disadvantages, experience with digital technologies, and what features are important to have in an eHealth intervention. The eHealth Literacy Framework provided the underlying inspiration for the questions in the second part to understand user needs and prerequisites when new digital health services are introduced [32]. The interviews were conducted by the first author (n=16), at one of the pediatric departments in a meeting room or an in-patient room lasting and lasted 30 to 120 minutes, though 1 was done by phone.

Health care professionals were interviewed in 5 separate focus groups with a semistructured interview guide corresponding to the guide for parents though tailored to their professional role. The focus group interviews, which lasted 60 to 90 minutes, were held in a meeting room at one of the pediatric departments. The interviews were recorded and transcribed verbatim.

A qualitative content analysis of the transcribed interviews was used comprising a 5-step iterative and inductive approach based on Graneheim and Lundman [33] to identify any patterns and variations in participant experiences. First, 2 authors [HH and MLO] read the text independently to gain an overall understanding. Second, they identified meaning units in terms of words, sentences, and paragraphs that related to the study aim. Next, the meaning units were condensed, organized, and coded using NVivo software (Lumivero). Fourth, the codes were compared with identify similarities and differences, before being organized into subthemes. Finally, the subthemes were compared and analyzed, after which they were merged into main themes. The defined main themes had a consistent pattern of underlying meaning in terms of the condensed meaning units, codes, and subthemes. To strengthen the trustworthiness of the study, the same 2 authors discussed the meaning units, codes, subthemes, and themes throughout the analysis until reaching consensus. Initially, individual and focus group interviews were analyzed separately as 2 datasets. During the data analysis, it became apparent that the subthemes overlapped, and data were analyzed together. In the last phase of the analysis, all authors reflected on and discussed the main themes and subthemes.

The authors discussed the analysis, interpretations, and themes at seminars and presentations with key health care professionals involved in home infusion therapy and other researchers to enhance credibility. The authors also discussed their preunderstanding to consider how it may influence data collection and analysis, all of us are experienced in conducting qualitative studies. The first author [HH], who is a nurse, has experience with implementing home infusion therapy at the 3 departments but did not have any clinical contact with the families before the interviews. The health care professionals knew HH, which may have hampered them from freely expressing themselves, but her knowledge of home infusion therapy may also have made them feel confident enough to provide in-depth responses to the interviews.

The Danish Protection Agency approved the study (P-2019‐392), while approval from the Regional Research Ethics Committees for the Capitol Region of Denmark was not required since it only assesses studies that collect biological material. The study adhered to the Declaration of Helsinki, International Ethical Guidelines for Health-Related Research Involving Humans, and current Swedish and European law. All participants were assured that participation was voluntary and that they could withdraw from the study at any time without affecting their child’s treatment or the health care professionals’ work. All participants provided written informed consent and were assured confidentiality. When applicable, the children received age-appropriate information about the study based on their cognitive abilities, language skills, and legal guardian’s preferences.

The amount of experience parents and health care professionals had with home infusion therapy ranged from doing it a few to multiple times. The parents expressed that it enhanced their child’s well-being and the whole family’s due to having a greater opportunity to spend everyday life together more at home. They were willing to take on the additional caregiving tasks and responsibility due to the benefits associated with doing so. The health care professionals also described how the child and family benefited and how important the option of home infusion therapy was.

Three main themes were identified comprising six subthemes: (1) increasing safe self-management at home, (2) adapting information and responsibility to individual changing needs, and (3) requesting digital features to ensure skill level, safety, and quality of care (Textbox 1). The themes and subthemes were bound together in an overarching theme “managing the extended responsibility of home infusion therapy.” This theme encompasses the core experience of the increased responsibility parents take on when managing the therapy and the health care professionals being responsible for therapy taking place outside the hospital. Digital features were described as means to support that responsibility.

The first and second themes describe the needs of parents and health care professionals based on current experiences with home infusion therapy, while the third main theme present the digital features proposed to meet the needs of both groups in a future eHealth intervention (Figure 1).

We found that parents and health care professionals largely had corresponding needs for safety in home infusion therapy but that their preferences for digital features in a future eHealth intervention to meet those needs were based on different rationalities. It was vital that everyone felt safe about using home infusion therapy, and they suggested various digital features to meet their needs to have consistent knowledge, problem-solving skills, reassurance that the parents could manage the home infusion therapy and their child’s well-being, maintain their skill level, and share responsibility with more than one parent. They emphasized the need for an eHealth intervention that provides additional communication support to existing care to enhance safety, self-management, and quality of care.

A key finding was how home infusion therapy was linked to the extended responsibility of the parents and health care professionals, the former at home without the presence of a nurse, and that latter in terms of having the professional responsibility without being present in the child’s home. We suggest that this extended responsibility generates specific needs and preferences for the digital features a future eHealth intervention should have.

Parents found their responsibilities manageable and felt greater sense of control when they had adequate information and training, along with access to skilled health care professionals when contacting the hospital without these resources, they felt unsure. Two other studies describing the parents’ experiences of insecurity and fear of overlooking something important when their child received home intravenous therapy suggested improvements to decrease worries, such as enhanced preparation, alignment of expectations, and accessible visually based and text-based information [3,34]. Another study also found that parental management of care for their child after surgery at home felt insecure, for example, they were unable to identify postoperative complications [35]. The information they had received was partially incomplete, and there was a gap in support at home, such as some health care professionals lacking the right knowledge to provide support contacted by parents [35]. Even though the parents in our study had some similar experiences, they were generally satisfied overall but would like to see digital features bolster existing support.

