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The Challenges of Transitioning from Pediatric to Adult Healthcare for People Living with Cerebral Palsy: A Systematic Qualitative Review

Sarah Hunt

Advisor: Anita Tesh, PhD, CNE, ANEF, RN

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Abstract

Cerebral palsy is often considered a “childhood condition”. However, the majority of

individuals living with cerebral palsy now live into adulthood. Healthcare services and systems are lacking for this population, as they often cater to children living with cerebral palsy.

Therefore, many people become “lost” between pediatric and adult providers. The purpose of this qualitative systematic review is to understand the perspectives of adults with cerebral palsy, as well as their caregivers, regarding the challenges of transitioning from pediatric health care services to adult health care services. This study was conducted through a review of the literature from CINAHL and PubMed. The Chronic Care Model was used as a guide for the extraction of themes and the project is blended with my own personal experience of living with cerebral palsy. Nine articles were included in the literature matrix. The goal of this review is to better

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Background

Cerebral palsy or (CP) is a term for a group of permanent neuromuscular disorders that is caused by abnormal development or damage to the brain prior, during, or shortly after birth (cerebral palsy, n.d.) . Abnormal development or damage can be due to a variety of reasons from maternal infections, jaundice, to hypoxia during or after birth. It should be noted, that while the cerebral palsy is often considered a “non-progressive” disorder as the damage that occurred to the brain does not change, the symptoms or clinical expression may change over time (What is cerebral palsy?, n.d.). Cerebral palsy causes motor dysfunction related to muscle tone, posture, and/or movement (Glader & Barkoudah, n.d.). However, people living with cerebral palsy may also experience co-morbidities such as epilepsy or gastro-intestinal issues (Glader & Barkoudah, n.d.).

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Spastic Cerebral Palsy

Spastic cerebral palsy is the most common type of cerebral palsy (cerebral palsy, n.d.). It is caused by damage to the cerebral cortex. People living with spastic cerebral palsy have increased muscle tone or hypertonia (cerebral palsy, n.d.). The increased muscle tone leads to stiff muscles, which makes it difficult to move, and can lead to orthopedic issues such as contractures (What is cerebral palsy?, n.d.). There are four subtypes of spastic cerebral palsy. Spastic hemiplegia or hemiparesis affects one side of the body, such as the left arm and the left leg. Children with spastic hemiplegia may walk on their toes on the affected side due to the spasticity (What is cerebral palsy?, n.d.). Spastic diplegia or diparesis usually involves muscle stiffness in the lower extremities, but other extremities may be less affected (What is cerebral palsy?, n.d.). Spastic quadriplegia or quadriparesis involves stiffness in all four limbs. Spastic quadriplegia is generally considered more severe than spastic hemiplegia or spastic diplegia due to the amount of limbs affected (What is cerebral palsy?, n.d.).

Dyskinetic Cerebral Palsy

Dyskinetic cerebral palsy is due to damage to the basal ganglia (What is cerebral palsy?, n.d.). The basal ganglia process information regarding movement as well as help to plan motor movements (Parr-Brownlie & Reynolds, 2018). People living with dyskinetic cerebral palsy may experience uncontrollable movements (What is cerebral palsy?, n.d.).

Ataxic Cerebral Palsy

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palsy may experience difficulties with balance, shaky movements, or be unsteady (Ataxic cerebral palsy, n.d.).

Mixed-Type Cerebral Palsy

Mixed type cerebral palsy is a combination of two or more types of cerebral palsy, such as spastic cerebral palsy and ataxic cerebral palsy (cerebral palsy, n.d.). Mixed- type involves multiple regions of the brain. Therefore, people affected with this type of cerebral palsy may have a variety of symptoms.

Transition from childhood to adulthood

Many people view the transition from childhood to adulthood as an exciting, life changing time. There isn’t a clear definition of when this occurs, some people may define it as when one turns eighteen and others may believe it is due to maturity levels and not a specific age. While this study focuses on the transitioning with healthcare services and providers during adolescence there are other transitions that occur, including social, physical, emotional, as well as societal transitions such as graduation from high school or college (Korth & Kokerelis, 2011). However, living with a disability may impact these transitions. For example, during late

adolescence, it is expected that people are able to have full achievement of adult verbal and written skills (Korth & Kokerelis, 2011). But many people living with disabilities have

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feel alone or isolated. Therefore, the “typical” tasks that occur during the transition period from childhood to adulthood may be different for each person based on their unique abilities.

