Abstract
Background
Young adults with childhood-onset disabilities experience challenges with accessing age appropriate primary health care services as they transition from pediatric to adult health care services. They often experience a negative impact on their health with associated long-term health and social concerns, disease complications and increased use of emergency services once transitioned to adult services. This is particularly challenging for youth with cerebral palsy (CP) due the complexity of their medical needs. The aim of this study was to explore experiences with accessing or providing primary care services for transitioned-aged young adults with CP from young adult, parent, pediatrician and primary care physician perspectives.
Methods
A qualitative descriptive design was conducted to identify the challenges and facilitators for transitioned aged young adults with accessing primary, adult care services. Semi-structured interviews were conducted with 16 participants within the circle of care (4 adults with CP, 4 parents, 4 pediatricians and 4 primary healthcare physicians) for individuals with CP in Toronto, Canada. Interviews were audio-recorded and transcribed verbatim. Qualitative analysis guided both the data collection and the data analysis processes.
Results
Data analysis revealed that all participant groups reported transition challenges with respect to accessibility, the suitability of some primary care environments for caring for individuals with complex care needs, gaps in seamless care, and limited time and funding when receiving or providing primary care services to young adults with CP.
Discussion
There is a greater demand for adult healthcare providers now to deliver services for adults with childhood onset disabilities. Transition-aged young adults with CP and complex medical needs have increased challenges with accessing primary care services. Considering the following would improve primary care services transition for this population with complex medical needs: ongoing partnering between pediatric and adult health care streams to promote seamless care; connection to team-based primary care services where family physicians, subspecialties and interprofessional practitioners work together to provide joint care planning; salary compensation for increased service needs due to medical complexity; accessible sites; and development of guidelines for transitioning youth/young adults with complex care needs.
Introduction
Health care advances have resulted in an increased life expectancy of individuals with childhood-onset chronic conditions [1], [2]. The continual improvement in health outcomes for children with disabilities, such as cerebral palsy (CP), has yielded a transitional period from pediatric to adult care. As a result, there is a greater demand for adult health care providers to deliver services for chronic disabilities that have historically been limited to childhood [2]. The transfer of care typically occurs at 18 years of age for the general population, youth with complex care needs undergo a broader transition process between the ages of 12 and 25 years with interplay between pediatric services and adult care [3].
CP describes a continuum of conditions related to movement, posture, and coordination [4] and may be associated with cognitive impairment and seizures [5]. Children with CP receive coordinated, interprofessional care from pediatricians and other health specialists to meet their needs. As they approach adulthood, the transition trajectory from pediatrics to adult care can be characterized by poor continuity of care with gaps in primary care services [6], [7] a decline in health when adult services commence, and an increased use of emergency services [8], [9]. This is particularly concerning given that longitudinal studies have shown that age-related changes occur at an accelerated rate in this population [10], and in many cases, the severity of disability begins to rise in adults during their late 20s and early 30s [11]. Furthermore, young adults and their families may experience emotional stress while they transition [12], [13].
Several studies have been conducted focusing on aspects of the transition from pediatric to adult health care services in young adults with childhood chronic conditions [1], [7], [12], [13], [14], [15], [16], [17], [18], [19], [20], [21], [22]. In the quantitative literature, studies have primarily collected survey data from the perspective of one stakeholder such as family physicians [19], youth [14], [18], and parents [16], [17], and one longitudinal study surveyed youth-parent dyads [13]. In the qualitative literature, studies have taken single- and dual-perspectives to understand the transition process through observation of youth [7], [12], adult physicians [21], multiple health care providers [1], and youth-parent dyads [22]. In two qualitative studies, multiple health care professionals were interviewed as well as families; one of these studies conducted focus groups with young adults, family members, and health care providers to examine the barriers and facilitators of transition for a sample of young adults with several diagnoses [20], while the second conducted in-depth interviews with young adults, parents, and pediatric health care providers to explore the influence of social and spatial aspects of the transition [15]. Within this body of literature, only two qualitative studies focused exclusively on youth with CP [1], [7]. While several studies have been conducted in the context of child-onset disability, very few have obtained an in-depth perspective of all stakeholders’ experiences including both pediatric and adult physicians and with varying degrees of experience over the transition for adults with CP.
The transition period is influenced by the level of family/social support, availability of effective community resources and interested, knowledgeable primary care providers [5]. The overall aim of this study was to gain a multi-perspective, in-depth understanding of the experiences of young adults with CP, parents, pediatricians and family physicians regarding the transition from a pediatric care to the adult primary care setting for transition-aged youth with CP. The goal was to highlight the salient aspects of the transition and to elicit the elements that were important to young adults and physicians throughout the transition trajectory, and particularly for those young adults who had the highest care needs on the CP continuum. In this study, we focused on the transfer of physician care as the primary care medical provider and the first access point to necessary health services.
Methods
Study design
This study implemented a qualitative descriptive design [23] to allow for an in-depth exploration of the perspectives of young adults with CP, parents, pediatricians and family physicians within the transition trajectory from a pediatric to adult care. A qualitative descriptive design draws from the principles of naturalistic inquiry that of studying experiences as close as possible to their natural state [23]. This methodological approach allows participants to share their experiences using their own words, permits a comprehensive appreciation of a health care phenomenon [23] and thus, is appropriate for this study because of the multi-perspective nature of this complex transition process.
