Opinions on rehabilitation care of young adults with transversal upper limb reduction deficiency in their transition to adulthood

2.1 Study design

We conducted a qualitative study consisting of an online focus group with young adults with tULRD and their parents. An asynchronous mode was used in which participants were free to log-in during a period of 4 consecutive days. Additionally, we held a face-to-face focus group with professionals to explore their opinions on current rehabilitation care and their suggestions for improvement. The consolidated criteria for reporting qualitative research (COREQ) were used to ensure transparent reporting [9].

2.2 Participants

Three groups of participants were included: (1) young adults with tULRD, (2) parents of young adults with tULRD and (3) healthcare professionals treating young adults with tULRD. Young adults, aged 15 to 25 years, with unilateral tULRD at the transradial or wrist disarticulation level and internet access were eligible for the study if they were also proficient in Dutch. Exclusion criteria were other congenital limb deficiencies, acquired upper limb amputations, lower limb amputations and comorbidities influencing participation in the study, such as cognitive deficiencies. The young adults with tULRD were recruited from local databases of four rehabilitation centres in the Netherlands with expertise in the rehabilitation care of individuals with upper limb deficiencies. Eligible young adults received an invitation letter to participate. The only eligibility criterion for parents was proficiency in Dutch. Regardless of the willingness of their child to participate, parents could join the study independently and received separate invitation letters. Healthcare professionals with at least one year of experience in treating young adults with tULRD were eligible for participation. Professionals participated during an annual national meeting of rehabilitation expert teams treating people with upper limb deficiencies. These expert teams consisted of rehabilitation physicians, physical and occupational therapists and prosthetists. The medical ethics committee of the Isala clinics in Zwolle (METC) decided that formal approval of the study was not necessary (file number: 16.11190). Participants gave written informed consent before participating.

2.3 Procedure

2.4 Data analysis

For defining an appropriate structure to analyse the data, a coding framework was designed by the researchers. In this framework, themes were formulated according to the study aims (deduction), and new themes that were raised during data analysis were added (induction). There were five stages of data analysis in the framework approach (Fig. 1) [12]. Atlas-Ti (version 8) was used for indexing the data [13].

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3.1 Participants

3.2 Current role and accessibility of rehabilitation care

Young adults contacted the rehabilitation team mainly when they had problems concerning the residual limb, physical complaints due to overuse in their arm, back, neck or if they needed a prosthesis or an adaptive device. Most young adults and parents mentioned that they expected the rehabilitation team to address prevention and treatment of overuse symptoms. Occupational therapists stressed the importance of preventing overuse symptoms by giving ergonomic advice.

“We see people who have complaints about muscle pain but who are not aware that it could be the beginning of overuse symptoms.” (occupational therapist).

Nearly all young adults and parents described the rehabilitation team as being accessible when needed. However, many young adults and parents were unaware of expertise of the rehabilitation team regarding transition domains such as education, job selection or transportation.

“The rehabilitation centre didn’t play any role. I didn’t know that I could ask questions about job selection at the rehabilitation centre.” (young adult, female, 17 years old) “I think the accessibility is good, but people don’t always take time to consider this. Usually, things just happen by themselves.” (parent of a 16-year-old female young adult)

Most young adults and some parents indicated that periodic appointments had little added value for them. The unclear goals and limited benefits of periodic appointments were the main reasons given for no longer visiting the rehabilitation centre. Some parents stated that it was difficult to motivate their child to attend periodic appointments.

“I felt that members of the rehabilitation team thought I needed support, while I did not want it [periodic appointment] myself.” (young adult, female, age 24 years). “I haven’t visited the rehabilitation centre for the past two years. I do not need to go, but my parents think differently about this.” (young adult, female, age 17 years). “We would prefer to have more contact with the rehabilitation centre, for example by e-mail. My son has not had an appointment since his 18th birthday. He did not want me to make an appointment either.” (parent of a 23-year-old male young adult).

