Healthcare Transition Among Young Adults With Childhood-Onset Chronic Pain: A Mixed Methods Study and Proposed Framework

Chronic pain extends from childhood to adulthood for many young people. The transition from pediatric to adult care is a critical, yet understudied, healthcare task facing young adults with chronic pain. The aims of this observational, sequential mixed methods study were to 1) document the healthcare transition status of young adults with chronic pain (Stage 1, quantitative aim), 2) examine young adults’ perspectives of barriers and facilitators of healthcare transition (Stage 2, qualitative aim), and 3) integrate findings to construct a theoretical framework of healthcare transition. A cohort was identified with childhood chronic pain and prior care in one of 15 multidisciplinary pediatric pain clinics across the United States and Canada. Approximately 6 years later, 189 young adults (M age = 21.0; age range = 18–24; 81.5% female) from this cohort with continuing chronic pain completed surveys for Stage 1, and a subsample (n = 17) completed qualitative interviews for Stage 2. Quantitative findings demonstrated that young adults may experience lapses in care, with 41.8% indicating they had not transitioned to adult pain services. Qualitative analysis revealed young adults experienced significant barriers (eg, abrupt departure from pediatric care) as well as facilitators (eg, acceptance of pain prognosis) of healthcare transition. Quantitative and qualitative findings were integrated to construct a healthcare transition framework for chronic pain, which highlights transition as a complex process involving multiple pathways, outcomes, and stakeholders. Advancements in research and practice are needed to develop transition services to bridge gaps in care and optimize health outcomes for young people with chronic pain.PerspectiveThis mixed-methods study demonstrated that 41.8% of young adults with chronic pain experience lapses in adult-centered pain care and identified key barriers and facilitators to successful healthcare transition. Findings were integrated to construct the first healthcare transition framework for youth with chronic pain.     

Environmental needs and facilitators available for children and adolescents with cerebral palsy: adaptation and validation of the European Child Environment Questionnaire (ECEQ) Spanish version

Abstract

Purpose: The objective of this study is to present the process of translating, adapting and validating the European Child Environment Questionnaire (ECEQ) in the Spanish context. Method: The participants were 200 parents of children and adolescents with cerebral palsy (CP) aged 8–18 years, from seven regions in Spain. The adaptation of the ECEQ original version was carried out through the translation and back translation into Spanish. Construct validity was assessed by Factor analysis, Rasch model, and analysing group differences in need and availability of environmental features (EFs) according to level GMFCS. Results: We obtained a high rate of parental response. The ECEQ Spanish version contains 59 items and we identified four domains: Products and technology – home, school and community – services, systems and policies, support and relations, and Attitudes. Seventeen items were dropped as they did not fit well into plausible domains. Construct validity in terms of distinguishing between groups with expected for both need and availability. Conclusion: The ECEQ Spanish version was more appropriate to assess the needs of and access to EFs in the following domains: Products and technology and services, systems and policies, and it proved less appropriate for the support and relations, and attitudes domains.

• Implications for Rehabilitation

• Identification of barriers and environmental facilitators are key aspects to ensure the participation of children and adolescents with CP.

• The ECEQ is a useful tool for identifying needs and availability of the environmental features for children and adolescents with CP in Spain.

• This tool contains 59 items that are consistent with ICF framework.

• The Spanish version of ECEQ provides valuable information, which could be helpful to guide public services and organization services in order to optimize participation of children and adolescents with CP.

     

Transitional rehabilitation goals for people with spinal cord injury: looking beyond the hospital walls

Abstract

Purpose: This study aimed to identify, describe and classify the transitional rehabilitation goals of people with spinal cord injury (SCI) and map these goals to the International Classification of Functioning, Disability and Health (ICF). Method: The five most important rehabilitation goals as rated by clients were extracted from records for 220 clients of a transitional rehabilitation service for people with SCI in Australia over a 5-year period. These goals were thematically classified into domains and then mapped to the ICF framework. Goals were compared across age, gender, length of hospital stay, compensation status, level and completeness of injury. Results: A total of 1100 goals were classified into 18 different goal domains, representing most aspects of the ICF framework. Age was negatively related to vocational goals. Length of hospital stay was positively related to personal care goals but negatively related to community access and vocational goals. Goals did not differ across gender or compensation status but did differ across level and completeness of injury. Conclusions: People with SCI have a range of transitional rehabilitation goals that represent most aspects of the ICF framework. Client-centred community rehabilitation during this transition period offers continuity of care to support the realisation of these rehabilitation goals.