Sampling and setting
Participants were recruited from November 2015 to February 2017 utilizing a purposeful sampling strategy with the aim of recruiting 16 participants with a variety of perspectives and experiences with transitioning primary care services [24]. Young adult and parent participants were purposefully selected based on the following criteria: young adults with CP Gross Motor Function Classification System (GMFCS) IV/V, aged 18–30 years who had initiated or recently completed a transition to a family physician. GMFCS is a descriptive five level severity scale classifying gross motor functioning for individuals with CP. Level IV and V indicate the most limited gross motor abilities with the need for assistive devices such as power/manual wheelchairs [25]. Pediatricians who provided primary care to individuals with CP were eligible and family physicians with or without experience providing primary care services to individuals with CP were eligible.
Young adults and parent participants were recruited through flyers posted at a local adult rehabilitation centre, via local CP parent monthly meetings and on a provincial CP website. All young adults and parents in this study received rehabilitation services at the largest pediatric rehabilitation hospital in Canada. The hospital is located in an urban center in the most densely populated area within the province of Ontario. Approximately 8300 children with disabilities receive inpatient and outpatient care, with over 54,000 outpatient visits annually [26]. Pediatrician participants were recruited from a group of pediatricians who provide community support to clients (with CP GMFCS IV to V), who were also receiving services at the local rehabilitation centre. Family physician participants were identified via a review of a public list of family physicians in the Greater Toronto Area, through networks of family physicians associated with two nearby adult health services as well as through regional/provincial physician-based committees. Snowball sampling was also utilized for the recruitment of family physicians, whereby physicians referred other physicians with varying levels of expertise in caring for individuals with CP [27]. Participants provided written consent prior to their study participation. Ethics approval was obtained from the institute’s ethics review board prior to study commencement.
Data collection procedures
A research assistant trained and experienced in qualitative interviewing conducted one interview with each participant using a semi-structured interview guide that was developed by the research team for the purpose of this study. Young Adult participants were asked to report their experience with the transition and the physician care that they had accessed. Individuals who had not yet completed their transition from pediatric care were asked to describe their intended care path trajectory. Individuals who had already transitioned fully to adult care were asked to describe their experience as well as the supports and resources they used for their transition. Parent participants were asked to provide information about the physician care that they have accessed for their young adult with CP. They were asked to describe their experience with transitioning their young adult from pediatric to family medicine and to reflect on factors that affected the transition. Physician participants received a fictional case scenario (Figure 1) by email/fax 1 week prior to the scheduled interview to allow time for care considerations of the case in advance. Physicians were asked to reflect on this case at the time of their interview to provide context on the care needed for youth/young adults with CP. Pediatricians were asked to describe their experience in transitioning young adults with CP from their care environment into the adult family medicine context, and to consider factors they perceived to support/hinder the transition process. Family Physicians were asked to provide information about their practice, to describe their experience (if any) in providing care to adults with CP and describe factors to consider when accepting young adults with CP into their practice setting.
Case description.
The length of each interview was determined by each participant and lasted between 10 and 50 min in duration. Interviews were conducted face-to-face in the local rehabilitation hospital setting or by telephone. The interviews were audio taped. Data were transcribed verbatim, de-identified to ensure the privacy and confidentiality of participants and the transcripts were verified and then analyzed with the assistance of qualitative analysis software (NVivo 10). Demographic questions were completed at the start of each interview for all participants. All participants received a $50.00 gift voucher at the completion of the interview.
Data analysis
Content analysis [28] was used to identify key concepts, cluster key concepts into categories, and to revisit these categories to refine them. Content analysis allows for the construction of categories containing data that represent similar meanings to provide insight into the phenomenon of interest [28].
Based on the analysis methods, study investigators independently reviewed all of the transcripts and highlighted emerging codes [28]. The research team discussed early codes to ensure that emerging ideas were consistent across the team members and to assist with highlighting codes and potential categories for each subgroup. General categories within each of the four groups of participants were first elucidated. The method was used to refine categories while engaging in a coding process that incorporated initial open coding and later more focused coding. We examined similarities and differences between the four participant groups, using a cross-group analysis procedure [29]. An audit trail was maintained to document methodological decisions and contextual notes [30]. Trustworthiness was enhanced through investigator triangulation [31] such that the research team possesses a range of knowledge regarding CP, healthcare transition services, service delivery and qualitative inquiry and analysis. We engaged in a process of member checking by presenting the preliminary categories back to the original interviewed primary care physicians, along with a feedback form asking them to confirm the accuracy or trustworthiness of the themes based on their clinical experience [32].
Results
In total, 16 participants participated in the study: 4 young adults; 4 parents; 4 pediatricians and 4 family physicians. There was one youth-parent dyad, thus a total of 7 young adults are represented in our sample. Demographic data for the young adults (n = 7) are summarized in Table 1. The median age of the young adults was 20 years. Five of the young adults were classified with GMFCS IV and two were GMFCS V. At the time of the interview, 2 young adults were cared for by a pediatrician (Young Adult [YA] 4, Parent [P] 2); and four were cared for by a dedicated family physician (YA1, YA2, YA3, P1). Two reported using a combination of ambulatory care services, walk-in clinics and Emergency Department (P1, P3), and two were on a waitlist for a family physician or a Family Health Team (FHT) (P2, P3). One young adult participant was receiving care from a FHT at the time of the interview. In Ontario, FHTs are primary health care organizations that include an interdisciplinary medical team (family physicians, nurse practitioners, social workers, etc.) working collaboratively to provide primary health care in their community [33]. The transition trajectory started from 16 to 21 years of age and lasted 2–4 years.