Introduction

"The unique function of the nurse is to assist the individual, sick or well, in the performance of

those activities contributing to health or its recovery (or to peaceful death) that he would

perform unaided if he had the necessary strength, will or knowledge. And to do this in such a

way as to help him gain independence as rapidly as possible" (Henderson, 1966).

Virginia Henderson’s Theory of Nursing compromises of fourteen essential functions that define nursing care of patients. One function is that nurses should help patients learn and discover about their health, as well use the available health facilities (Virginia Henderson, n.d.). Through patient education, nurses can help strengthen patient’s knowledge regarding their health, increase confidence in their ability to care for themselves, as well as connect patients to resources from support groups to healthcare providers. While nurses often provide patient education and serve as a navigator for resources, many people living with childhood conditions, such as cerebral palsy, still feel lost in the ever-changing healthcare system. One aspect that is especially challenging is the transition from pediatric to adult healthcare, as there is not a uniform transition process or access to specialized healthcare for this population. For example, some pediatric providers have a cut off age for patients, while others do not. Pediatric providers may not have the expertise with adult conditions that adults living with cerebral palsy face, such as hypertension, osteoporosis, and arthritis. There are also not enough providers who are

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changes in social services such as disability benefits. Therefore, it is quite easy for people living with cerebral palsy to become lost and fall through the cracks of the healthcare system.

My Personal Experience

Growing up with cerebral palsy has many challenges, from pain and fatigue to the stigma regarding disability. Accessing healthcare shouldn’t be a challenge, yet from the time of my diagnosis I’ve been faced with trying to attain specialized, quality, healthcare. At the age of two I was diagnosed with mild spastic left sided hemiplegic cerebral palsy. The neurologist that diagnosed me gave my parents a speech filled with never: never be able to walk, never be able to talk, never be able to ride a bicycle or attend normal school. Yet, so much was left unsaid, most importantly: what’s next?

At the end of the appointment, there was no follow up planned with the neurologist or referral to an orthopedic specialist, simply “follow up with your primary care physician”. Thankfully my family had a primary care physician who referred me to a specialized children’s hospital where I received care including ankle foot orthosis or AFOs and surgeries. I often wonder what my care and my life would look like if I didn’t have a primary care provider or my family didn’t have health insurance.

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with “To be honest, I don’t know”. Once, at an urgent care for a school physical, I was told that “You’re the first person I’ve met with CP”. After a very intensive physical, I felt more like a guinea pig than a patient.

During my junior year of college I noticed a change in my baseline, as I was tripping more. My left foot was getting caught almost every day to the point where I would nearly fall. I decided to go to campus health where I received a referral to orthopedics and physical therapy or PT. Here I was told that if I needed surgery I would be referred to a pediatric provider. However, I am not an eleven year old one year post op, I am an adult living with a childhood condition. Adults with cerebral palsy have a higher risk of a conditions associated with aging, ranging from osteoporosis to hypertension, yet we are often treated at pediatric providers who may limited experience treating these conditions.

The lack of a smooth transition came to light during my appointment with campus health. The campus health provider needed my medical records to understand not only what surgeries I had, what was my original baseline, and progress I made. I did not have my records. They were not at my primary care office; and instead, were at my childhood specialized pediatric provider. Many forms and months later, I received a packet filled with terms and progress reports, and while these were helpful, they do not provide the full picture. Nor do they account for the years without access to a specialized provider.

In a few months, I will graduate and again, will be lost in a medical system. I do not know what my healthcare will look like. I do know that my experience is not unique. Millions of children with “childhood conditions” are now living well into adulthood including cystic

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with childhood conditions. Children with health issues grow up to be adults with health issues, and we should not be forgotten about.