• Implications for Rehabilitation

• Transitional rehabilitation is a relatively new community service model in the rehabilitation literature, especially for people with spinal cord injury.

• Client-centred goal setting is integral to these types of community rehabilitation models.

• Rehabilitation goals in transitional rehabilitation are varied and map well to the International Classification of Functioning, Disability and Health (ICF) with a focus on environmental goals.

• A typology of rehabilitation goals in this setting will assist in service planning and evaluation of hospital and community rehabilitation services.

     

Adolescents with disabilities participate in the shopping mall: facilitators and barriers framed according to the ICF

Purpose: Community participation is restricted for youth with disabilities. The mall is an important gathering place where adolescents often socialise and develop community living skills, yet participation may be restricted. The aim of this study was to evaluate the facilitators and barriers to participation in a shopping mall through the perspectives of adolescents with disabilities.

Method: Semi-structured individual interviews were conducted with adolescents aged 12–19 years with a physical and/or sensory disability. Audio recordings were transcribed verbatim and coded following a template analysis using the International Classification of Functioning Disability and Health (ICF).

Results: Eleven youth (six females, mean age?=?17.0 years) participated. Medical conditions included visual impairment, hearing impairment, cerebral palsy, hemiplegia, osteogenesis imperfecta and congenital amputations. Six themes were identified by the adolescents: what the shopping mall means to me, physical environment, transportation, social factors, attitudes and the person. The majority of themes mapped to the ICF’s ‘environmental factors’.

Conclusions: Facilitators and barriers identified were either generic or disability-specific, implying that some modifications to shopping malls may be beneficial across disability types. Changes made to the physical, social and attitudinal environment are required to enable full participation of youth with disabilities within a shopping mall and other built environments of high public access.

• Implications for Rehabilitation

• The meaning of the shopping mall according to youth with disabilities includes socialisation, shopping, getting out of the home and employment.

• The majority of themes mapped to ‘environmental factors’ indicating that most obstacles to participation are caused by environmental barriers.

• Facilitators and barriers identified were either generic or disability-specific implying that some modifications to shopping malls may be beneficial across disability types.

• Changes made to the physical, social and attitudinal environment are required to enable full participation of youth with disabilities within a shopping mall.

     

The role of the ICF in physical therapy and vocational rehabilitation: contributing to developments in occupational health

Abstract

Background: Vocational rehabilitation is implemented to ensure and sustain return to work. Different healthcare professionals are involved in the process of vocational rehabilitation and physical therapists are in the forefront of providing vocational rehabilitation services. A comprehensive conceptual framework is required, so appropriate and adequate vocational rehabilitation can be provided by physical therapists. The international classification of functioning, disability, and health (ICF) by the World Health Organization can provide such a framework.

Objective: This paper will discuss recent developments in the field where the ICF has been used in vocational rehabilitation, how such usage will benefit physical therapy practice, and priority areas that need to be addressed in the near future.

Discussion: The ICF has been used in multiple ways in vocational rehabilitation in which physical therapists can play a major role. To better understand and measure work disability, the ICF can be used as a basis for a conceptual definition of vocational rehabilitation and as a tool to develop or select functioning domains and measurement instruments relevant to vocational rehabilitation.

Conclusion: The ICF is a viable option for physical therapists to understand and facilitate the process of vocational rehabilitation towards better return to work outcomes. Physical therapists, as one of the primary health professionals engaged in vocational rehabilitation, will benefit from using a reference framework like the ICF in their clinical practice and research.     

Exploring use of the ICF in health education

Abstract

Purpose: Currently, little is known regarding use of the International Classification of Functioning, Disability and Health (ICF) in health education applications. Therefore, this review sought to examine the scope of work that has been conducted regarding the application of the ICF in health education. Methods: A review of the current literature related to use of the ICF in health education programs was conducted. Twelve electronic databases were searched in accordance with a search protocol developed by a health sciences librarian. In total, 17?878 records were reviewed, and 18 articles met the criteria for inclusion in this review. Results: Current evidence regarding use of the ICF in healthcare education revealed that program and participant properties can be essential facilitators or barriers to successful education programs. In addition, gaps in comprehensive outcome measurement were revealed as areas for future attention. Educational applications of the ICF are very much a work in progress as might be expected given the ICF’s existence for only a little over a decade. Conclusions: To advance use of the ICF in education, it is important to incorporate the measurement of both knowledge acquisition and behavior change related to ICF-based programs. Ultimately, widespread implementation of the ICF represents not only a substantial opportunity but also poses a significant challenge.

• Implications for Rehabilitation

• ICF integration in health education is a relatively new, but growing phenomenon that is primarily limited to developed educational and healthcare systems.