Characteristics of young adults with cerebral palsy.
| Young adult | Interviewee | GMFCS levela | Age of young adult | Gender of young adult | Age when transition initiated | Transition to adult care complete | Type of physician services utilized at interview time |
|---|---|---|---|---|---|---|---|
| 1 | Young adult 1 (YA1) | IV | 21 | Male | 19 | Yes | Family physician only |
| 2 | Young adult 2 (YA2) | IV | 21 | Female | 18 | Yes | Family health teamb |
| 3 | Young adult 3 (YA3) | IV | 23 | Female | 18 | Yes | Family physician only |
| 4 | Young adult 4 (YA4) Parent 4 (P4) | V | 19 | Male | 21 | No | Pediatrician only |
| 5 | Parent 1 (P1) | V | 26 | Female | 20 | Yes | Family physician, walk-in clinic, home physician service |
| 6 | Parent 2 (P2) | IV | 18 | Male | 16 | No | Pediatrician only, waitlist for family physician |
| 7 | Parent 3 (P3) | IV | 18 | Male | 17 | Yes | Walk-in clinic, ED, waitlist for family physician |
aGMFCS, Gross Motor Function Classification System for cerebral palsy. bFamily health team: primary health care organizations that include a team of family physicians, nurse practitioners, registered nurses, social workers, dietitians, and other professionals who work together to provide primary health care for their community.
The characteristics of physicians are summarized in Table 2. The pediatrician (PED) participants worked in private practice settings (n = 3) and/or hospital setting (n = 1). The family physician (FP) participants worked in private practice (n = 2), a FHT (n = 1), and a Community Health Centre (CHC) (n = 1). CHCs in Canada are non-for-profit organizations providing primary healthcare and health promotion programs for individuals within heightened communities [34]. Two FPs who worked in private practice reported that they were “completely prepared to care for individuals with CP”, whereas those FPs in CHCs and FHTs were moderately and not at all prepared, respectively. All 4 PEDs reported “complete preparedness”.
Characteristics of physicians.
| Physician | Practice setting | Formal disability training (Y/N) | Experience in caring for youth with physical disability | Self-reported readiness to care for patients with CP (Likert) | Practice experience |
|---|---|---|---|---|---|
| PED1 | Private | No | Yes | Completely | 30 years |
| PED2 | Private | Yes | Yes | Completely | 34 years |
| PED3 | Hospital | No | Yes | Completely | 14 years |
| PED4 | Private | No | Yes | Completely | 16 years |
| FP1 | FHT | No | Yes | Not at all | 33 years |
| FP2 | CHC | No | Yes | Moderately | 4 years |
| FP3 | Private | Yes | Yes | Completely | 5 years |
| FP4 | Private | Yes | Yes | Completely | 32 years |
PED, pediatrician; FP, family physician; FHT, family health team; CHC, community health centre.
Participant narratives provided context-rich data regarding the experiences parents and young adults had with accessing and attempting to access primary care services and physician experiences with transitioning and/or providing care to and for young adults with complex medical needs. Aspects of the environment that were essential to facilitating the transition and challenges that were confronted during the provision and receipt of services across these care settings were described. Additionally, parents and physicians provided recommendations for what they believed young adults with CP needed to maintain consistent, quality care, improve experience outcomes, and assist with a seamless care transition from pediatric to adult care.
Four main categories emerged from the data analysis and described how participants perceived and experienced the transition trajectory. Below, these categories are described and quotations from all participant groups are provided to illustrate and validate the meaning of each category.
Category 1: physical space of care environment
This category represents the physical space of the health care environment in terms of navigating the clinic space and accommodating young adults with physical disabilities during appointments. Specifically, physical barriers that exist when caring for individuals CP who require mobility devices, assistance with transfers, and accessible office/clinic areas were described by participants.
Both physician groups highlighted how the use of mobility devices (wheelchairs) posed potential spatial challenges in providing care within their practice setting. Two of the family physicians reported that their private practice setting was not able to accommodate an individual with a physical disability. One of them reported the need for specialized space for physical accommodation and accessibility, which his office did not have:
“You certainly have to accommodate the likelihood of a physical disability on an ongoing basis, which means you need not only wheelchair access but automatically opening doors. You need probably several wheelchair accessible washrooms”. (FP1)
“Examination rooms may require special equipment, and allow patient flow to accommodate a much more complex interaction”. (FP2)
Parents also reported that the physical layout of the physician offices were not accessible. One parent explained how this lack of accessibility was a factor in determining how often her son was seen by the family physician:
“The doctor’s office is not wheelchair accessible and the doctor is not willing to put in the ramp. So, he [her son] hasn’t seen his doctor for a while”. (P2)
In addition, parents described the lack of accessibility of the assessment rooms within the primary care setting. One parent explained how her daughter’s family physician was unable to complete a full assessment due to a lack of appropriate space and equipment:
“We cannot get [her daughter] out of her chair onto an examination table so [family physician] is limited in what she can check… but she can do the basic exam. She checks her vitals and she can sort of check her spasticity… like anything in the chair, she’s able to check”. (P1)
Furthermore, this parent described her telephone conversation with the receptionist when she was first searching for the appropriate family physician environment for her daughter:
“They [receptionist] said that they do… that was their specialty – that they saw adults with disabilities and they said that they were fully accessible and they said that they had a ceiling track lift and the proper table for the examination room and I was all excited. I thought this is the place. Right? … .They did have a ceiling track lift and a table however nobody knew how to work it”. (P1)
One young adult reported improved wheelchair access with her family physician in a FHT environment compared to her pediatrician’s office and she explained how it increased her independence when accessing services:
“A good thing with the [family physician setting] is that it’s like accessible. So I can go there like on my own and not with my parents”. (YA2)
Category 2: continual access to necessary health care services
This category represents the level of experience of pediatricians and family physicians had with caring for individuals with CP; including having the knowledge of the health care services that exist within the adult context that are required to provide appropriate care to adults with CP. All four pediatricians discussed that they were willing to care for their patients past the age of 18 to promote a successful transition into adult care, without gaps in care. All of the parents and young adults reported that they vacillated between pediatric and adult services and that the transition was not an absolute process.