Methods

CINAHL and PubMed were used to search for peer reviewed journal articles. The date range for this review includes articles from the present to 15 years ago to ensure recent data. After a consultation with the Health Science Librarian, Boolean phrases were used such as “Transitional Care” or “Transition” or “Transitions” and “Cerebral Palsy” or “CP” to capture potential articles. To be included in this review articles needed to 1) focus on the challenges patients with CP, their caregivers, or parents face related to the transition from pediatric to adult providers 2 ) be written in English 3) be peer reviewed 4) be published after January 2005. Since some studies combined CP with other childhood conditions, these studies needed either be able to separate CP in data or have a significant portion of participants with CP to be included. Exclusion criteria included 1) dissertations or systematic reviews, 2) focus on provider’s

challenges or perspectives. This search resulted in 118 studies which were imported to Cochrane from PubMed and CINAHL. Two duplicates were removed and 116 studies were screened. After reviewing article titles, 98 studies were found to be irrelevant for this review. After a full text review of the remaining articles, nine articles were selected to be a part of the literature review and matrix.

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Care Model can be applied to a variety of illness and conditions. Applying the model to healthcare can improve savings, health of patients, and satisfaction of providers (The Chronic Care, n.d.) .The Chronic Care Model was used for this study due to its applicability as cerebral palsy is a lifelong condition.

Results

All of the nine articles are single descriptive or qualitative articles. Therefore, they rank as a level six in terms of quality of evidence. Seven of the articles were based in North America, with six from America and one from Canada. Two studies were based in Sweden. Therefore, this study is based primarily on healthcare experiences in North America. It should be noted that all studies were from developed western countries. Participants included adults living with CP and parents of adolescents/young adults living with CP.

Bagatell, Chan, Rauch, and Thorpe (2017) conducted focus groups with nine young adults between the ages of nineteen and thirty-four years old. The study found four themes including being thrust into adulthood, navigating systems and services, understanding and managing my body, and dealing with stereotypes and prejudice. The participants viewed the drop of services as a “cliff” that made to difficult to engage in adult life. Participants also

described frustration with finding services as well as where to get services. Participants indicated that it would be helpful to have someone to help them or navigate through these systems;

however, they also described the services as fragmented. One important aspect for the participants was locating knowledgeable practitioners.

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themes were found including sorrow and stress in life, worries about what was to come, their need for support, strategies for coping and experiences of cohesion. Participants felt the support and service system was confusing, and information was often too much and not relevant for their child. Participants desired a personal coordinator to help with information and support.

Björquist, Nordmark, and Hallstrom (2014) also examined the experiences of adolescents living with cerebral palsy by interviewing twelve participants. Five subthemes were found including belonging to a family means security but maybe ‘too much’, socializing and

experiencing love is necessary, but not always possible, activities in daily life are manageable

but challenging, surrounded by support, but what is going on? and hopes for the future, but a

desire for stepping stones‐ . Participants only had vague ideas of support available, and they wished for a contact person to assist with finding support and individualized information.

Burkhard (2014) conducted a phenomenological study with eleven mothers regarding caring for an adolescent or young adult with severe cerebral palsy. Four themes were found including facing an uncertain future, managing an unexpected life, balancing caregiver demands and assuming advocacy roles. Participants described that medical advice was not applicable to daily life, lack of information regarding community supports, loss of services during the

transition period, and fear of finding healthcare providers who are specialized in treating cerebral palsy.

Carroll (2015) interviewed 9 adults aged 19-25 living with cerebral palsy to understand the meaning of the transition to adult healthcare. Five themes were found: expert novices, negotiating new systems, accepting less, inter-dependence, and evidence/experienced based

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a need for adult physicians who are specialized/knowledgeable in adults aging with CP. Participants also described a lack of resources in the adult model.

DiFazio, Harris, Vessey, Glader, and Shanske (2014) interviewed five adults with cerebral palsy and eight parents of adults with cerebral palsy to explore the transition from pediatric to adult healthcare. Four themes were found including lost in transition, roadmap to care, list to none, and one stop shopping. Participants described lack of adult providers, lack of knowledge from providers, lack of interdisciplinary care in adult healthcare, and the need for professional help.

Freeman, Stewart, Cunningham, and Gorter (2018) interviewed nine adults living with cerebral palsy in Canada to understand a variety of factors related to the transition to adulthood. The study found three themes recognizing and supporting information needs, getting creative, gaps and advice for the future. Participants conveyed that healthcare professionals did not provide information regarding adulthood or transition, as well as the challenges of multiple transitions at once such as school and housing.

