Inaccessible Possibilities: experiences of using ICT to engage with services among young persons with disabilities

Abstract

Purpose

The use of Information and communications technologies (ICT) in the public sector is widespread and on the increase. There is a need to develop knowledge regarding the end users experiences of using ICT to engage with services. This study aims to provide knowledge regarding young persons with disabilities or chronic disease experience using ICT to engage with health- and social care services.

Materials and methods

Nine young persons between 16 and 25, living with chronic disease or physical disability, participated in this study. The data was collected using semi-structured interviews. The interviews were recorded, transcribed verbatim and analysed using Constructivist Grounded Theory.

Results

Three categories were identified that reflected the young persons’ experiences with using ICT to engage with health and social care services. (1) Navigating in an information overflow, (2) Experiencing disparate dialogues, (3) Utilising the potential of ICT. The young persons experienced that ICT used for engaging with health and social care services did not necessarily fit their need, yet, they saw how ICT had potential to increase engagement with services, especially with an increased focus on dialogue. The findings can be subsumed by the core category Inaccessible Possibilities, illustrating both the potentials and the challenges ICT presented.

Conclusion

The study shows that although young persons are perceived as digitally native, they experienced challenges using ICT to engage with health- and social services. The poor fit of ICT combined with navigation- and accessibility issues, hinder engagement. However, ICT inhabit a potential to increase engagement, especially communication.

IMPLICATIONS FOR REHABILITATION

• Young persons’ experiences show that ICT can be useful for enhancing engagement with health and social care services

• ICT provided by health and social services does not necessarily meet young persons need for dialogue

• An increased focus on accessibility and design is necessary to ensure people with disabilities access to ICT used by health- and social care services

Keywords:

• Young persons
• ICT
• disability
• engagement
• health services

Introduction

Digitalisation has become important for access to public services [1–4]. Digitalisation involves strategies such as using Internet based technology to enable and support healthcare processes for patients. In Norway, services are partly online with the aim to ease access and increase engagement [5,6]. The strategy involves making Public accessible health records (PAEHR’s) increasingly accessible, as well as making information regarding health- and social care services available online.

Information and Communication Technology (ICT) is increasingly utilized to facilitate communication between healthcare providers and patients [7]. Zonneveld et al. [8] broadly define ICT in health as “technologies used to support and deliver healthcare services” (p.1). ICT in health is often also referred to as eHealth [9]. Yet ICT, digitalisation, and eHealth appears to be collective terms encompassing many different tools and strategies. The term eHealth entails everything from online consultations to fall alarms and pacemakers [9]. Egard and Hansson’s [10] term digital objects (p.2) pertain to both software, such as applications and web pages, and the hard objects used to access software, such as smartphones and computers. These digital objects are used to access readily available ICT. Using ICT to engage with services is characterized as normalized practice [9]. It requires the use of readily available digital objects, such as computers and smartphones, to access software such as web-based platforms, web pages and applications. In our study we use the collective term ICT, which encompass normalized technologies embedded in the everyday life of people (smartphones and computers) and in Norwegian health- and social care practice (web pages, platforms, and applications).

Previous research and knowledge

Previous research shows that ICT has many advantages for engagement with health- and social care services. It can be useful for finding information about services and can act as a facilitator to engage with services and professionals [11]. Patients can find it preferable to have digital interactions with professionals, and digital access to records and digital scheduling [4]. Online patient records provide access to electronic health records [12], albeit through various platforms with little or no data transfer between services, and with varying degrees of access depending on where you live [7]. As for young, marginalized persons ICT has been found to have an impact on how they access, engage and navigate healthcare systems, as well as being a positive addition to face-to-face contact [13]. Research has also shown that having a disability can lead to difficulties using ICT and digital exclusion [10,14].

Entering adulthood in a digital age

Using the Internet is an integral part of life for young people, and most of todays’ young persons have good technical skills and access to technology [15–18]. Lindstrøm, Almqvist and Hemmingsson [19] found that computer-based technology was highly prevalent for children with physical disabilities. Mainsah, Steinnes & Teigen [17] concludes that young persons with physical disabilities use Internet and social media extensively, like their non-disabled peers. The same report also shows that young persons’ use several devices, depending on the tasks they are doing. Personal computers are often used at school, and smartphones are often used for accessing social media. Additionally, the report shows that it is common for young people to use several devices simultaneously, seamlessly changing between the devices. Mainsah, Steinnes and Teigen [17] did however, identify that young persons with disabilities can experience challenges accessing ICT, and this was relative to the type of disability and whether there were assistive technologies available to compensate. This is in line with findings from Ali, Alam and Taylor [1], Jones, Morris and Deruyter [20], and Ravneberg and Söderström [21] showing that barriers to using ICT could arise due to accessibility issues and lack of universal accessibility.