Most professionals indicated that topics concerning transition were addressed during periodic appointments and that they experienced difficulties in maintaining contact with these young adults. Various methods for providing relevant care were used by the professionals. Some continued to invite young adults for periodic consultations, while others organized peer meetings or invited them to join specific transition treatment modules. Most young adults and parents contacted the rehabilitation team by phone or by email.

3.3 Suggestions to improve rehabilitation care

4.1 Self determination

Findings from this study were referred to the Self Determination Theory which argues that humans are optimally motivated and experience well-being when they have three basic psychological needs satisfied: the need for competence, the need for relatedness and the need for autonomy [14].

The need for competence can be described as the need to feel a sense of mastery over the environment and to develop new skills [14]. Our participants indicated that they felt a need for information to assist them with selecting jobs and education programs along with obtaining a driver’s license. Need for competence also relates to the finding that young adults mentioned that professionals could play a role in enhancing self-confidence.

Relatedness can be described as the need to feel connected to others [14]. Different methods of communication were mentioned to fulfil this need with professionals as well as share peer stories. According to the young adults, there is a need to gather information about strategies to overcome limitations encountered in selecting an education program or job and obtaining a driver’s license.

Based on the data acquired in the present study, young adults seem to desire to make their own decisions about healthcare. As autonomy is important in this phase of life, self-management skills should be a central part of any transitional program [15]. Therefore, it could be advisable for rehabilitation teams to develop a structure in which information reaches young adults that support and empower them to find solutions to their perceived limitations. Gaining access to the right information and sharing experiences may support young adults to gain more insight into their own situation, enhance autonomy and improve participation [16].

4.2 Consultation and communication

Using the internet was mentioned by young adults in this study as an option for gaining reliable information on demand. Online health communities are internet-based platforms for specific groups of patients [17]. Based on their accessibility, they can be classified as open access, closed access, or personal health communities [18].

An open access community consists of online information that is accessible to anyone [18], such as a website that could be used by young adults reading general information and peer stories as mentioned in this study. Sharing information in this way has the advantage of reaching a broad population, such as other young adults with a rare condition, their parents, teachers or employers and young adults who do not visit a rehabilitation centre or patient support organization. A drawback of open access systems is that personal information should not or cannot be shared due to safety issues and privacy regulations.

A closed access community is accessible only by members [18]. Communication and collaboration between a group of professionals and patients can be accomplished in this way, for example, by joining a patient support organization. Visible collaboration between professionals and patient support organizations, as well as exchanging information between those groups, was suggested to improve rehabilitation care by young adults and parents in this study. A closed access online health community could fulfil this need. Disadvantages of this type of community include inaccessibility for non-members and the need for a host to ensure the continuation of the closed access system in terms of content and financing.

Personal health communities give members the option of storing their private medical information at a central location and also allow communication between invited members [18]. Such a community is personalized and has more security; the patient is the owner of this system. Personal health communities were not mentioned in our study, probably due to a lack of knowledge by young adults and their parents about such systems.

Developing an online program, with open or closed accessibility, could actively empower young adults in their healthcare process and address their individual needs [18]. In contrast to most young adults and parents, professionals suggested using apps on mobile phones to improve the accessibility of care. Although apps are being used frequently nowadays, this was not mentioned as a preferred way of communication by the young adults in our study. It might be that a synchronous online focus group or face-to-face focus group discussion for the young adults might have facilitated more conversations about this idea.

A previous study reported that patients preferably received information by e-mail or websites, rather than by social media, because the participants were more confident using those platforms [19]. This may also apply to participants in our study and may explain why they did not mention apps as an option. Additionally, social determinants such as lack of a computer in the home or poor internet access may pose barriers for some individuals in using this technology.