Another aspect of the extended responsibility was the health care professionals’ concerns about their ability to clinically assess the child’s condition and to know how the parent was managing home infusion therapy. These concerns challenged their professionalism and ethics. For them, the setup comprised nursing at a distance, causing them to worry about how to ensure quality of care. They suggested that various digital features could bridge this distance and had to correspond to the parents’ needs. Both parents and health care professionals suggested monitoring, such as sending temperature data to the hospital and notifications to parents to remember tasks. These features would help meet their need for reassurance and increase their sense of safety. One study showed that participants valued notifications as reminders for activities to be carried out at home [36], while another study on designing a home monitoring system for children with a medically complex condition showed how parents preferred to track symptoms to identify early changes in their child’s health that could lead to an appropriate intervention [37]. However, parents in our study also worried that they would feel pressured to provide more monitoring and data than they could manage. As a result, adjusting the amount of monitoring and continuously assessing how parents manage at home is important to avoid increased caregiver stress.

The suggestions parents and HCPs provided in our study are comparable with the study by Nkoy et al [37] on the needs of caregivers for designing a home monitoring system for children with a medically complex condition. The parents wanted a mobile health tool that included features to track symptoms and report their child’s symptoms that was user friendly, in addition to having the ability to report interventions provided at home, have direct access to hospital through text messaging, and real-time sharing of data, not to mention the capacity to upload a photo or video for the health care professionals [37]. Two studies in which parents managed nursing care for children after surgery or born prematurely developed a successful eHealth tablet for the aforementioned reasons [17,38]. The parents were given an eHealth tablet before their child was discharged from a highly specialized department and that allowed them chat, make video calls, send photos, write daily reports, and get feedback from health care professionals, which facilitated early detection of complications. These features provided support and easy access to communication with health care professionals, creating a sense of security that the parents highly appreciated [17,38]. Due to similarities with our study, this suggest that a corresponding eHealth intervention could support the families and health care professionals in our study.

However, the health care professionals were also concerned that digital features might exacerbate the distance between them and the family, which is in line with a study on mobile health clinic appointments on parenteral nutrition at home done through a tablet [39]. Parents and health care professionals were very satisfied with how convenient and easy communication was, but the health care professionals reported that the inability to make accurate clinical assessments using the tablet was a significant challenge [39]. Research also shows that another concern is that telemedicine may depersonalize the patient and clinician relationship due to a lack of in-person interaction [11,40]. These key concerns must be taken into consideration when developing an eHealth intervention and will be explored further in the subsequent studies of the development and evaluation of the intervention in this research project.

Another concern was the reservations health care professionals had regarding workflow and setting, for example, how to organize and assess incoming data and chats at all times of day. Furthermore, organizational issues like maintaining confidentiality had to be considered when doing planned and unplanned video consultations. The study with the eHealth tablet showed that parents felt they had to wait too long to receive answers or feedback from health care professionals at the hospital [17]. Another study reported that clinicians emphasized the importance of having clear guidelines for scheduling and use of telemedicine in pediatric emergency settings [11]. Finally, a systematic review on factors concerning the success and failure of eHealth interventions also showed how workflow caused several barriers to success [41]. Accordingly, it is important to consider the needs of health care professionals, as motivating them to use telehealth can otherwise be challenging [42,43].

The extended responsibility that home infusion therapy entails emphasizes the importance of adjusting information and training, in addition to managing the capacity and needs of the individual child and parents. The parents’ mental resources varied during their child’s treatment, and research shows how parents obtain and act differently regarding health-related information concerning their child [35,44]. Both parents and health care professionals suggested that digital features could support the individualized aspects as the parents could, when necessary, repeat information and training, solve problems, and receive guidance. In addition, the parents and health care professionals in our study were preoccupied with sharing their responsibility with others to avoid distorting the amount of caregiving placed on one parent. Studies show that telemedicine can address these issues, by communication in greater alignment with the parents’ own preferences and pace, not to mention that of families who live far from the hospital and wish to avoid the time and expense transportation and parking [17,38,45].

This study’s strengths include its participatory design, which involved families and health care professionals at the beginning of the development process. The demographics and experiences of the sample of children with acute or long-term illness is also varied, just as both mothers and fathers were included, not to mention children to some extent. The child was invited to participate with their parent, and 13 children were present at the interview, 2 of whom participated actively. However, separate interviews would improve our understanding of the child’s needs since the parent may withhold experiences and opinions due to the child’s presence. Age-specific methods could have been used to involve and interview children, which would have provided additional insights into their unique needs and preferences. Children will be involved and interviewed in the evaluation study of this research project. The study is conducted in a specific geographic and health care setting, which may limit the generalizability of the findings to other countries and settings with different health care systems.

Data were collected during the early phase of the COVID-19 pandemic, and video consultations and other telehealth options were not used at the department on a regular basis at that time. This may have influenced participants’ perceptions of eHealth and impacted the results in the sense that their technology readiness was limited. Since then, the use of telehealth has increased extensively in Denmark and abroad, perhaps causing our findings to appear obvious.

Our study highlights the need parents and health care professionals have for increased safety and easier access to communication when receiving and providing home infusion therapy. Their needs and preferences corresponded with each other, and they suggested key digital features for a pediatric eHealth intervention to provide consistent knowledge, skills, and problem-solving during home infusion therapy. The study emphasizes the need to increase access to home infusion therapy by using digital features, and our findings can provide clarity in terms of developing an eHealth intervention to support pediatric home infusion therapy tailored to individual needs.