At the age of eighteen, young persons’ requiring ongoing support form health- and social services are transferred from children’s services to adult services. Where the paediatric services provide continuity, regularity and familiar faces [22], adult health services are known to be fragmented, harder to access and challenging to navigate [13,23,24]. Many adolescents with disability or chronic conditions are in continual contact with health- and social services and educational services [25]. As services increasingly use ICT to communicate with their users, young persons are expected to use the available ICT provided by different parts of the services. However, we know little about the experience of using this commonly available technology, especially from the perspective of young persons living with chronic illness or disability.

The digital aspect of health care does not come without challenges. According to Andreassen et al. [9], it can eliminate distance, accelerate interaction, and restructure processes of care. However, digitalisation also create new tasks and responsibilities for patients [9]. Mouttham et al. [3] explains how people, systems and technologies form a part of the clinical process of healthcare, making people to people and people to system interactions become of equal importance. As a result of these changed dynamics in interaction, communication and responsibilities, we need to gather more knowledge of how the end users, i.e., the patients, experience using ICT.

This study aims to explore how young persons with disabilities or chronic disease experience the role of normalized and readily available ICT when engaging with health- and social care services. We included social services such as the Norwegian Labour and Welfare Administration (NAV) as the young persons described using these services similarly to health services. In the Norwegian health- and social care system these services tend to overlap. We question the usability and accessibility of the available ICT resources and ask how the young persons’ themselves would prefer to access services using different forms of ICT. Particularly, the study is part of building knowledge of how persons between the ages of 16 and 25 living with a disability or chronic disease utilize ICT provided by services to engage with health- and social care professionals. A prerequisite for this study is the understanding that young persons have an integrated online and offline life, where using ICT influence their relationships with others [17,18,26]. They are viewed as digital natives, used to handling online life and the digital objects required to do so [27]. Because of this, young persons are often categorized as different from adults when it comes to accessing ICT and the Internet [18].

The study’s approach to the field

Three concepts form the approach to the field and how we understand disability, ICT and engagement. Disability is understood as a situational and relative mismatch between the person and environment, encompassing both a medical (individual) and social understanding of disability [28,29]. This relational understanding of disability is necessary to understand how a disability can be disabling in one context but not necessarily in another, depending on the how individuals can manage demands from the environmental context. It allows for moving from the view that disability is a factor present only in the person, to understanding disability as a relational process where persons, environments and objects affect each other, depending on context [29,30].

Science and technology studies (STS) provides a perspective allowing recognition of the role of technology in our daily lives [31]. Latour [32] recognized the importance of acknowledging the role of “non-human things” in interactions (p.72). The mismatch of the relational understanding of disability extends to “non-human things” such as ICT used to engage with professionals or looking for health information online.

Engagement is a process where persons take part in activities that are of value to them [33]. Activities are performed in specific contexts by using objects specific to the activity [33]. Additionally, Barello et al. [34] call for a wider understanding of patient engagement where the role of ICT is acknowledged for the process of engagement.

Materials and methods

Study design

This study applies Constructivist Grounded Theory (CGT) as described by Charmaz [35]. CGT is a qualitative method providing systematic yet flexible guidelines for simultaneous collection and analysis of data. This allows the researcher to pursue aspects that emerge from the data, focus the data collection, and clarify and expand categories [36]. CGT is useful to explicate inherent processes, interactions and doings [35], recognising processes as “temporal sequences in which single events become linked as a part of a lager whole” (p.344). CGT is therefore of high value as a method for this study, exploring processes and interactions with health- and social care services using ICT.

The aim of CGT is to construct substantive theory grounded in the data [35]. Charmaz [35] defines substantial theory as “a theoretical interpretation or explanation of a delimited problem in a particular area” (p.344). This is done through theoretical coding, a process involving identifying emergent categories until theoretical saturation. In this study the area is young people with disabilities’ interactions with health- and social services, developing an understanding of their experiences with this interaction, seeing how the different aspects of engagement are linked, including how they use ICT.