The pediatricians discussed how it was challenging to find family physicians who were willing to accept young adults with complex care needs; one stated:
“There’s a shortage of family doctors who are willing to take on these patients”. (PED2)
In addition, pediatricians expressed their lack of established connections to adult care, specifically services for consultation, as they continued to care for young adults over the transition trajectory. For example, one pediatrician explained the challenge when he continues to care for young adults:
“Where I find it uncomfortable is when they need access to the adult services for medical issues… it’s just that I’m just not as familiar with the adult services”. (PED4)
Both physician groups discussed their concern regarding their lack of connectedness to necessary adult medical services for adults with complex disabilities. This lack of relationship made it difficult for them to help their patients to access and navigate necessary adult health care services. Pediatricians reported that they were concerned about their lack of connection with adult based specialty health services (e.g. specialists, rehabilitation services, equipment, etc.). Furthermore, pediatricians explained that family physicians did not have a coordinated model of care that involved an interprofessional team\one-site care, a model that exists in many pediatric settings. One pediatrician stated:
“It’s very difficult for a primary care physician who is in practice on their own to be able to provide all that care. If there was a nice connection to resources in the community, that would be even better. So you know… they say they know this practice cares for individuals who have additional needs. They are linked up with specific programs so that everything can be put in place. I think that would be ideal”. (PED3)
Similarly, family physicians reported the same concerns. One family physician talked about the multiple aspects of the services required by individuals with CP and that having an interprofessional team that would work together to provide care would be necessary:
“I would definitely want to have some kind of assistance with certain things like either an occupational therapist or somebody whom is better able than I am to interact with on-going things like at home and needs for ankle or foot orthotics and that sort of thing. I’m not super comfortable with that aspect of it. I wouldn’t be comfortable if I was working on my own but because I have the support of an OT and social worker, you know people who can help me navigate through, I would be comfortable with that. So basically having more [FHTs]”. (FP2)
Two family physicians who had experience working in group homes (FP3, FP4) expressed more comfort with the care of individuals with CP. Group homes are residential living arrangements funded by the government in Ontario, that support individuals with developmental disabilities and special care requirements [35].
One family physician stated:
“So I did some extra training in working with adults with disabilities. So during my year of extra training I managed a couple of group homes. I was the primary care doctor. So a lot of people had cerebral palsy there”. (FP3)
Another stated:
“Actually most of them (previous clients with CP) were the ones in the group home. This was a practice that I worked at from 1997 until 2006 and then I do locums for different doctors so I would… go to their offices. And there was a second practice where I did a locum for just a 2 month period where again the doctors had an arrangement with a local group home with adults with disabilities. So I had a quite a number of them that had significant cerebral palsy that were cared for by caregivers”. (FP4)
Young adult participants expressed their hope that they have a care provider who had knowledge and expertise in CP care. They reported the characteristics that they believed to be important in their new family physician. One young adult who had transitioned to a FMT stated:
“Because they need to understand that cerebral palsy affects our type of movement and patterns … I guess. And when they are examining us, they need to understand the impact of muscle tone and tightness because if they are examining in the wrong way… like… something could happen to us”. (YA2)
Another stated:
“I would show them knowledge and sort of help them understand what it’s like to have someone living with cerebral palsy and how to care for them better. In terms of what our needs are and stuff like that”. (YA1)
Category 3: essential cooperation and communication to facilitate transition
The seven young adults all utilized a combination of pediatric and adult based health care services over the trajectory. All participants’ narratives indicated that the most successful transitional period evolves over time and consists of ongoing communication between the pediatrician and the family physician as the transfer of care occurred. Furthermore, cooperation between the pediatrician and family physician was described as being an essential element of the transition; the importance of this was explained by a family physician:
“I also think that this is something that a primary care or a family doctor would start very early in the process of caring for the patient. So while they are still in the pediatric system and they have all their specialists and whatnot they’re starting to see their family doctor even episodically or for an annual check-up. So that the family doctor is more familiar with them and it helps to start to collect information before that hard cutoff limit when they are too old for all the pediatric stuff”. (FP3)
Parents also reported that a successful transition process required time and they appreciated when they were given time and flexibility. For example, one parent stated:
“The [Pediatrician] was very nice and said: ‘you don’t have to rush’ ”. (P1)
Young adults and parents explained that the new physician taking over their care had to be the “right fit”. Parents reported that they were cautious and that choosing a family physician was a process that took careful consideration. One parent expressed this:
“Not sure that I would be comfortable transitioning to just any ‘old’ family doctor”. (P1)
Pediatricians described the experience of the initial contact at the beginning of the trajectory while finding an appropriate family physician. Specifically, they reported that they initially communicated with the potential family physician to ensure information was received thoroughly. One pediatrician explained:
“Actually 100% of the time I will call the [family] physician and say: Here is this kid, here are the aspects that the parents have taken on”. (PED4)
Another pediatrician explained generally how he maintains contact with the family as the transition begins:
“Some of the initial meetings [with family physicians] are just to make sure that it is a good fit and then they [family] can always come back and talk to me about what their experience was meeting that particular doctor”. (PED3)
Three family physicians explained how the communication, coordination and overlap between the pediatrician/specialists and the family physician are essential during the transition:
“At least connect with the family doctor, start having visits there; start transferring information and you can even have some period where simultaneously you’re seeing still your pediatrician… then fully transition to the family doctor”. (FP3)