4.3 Organization of rehabilitation care

If rehabilitation care for young adults with tULRD were improved by offering dedicated information on demand and by enhancing autonomy, the work processes of rehabilitation professionals would require adaptation to modern communication technologies. The use of such tools requires digital security measures, which entail additional costs [18]. To improve and modernize rehabilitation care, options to reimburse finances for more types of e-health activities should be discussed with health insurers in the future.

An important finding of our study was that regular appointments at the rehabilitation centre were often not valued by the young adults due to the lack of perceived benefits.

Young adults suggested that appointments should be made on demand to enhance the perceived benefit. Enhancing benefits and motivation, as part of the self-determination theory, could possibly be achieved by assessing meaningful goals for young adults in an early stage of rehabilitation treatment, for example by regular administration of the Canadian Occupational Performance Measure [20] or similar tools or checklists. To modernize rehabilitation care, rehabilitation teams should revise the structure of regular appointments or be more clear about the content, aims, and possible benefits of these appointments.

Furthermore, dedicated training programs could be offered to overcome limitations in work-related skills or to enhance self-confidence. When obtaining a driver’s license, it was striking that many different regulations were applied and various experiences were shared while all young adults had a comparable level of deficiency and all were tested by the national Central Agency of Driving skills before they started their driving lessons. Equalizing rules and regulations for driving with a physical disability needs more attention from governmental organizations.

4.4 Strengths and limitations

Young adults, aged 15 to 25 years, with tULRD at the transradial or wrist disarticulation level were included to provide a homogenous study population regarding level of deficiency. These participants were heading towards transition, were currently in the process of transition or had already gone through transition. Our participants were in different stages of transition, which gave a broad view in experiences and ideas. However, this might have also influenced the responses, since a number of participants already passed the transitional phase and may have answered from a different perspective. For future research, we would recommend stratifying participation by transitional stage, preferably in a larger sample size. Including participants from four rehabilitation centres ensured that the range of current practices in the Netherlands were taken into account.

Rehabilitation centers in the Netherlands may differ in the specific type of care they provide to these young adults, possibly limiting generalization which can be seen as a limitation of the study. However, the opinions of the young adults concerning the different rehabilitation centres seemed to be rather similar, so our multi-centre approach likely influenced the results in a positive way and increased the external validity.

Our present study included only young adults who actually visited the rehabilitation centre, which may have provided skewed results. Young adults with tULRD who have never visited a rehabilitation team may not experience any limitations or may have solved problems autonomously by finding information and applying problem-strategies themselves.

An aspect that needs attention in conducting an online focus study within the asynchronous mode is the absence of real-time discussion, as in a face-to-face focus group [21]. Less interaction between participants may have resulted in less detailed information. On the other hand, it could be that the anonymity of an online focus group compared to a face-to-face focus group created more openness in answering the questions. To support constructive discussions and to optimize the results, two moderators were constantly online during the opening times of the forums.

Professionals joined a face-to-face focus group instead of an online focus group. We took the opportunity to include a broad selection of professionals from a national meeting on the topic of working with these young adults. The format of the online focus group study could have led to a lower number of participating professionals with this expertise, since the preferred number of participants of a focus group is limited and it would have required more time investment of each individual.

We used the framework approach to gain transparency in creating the set of outcomes and used the COREQ criteria to present the methodology transparently [9]. Concerning the COREQ criteria, we cannot provide information on reasons for non-participation. We do not know why young adults did not respond to invitation letters or if they would have had other needs and suggestions.

The results of this study are not directly applicable to other patient populations in the transition phase. This is because young adults with tULRD have a low demand for healthcare and may have other needs and suggestions compared to young adults with a higher demand for healthcare. At the same time, the study suggests low demand for healthcare might be due to a lack of understanding of the scope of rehabilitation care services in the transition phase and professionals may not fully engage the young adults. This could cause underestimation of the need for healthcare by these young adults as well as that of young adults with other diagnoses in transition phase.

Finally, the rehabilitation service for our participants is based on the Dutch healthcare system and the results of this study cannot be directly generalized to other countries.