• When incorporating the ICF into health education initiatives, special consideration should be paid to both the intended audience and the method of delivery.

     

Evaluating pain in cerebral palsy: comparing assessment tools using the International Classification of Functioning,Disability and Health

Abstract

Purpose: Pain is prevalent and affects functioning and quality of life of children with cerebral palsy (CP). However, pain in CP is under recognized. The International Classification of Functioning, Disabiity and Health (ICF) guides the selection of comprehensive chronic pain assessment tools. Our objectives were to identify measures addressing pain in children with CP, characterize the content of each measure using the ICF, and identify gaps and overlaps.

Materials and methods: Measures were identified from: (1) a systematic review of outcome measures (1998–2012) and (2) a scan of chronic pain measures (2013–2015). Included measures were those published in English, used in children and youth with CP, and contained an item/domain addressing pain. Constructs of the measures were linked to the ICF.

Results: Overall, 31 measures addressing chronic pain in CP were included. Considerable variability was found in the degree to which their content represented the ICF. Most of pain measures address pain intensity and pain location (body functions) as opposed to functional impact of pain (activities and participation).

Conclusions: Functional dimensions are poorly represented in pain measures. Our findings may guide the selection of measures for research and clinical needs for comprehensive chronic pain management in children with CP.

• Implications for Rehabilitation

• Chronic pain is prevalent among children with cerebral palsy and significantly interfere with functional activities.

• To effectively manage chronic pain in children with cerebral palsy, measures capturing functional-based information need to be part of routine chronic pain assessment.

     

Stages of change in physical activity behavior in children and adolescents with cerebral palsy

Abstract

Purpose: To identify facilitators and barriers frequently experienced by families of children with cerebral palsy (CP) and associated with being at the pre-intention, intention and action stages for physical activity. Method: Qualitative study involving in-depth focus group interviews with 33 ambulatory children and adolescents with CP and their parents (n?=?33). These interviews were followed by questionnaires to determine stage of behavior change (i.e. pre-intention, intention and action) related to the child’s participation in physical activity. Results: Families who were classified in the intention stage of behavioral change were more likely to identify environmental barriers related to the social environment and the facility or program than parents at the pre-intention stage. Families who were classified into intention and action stages were more likely to identify facilitators related to parental factors than families at the pre-intention stage. Moreover, at the action stage facilitators were related to the facility/program. Conclusions: The identified facilitators and barriers, organized according to three stages of change (pre-intention, intention and action), provide important theoretical insights into how and why children and adolescents with CP and their parents might change their physical activity behavior.

• Implications for rehabilitation

• Understanding the barriers and facilitators of physical activity for children and adolescents with CP is essential for designing effective interventions to promote participation in this group.

• Using the three stages of change and the identified barriers and facilitators for participation can result in tailored advice to increase physical activity behavior.

     

Content comparison of guideline-recommended instruments used in treatment for alcohol use disorders

Purpose: Practice guidelines recommend the use of standardized instruments in the treatment of alcohol use disorders (AUDs); however, the extent to which these instruments assess patients’ functioning is unclear. The aim of this study was to examine the domains of functioning and contextual factors contained in guideline-recommended instruments, using the International Classification of Functioning, Disability, and Health (ICF) as a reference.

Materials and methods: We identified instruments by reviewing AUD treatment guidelines used in Germany, Canada, Australia and New Zealand, United Kingdom, and United States. We included instruments which were available in English free of charge, we excluded instruments developed solely for diagnostic or epidemiological purposes and those for children or adolescents. Following a standardized set of rules, two health care researchers identified the concepts contained in the items on the instruments and independently linked them to ICF categories.

Results: A total of 10 instruments were included. Among 517 items, 752 meaningful concepts (MCs) were derived, and 622 of them were linked to the ICF. Inter-rater agreement was κ?=?0.61. One hundred eighty eight MCs referred to personal factors, 175 to body functions, 168 to activity and participation, and 91 to environmental factors. The most frequently linked ICF chapter was b1 (mental functions).

Conclusions: Instruments recommended in AUD treatment guidelines vary considerably in their assessment of patients’ functioning and contextual factors. Within the investigated instruments, environmental factors are under-represented in comparison to body functions and personal factors. ICF linkage provides guidance for clinicians and researchers in the selection of appropriate instruments.

• Implications for rehabilitation

• Since instruments that are recommended in alcohol treatment guidelines vary considerably in respect the functioning domains and context factors they cover, it may be challenging for clinicians to select instruments relevant to their treatment context.

• Using the ICF as framework, our results provide guidance for clinicians in how to select appropriate instruments.

