Information needs of young people with cerebral palsy and their families during the transition to adulthood: a scoping review

Purpose of the review and the research team

In seeking to understand the information needs of young people with CP and their families, this review explores, in addition to content areas, other areas of information delivery, including suggestions from professionals and preferences from stakeholders with respect to timing of information delivery (when) and in respect to how information is delivered. The research team was comprised of two content experts in transition to adulthood for youth with disabilities (JWG and DS), a graduate student in rehabilitation science living with CP (MF), and a researcher familiar with information needs research and provision strategies (CC).

Identifying relevant studies

The inclusion criteria were peer-reviewed papers with full text available explicitly referencing the transition to adulthood, CP, and information needs or provision within the abstract. To assist in finding relevant literature the following databases were searched: OVID Medline, CINAL, ERIC, EMBASE, PsycINFO, Web of Science, Social Science Abstracts and Sociological Abstracts. No limitations were placed on year of publication or language of publication during the search, and all full text articles reviewed were published in English.

MF conducted the database searches in July 2017 in consultation with a health science librarian. The research team recognized that often a diagnosis of CP may be included in more general studies examining the transition to adulthood for youth with disabilities, which include CP as well as other conditions. Therefore, to be as inclusive as possible, major subject headings for CP, childhood disability and transition to adulthood or transitions were used on recommendation by the health sciences librarian. Data for the scoping review were managed using bibliographic management software and the creation of Microsoft Excel spreadsheets that allowed each reviewer to select their inclusion or exclusion option as well as provide a rationale, if needed.

Study selection

A summary of the study selection process is shown in Figure 1. Searching of databases retrieved 675 articles. After removing duplicates, 442 articles moved forward to title review. MF and DS performed the title review and met to discuss their decisions as well as reasoning to ensure agreement and reinforce the aims of the review. Following title review, 205 articles remained for abstract review. MF and DS reviewed all abstracts and CC acted as judge in areas of disagreement. Seventeen articles were included for full-text review by MF and DS. During full-text review, six articles were removed as they did not discuss information needs, CP and the transition to adulthood. The characteristics of the 11 included studies are summarized in Table 1.

Figure 1:

PRISMA study selection flow diagram.

Charting the data

Data were then extracted by MF from eleven articles and reviewed by DS and JWG. All articles were read and data pertaining to information needs and/or provision were charted (Table 2).

Collating, summarizing and reporting the results

An a priori coding scheme was developed using summative content analysis [20]. Patterns emerging from the raw data were then organized by identified information needs during transition (content), identified providers of information during transition (who), identified delivery methods of information during transaction (how), identified timing of information delivery of information during transition (when) and location of information provided during transition (where). It was recognized that it was necessary to make purposeful distinctions between recommendations from participants in research versus recommendations from authors when summarizing the findings. These organizational categories consider the idiosyncratic and individual nature of information needs [21], which requires an examination of the preferences of knowledge users. Although this coding structure was developed a priori, ultimately these categorizations were validated by the review as many studies addressed these attributes in their findings or discussions.

Identified information needs during the transition to adulthood (content)

The majority of the articles (7 out of 11) focused exclusively on healthcare transitions [3, 10, 22, 25, 26, 27]. The content of information targeted health-related domains such as aging with CP [10], sharing of information between pediatric and adult service providers [10, 22, 26] and how to share information with service providers, such as personal care attendants, that may not necessarily have an understanding or skill set in dealing with adults with CP [4].

Young and colleagues [3] found that both young people with CP and their parents sought information about where to find medical care entering adulthood. Nieuwenhuijsen et al. [10] found a need for young people to learn more about CP suggesting that disability specific information is often delivered to parents during a child with CPs early years, but limited information about the condition and changes in impairments is provided to children, adolescents or young adults as they age. Camfield and Camfield [26] expanded questions about individual function to include questions of sexual health. Parents of youth in transition often shared similar information needs with their children, but Bindels-de Heus and colleagues [25] highlighted information needs of parents of young people living with CP who also live with an intellectual disability. For this subgroup of parents, information about differences in adult care, such as the fragmentation of care versus a single pediatrician, and differences in the role of parents in the adult system advocating for their children [25] were key considerations when thinking about the future. Young and colleagues [3], Bindels-de Heus and colleagues [25] and Camfield and Camfield [26] discussed the importance of the continuing education of adult providers to further understand the needs of young people with CP and their families.