Larivière-Bastien, Bell, Majnemer, Shevell, and Racine (2013) interviewed fourteen adults with cerebral palsy to understand the ethics, as well as perspectives of young adults with cerebral palsy transitioning between healthcare systems. Multiple “tension points” were

discovered. These points include transition envisaged with fear and apprehension, lack of cooperation or communication between providers in the pediatric and adult healthcare systems,

lack of support, preparation, and information during the transition, improper management and

transfer of medical records, difficulties related to the differences between the two healthcare

systems, lack of time and resources in the adult healthcare system, more knowledge and

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services globally more appreciated in the pediatric system, difficulty accessing physicians and

healthcare professionals in the adult healthcare system, abrupt loss of services, feelings of

abandonment, and sadness to leave the pediatric system.

Young, Barden, Mills, Burke, Law, and Boydell (2009) interviewed people living with cerebral palsy, spina bifida, and traumatic brain injury as well as their parents regarding the transition to adult healthcare. This study was included due to the limited amount of studies pertaining to cerebral palsy and the transition between healthcare systems. Four themes were discovered: Lack of access to health care ,lack of professional knowledge, lack of information and uncertainty. Participants described a lack of healthcare services for those with cerebral

palsy, as well as access to care being more difficult. Participants discussed a lack of resources and professional knowledge as well as the need for a coordinator during this transition.

In summary, the results of the literature review including reference citation, sample size, purpose, themes ,and study design are described in the appendix in Table 1.1. Using the

Chronic Care Model as a guide, four themes were extracted (The Chronic Care, n.d.). These themes were 1) Lack of decision support leads to unavailability of patient-focused information regarding condition and care 2) Environmental issues leading to inability for proper self-management 3) Fragmented and confusing health system leads to potential gap in care and 4) Need for delivery system to include navigator. Henderson’s Nursing theory also relates to this model, specifically with self-management, use of healthcare facilities, and nurses as coordinators (Virginia Henderson, n.d.).

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In the Chronic Care Model, decision support is to promote care that is evidenced based and consistent with guidelines as well as preferences (The Chronic Care, n.d.)Two aspects of decision support include integration of specialist expertise in primary care as well as continuing education for providers to provide the best evidenced based guidelines (The Chronic Care, n.d.).Two subthemes were found regarding unavailability of patient-focused information regarding condition and care. Eight out of nine articles described difficulty finding resources during the transition period (Bagatell et al.,2017; Björquist,, Nordmark, & Hallström, 2015; Björquist., Nordmark., & Hallström, 2014; Burkhard, 2013; Carroll, 2015; DiFazio et al., 2014; Larivière-Bastien et al., 2013 & Young, et al., 2009) Eight articles also described difficulty in finding information regarding patient specific information from providers (Bagatell et al.,2017; Björquist,, Nordmark, & Hallström, 2015; Björquist., Nordmark., & Hallström, 2014; Burkhard, 2013; Carroll, 2015; Freeman et al., 2018; Larivière-Bastien et al., 2013 & Young, et al., 2009). The subtheme of difficulty finding resources was found through participant descriptions such as “lack of information regarding support” or “difficulty finding support”. While the subtheme of patient specific information was found through participant descriptions such as “confusing”, “too much”, or “lack of knowledge”.

Environmental Issues Leading to Inability for Proper Self-Management

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Fragmented and Confusing Health System Leads to Potential Gap in Care

In the Chronic Care Model, the health system is needed to promote safe, high quality care (The Chronic Care, n.d.). Health systems need to have improvement strategies and support improvement to provide care. One aspect of high quality care is to facilitate care coordination within and across organizations (The Chronic Care, n.d.). Four out of nine articles described the health system as confusing and/or fragmented from pediatric to adult models. This subtheme was extracted through the use of terms by participants such as “confusing” “fragmented” or

descriptions of a lack of smooth transition (Bagatell, et.al, 2017; Björquist, Nordmark, & Hallström, 2015; Larivière-Bastien et al., 2013 & Young et al., 2009) Five out of the ten articles conveyed the issue of lack of providers in the adult system (Bagatell, et.al, 2017; Burkhard, 2013; Carroll, 2015;Difazio et.al, Larivière-Bastien, et.al, 2013, & Young, et.al, 2009 ). This subtheme was found through discussions regarding lack of providers and not lack of knowledge of providers, as lack of knowledge of providers is a subtheme of decision support.