Participants

The nine participants were between 16 and 25-years old, living with a disability or chronic illness in urban or rural areas in Norway. The participants were acquainted with ICT. They used digital platforms for school or university, social media to communicate with family and friends, as well as using web pages to read news and search for information. The participants represent a diversity of disabilities and diseases, like Cerebral Palsy or Chronic Fatigue. Some of the participants had two or more impairments or medical conditions. All participants were individuals with a high level of functioning, and capable of giving consent. Persons with intellectual disabilities, and persons lacking verbal language were not included in the study. Because of small and transparent local conditions, there is a need to be extra careful in protecting the anonymity of the participants, as they may be the only ones in their area with a specific diagnosis or disability (Table 1).

Table 1. Participants.

Participant	Age at time of interview	Functional variation
Una	16	Sensory disability
Lilly	24	Sensory disability
Helena	16	Sensory and mobility disability
Emily	18	Sensory disability
Natalie	24	Sensory disability
Daniel	18	Chronic disease
Justine	16	Mobility disability
Malena	18	Chronic disease
Petra	19	Mobility disability

Additionally, the diagnosis or disability itself was not relevant to the research project, but rather the participants ongoing needs for regular contact with health- and social care services.

Participants were recruited through health care services and interest organisations for young persons with different disabilities and chronic diseases. This was done in collaboration with health care professionals and leaders of interest organisations, respectively. The leaders in the organisations helped adapting the recruitment material to allow for accessibility. An example of this was recruitment information made for the interest organisation for young people with visual impairments. For this specific group the information was a document in pdf-format, using black writing on a white background. The document could be downloaded from their Facebook group and read in detail using screen readers.

Data collection

Data was collected using semi-structured individual interviews. The interviews were conducted by the first author. The participants were asked how they engaged with health- and social care professionals, how they experienced this engagement and what kind of ICT they used in the process. In line with theoretical sampling, the questions were adjusted following the first three interviews, reflecting findings in the previous interviews. Follow-up questions were added to be more sensitive towards aspects that were emerging in the data. An example of such a change was adding questions regarding the language used by health- and social services, looking to learn if jargon and fragmentation of services affected engagement. The interviews varied in length, from 50 min to approximately two hours. The interviews were rich in data, containing descriptions and reflections of actions and processes.

Data analysis

Following each interview, the data was transcribed verbatim by the first author and then initially coded by the three authors using line by line coding as described by Charmaz [35]. All three authors participated in the focussed coding, directing the analysis. By comparing data and initial codes, focussed coding brought on tentative categories. Initially, seven tentative categories were developed. Through the iterative process of examining properties and dimensions of the categories, three categories and one core category was developed. Table 2 provide examples from the coding process.

Table 2. Examples of codes and categories.

Quote	Initial code	Focussed code	Category
Lilly:
Begin in one end, and wind it up from there. That’s a good as I can explain it really.	Starting in one end Wind it up	Experiencing systems as complex	Navigating in an information overflow
Natalie:
But I have added to my medical notes that I am hard of hearing. So, if they, check these notes before they see new patients, and if they, sort of, are conscious of what kind of disabilities… because it is quite invisible.	Filling in relevant information herself Uncertain if notes are checked Uncertain if notes are checked and acknowledged	Volunteering information Expecting acknowledgement Expecting acknowledgement	Experiencing disparate dialogue
Emily:
I don’t misplace my phone, [laughs], but I do misplace letters.”	Won’t misplace mobile Misplace letters	Phone allows for better control	Utilising the potential of ICT

The emerging categories were named Navigating in an information overflow, Experiencing disparate dialogues, and Utilising the potential of ICT. Using gerunds, the process-aspect of the categories are preserved, revealing that using ICT to engage with services is an ongoing and complex process. Carefully explicating the meanings of the categories, we chose to develop a core category. By using words that illustrate the core aspects of our findings we developed the core category Inaccessible possibilities. The three categories will be presented in detail in the results, whereas the core category form the basis for the discussion.

Results

The young persons’ descriptions of using ICT to engage with health- and social care were multifaceted, impacted by incongruous experiences. On one side the young persons experienced web pages and platforms of health- and social services as challenging to navigate and find information in. They described what can be understood as an Information overflow: there was too much information, and the information did not necessarily meet their needs. Another side was Experiencing disparate dialogue, where a lack of opportunities for two-way communication decreased the usefulness of ICT. Web pages and digital platforms were often designed to inform only, not for engaging in communication with services. On the opposite side, Utilising the potential for ICT, the participants described ICT as having clear advantages.

