The results section presents the response rate to the survey and demographic information on the participants. Data from the survey were mapped to the eight interventions identified in the TASYL transition theory highlighting where the data supports and refutes the theory and if new theoretical elements emerged. For ease of reference, relevant sections and questions in the survey are highlighted when reporting results.
Data were collected from July 2015 to May 2016. Invitations were sent to 411 potentially eligible health and social care professionals in three organisations. There was a 100% organisational response rate. There were 56 individual responses from across the three participating sites indicating a 13.6% individual response rate. Most of the participants (71%) were employed at SickKids, 21% at Holland Bloorview and 5% at Emily’s House. Missing data accounts for the remaining percentage. Just over half (54%) of the total participants worked in both inpatient and outpatient settings. Participants included 22 physicians (39%), 19 nurses (34%), 6 social workers (11%), and 9 others (16%), which included occupational therapists, physical therapists, and therapeutic recreation specialists. In terms of years of experience working with adolescents with life-threatening conditions, 10 (18%) had less than 6 years, 17 (30%) had 6 to 10 years, and 28 (50%) had more than 10 years. One third of participants indicated they had transitioned more than 20 adolescents with life-threatening conditions to adult services over the last 5 years, while 40% indicated that they expected to transition more than 20 adolescents in the next 5 years.
Intervention 1: early start to the transition process
Participants were asked to identify the three most important factors in promoting a successful transition from a list of five options provided with the option of adding a factor to the list (Section C, question 1). 82% stated an ‘early introduction of the transition process to the adolescent/family.’ Recommended improvements in the transition process included a consistent approach to early planning for transition and engaging adult services earlier in the process.
“Consistent early planning for transition.” (Participant #22, Nurse)
Participants reported a mean age of 15.9 years and a range of 12 to 20 years for the start of the transition process and a mean age of 19.2 years and range of 17 to 26 years for completion of the transfer to adult services.
When asked about the rationale for the absence of organised transition services, which would include an early start to the process, a lack of funding and time were outlined.
“Lack of funding and time to develop [transition services].” (Participant #21, Physician)
Intervention 2: effective communication and collaboration to joint working between children’s and adult services
Participants were asked to identify the most commonly used model of transition to adult services from five approaches (Section B, question 5). This question invited participants to rank on a 5 point Likert scale, how seldom (rated 1) to frequently (rated 5) they used five models of transition. The most frequently used approach reported related to the development of good channels of communication and sharing of information between children’s and adult services, with 47% selecting 4 or 5. A range of strategies to promote effective communication between these services were reported to be used such as case conferences, joint clinics between services, and comprehensive referral letters.
“…we connect with the accepting [adult] team to provide extensive verbal and written handover.” (Participant #35, Physician)
“Adult team has a specific transition clinic and teens are seen in that clinic several times before integrating into the regular adult clinic.” (Participant #31, Nurse)
However, despite effective communication between children’s and adult services being the most commonly used model of transition, it was also reported to be a challenge.
“We are not always welcomed by [the] adult clinic.” (Participant #27, Social Worker)
“Adult services are not always open to meetings.” (Participant #30, Nurse)
Another barrier in developing good channels of communication between children’s and adult services related to a lack of time identifying that a joint appointment would be useful in preparing the adolescent/young adult for the transfer to adult services if time was available.
“Joint appointment with family medicine. Challenge though because no time” (Participant #21, Physician)
As well, 29 participants (52%) indicated that one of the most challenging barriers to a successful transition was the lack of an identified health care provider in the adult system who was available to provide care.
“There is no equivalent [expert] in the adult services world..” (Participant #4, Physician)
Intervention 3: orientation of the adolescent/young adult to adult services
Several participants indicated that they used specific strategies such as a transition orientation day jointly organised by the adult and children’s team, to orient the adolescents to adult services (Section B, question 1, qualitiative responses). Further strategies included transition discussions between the service provider and young adult and a tour of the adult centre in advance of the transfer.
“I meet with youth to discuss differences between adult and pediatric services…” (Participant #10, Nurse)
“…ensure that a tour is provided to the adult centre at [the] last visit.” (Participant #26, Nurse)
A challenge reported by 25% of participants related to children’s service providers limited knowledge of adult services, which resulted in not being able to comprehensively orientate adolescents/young adults to the new system (Section C, question 2). There were no reports of adult service providers offering to address orientation deficits for children’s service providers.
“I don't believe I have a good enough understanding of the adult health care system to adequately [counsel] families with skill-building to transition in to this system.” (Participant #23, Nurse)
Intervention 4: the engagement of a transition coordinator
Many participants (55%) indicated that the involvement of a key coordinator in the transition process was a key factor in promoting a successful transition (Section C, question 1). Participants were asked to rank how often a key coordinator was used in the transition process using a 5 point Likert scale with 1 indicating seldom used and 5 indicated frequently used. Only 7 (13%) indicated that they frequently used a key coordinator in the transition process and many (48%) identified a lack of coordinated care as a key barrier to a successful transition. There were concerns expressed regarding which health and social care professional could take responsibility for the transition coordinator role with some participants indicating that a number of professionals were required to support the adolescent/young adult in negotiating the transition process, rather than a single person.