Need for Delivery System to Include a Navigator

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Discussion

From the findings above, it is clear that people living with cerebral palsy face multiple challenges when transitioning from the pediatric to adult healthcare system, including lack of resources, support, and knowledgeable healthcare providers. The findings of the literature review convey that these issues are widespread. Implications of the review suggest that adults living with cerebral palsy may not receive the same care as they received as children, and this may lead to decreased quality of life and self-management as an adult.

The findings of this systematic review are consistent with my own healthcare

experiences. I have had issues with accessing care including lack of adult providers and lack of medical information that pertains to my specific needs. I would have personally benefited from a case manager to facilitate referrals to healthcare professionals as well as resources in my

community.

Limitations of this study include lack of research on this subject and a small sample size of nine articles. These articles also were from western developed countries; therefore, the

experiences of those elsewhere may be quite different. The themes were not verified by a second person. More research needs to be completed regarding the process of transitioning from

pediatric to adult healthcare.

There are some potential solutions to the problems found in this study. First, more research needs to be done to understand the physiological and psychosocial changes that people living with CP face. Research will influence education, as well as clinical practice which will improve the lives of those living with CP.

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often only taught in pediatric courses. Teaching CP in other courses would increase the

knowledge of healthcare professionals and their ability to teach patients about resources as well as their care.

Third, funding needs to be provided to allow for advanced practice providers such as NPs, PAs, and MDs, to have continuing education or residencies to specialize in the care of adults living with CP. Funding is also needed to allow for more support services for adults living with CP such as physical and occupational therapy, social services, and accommodations that resemble the pediatric model.

Finally, healthcare systems need to design case management roles to allow for better transition from pediatric to adult healthcare. Having a designated role would facilitate the transition process, and ensure that patients have follow ups with the correct provider, as well as find the resources that they need during this time. Nurses have the ability to fulfill this role as many nurses often serve as case managers for hospitals. Henderson’s Nursing Theory not only focuses on care in the hospital, but also self-management in the community (Virginia Henderson, n.d.). Part of her theory states “leads to normal development and health and use the available health facilities” (Virginia Henderson, n.d.). Nurses can help coordinate care outside of the hospital to allow for people living with cerebral palsy to be as independent as possible and use available healthcare resources.

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Conclusion

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References

Ataxic cerebral palsy. (n.d.). Retrieved April 4,2020 from

https://cerebralpalsy.org.au/our- research/about-cerebral-palsy/what-is-cerebral-palsy/types-of-cerebral-palsy/ataxic-cerebral-palsy/.

Bagatell, N., Chan, D., Rauch, K. K., & Thorpe, D. (2017). “Thrust into adulthood”: Transition experiences of young adults with cerebral palsy. Disability and Health Journal, 10(1), 80–86. doi: 10.1016/j.dhjo.2016.09.008

Björquist, E., Nordmark, E., & Hallström, I. (2015). Parents’ experiences of health and needs when supporting their adolescents with cerebral palsy during transition to adulthood.

Physical & Occupational Therapy In Pediatrics, 36(2), 204–216. doi:

10.3109/01942638.2015.1101041

Björquist, E., Nordmark, E., & Hallström, I. (2014). Living in transition - experiences of health

and well-being and the needs of adolescents with cerebral palsy. Child: Care, Health and Development, 41(2), 258–265. doi: 10.1111/cch.12151

Burkhard, A. (2013). A different life: Caring for an adolescent or young adult with severe cerebral palsy. Journal of Pediatric Nursing, 28(4), 357–363. doi:

10.1016/j.pedn.2013.01.001

Carroll, E. M. (2015). Health care transition experiences of young adults with cerebral palsy. Journal of Pediatric Nursing, 30(5). doi: 10.1016/j.pedn.2015.05.018

Cerebral palsy. (n.d.). Retrieved April 15, 2020 from https://www.cdc.gov/ncbddd/cp/facts.html. DiFazio, R. L., Harris, M., Vessey, J. A., Glader, L., & Shanske, S. (2014). Opportunities lost

and found: Experiences of patients with cerebral palsy and their parents transitioning

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Freeman, M, Stewart, D, Cunningham, CE, Gorter, JW. (2018). “If I had been given that information back then”: An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood. Child Care Health Dev. 44: 689– 696. https://doi.org/10.1111/cch.12579

Glader, L., & Barkoudah, E. (n.d.). Cerebral palsy: Clinical features and classification. Retrieved

April 15, 2020 from https://www.uptodate.com/contents/cerebral-palsy-clinical-features-and-classification?search=cerebral

palsy&source=search_result&selectedTitle=1~150&usage_type=default&display_rank=1 #PATIENT_INFORMATION.

