Readiness for transition from pediatric to adult care for adolescents with chronic heart disease

1 Purpose

The purpose of this study was to determine transition readiness of adolescents with chronic heart disease to adult care.

2 Methods

The sample of the study comprised 113 adolescents between the ages 12 and 18 years with chronic heart disease. Transition readiness was assessed by the Transition‐Q self‐administered tool.

3 Results

The Transition‐Q mean score was 63.0 (range = 31–92). The self‐management skills of the adolescents increased significantly in direct proportion to their ages. Most of the adolescents had a lack of confidence about medication management and communicating with healthcare providers. No significant difference was detected between boys and girls in terms of total and individual items’ scores.

4 Practice Implications

Transition readiness should be assessed to understand transitional requirements of adolescents with chronic heart disease and to plan appropriate nursing interventions accordingly.     

Life beyond pediatrics. Transition of chronically ill adolescents from pediatric to adult health care systems

Transition from pediatric to adult health care is fraught with difficulties. On the one hand, the adult care system is not properly prepared to receive patients who are survivors of the so-called childhood disorders. On the other hand, patients and families have difficulty leaving the protective environment created by pediatric caregivers, who in turn may have mixed feelings about letting the patients go. Normalization of development and social adaptation for chronically ill adolescents, however, should include a change in the environment in which health care is received. This article examines some of the issues surrounding transition and transfer from pediatric to adult health care systems and propose some avenues toward implementation of such programs.     

Facilitating the transition of adolescents with developmental disabilities: nursing practice issues and care

The purpose of this article is to provide an overview of salient issues that adolescents with developmental disabilities face as they approach adulthood. For nurses who provide services to this population of youth, knowledge of these significant issues is essential to developing a youth-centered transition plan that addresses their comprehensive health needs. Health care professionals, including pediatric nurses, have important roles as service coordinators, consultants, or direct service providers to ensure that the health-related transition needs of the youth are met. Transition assessment, planning, and intervention strategies that can be integrated into a comprehensive plan of care are discussed.     

The transition of adolescents with diabetes from the children's health care service into the adult health care service: a review of the literature

Adolescents with diabetes have unique health needs, which impact upon their transition from children's health care services into adult health care services. These health needs result from the precarious period in their lives, when they have to cope with the stresses of being a maturing person. This coincides with their move from the children's into the adult health care service. Whilst coping with these pressures they must also keep their diabetes under control. The impact of emotional and physical demands upon the adolescent means that they are more susceptible to non-adherence, which may result in reduced diabetic control. This literature review identifies some of the many barriers erected to the transition into the adult health care system; these barriers may be constructed by any one of the parties involved: the children's health care team, adult health care team, the adolescent or their family. Principles of a successful transition are explored, along with the prerequisite qualities required of health care providers and the health care service.     

A model for transition from pediatric to adult care in cystic fibrosis

With improved medical technology, many chronic medical conditions of childhood are now recognized as conditions of childhood onset. Appropriate treatment of these conditions in the adult patient is required. The pediatric setting is not appropriate in terms of philosophy, service delivery, and relationship with the patient. To design a suitable transition protocol, a survey of teenage patients with cystic fibrosis was carried out and the process was discussed with the relevant clinicians. The results of the survey indicated that young people identified transition to an adult service as necessary and accepted, provided that good preparation is given from the pediatric setting. This article provides a detailed example of a model of transition for cystic fibrosis services to encourage practice and evaluation of provision.     

Experiences of adolescents with Cystic Fibrosis during their transition from paediatric to adult health care: a qualitative study of young Australian adults

Purpose:?Exploring the experiences of Australian adolescents with Cystic Fibrosis (CF) as they made the transition from paediatric to adult care. This often traumatic change of care was examined from the perspective of the two types of care, paediatric and adult, elements of a transition programme if available and psychosocial factors that may affect the transition.

Method:?Focused-in-depth interviews were conducted with six young adults with CF(19?–?34 years), asking them to describe their experiences during the transition period.

Results:?Thematic analysis of the transcribed interviews indicated that the four main areas that affected the transition experiences of the participants were paediatric and adult health care, the elements included in the transition programme, and psychosocial factors.

Conclusions:?The relationship of the patient with their paediatric doctor, the doctor's attitude towards the transition and the delivery of age-appropriate care appeared to influence the experiences of adolescents as they changed to adult care. Successful elements of a transition programme, if it was offered, were the orientation tours, the provision of information and the presence of a familiar face at adult clinics. Transition experiences of individuals had potential effects on their psychological and physical well-being so that, in order to maximize quality of care, health professionals must be aware of factors which may improve transition experiences.     

Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: a qualitative study of young Australian adults

Purpose: Exploring the experiences of Australian adolescents with Cystic Fibrosis (CF) as they made the transition from paediatric to adult care. This often traumatic change of care was examined from the perspective of the two types of care, paediatric and adult, elements of a transition programme if available and psychosocial factors that may affect the transition.

Method: Focused-in-depth interviews were conducted with six young adults with CF(19 - 34 years), asking them to describe their experiences during the transition period.

Results: Thematic analysis of the transcribed interviews indicated that the four main areas that affected the transition experiences of the participants were paediatric and adult health care, the elements included in the transition programme, and psychosocial factors.

Conclusions: The relationship of the patient with their paediatric doctor, the doctor's attitude towards the transition and the delivery of age-appropriate care appeared to influence the experiences of adolescents as they changed to adult care. Successful elements of a transition programme, if it was offered, were the orientation tours, the provision of information and the presence of a familiar face at adult clinics. Transition experiences of individuals had potential effects on their psychological and physical well-being so that, in order to maximize quality of care, health professionals must be aware of factors which may improve transition experiences.     

Preferences for health care and self-management among Dutch adolescents with chronic conditions: A Q-methodological investigation

Background

Adolescents with chronic conditions have to learn to self-manage their health in preparation for transitioning to adult care. Nurses often struggle with how to approach youth with chronic conditions successfully. Little is known about the preferences and attitudes of these young people themselves.

Objective

To uncover preferences for self-management and hospital care of adolescents with various chronic conditions.

Design and method

A Q-methodological study was conducted. Semi-structured interviews were held with adolescents who rank-ordered 37 opinion statements on preferences for care delivery and self-management. They were asked to motivate their ranking. By-person factor analysis was conducted to uncover patterns in the rankings of statements. The factors were described as preference profiles.

Participants and setting

A purposive sample of 66 adolescents (12-19 years) treated in a university children's hospital in the Netherlands was invited to participate. Thirty-one adolescents, 16 boys and 15 girls with various chronic conditions eventually participated (response 47%). Eight participants (26%) had a recently acquired chronic condition, while the rest (74%) had been diagnosed at birth or in the first 5 years of life.

Results

Four distinct preference profiles for health care delivery and self-management were identified: ‘Conscious & Compliant’; ‘Backseat Patient’; ‘Self-confident & Autonomous’; and ‘Worried & Insecure’. Profiles differ in the level of independence, involvement with self-management, adherence to therapeutic regimen, and appreciation of the parents’ and health care providers’ role. The desire to participate in treatment-related decisions is important to all preference profiles. The profiles are recognizable to adolescents and nurses alike. As Q-methodology allows no inferences with respect to the relative distribution of these profiles in a given population, only tentative hypotheses were formulated about associations between profiles and patient characteristics.

Conclusion

This study increases our understanding of different subjectivities of adolescents living with a chronic condition related to their treatment and health. There is no “one size fits all” approach to adolescent health care, but rather a limited number of distinct preference profiles. This study demonstrates the value of a non-disease-specific approach in that adolescents with various chronic conditions were found to have much in common. The profiles seem a promising tool for nurses to actively seek adolescents’ opinion and participation in health care and will be further explored.     

Maternal factors and the emotional and behavioural functioning of adolescents with chronic health conditions

Purpose: This study investigated the association between mothers’ mental health and education and the emotional and behavioural functioning of adolescents with chronic health conditions over time. Methods: Data were drawn from an ongoing study. Study participants (N?=?363) were recruited through eight children’s rehabilitation centres. Logistic regression models were estimated. Results: There were significantly reduced odds that girls would display clinical signs of hyperactivity/inattention one year later compared to boys when a maternal mental health condition was present (OR?=?0.10; p?p?p?Conclusions: Findings support a link between maternal factors and emotional and behavioural functioning in adolescents with chronic conditions. A holistic and family-centred approach to assessment and service delivery is indicated.

• Implications for Rehabilitation

• When conducting clinical assessments, service providers should consider associations between maternal education and mental health and the emotional and behavioural functioning of adolescents with chronic health conditions.

• A holistic and family-centred approach to assessment and service delivery is indicated to ensure adolescents with chronic conditions and their families receive support for interrelated needs.

     

Cystic fibrosis: transition from paediatric to adult care

There is a current caseload of 350 children with cystic fibrosis at the Royal Brompton Hospital, and adult caseload of more than six hundred. Approximately 100 young people aged between 13 and 18 will transfer to adult care during the next five years. The transfer process between services was identified to be in need of review. The initial objectives were to review current practice for young people ready to transfer from paediatric to adult care, and to assess the needs of the professional, patient and caregivers at this time. In June 2000, a new system was introduced to the families, which offered them joint transition consultations with paediatric and adult cystic fibrosis care teams. A hospital-wide standard for transition was approved. In June 2002 an audit of the transition clinic system indicated an improvement in the process of transfer from paediatric to adult care. However, further service development is required to cater for the challenges and individual needs of adolescents.     

Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes

OBJECTIVES— To determine whether a systems navigator service, The Maestro Project, could increase medical surveillance for young adults with type 1 diabetes who transfer from pediatric to adult care.RESEARCH DESIGN AND METHODS— There were two cohorts of participants: 1) a younger group (aged 18 years, n = 82) who had the assistance of the navigator as they graduated from pediatric care and 2) an older group (aged 19–25 years) who were transferred to adult care without this initial support but later enrolled in the program.RESULTS— Of the older group (who did not have initial access to the navigator), 40% dropped out of adult medical care, compared with a dropout rate of 11% for the younger group, who had access to the navigator at the time of transfer from pediatric care.CONCLUSIONS— The systems navigator helped improve medical surveillance for both groups, although there was no evidence of improved short-term medical outcomes.The passage from childhood to adulthood can be challenging for young people and their families. For youth with type 1 diabetes, this transition is made more difficult because it is accompanied by changes in their health needs and health care delivery systems. Current models have been ineffective in helping young adults make the transition from pediatric to adult diabetes care (1–8). Building Connections: The Maestro Project uses a systems navigator model to assist young adults with type 1 diabetes, aged 18–25 years, as they transition from pediatric to adult diabetes services in Manitoba, Canada. The systems navigator, an administrative project coordinator called The Maestro, maintains telephone and e-mail contact with young adults to provide support and help identify barriers to accessing health care services. The Maestro works closely with community-based diabetes education services in the province to facilitate follow-up and enhance community linkages.The Maestro Project uses several methods of service delivery including a comprehensive website (www.maestroproject.com), a bimonthly newsletter, a monthly, casual evening drop-in group, and educational events. These events are designed to encourage socialization with peers and to facilitate relationships with diabetes educators, endocrinologists, researchers, and other service providers.The objective of The Maestro Project was to increase the rate of medical and educational follow-up for young adults with type 1 diabetes and, thus, reduce morbidity and mortality from complications. The initial phase of this project, the pilot study to test the feasibility and acceptability of this transitional support and systems navigator service, has been published (9). The Maestro Project has been recognized as a promising practice model for this vulnerable population. The purpose of this article is to report the clinical outcomes and to identify barriers to care for young adults with type 1 diabetes after transfer from pediatric to adult care in Manitoba.     

Transitioning to adult health care facilities for young adults with a chronic condition

Youth with chronic conditions and special health care needs are surviving into adulthood. In certain circumstances, these youth may choose to remain with their pediatricians for their health care needs. However, most youth will require complex coordinated care in order for them to live full and productive lives to the best that they are able. Issues such as independence and dependence, educational and vocational choices, and insurance are important in transitioning to an adult-focused system of health care. This article addresses strategies that will assist young adults with the process of transitioning from pediatric care centers to adult health care centers. Despite the importance of providing a transition program, few transition programs exist for young people with chronic conditions (Sawyer, Blair, & Bowes, 1997). This article will also discuss barriers to the transition process.     

Becoming a community matron: the transition from acute to primary care

Community matrons are an important part of the policy of community-based management of long-term conditions. In contrast to some early conceptions of the role, community matrons can come from all areas of nursing. This article draws together two personal accounts by nurses from one primary care trust who have made the transition from acute care to community matron, and highlights the learning process they and their colleagues have undergone.     

Role transition from student nurse to staff nurse: Facilitating the transition period

BackgroundUndergraduate nursing programmes are designed to equip student nurses with the skills and knowledge necessary for their future work as professional nurses. Influences on the role during the transition period from student to staff nurse are unclear.PurposeThis paper explores the experience of role transition for newly-qualified nurses from an Irish perspective.MethodsA Heideggerian Hermeneutic approach was the research method adopted. Ten newly qualified nurses from one of Dublin's Academic Teaching Hospitals were interviewed. Data were analysed using Van Manen's thematic analysis. Influences on the transition period were explored in the context of Chick and Meleis's Transition Concept.FindingsNewly-qualified nurses initially felt excited upon qualification. However, professional responsibility and accountability associated with the new role were overwhelming for participants. They felt frustrated when they didn't receive adequate support during transition.ConclusionNewly-qualified nurses need support while they incorporate their knowledge into clinical practice. Hidden influences should as education levels and scope of practice should be considered before nurse educators begin to develop education programmes for undergraduate nurses.