“Not sure who would take this role on. Doctors and nurses [have] no time.” (Participant #21, Physician)
“Due to complexity, usually involves multiple people to manage transition.” (Participant #23, Nurse)
Intervention 5: interdisciplinary and interagency joint working
Threaded throughout many responses was the importance of an interdisciplinary team approach to transition in children’s services within and between departments. The narrative included health and social care professionals working closely with members of different teams with examples provided such as team meetings and summary documentation from all health disciplines when the young adult transfers to adult services.
A number of participants emphasised a team approach to the transition process with 45% of participants indicating that the inclusion of all services and agencies was a key factor in a successful transition (Section C, question 1).
“We have a team of therapists that help with the [transition] process, not one individual is responsible for the whole piece, we all play a role.” (Participant #54, Occupational Therapist)
Intervention 6: developing the adolescent/young adults’ autonomy throughout the transition process
Some participants stated adolescents/young adults were supported to become more responsible for their care. Of those who considered this strategy relevant to the cohort of adolescent/young adults they provided services for, 32% indicated a 4 or 5, on the 5 point Likert scale with 1 being seldom used and 5 being frequently used (Section B, question 5). Strategies to promote autonomy and increase confidence included encouraging the adolescent/young adult to book clinic appointments, supporting them to make decisions regarding their care, questions increasingly being directed towards the adolescent rather than the parent/carer, and the offer of lone consultations to adolescents.
“Encouraged to give graded responsibility to the teenager rather than disempowering or doing everything for them. Allowing [the] teenager to speak and take the lead.” (Participant #11, Physician)
“Mostly we focus on preparing the teen[ager] to take over their healthcare.” (Participant #5 Physician)
“Enhancing their confidence by offering them choices and putting them in a leadership role during every intervention.” (Participant #48, Other Health Professional)
As outlined by one participant, advocacy skills and autonomy were promoted through the use of specific tools:
“MyHealth Passport, 3 Sentence Summary, Alien Test ('If aliens kidnapped your parents tomorrow, how would you get your medications?')” (Participant #2, Physician).
One participant indicated that role-play might be an additional tool to support preparation for transition.
“In my view, our youth are still underprepared for what meets them in the adult world. There ought to be a program designed just for role-play in terms of how to prepare oneself for what lies ahead.” (Participant #48, Other Health Professional)
The role of parents/carers in this process was also recognised by a number of participants in gradually transferring the autonomy from the parent/carer to the adolescent/young adult.
“We strive to help the clients in our program develop strong self-advocacy skills. Parents are part of the process in the sense of helping to facilitate the transfer of responsibility of health care decision making from the parent to the client.” (Participant #55, Physical Therapist)
“Parents are helped/encouraged to relinquish some of their control.” (Participant #5 Physician)
Although the role of promoting the adolescents/young adults’ autonomy involves parents/carers relinquishing some control, one health and social care professional indicated that it can be a challenge for parents/carers.
‘Parents resist it (child becoming autonomous).’ (Participant #47, Nurse)
Intervention 7: service providers demonstrating a person-centred approach to care
As the three organisations in this study were providing services to adolescents under 18 years, it was evident from responses the focus was more on family centred care, rather than person-centred care. There were examples provided on how family centred care is delivered such as family team meetings, family clinical meetings and family health teams and also a focus on educating the family on resources required in the transition process.
“Consistent family clinic meetings to facilitate the [transition] process” (Participant #54 Occupational Therapist)
“Try to educate the family and provide the resources they will need in transition.” (Participant #49, Physical Therapist)
One participant felt adult service providers were not investing in family centred care.
“Limited investment from adult providers to child and family centred care.” (Participant #27 Social Worker)
Intervention 8: involvement of parents/carers
Parents were reported to be very involved in the transition process while the adolescent was in children’s services.
“Parents are always involved in the process through their presence at clinic visits and interactions with paediatric and healthcare professionals. In this way we encourage their awareness of and engagement with the need for transition, especially during the early [stages].” (Participant #5, Physician)
Participants were asked to indicate on a 5 point Likert scale how seldom (rated 1) to frequently (rated 5) they helped the parent/caregiver to acquire skills and support to use adult services effectively (Section B, question 5). Only 5 (9%) of participants frequently used this as an intervention to support the transition process.
One participant highlighted that parents have expressed serious concerns regarding the transition process with some fearing grave outcomes such as their child dying as a result of a poor transition, highlighting the uncertainty of the continuation of services which meet the adolescents/young adults needs, when transferred to adult services.
“Parents worry that [their] child will die because they are transferred.” (Participant #15, Physician)