Korth, S., & Kokorelis, C. (2011). Transition to adulthood for persons with childhood onset

disabilities. Retrieved April 15, 2020 from https://now.aapmr.org/transition-to-adulthood-for-persons-with-childhood-onset-disabilities/

Larivière-Bastien, D., Bell, E., Majnemer, A., Shevell, M., & Racine, E. (2013). Perspectives of young adults with cerebral palsy on transitioning from pediatric to adult healthcare systems. Seminars in Pediatric Neurology, 20(2), 154–159. doi:

10.1016/j.spen.2013.06.009

Parr-Brownlie, L. C., & Reynolds, J. N. J. (2018). Basal ganglia. Retrieved April 4, 2020 from

https://www.britannica.com/science/basal-ganglion. The Chronic Care Model. (n.d.). Retrieved April 16, 2020 from

http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2

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physical disabilities. Physical & Occupational Therapy In Pediatrics, 29(4), 345–361. doi: 10.3109/0194263090324599

Virginia Henderson. (n.d.). Retrieved April 15,2020 from

https://nursing-theory.org/nursing-theorists/Virginia-Henderson.php.

What is cerebral palsy?: Gillette Children's Specialty Healthcare. (n.d.). Retrieved April 4, 2020 from

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Appendix Table 1.1

Author (Year)

Sample Purpose Study Design Themes Notes

Bagatell, N., Chan, D., Rauch, K. K., & Thorpe, D. (2017). 9 young adults with Cerebral Palsy with the ability to communica te conversatio nally either verbally or with the use of an assistive device. Participants were no older than 35 and had graduated high school.

To study the perceptions, needs, and transition experiences of young adults with cerebral palsy. A descriptive qualitative study using two focus groups that lasted approximately 100 minutes.

Four themes were found regarding the transition to

adulthood

-being thrust into adulthood

-navigating systems and services

-understanding and managing my body -dealing with stereotypes and prejudice.

-Lack of services such as medical care and

accommodations at school drop off significantly after high school. More responsibility from family and friends. Not a smooth process.

-Finding services as well as applying for services provided many challenges such as providing documentation as well as rules and regulations with services.

-Lack of providers who specialized in CP for adult populations -Understanding physical changes with CP

-Stereotypes in and out of healthcare. Desire for

healthcare

providers to look at them as equals instead of inferior. -Need for providers to acknowledge adults needs and desires such as intimacy.

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Björquist, E., Nordmark, E., & Hallström, I. (2015). 15 total parents with 10 adolescents with cerebral palsy. To understand how parents of adolescents with cerebral palsy experience their own health, wellbeing, and their needs for support during the adolescent's transition to adulthood. An inductive qualitative approach was used based on interviews.

Five sub-themes were found

-sorrow and stress in life

-worries about what was to come

- their need for support, -strategies for coping

- experiences of cohesion

-Parents still have concerns regarding their child’s condition. -memories from unsympathetic providers -Coordinating care and services were stressful and challenging. -Parents often did not have time for their own wellbeing. -Information from health care providers was lacking, confusing, or too much. -Parents felt

support and service system was

confusing.

-Lack of readiness -Too much

information was not helpful as parents had to sort of what was relevant for their child. -Parents had difficulty finding where to get support.

-Desire for support for parents as well as child.

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community. Björquist, E., Nordmark, E., & Hallström, I. (2014) 12 adolescents in Sweden with Cerebral palsy aged 17-18. To study how adolescents experience their own health, wellbeing, and needs as they

transition to adulthood.

An inductive qualitative approach was used based on

interviews

Five subthemes were found

-Belonging to a family means security but maybe ‘too much’

-Socializing and experiencing love is necessary, but not always possible -Activities in daily life are manageable but challenging -Surrounded by support, but what is going on?