Navigating in an information overflow

The analysis showed that the participants found web pages of public services challenging to navigate leading to difficulties finding relevant and useful information. They appeared to have limited knowledge regarding what digital platforms and online services the different health- and social care services could offer. They only became aware of what was available as they encountered needs for contact with services. Typically, they searched the web for relevant information. However, there was an excess of information available online and different services had their own digital platforms and web pages, making it challenging to find relevant information. This can be labelled as an overflow of information.

Natalie needed to contact the hospital’s audiology department. During the interview she opened her laptop and tried to find the contact information, to show how complicated it was.

I am used to finding them [the audiology dept.] under Ear-nose and throat. Shall we see, but it was that I thought about the last time I was here. If it was here [points to website], oh my god. Yes, there. It was … oh I spent so much time looking for it, [the phone number for the] service information desk.

Natalie was certain the information was there as she had found it before, but had to sift through large amounts of, for her, useless information. Other participants also described this challenge. Websites for health- and social services were full to the brim with information, which in turn made it challenging to find the little nugget of information they needed.

Lilly described how she experienced trying to find relevant information online. She needed assistive technology to get through her education. Aware she had to apply for the assistive technology, she struggled to find her way around the relevant web pages. The different services she was in contact with each provided their own web pages. It was not self-evident to her where to find the information she needed. She stated she had to “Begin in one end, and wind it up from there. That’s a good as I can explain it really”. Lilly’s winding-up consisted of several strategies. She searched the web looking for information, and if she was not successful, she ended up calling potentially relevant services’ service-desks to be pointed in the right direction. She was often directed to look for specific forms to fill in online, and a new search ensued. Despite now knowing what to look for she still found it challenging to navigate among similarly named forms. This winding up took up a lot of time. Not only was it challenging to find the right information, but Lilly also explained that it was tiring for her. Due to her disability, partial blindness, she spent a lot of time looking for the right information online. Additionally, the share abundance of information was overwhelming. It made her, in her own words; “pissed off”. It is a paradox that ICT supposed to make access to and engagement with services better, has the opposite function for participants like Lilly and Natalie.

Experiencing disparate dialogue

The participants described a discrepancy between their expectation of engaging in dialogue with health- and social care professionals and the actual functionalities of the available ICT. Although it was possible to use ICT to contact relevant persons for some of the services, the available ICT did not easily allow for professionals to react and reply promptly and help solving the challenges the young persons had at the time of contact.

Initiating contact by using ICT was often the preferred option for the participants. Yet, for many of the services, phone calls were still how contact was initiated. Several of the participants stated that the way contact had to be initiated with services was less than ideal. Phoning was challenging for several reasons, such as difficulties hearing what the person at the other end of the line said. Another was that using the phone to call was daunting, as exemplified by Emily who jokingly stated she had “telephone anxiety”. Another important issue, highlighted by Helena, was having to call within the opening hours of the service, which also were the same as the school-hours. This forced her to miss classes, especially if she ended up queuing on the phone.

The lack of two-way communication was a problem. Yet, it is important to note that for most of the participants in this study, they did eventually get in touch with the services. They ended up getting help, but it took time and effort. Access to services was a challenge as the lack of direct communication between the services and the young persons delayed the process of getting help. An example of this was experienced by Una. She regularly needed to be in touch with specialist services due to changing needs as she progressed through her education. She spoke of how she attempted making contact directly, for example by sending e-mails to the service, but did not receive help. She had to comply with the system, starting with contacting her teacher at school, who then referred her on. This despite knowing that the only service that could help were specialist services. Una described a lack of approachability and communication she called “having doors on all sides”.

Sometimes the participants could experience frustration regarding how information they volunteered on different platforms went unnoticed or unacknowledged by health care professionals. Natalie had an example of a situation where she had provided information but her expectations of dialogue regarding this information was not met. She criticized the usability of the digital patient accessible platform (PAEHR) helsenorge.no. She had logged on to helsenorge.no to update her medical notes and make a new doctor aware of her hearing disability.

But I have added to my medical notes that I am hard of hearing. So, if they, check these notes before they see new patients, and if they, sort of, are conscious of what kind of disabilities… because this is quite invisible.