Four of the 11 articles were not specific to any transitional domain (e.g. healthcare or education). Instead, authors discussed the transition to adulthood broadly [4, 5, 9, 23]. Bagatell et al. [4] found in addition to health, young people also have to navigate new systems and find information or correct contacts to establish financial support and find employment or work while receiving benefits. Bjorquist et al. [9], found a desire for information about supported independence from their families, adult relationships, intimate relationships and finding housing. Stewart [5], in addition to the previous domains identified, also recognized that young people with CP are a part of the education system and educators therefore require information about transition to adulthood, which is important when planning their postsecondary education journey. Freeman et al. [23] discussed the development of a transitional tool for adolescents to organize information in various domains, such as health, employment, socialization and education. One of the benefits of the transitional tool was that it broke down information needs into manageable pieces for individuals and provided worksheets with developmentally sequenced questions that built on pre-existing knowledge (i.e. street address, intersections around the family home and the local accessible public transit bus route).

In summary, youth with CP and their families are looking for information during the transition to adulthood not only about their physical health, but also their social and emotional health. They are also looking for information about opportunities to further participate in their communities in adult life. The articles in this review also recognize that individuals interacting with young people with CP and their families also have information needs. This includes doctors, educators and those delivering governmental services.

Identified recommended providers of information during the transition to adulthood (who)

Preferences for provision of information during the transition to adulthood is different for young people with CP, their families and pediatric and adult providers. For young people and their families, several studies recognized that they can be both providers of information and receivers of information as they experience this transition [3, 4, 9, 22, 25]. For example, the healthcare transition literature reviewed highlighted the need for young people and their families to share information about themselves with their new practitioners in the adult world [26, 27]. At the same time, these studies also recognized the need for both pediatricians and adult clinicians to provide information to families to assist them in preparing for and navigating the new system and expectations.

Although it was found that young people with CP and their families should be viewed as having expertise about their own experience, some of the qualitative studies challenged this perspective with nuance. Carroll [22] introduced the concept of the “expert novice” as young people are trained by their pediatric care teams to understand their conditions and be experts. Entering at the adult world, they feel that they have an inadequate knowledge base and level of expertise. Other studies in this review also recognized young people may not possess the necessary skills to best share information about themselves [3, 27].

Studies about information needs also recognized the importance of social support during the transition to adulthood for youth and families. Although many studies advocated for an individual to assist youth and families navigating systems [4, 5, 9, 10, 22, 23, 24, 25, 26], who the individual was or should be varied among studies. The articles focusing primarily on healthcare transitions indicated that clinicians, such as a nurse [22] or social worker, or therapist [10] could act as a navigator Regardless of the discipline of the individual clinician, the studies reviewed made the important point that the navigator should be someone the individual connects with on a regular basis [10, 22, 23, 26]. In contrast, Carroll [22], Freeman et al. [23] and Stewart [5] considered the multidimensional and contextual nature of navigation and mentorship and argued for support coming from an individual that was a fit between the young person’s interests and the mentor’s interests and knowledge. An educational assistant may be helpful when assisting a young person with education-related information, but a friend may be more helpful in assisting with information about social activities. In summary, youth with CP and their families are looking to receive information from individuals close to them who can act as a navigator. Importantly the “fit” between young people with CP or their families and the navigator is a key factor to consider.

Identified delivery methods of information during the transition to adulthood (how)

Bjorquist et al. [9] identified two important findings: First, information was preferred to be delivered verbally, and second, young adults preferred information be delivered by individuals other than their parents. In addition to verbal face-to-face communication, other studies recognized that information can also be gathered through real-life experiences. Three articles advocated for young people to be connected with adult service providers early on in their transitional process [3, 4, 27] so that relationships can be developed and an understanding of expectations on both sides of the clinical relationship can be developed [3, 25, 27]. Freeman et al. [23] provided support for young persons to learn through experiences and to be given the opportunity to reflect on those experiences and use this new information to assess change throughout the course of their developmental journey.