“I think it’s very important to have very good transition communication in terms of what their health history is. Because often times we have a very limited summary of their own previous health history. So things like surgery, long-term hospital stays, treatment plans and that sort of thing. But also what I find really helpful again especially from a specialized practices like ‘X’ would be to get sort of a prediction or… prognosis of what is expected for their health conditions. Recommendations for how often they should get certain types of assessments or reassessments can be really helpful for us because especially somebody with limited knowledge or experience like I do”. (FP2)
“If I ever had an issue or question I could always call the doctor [pediatrician] and he/she would call me back. So it was very much a back and forth, close contact, we were part of the team and they respected our role and we didn’t worry about to have access to them when we needed their expertise. A key factor was the consultation notes – if they had specific follow-up info – i.e. do this lab test every 4 weeks, see the child weekly and measure weight/BP etc., order this test regularly or if this symptom occurs consider ordering this test.” (FP4)
Category 4: time requirements to meet complex care needs
All participants reported that the time requirements of appointments for adults with CP are demanding for family physicians. The young adults and parents discussed the importance of family physicians having enough time during their appointments to meet their needs. One young adult stated that the most important aspect to him about his new family physician was to
“Have enough time to answer any questions”. (YA1)
The pediatricians and family physicians discussed that they were concerned about the family physicians having enough time to address the complex care needs. One pediatrician stated:
“It’s very difficult for a primary care physician who is in practice on their own to be able to provide all that care… It’s really a lot of time and it’s very resource intensive to coordinate that care”. (PED3)
One family physician compared the need requirements for a patient with CP to patients without:
“This would be probably the equivalent of two or three patients to take on… two or three average patients”. (FP1)
Pediatricians, family physicians and parents reported that they believed that family physicians should be compensated financially for the increased time required to care for this group of young adults. One family physician stated:
“I’m paid by salary so I can take the time I need to see a patient, but for doctors who are paid in a fee for service way, they would need to have a funding model that allows them to bill all differently. The time to do an adequate visit – but also they need to be remunerated for it. There has to be something in the payment system that allows doctors to take the extra time they need to spend with patients [with CP]”. (FP3)
Similarly, one parent stated:
“From a financial perspective they’re not making any more money if they see someone without a disability vs. a person with a disability. So what’s the motivation for them to take a disabled person? Perhaps they need to pay them a little more if they’re seeing someone with a disability because they’re using up more time”. (P1)
Discussion
This qualitative study describes the experience of transition from pediatric to adult care health services from the perspective of young adults with CP GMFCS levels IV and V, parents, pediatricians, and family physicians. Four categories are identified from the data and each category represents narratives from all participant groups. Herein, we compare our results to studies conducted with young adults with CP as well as other childhood onset chronic conditions.
The spatial environment and physical access of the care environment was identified as an important element. The physical layouts of clinics were perceived as either a barrier or a facilitator to the transition process. Care spaces that were not designed to accommodate the needs of adults with disabilities were viewed as a barrier, whereas clinics that enabled accessibility and independence were viewed as facilitating. Similar findings have been reported in the literature. Morrison (2008) conducted focus groups with family physicians and adults with physical disabilities identified several barriers to primary care including poor physical access to clinics and inadequate equipment to facilitate exams [36]. Furthermore, family physicians that had appropriate equipment (an adjustable examination table) reported lack of additional staff or a transfer mechanism for adults with physical disabilities [37]. In another qualitative study with adults with spina bifida and muscular dystrophy, parents and adults reported that physical accessibility often posed difficulties for accessing adult services [15]. In addition, poor physical access to care has been shown to be associated with unmet needs in adults with physical disabilities [38].
Continual access to necessary health care during the transition was perceived as being essential in our study. Several aspects of the transition process were thought to contribute to disruptions in care including difficulty locating family physicians willing to accept care, lack of experience accessing adult subspecialties and concerns related to the family physicians’ knowledge/expertise with care of individuals with CP/disabilities. These challenges were also reported in a previous qualitative study where families reported that they had been confronted by health care providers who were unwilling to accept patients with complex conditions [15]. Previous studies of youths with CP and other disabilities have shown gaps in access to specialists and other health professionals during the transition [7], [19], [39]. The transition to adult care for individuals with CP has been characterized by pediatricians in a previous qualitative study as a series of multiple, disjointed transitions between different services with limited coordination [1]. Furthermore, health care providers, family members and young adults have reported that the pediatric system was better organized, with established relationships, easy access to specialists and community resources [1], [7], [20], [36]. In another qualitative study with young adults with childhood onset disabilities (including CP) they reported that young adults had difficulty accessing rehabilitation services in the adult setting [39]. Furthermore, family physicians have reported a lack of consultation support guidelines when referring adults with physical disabilities to specialists [37].
The level of training and comfort of the family physician in caring for individuals with complex disabilities was discussed in our study. In two previous qualitative studies, youth with disabilities and their families reported having difficulty finding adult providers who had the same expertise and training as their pediatric physician [15], [20]. Lack of training in caring for adults with childhood-onset physical disabilities has also been reported in previous qualitative studies of family physicians [19], [36], and adolescents have indicated concern about the availability of specialist expertise when transitioning to adult care [12]. Finally, family physicians reported in another qualitative study lack of expertise in caring for adults with severe physical disabilities due to minimal training with this patient population and limited clinical opportunities to develop expertise [37].