As she had a disability that was not visible, she could experience problems communicating and thought it would be wise to share this information to avoid misunderstandings. She was uncertain if this information reached her doctor, and if the doctor found it useful. She questioned the function and purpose of the platform. These findings take us into the next category, describing the potentials the participants experienced for ICT when engaging with health- and social care professionals.

Utilising the potential of ICT

The final category presents findings regarding how young persons experienced the potential of using ICT. Their descriptions and experiences show that there are needs that can be met by an increased or conceivably more consistent use of ICT. All the participants experienced that information regarding appointments often came in the form of a letter from the hospital or was made through phone calls. This was perceived as less ideal than receiving the information through digital channels. The participants reflected on how simple things like SMS-reminders to their smartphones was useful. Justine described how she, thanks to an SMS-notification on her smartphone, had remembered to attend an appointment at her dentist. She had not written the appointment down in her calendar and had forgotten all about it. Emily reflected on how receiving notifications and reminders of appointments on her smartphone made it easier to remember an appointment:

I think it is very nice, because it is easier, I don’t misplace my phone (laughs), but I do misplace letters.

Emily was adamant that for her, the smartphone was a necessary accessory in her life and that she, like many others her age, always carried her smartphone with her. This meant that getting information to the phone, via SMS or notifications on apps, was perceived as highly useful. Notifications was perceived as useful in other areas too. Petra described how an increased use of push-notifications could be useful, especially related to deadlines. She used the example of submitting online activity report cards to the Norwegian Labour and Welfare Administration (NAV). “But still, logging in every fortnight, and if you’re unlucky and forget…” Forgetting to submit report cards would result in not receiving Employment and Support Allowance for that specific period. Keeping track of the dates could be challenging and result in missed deadlines.

Several participants highlighted potential areas for increased use of ICT. They explained how they would prefer to use ICT if it was available and if it suited their needs. Especially those participants who had problems hearing described how the use of online booking of appointment and text messages to confirm appointments was reassuring. Helena said that “I have problems hearing what people say if I don’t see their mouth, and then I think it is difficult to talk over the phone […]”. Natalie explained how she, when using a phone to call to book appointments had to ask for information to be repeated several times. Online booking was preferable as this did not lead to disclosure of her disability.

Two of the participants in this study, had positive experiences of using ICT to engage directly with services. Both Malena and Petra had continual needs for contact with NAV as they were under assessment for long term disability allowance. This process involved regular communication with designated social workers by using an online software called Activity plan. The Activity plan is employed by NAV with persons who are under assessment for work capacity or disability allowance and is accessed by Multi Factor Authentication. The Activity plan allows for online communication with a designated social worker and contains treatment plans, goals related to treatment or work, as well as a chat function and electronic letters to the service recipient. Malena and Petra both reported being satisfied with the Activity plan. For Malena, using the Activity-plan allowed her to be in touch with her social worker at times of the day when she had the most energy.

No, it, it is like this nav.no works perfectly fine for me. Because I sleep until eleven in the morning right, so if people try to call me in the morning before the action starts, right, then I won’t answer the phone because I am asleep.

Due to issues with pain and fatigue, she had an increased need for sleep and found it stressful to get up for phone calls in the morning. Using the Activity plan, she could interact with her social worker at times of the day when she had the energy to do so, and hence felt she provided more consistent information about her situation and health. Another aspect of the success of the Activity plan was not having to keep an eye on the phone all day. Malena accessed her Activity plan using her smartphone. The text she spoke of in the quote was messages from her social worker in the Activity plan message function. “Sometimes I only check the phone once or twice a day. So I think it is best with a text”. Keeping an eye on the phone was stressful, whereas logging on to the Activity plan reading the message (text) from the social worker when she had the energy, provided control over the communication. Petra also preferred having contact with the designated social worker online as she struggled with mobility and pain, hence travelling for meetings could be exhausting.

It’s like a little page, where it says where you have been, what assessments you have coming up, if you have been to the doctors or if you are following a [rehabilitation] programme, if you should be receiving job-support and should be at work practice […] and stuff like that.

Petra’s preferences to using the Activity plan was a result of how the plan provided an overview, and helped her keep track of appointments, case papers and decisions.

Inaccessible possibilities

The three categories are subsumed by the core category of Inaccessible possibilities, illustrating the inherent contradictions of how ICT carry with it great possibilities which are then hindered by different aspects of inaccessibility. The core category reveals a dichotomy in the experiences described by the participants. They reported that engagement could be severely challenged by inaccessibility. Yet ICT inhabited a potential to bridge disabling mismatches between the person and the environment. These findings will now be discussed in reference to appropriateness, navigation, and accessibility.