-Hopes for the future, but a desire for stepping stones‐

-Desire for individualized information from a trusted professional or a competent professional. -Desire for help /resources outside of family support -Lack of readiness for adulthood. -Little to none experience with education or activities related to the transition of adulthood.

-Unsure of support available in

adulthood.

-various challenges with ADLs from cooking to managing money Burkhard, A. (2013). 11 mothers with adolescent children with severe CP. To study elements of maternal caregiving of mothers with children with severe Cerebral Palsy. A demographi c questionnair e and a semi-structured interview Four sub-themes were found -managing an unexpected life -finding my own way

-serving as my child's voice - facing an

uncertain future.

-balancing demands with other aspects of life.

-Parents believed that healthcare providers did not recognize the complexity of their disability, risk for adverse events, or parental challenges. -Medical advice not being applicable to daily life.

-Feeling alone and lack of information regarding

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-Healthcare providers not understanding child’s communication style.

-loss of services and relationship with transition. -Fear of finding healthcare

providers who have the knowledge and expertise.

-Long term care for their children. Carroll, E. M. (2015) 9 adults aged 19-25 years old who identified with a diagnosis of CP without cognitive impairment. To understand the meaning of the transition to adult health services by adults with CP. Qualitative study using Giorgi's Existential Phenomenologi cal Method for analysis of phenomenolog y with

interviews.

Five themes were found -Expert Novices -Negotiating New Systems -Accepting less -Inter-dependence -Evidence/ Experience Based Expectations -unfamiliar and fragmented health model

-need to be partners in care

-Need for adult physician that is specialized in adults aging with CP -Insurance issues and accessibility -Lack of resources -Lack of

knowledgeable providers

DiFazio, R. L., Harris, M., Vessey, J. A., Glader, L., & Shanske, S. (2014). 5 adults with CP and 8 parents. To describe and define the experiences of patients with CP and their parents through the transition process from pediatric to adult health Qualitative study using semi-structured interviews with adults with CP and their parents.

Four themes were found

Lost in Transition -Roadmap to Care - List of None - One Stop Shopping.

-Lack of transition -Emotional aspects of transition

-Need for education regarding transition early

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care, specifically with physiatry care. -Record transfer -Referral not sufficient

-Lack of knowledge from providers -Lack of

interdisciplinary care like pediatric model Freeman, M, Stewart, D, Cunningham, CE, Gorter, JW. (2018) 9 adults with CP between the ages of 20-40 in Canada. To understand the information needs, timing, preferences, and method of provision of adult transition from those with CP. Qualitative study using interpretive description with an one hour interview.

Three themes were found

-Recognizing and supporting

information needs -Getting creative -Gaps and advice for the future, -Professionals did not provide information regarding adulthood or transition including intimacy. -Multiple

transitions at once- school, housing issues Larivière-Bastien, D., Bell, E., Majnemer, A., Shevell, M., & Racine, E. (2013). 14 adults between the ages of 18-25 with CP.

Ethics and CP Perspectiv es of young adults with cerebral palsy on transitioni ng from pediatric to adult healthcar e systems. Semi-structured, one-on-one qualitative interview and the completion of a short questionnaire

-Transition

Envisaged With Fear and Apprehension -Lack of Cooperation or Communication Between Providers in the Pediatric and Adult Healthcare Systems

-Lack of Support, Preparation, and Information During the Transition -Improper

Management and Transfer of Medical Records

-Difficulties Related to the Differences Between the 2 Healthcare Systems -Lack of Time and

-Feelings of fear with transition -Lack of communication -Lack of information and smooth/early transition

-Need for support -providers are less familiar with CP -lack of support and follow up in adult system

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Resources in the Adult Healthcare System

-Pediatric Health Care

-Feelings at transition

Young, N.. Barden, W.. Mills, W.. Burke, T. Law, M. & Boydell, K. (2009)

15 youth and 15 adults with CP, Spina Bifida, and TBI, as well as their parents (30).

To explore the specific issue with transitioning to adult centered health care.

Semi-structured one on one qualitative interviews.

- Lack of access to health care

-Lack of professional knowledge

-Lack of information -Uncertainty

-Lack of healthcare

services for those with CP

-Feelings of loss -access to care is more difficult in adult system -lack of resources for adults

-lack of professional knowledge with disabilities

-lack of information provided

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