Communication between pediatricians and family physicians was identified as an essential aspect of the transitional trajectory. Previous studies using both quantitative [40] and qualitative methods [7], [20], [36], have cited poor communication as a barrier to transition. A qualitative study of youths with CP demonstrated that they lacked confidence in the ability of adult health care providers to receive and integrate information about their complex needs from pediatric providers during the transition [7]. Another study of pediatricians showed that they received limited communication from adult health care providers about the outcomes after transition [1].
The intensive time and resource requirements to meet the needs of young adults with disabilities was discussed in this study. Young adults reported that they worried there would not be sufficient time in their appointments with family physicians, while physicians and parents suggested that family physicians require compensation for the extra time required. Previous studies have reported that primary care physicians had limited time and insufficient resources to meet the complex needs of adults with disabilities [36], [37], [40], as well as limited remuneration [37]. Interestingly, limited funding and insufficient resources needed to meet the needs of complex care patients is a common issue faced by primary care providers in countries with different health care structures: France [40]; USA [19], [36]; Canada [7], [41].
Implications
The findings from this study have implications for future care approaches, service and funding models, and highlight the need for further research. There is a need for improved coordination between the pediatric and adult health care to ensure that youth with childhood-onset chronic conditions continue to have their needs met when transitioning to the adult system [6], [42]. The differences between the pediatric and adult care settings has been explained by the level of family involvement, type of support and decision making: pediatric care is family focused and prescribes care within an interprofessional team approach while adult care is patient focused without the same resources [43]. Although some specialized transition programs have been implemented for tertiary acute care and rehabilitation settings [6], [44], [45], not all youth have access to these. In Canada, the majority of transition programs focus on supporting individuals with chronic conditions (e.g. diabetes, cardiac) and/or physical disabilities with targets on self-directed care and advocacy [46]. When youth have more multisystem chronic conditions with severe disabilities and medical complexity, there is a high possibility of gaps in medical care and continuity that could result in physical and mental health decline. Further research into the design, implementation and evaluation of transition programs for individuals with complex medical needs is necessary.
Ongoing partnering between pediatric and adult healthcare streams to promote seamless care and improve service transition is needed. This population may benefit greatly from a team approach where family physicians and subspecialties work together to provide joint care planning. Primary adult services, in the form of FHTs and CHCs, may be the most appropriate starting point. In these particular practice settings, interprofessional practitioners are accessible, sites have relationships with other subspecialty services, clinics are physically designed for accessibility, and physicians receive salaries ensuring compensation for time devoted to this population.
It is essential that guidelines for transitioning youth with complex care needs be developed to support the transitional trajectory. Various societies and organizations in Canada have developed transition guidelines [47], [48]. These guidelines provide clinical and system level recommendations and emphasize elements such as individualized care, transition planning, coordinated transfer of care, stakeholder communication, family education, and comprehensive referral writing. The subsequent step from these guidelines and other similar guidelines is to ensure that these guidelines are implemented by programs and physicians and evaluated on a regular basis to improve effectiveness. These guidelines tend to provide recommendations based on the assumption that young adults have been successful in identifying and registering with a family physician equipped to accept care. The development of linkages and partnerships with family physicians who are open to accept care, have accessible office space to accommodate physical disabilities, experience and expertise in care for individuals with CP and other physical disabilities is essential in the transition to adult services for this population.
Limitations
This study was conducted with a relatively small sample size in each subgroup. Interviews were conducted with English speaking participants; however, the recruitment site exists within an ethnically diverse city. The study sample was recruited from one city and thus the data may reflect the experience of young adults in one city/one country. Therefore, this sample may not be representative of the general population of young adults, parents and physicians who care for young adults with CP. However, this study provides an in depth view of youth who have complex care needs (GMFCS IV and V) and provides insight into those who are at most risk of morbidity while being the least able to access care. Previous research addressed less complex populations.
Conclusions
To our knowledge, this is the first study to explore experiences of multiple family and medical professionals for a sample of adults with CP. This population of adults has complex challenges including multiple care needs which may contribute to the challenges of transitioning into adult care. An understanding of the challenges and supports experienced by participants provides awareness of needed improvements in the health care transition process for youth with CP, thereby reducing negative health outcomes. Findings suggest that this transition is multi-faceted and requires further attention by healthcare service providers. Interventions that are aimed at ensuring a seamless transition are required to reduce gaps in care, ensure consistent therapy, and reduce emotional stress.
Acknowledgement
The study team thanks Family and Client Advisors, Jan Magee, Crystal Chin, Tim Thuss and Joanne Downing for their guidance. Funding was provided through the Centre for Leadership in Child Development, Holland Bloorview Research Institute, Funder Id: http://dx.doi.org/10.13039/100010653.
Research funding: The study received internal funding of $12,500 from the Centre for Leadership in Child Development at Holland Bloorview Kids Rehabilitation Hospital.
Author contributions: All authors have accepted responsibility for the entire content of this manuscript and approved its submission.
Competing interests: Authors state no conflict of interest.
Informed consent: Informed consent was obtained from all individuals included in this study.
Ethical approval: Research involving human subjects complied with all relevant national regulations, institutional policies and is in accordance with the tenets of the Helsinki Declaration (as revised in 2013), and has been approved by the authors’ institutional review board (Holland Bloorview Research Institute, Research Ethics Board [REB # 15-580]).