For parents, delivery methods included verbal or face-to-face communication with clinicians as well as peer support. Bindels-de Heus and colleagues [25] advocated parent support networks which can play a key role in assisting parents during the transition to adulthood by helping to develop “transitional plans” with families. Camfield and Camfield [26] also identified the personal connections of parent networks as important delivery methods of information, pointing out that doctors and families may change their geographical location over time and require new information and networks for their communities.

None of the articles in this review discussed providing written information to families; however, Stewart advocates for service systems to provide information in “clear language” (p. 171). The sharing of written information was discussed within the context of sharing between service providers [5, 25, 26, 27].

In summary, youth with CP and their families require information delivered to them by individualized information methods. Examples of individualized information included young people with CP preferring information be delivered to them verbally rather than in written format. Parents of young people with CP also preferred face-to-face communication.

Identified timing of information delivery of information during the transition to adulthood (when)

There is no agreement about the timing of information delivery to young people and their parents during the transition to adulthood, but an analysis of recommendations suggests that sharing of information should begin at least at the beginning of the transitional phase [3, 5, 22, 26], which is typically between ages 14–16 [3, 25, 26]. Stewart [5] broke down the transition to adulthood into a series of phases described as preparation, journey and landing. In the preparation phase, youth may begin learning more about themselves and using transitional tools such as the Youth KIT [23] to gather and organize information. In cases where recommendations were made for young people and their families to experience connecting with adult services early, the suggested time was around 16 years [26, 27]. As the young person is experiencing the transition to adult services, suggestions included pediatric providers making every attempt to communicate and share medical information with adult providers and setting up networks to ensure that all providers have a good understanding of childhood disability and its management [3, 4, 25, 26]. Regardless of the lack of specificity of the timing of the information sharing, studies make clear that information sharing is a dynamic and ongoing iterative process in which the development of the young person, their expectations and abilities should be considered [23, 24]. Stewart [5] suggests that once a young person and their family have transitioned or “landed”, new information needs may arise stemming from a change in context.

In summary, the transition to adulthood for youth with CP and their parents is a dynamic and interactive process that requires an ongoing conversation, which should typically begin in early adolescence and should always be approached in a developmentally appropriate fashion.

Location of information provided during the transition to adulthood (where)

The location of information was only explicitly discussed by three of the reviewed articles. The most specific recommendations came from Stewart [5] who advocated a central point of access within communities that is visible, though no guidelines are provided. Bjorquist et al. [9] shared that youth did not want their information provided in group settings, but rather individualized. Freeman et al. [23] built upon the theme of individualized information asserting that the location of information delivery is dependent upon the contextual nature of the information need. Interestingly, though not related specifically to location of information, participants in Bagatell et al. [4] expressed frustration at having to share information to providers repeatedly in different contexts.

In summary, the location of information delivery is dependent upon the individual for both youth with CP and their parents. The individualization is determined by the information need and the individual’s context.

Contextualizing the findings and service implications

Many of the findings emerging in this review come from qualitative studies that advance not only our understanding of information needs, but also insight into the burden felt when individuals and their families were unable to access the information when they needed it [3, 4, 9]. Repeated across studies was the theme of “falling off a cliff” or a sense of isolation [3, 4, 5, 10, 26].

Nguyen and Baptiste’s [2] discussion of acculturation provides useful insight into why this sense of isolation may be occurring. Within pediatric systems there is an expectation of “family centred practice” often with the pediatrician at the centre of care [25]. Parents of children with CP have reported grieving the loss of a pediatrician figure to assist with care [25]. Without centralized service delivery, it is reported that parents are often having to fill the gap by seeking their own information [3, 25] and advocating for their children.

The notion that the individual with CP and their family are the experts of their own lived experience is an underpinning of family centred practice [11]; however, when thinking about information needs and the provision of information we must explore this concept with a critical eye. Expertise about one’s impairments or conditions should be viewed within the context of the individual. For example, Caroll [22] found that young adults with CP often recognize the limitations of their own knowledge and look to professionals to provide suggestions based on clinical experience and expertise. Within the context of informational support, King et al. [24] suggest that social support networks play an important role as information providers, not only in providing direct answers, but also making suggestions which allow for the exploration of new options. However, King et al. [24] also recognized and exposed some of the potential conflicts and negative attitudes encountered by individuals when looking for social support, such as preconceived notions about ability to achieve goals within the context of an individual’s perceived functional abilities, which was similar to those found in Freeman et al. [23]. Bagatell and colleagues [4] argue that, during the transition to adulthood, there is a difference between policy objectives and reality. Although policies advocate for young people with disabilities and their families to direct their own services and make independent choices about their future from an array of options, young people may not possess enough information to make informed choices about the options available.