Discussion

Our findings reveal that engaging with health- and social care services using ICT is a complex process influenced by constraints and possibilities. The constraints are largely caused by inaccessibility, while the possibilities appear to be extensive, if the ICT is accessible and used with consistency, as well as allowing for dialogue. Despite the variety of disabilities affecting their functioning in different ways, the young persons accredited ICT a positive role in the engagement with health- and social care services. The potential ICT carried with it in relation to making engagement easier, such as providing easier ways for booking appointments and allowing for direct communication, increased engagement. This is in line with previous studies, showing that ICT could enhance access to services and provide alternative ways to initiate contact with services [13]. As stated by Way and Redden [18], use of ICT could increase engagement. Our findings support this. ICT clearly have advantages that the young persons highlight as important for their engagement with services. Further, our results supports the suggestion by Barello et al. [34] that ICT have a role in engaging patients. The result of our study identifies a need for recognising the role of ICT for successful engagement. It is worth noticing that ICT, if accessible, could be an important factor in bridging the gap that causes disability between person and system. However, the young persons acknowledged that the ICT-options provided by many services did not sufficiently facilitate engagement with health- and social care services. Although the report by Mainsah, Steinnes and Teigen [17] recognize that the interplay between young persons and digital objects such as smartphones is a natural occurrence, access in itself is not always sufficient to ensure engagement. Using Latour’s [32] approach to question what occurs in processes, it seems ICT may not in every context encompass functions that are seen as relevant for enabling engagement. Hence, inaccessibility of ICT is a complex issue caused by multiple factors. Access to ICT itself is insufficient; appropriateness, navigation and accessibility, must be well constructed to meet the needs of diverse groups of people.

Appropriateness

Our findings illustrate the need for an increased focus on young persons’ engagement with health- and social care services using ICT. Our findings are in line with Way and Redden [18] confirming the importance of the fact that young persons might be experts in using ICT, but they are not experts in how health- and social care services are organized, nor what service to request where. Appropriateness is the perceived fit, relevance or compatibility of an innovation or practice, as experienced by the recipient or user [37,38]. Appropriateness is relevant to discuss when learning about the young persons’ experiences of using ICT for engaging with services. Many of the barriers highlighted in this study related to a poor fit between the personal needs and the possibilities provided by ICT. In this study, young persons were asked to share experiences they had with specific ICT they had used. As a result, the variety of ICT is vast in relation to the software but not in relation to the hardware. The fact that they collectively experienced that software provided by services were difficult to use and that the ICT lacked key functions for engagement such as dialogue, shows a discrepancy between the intended use for ICT and the overall user experience.

As can be seen in our study, the young persons who used the Activity plan provided by NAV, experienced being more engaged with the service. Access to a named person with whom one could engage in dialogue seemed to be an important component for this level of engagement. This is in line with previous studies finding that patients using e-health in rehabilitation processes preferred to have access to digital contact with health professionals [4]. In our study, several of those who did not have access to dialogue expressed missing it. For patients to engage with services through ICT, it is necessary to acknowledge the need for contact with professionals [34]. It is concerning that ICT meant for encouraging engagement and communication does not meet this purpose. A question to be raised is whether services’ need for providing information overshadows the patients’ need for dialogue. If so, the consequence could be that patients view ICT as inappropriate because dialogue cannot be achieved. Our results highlight a continual need to focus on the collaborative aspects of ICT, as problematized by Mouttham et al. [3], by increasing the focus on the people to people relations within ICT.

Navigation

Navigating large amounts of information, scattered across many different platforms and web pages, created another potential barrier for the participants, possibly enhancing the risk of experiencing a poor fit between perceived need and relevance of ICT. The young persons in this study described using web pages to find information. However, they found them challenging to navigate. Our findings support those of Robards et al. [13] showing that complexity, fragmentation and bureaucracy hindered abilities to navigate health systems. It appears that because the different services have individual web pages, the bureaucracy and fragmentation of health- and social care services extends into their ICT. Navigation online was hindered by not knowing where in the system to find the necessary help, as well as handling large amounts of information. Previous research has shown that a significant barrier to navigation was sifting through what was perceived as irrelevant or inconsistent online health information, causing frustration and feelings of being overwhelmed [27]. As seen in our study, the participants found this abundance of information frustrating and a barrier for engagement. Importantly, a recent study has shown that the ability to navigate and using online services is affected by health literacy levels [2]. Although Le et al.’s [2] findings show that most young persons between the age of 18 and 25 scored high on general digital skills, the scores were lower when it came to accessing digital health information. Although the young persons were regularly in touch with services, how contact was gained and with whom, could change from time to time depending on their current need and what ICT solutions the service provided. Consequently, the young persons often had to navigate different parts of the system each time they engaged with services. This possibly added to the complexity of navigating a bureaucratic and fragmented system.