References
1. Wright AE, Robb J, Shearer MC. Transition from pediatric to adult health services in Scotland for young people with cerebral palsy. J Child Health Care 2016;20:205–13.10.1177/1367493514564632Search in Google Scholar PubMed
2. Binks JA, Barden WS, Burke TA, Young NL. What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil 2007;88:1064–73.10.1016/j.apmr.2007.04.018Search in Google Scholar PubMed
3. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group, Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2011;128:182–200.10.1542/peds.2011-0969Search in Google Scholar PubMed
4. Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M, Damiano D, et al. A report: the definition and classification of cerebral palsy april 2006. Dev Med Child Neurol Suppl 2007;109:8–14.Search in Google Scholar PubMed
5. Liptak GS, Murphy NA, Council on Children with Disabilities. Providing a primary care medical home for children and youth with cerebral palsy. Pediatrics 2011;128:e1321–9.10.1542/peds.2011-1468Search in Google Scholar PubMed
6. Kingsnorth S, Proulx M, Tsybina I, Hamdani Y, Lindsay S, Lacombe-Duncan A et al. Integrating a new model of transition care into real-life systems: issues in implementing the LIFEspan model. Dev Med Child Neuro 2012;54(S6):20.Search in Google Scholar
7. Lariviere-Bastien D, Bell E, Majnemer A, Shevell M, Racine E. Perspectives of young adults with cerebral palsy on transitioning from pediatric to adult healthcare systems. Semin Pediatr Neurol 2013;20:154–9.10.1016/j.spen.2013.06.009Search in Google Scholar PubMed
8. Chamberlain M, Kent RM. The needs of young people with disabilities in transition from paediatric to adult services. Eura Medicophys 2005;41:111–23.Search in Google Scholar PubMed
9. Colver AF, Merrick H, Deverill M, Le Couteur A, Parr J, Pearce MS, et al. Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services. BMC Public Health 2013;13:675–86.10.1186/1471-2458-13-675Search in Google Scholar PubMed PubMed Central
10. Mudge S, Rosie J, Stott S, Taylor D, Signal N, McPerson K. Ageing with cerebral palsy: what are the health experiences of adults with cerebral palsy? A qualitative study. BMJ Open 2016;6(10):e012551.10.1136/bmjopen-2016-012551Search in Google Scholar PubMed PubMed Central
11. Usuba K, Oddson B, Gauthier A, Young NL. Changes in gross motor function and health-related quality of life in adults with cerebral palsy: an 8-year follow-up study. Arch Phys Med Rehabil 2014;95:2071–77.10.1016/j.apmr.2014.05.018Search in Google Scholar PubMed
12. Kirk S. Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev 2008;34:567–75.10.1111/j.1365-2214.2008.00862.xSearch in Google Scholar PubMed
13. Solanke F, Colver A, McConachie H, Transition Collaborative Group. Are the health needs of young people with cerebral palsy met during transition from child to adult health care? Child Care Health Dev 2018;44:355–63.10.1111/cch.12549Search in Google Scholar PubMed PubMed Central
14. Blackman JA, Conaway MR. Adolescents with cerebral palsy: transitioning to adult health care services. Clin Pediatr (Phila) 2014;53:356–63.10.1177/0009922813510203Search in Google Scholar PubMed
15. Lindsay S. Spaces of well-being among young adults with physical disabilities transitioning from pediatric to adult healthcare. Disabil Health J 2018;11:149–54.10.1016/j.dhjo.2017.03.018Search in Google Scholar PubMed
16. Liptak GS, Orlando M, Yingling JT, Theurer-Kaufman KL, Malay DP, Tompkins L et al. Satisfaction with primary health care received by families of children with developmental disabilities. J Pediatr Health Care 2006;20:245–52.10.1016/j.pedhc.2005.12.008Search in Google Scholar PubMed
17. Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the national survey of children with special health care needs. Pediatrics 2005;115:1562–68.10.1542/peds.2004-1262Search in Google Scholar PubMed
18. Lotstein DS, Inkelas M, Hays RD, Halfon N, Brook R. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health 2008;43:23–9.10.1016/j.jadohealth.2007.12.013Search in Google Scholar PubMed
19. Peter NG, Forke CM, Ginsburg, KR, Schwarz DF. Transition from pediatric to adult care: internists’ perspectives. Pediatrics 2009;123:417–23.10.1542/peds.2008-0740Search in Google Scholar PubMed
20. Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics 2005;115:112–20.10.1542/peds.2004-1321Search in Google Scholar PubMed
21. Scal P. Transition for youth with chronic conditions: primary care physicians’ approaches. Pediatrics 2002;110:1315–21.10.1542/peds.110.S3.1315Search in Google Scholar PubMed
22. Young NL, Rochon TG, McCormick A, Law M, Wedge JH, Fehlings D. The health and quality of life outcomes among youth and young adults with cerebral palsy. Arch Phys Med Rehabil 2010:91;143–8.10.1016/j.apmr.2009.08.152Search in Google Scholar
23. Sandelowski M. Whatever happened to qualitative description? Res Nurs Health 2000;23:334–40.10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-GSearch in Google Scholar PubMed
24. Patton MQ. Qualitative evaluation and research methods. 2nd ed. Newbury Park, CA: Sage, 1990.Search in Google Scholar
25. Rosenbaum PL, Palisano RJ, Bartlett DJ, Galuppi BE, Russell DJ. Development of the gross motor function classification system for cerebral palsy. Dev Med Child Neurol 2008;50:249–53.10.1111/j.1469-8749.2008.02045.xSearch in Google Scholar PubMed