Bjorquist et al. [9] explored the health and well-being of older adolescents aged 17 and 18 who preferred information be provided by individuals other than their parents. From a developmental perspective, this is congruent with theories of emerging adulthood [1], which suggests that individuals begin to rely less on their family to construct their worldview. This scoping review also highlighted the need for formal information support providers (e.g. doctors, educators or rehabilitation professionals) to move away from discussing the specific domains of an individual’s life and rather looking at the whole person in context. For example, an individual client may be interested to know about the relationship between aging and physical functioning within the context of intimate relationships [28].

Clinicians working with young people with CP and their families in the transition to adulthood should be willing to provide clinical information and advice, and answer direct questions from their clients, as well as provide prompting to the young person and their families to ask questions. That said, it is recognized that clinicians have information needs of their own and may not have the opportunity to get a holistic history before seeing a client. Nevertheless, it is advisable for clinicians to adopt a “shared agency” approach recommended by Gorter and Gibson [29], which allows for mutual learning on both the part of provider and client. Nieuwenhuijsen and colleagues [10] provide a helpful list of questions young people are seeking answers to, which is a good guide for clinicians. For example, young people want to know about sexuality or driving a car, and this can provide opportunity for clinicians to inquire about whether young people or their families have considered expanding relationships or transportation opportunities. Asking these questions is an example of a “shared agency” approach.

Opportunities for future research

Many of the articles in our scoping review targeted information needs in the context of the healthcare transition. It is necessary to further study whether the barriers faced with giving and getting information during healthcare transition are also barriers faced in other transitional domains, including leaving the family home or finding employment. In the domain of employment, it is known that young people with CP and other lifelong conditions have difficulty communicating information about their accommodation needs with their employer [30]. One question is the degree that individuals with CP are required to act as their own expert when advocating accommodations within the workplace or whether employers are working with professionals to universally accommodate individuals with disabilities within the workplace.

The findings in our review suggest that youth with CP prefer to receive information from people they have relationships with. Therefore, future research may explore the development and maintenance of parent supports or peer supports for youth with CP and whether they assist them in meeting their information needs and in making the cultural shift inherent in the pediatric and adult service and support systems. While a navigator was identified as being helpful and important in the literature, there is a lack of evidence on its effectiveness. Future research therefore should incorporate pragmatic effectiveness studies [31] to evaluate the effects of a navigator and the ‘active ingredients’ of such an intervention. There are also questions about whether navigation needs to occur in person or can be done over the Internet [32]. In this review the use of a mentor through internet-based connections was not mentioned; however, within the context of health information more generally as well as transition literature, internet-based strategies are emerging [32, 33], but the need for approaches tailored to the needs of the individual receiving support is highlighted.

Limitations and considerations

The use of scoping review methodology to synthesize knowledge is acknowledged within the context of this review. Scoping reviews examine all evidence to “map” concepts and, unlike systematic review methods, they do not include a stage where evidence is appraised for overall quality [19]. Our goal in this review was to understand identified information needs during the transition to adulthood published in journals after having been through the peer review process; however, we do recognize that some qualitative studies reviewed had smaller sample sizes than recommended for the chosen methodological approach. Examining the qualitative studies as a group, the repetition of themes across geographical locations lends to overall transferability of findings to other populations of young people with CP in the transition to adulthood. Nevertheless, we recognize that the studies reviewed are from “Western” nations and may have a bias toward individuals and families with long-term engagements with the pediatric healthcare system. Future research should explore the applicability of these findings to hard-to-reach families and individuals living with CP and their families immigrating from or living in non-Western nations. We also recognize that this review did not incorporate grey literature, which may not be formally published, aimed at providing information to young people with CP and their families in the transition to adulthood.

Another issue arising out of this review is terminology: only two of the 11 articles reviewed used keywords relating to information or knowledge. Prioritizing information as a keyword will help further define and develop the literature base about information needs for youth and families during the transition to adulthood.