Our findings show that unawareness of ICT provided by the health- and social care services affected the ability to navigate and engage with services. Previous research [13,39] showed that a lack of awareness of services created barriers to access and engagement. Although Brown et al. [39] stated this in relation to services in general, it applies to our study as well: if the young persons are unaware of what is available, barriers are created. As Moll and Rexhepi’s [12] study shows, access to ICT such as PAEHR’s led to patients believing that communication with professionals in the health care system improved. This is also supported by the findings of Wentink et al. [4] showing that patients valued being able to engage digitally.

Accessibility

A final point to address is accessibility. Web Content Accessibility Guidelines (WCAG 2.0) have been developed to make online content more accessible. The guidelines focus on accessibility for a wide range of disabilities, also acknowledging that following the guidelines will make web content more accessible for all [40]. Our results shows that inaccessibility created barriers for engagement. The young persons described several accessibility barriers, across services. This was especially evident for those participants with visual impairments. A recent report by Norwegian Digitalisation Agency [41], shows that several parts of the web pages of NAV did not meet the requirements for accessibility set by the standard of WCAG 2.0. The report shows that lack of accessibility would have consequences for users with disabilities. As can be seen in the results of our study, difficulties accessing services online results in frustration and challenges in engaging and communicating with the services.

The young persons in our study predominantly used web pages but could find them so challenging to use that engagement was affected. This is in line with previous research. Jones et al. [20] showed that accessibility in ICT such as mobile health applications (mhealth) were challenging to some users with disabilities, which in turn could have damaging effects for their health. This shows that being a “digitally native” tech-savvy young person is not enough to compensate for poor accessibility design. Inaccessibility is hindering people with different disabilities to engage with health- and social services, which ultimately could affect their health negatively.

Freeman et al. [27] argue that young persons should be taught how to understand the public systems. Le et al. [2] emphasize that health services need to communicate at the health literacy level of the population it is to serve. Our argument is that the system should be easier to understand, navigate, and access, and less dependent on health literacy levels and understanding of the system. This could be done by providing appropriate and accessible ICT solutions that allows for engagement with services, including dialogue with professionals.

Strength and limitations

It is a strength of this study that the participants, although experiencing a variety of disabilities, from sensory impairments, mobility issues to chronic disease, described similar experiences with ICT. The interviews were carried out in spaces of the participants choice, assuring they felt safe and comfortable. Despite being a small study, the data is rich as the participants appeared interested in sharing their experiences. The study was carried out in a population that have access to a wide range of technologies, as is common in Norway. Although the results cannot be generalized to apply to all young persons living with disabilities, the barriers faced by the young people in this study are probably even larger and more complex for those with disabilities restricting independent use of technology. We acknowledge that the aim of CGT is to develop substantial theory. This paper is part of a larger study, forming a basis for future development of potential theory regarding young persons’ engagement with health- and social care services.

Conclusion

This study shows that using ICT to engage with health- and social care services is a complex process affected by inaccessibility and possibilities. It is necessary to acknowledge that although young persons are digitally native, they are not necessarily acquainted with the framework and logic of health- and social services. Consequently, they find that using ICT to engage with services create barriers. The barriers appear to be created by factors such as a poor fit between the persons needs and the ICT’s different functions, an overflow of information and lack of dialogue. As they are inexperienced handling engagement with services on their own, navigating complex and fragmented systems digitally can be challenging. However, the study shows that the young persons perceive ICT as possible facilitators towards increased engagement with services. Overall, this shows a need for services to adapt ICT to better suit the needs of the end users if the true potential of ICT is to be utilized.

Ethical approval

The research project obtained ethical approval by the Norwegian Centre for Research Data (NSD).

Acknowledgements

The authors are grateful to the young persons who participated in the study for sharing their experiences.

Disclosure statement

No potential conflict of interest was reported by the author(s).