26. Holland Bloorview Kids Rehabilitation Hospital [Internet]. Toronto: by the numbers, c2019. [cited 2019 October 10]. Available from: http://worldofpossibility.hollandbloorview.ca/by-the-numbers/.Search in Google Scholar
27. Morse JM. Strategies of intraproject sampling. In: Munhall PL, editors. Nursing research a qualitative perspective. Sudbury, MA: Jones and Barlett Publishers, 2007:529–39.Search in Google Scholar
28. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005;15:1277–88.10.1177/1049732305276687Search in Google Scholar PubMed
29. Resnik L, Jensen GM. Using clinical outcomes to explore the theory of expert practice in physical therapy. Phys Ther 2003;83:1090–106.10.1093/ptj/83.12.1090Search in Google Scholar PubMed
30. Meadows LM, Morse JM. Constructing evidence within the qualitative project. In: Morse JM, Swanson JM, Kuze AJ, editors. The nature of qualitative evidence. Thousand Oaks, California: Sage Publications, 2001:187–202.10.4135/9781412986236.n8Search in Google Scholar
31. Creswell JW. Qualitative inquiry and research design: choosing among five traditions. Thousand Oaks, California: Sage Publications, 1998.Search in Google Scholar
32. Fiese BH, Bickham NL. Qualitative inquiry: an overview for pediatric psychology. J Pediatr Psychol 1998;23:79–86.10.1093/jpepsy/23.2.79Search in Google Scholar PubMed
33. The Government of Ontario [internet]. Toronto: Family Health Teams, c2019. [cited 2019 October 10] Available from: http://www.health.gov.on.ca/en/pro/programs/fht/.Search in Google Scholar
34. The Government of Ontario [internet]. Toronto: Community Health Centres, c2019. [cited 2019 October 10] Available from: www.health.gov.on.ca/en/common/system/services/chc.Search in Google Scholar
35. The Government of Ontario [internet]. Toronto: Residential Supports, c2019. [cited 2019 October 10] Available from: https://www.mcss.gov.on.ca/en/mcss/programs/developmental/serviceSupport/residential_supports.aspx.Search in Google Scholar
36. Morrison EH, George V, Mosqueda L. Primary care for adults with physical disabilities: perceptions from consumer and provider focus groups. Fam Med 2008;40:645–51.Search in Google Scholar PubMed
37. McMillan C, Lee J, Milligan J, Hillier LM, Bauman C. Physician perspectives on care of individuals with severe mobility impairments in primary care in Southwestern Ontario, Canada. Health Soc Care Community 2016;24:463–72.10.1111/hsc.12228Search in Google Scholar PubMed
38. Popplewell NT, Rechel BP, Abel GA. How do adults with physical disability experience primary care? A nationwide cross-sectional survey of access among patients in England. BMJ Open 2014;4(8):e004714.10.1136/bmjopen-2013-004714Search in Google Scholar PubMed PubMed Central
39. Young NL, Barden WS, Mills WA, Burke TA, Law M, Boydell K. Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities. Phys Occup Ther Pediatr 2009;29:345–61.10.3109/01942630903245994Search in Google Scholar PubMed
40. Aulagnier M, Verger P, Ravaud JF, Souville M, Lussault PY, Garnier JP et al. General practitioners’ attitudes towards patients with disabilities: the need for training and support. Disabil Rehabil 2005;27:1343–52.10.1080/09638280500164107Search in Google Scholar PubMed
41. McColl MA, Forster D, Shortt SE, Hunter D, Dorland J, Godwin M et al. Physician experiences providing primary care to people with disabilities. Healthc Policy 2008;4(1):129–47.10.12927/hcpol.2008.19989Search in Google Scholar
42. Stewart D, Stavness C, King G, Antle B, Law M. A Critical appraisal of literature reviews about the transition to adulthood for youth with disabilities. Phys Occup Ther Pediatr 2006;26:5–24.10.1080/J006v26n04_02Search in Google Scholar PubMed
43. Kaufman M, Pinzon J, Canadian Paediatric Society, Adolescent Health Committee. Transition to adult care for youth with special health care needs. Paediatr Child Health 2007;12:785–8.10.1093/pch/12.9.785Search in Google Scholar PubMed PubMed Central
44. Campbell F, Biggs K, Aldiss SK, O’Neil PM, Clowes M, McDonagh J, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database of Systematic Reviews 2016;4:CD009794.10.1002/14651858.CD009794.pub2Search in Google Scholar PubMed
45. Gleeson H, McCartney S, Lidstone V. ‘Everybody’s business’: transition and the role of adult physicians. Clin Med 2012;12:561–6.10.7861/clinmedicine.12-6-561Search in Google Scholar PubMed PubMed Central
46. Canadian Foundation for Healthcare Improvement. Programs that aim to improve transition from pediatric to adult services: a snapshot. [cited 2019 October 10]. Available from: https://www.cfhi-fcass.ca/sf-docs/default-source/on-call/a-snapshot-of-transition-programs.pdf.Search in Google Scholar
47. American College of Physicians. [cited 2019 October 10]. Available from: https://www.acponline.org/acp-newsroom/guidelines-and-tools-developed-for-pediatric-to-adult-health-care-transitions-initiative.Search in Google Scholar
48. Children’s Healthcare Canada. [cited 10 October 2019]. Available from: https://ken.childrenshealthcarecanada.ca/xwiki/bin/download/Transitioning+from+Paediatric+to+Adult+Care/A+Guideline+for+Transition+from+Paediatric+to+Adult+Care/2017%2005%2010%20CAPHC%20Transition%20to%20Adult%20HC%20Guideline.pdf.Search in Google Scholar
©2019 Erin Brandon, Marilyn Ballantyne, Melanie Penner, Andrea Lauzon and Erin McCarvill, published by De Gruyter, Berlin/Boston
This work is licensed under the Creative Commons Attribution 4.0 Public License.