• Within the investigated instruments, environmental factors and activities and participation are under-represented in comparison to body functions and personal factors. Clinicians may employ AUD-unspecific or ICF-based instruments to cover these components if needed.

     

Applications of the International Classification of Functioning,Disability and Health in goal-setting practices in healthcare

Abstract

Purpose: While evidence exists to support the adoption of collaborative goal-setting in healthcare, some clinicians feel that it is not feasible. This article proposes that the development of a standardized collaborative goal-setting approach using the framework and classification system of the International Classification of Functioning, Disability and Health (ICF) could address these feasibility issues. It is the objective of this article to understand the extent to which the ICF has been integrated into current goal-setting literature in order to assess its potential use in a standardized collaborative goal-setting approach. Methods: A scoping review of the literature published in English since 2001 was conducted in EMBASE, Medline and CINAHL. Articles were included in this review if they integrated the ICF into goal-setting practices in any healthcare discipline. Results: Nineteen articles were included in this review. Analysis of these articles revealed that the ICF has been integrated into goal-setting practices. The benefits associated with this integration suggest that integrating the ICF into goal-setting practices can standardize collaborative goal-setting. Conclusion: Evidence from this scoping review supports the use of the ICF in healthcare goal-setting practices because it provides clinicians and patients with specific steps to follow when attempting to set goals collaboratively.

• Implications for Rehabilitation

• Collaborative goal-setting.

• Collaborative goal-setting involves patients working with their clinicians to develop health outcome goals together and is a fundamental component of patient-centered care.

• Some rehabilitation disciplines have yet to fully embrace collaborative goal-setting due to feasibility issues.

• This article proposes that the integration of the International Classification of Functioning, Disability and Health (ICF) into goal-setting practices could standardize collaborative goal-setting in a way that would address these feasibility issues.

     

The transition from hospital to home for individuals with acquired brain injury: A literature review and research recommendations

Purpose. To review the literature relating to the transition from hospital to home for individuals with acquired brain injury (ABI) and make recommendations concerning the future direction of transition-specific research.

Method. Relevant research articles were identified through searching existing database systems and by reviewing the reference lists of identified articles. Only articles in which the results directly related to individuals with ABI from the time of discharge to 1 year post-discharge were included in the review.

Results/discussion. A total of 50 articles were identified as meeting the criteria for inclusion in the review. The methodological quality of included articles was evaluated using a set of specific criteria. The articles were classified into the following categories: (i) The perspectives of individuals with ABI and their caregivers; (ii) outcomes for individuals with ABI following transition; (iii) post-discharge services; and (iv) transitional living services/programmes. The majority of articles were based on samples of individuals with stroke, typically aged over 65 years. A common theme identified in the review was that the transition from hospital to home is typically perceived as an exciting yet difficult period for individuals and their families and as such, post-discharge support is critical.

Conclusion. Further ABI transition-specific research is necessary in order to: (i) Develop a comprehensive theoretical framework of the transition phase; and (ii) facilitate both the validation of current intervention strategies and the development of innovative/tailored intervention approaches.     

Perceived barriers to healthcare utilization among Jordanian families: A family centered approach

AimThis study aimed to understand the barriers to health services utilization by Jordanian families.BackgroundAccess to quality healthcare services is a significant issue facing healthcare systems. Healthcare systems must identify and apply measures to overcome barriers that face utilizing health services and thus increase clients' satisfaction.MethodsA cross-sectional qualitative research design was used in this study. Semi-structured interviews were conducted with twenty-five families to elicit the model of health services barriers.ResultsThe analysis of the family interviews led to four main themes related to health services barriers: service system, structural/physical barriers, equipment and medication, and staff competency. This study would increase awareness about underserved populations that avoid seeking medical care.ConclusionPublic health efforts are required to increase awareness about the importance of contacting the healthcare system as early as possible. However, public health policy may require developing new initiatives that reduce these perceived barriers, such as enhancing communication skills among healthcare workers, increasing supervision and inspection of healthcare quality, and enhancing patient engagement by using phone calls and messages as appointment reminders and careful follow-up.     

Transition to adult mental health services for young people with attention deficit hyperactivity disorder in Italy: Parents’ and clinicians’ experiences

Objective. The aim of this study was to describe the experiences of parents and clinicians in relation to the transition from child and adolescent neuropsychiatric services (CANPS) to adult services for people with attention deficit hyperactivity disorder (ADHD) in Italy. Methods. Parents of people with ADHD who reached the transition boundary for CANPS were sampled from the A.I.F.A. association (Italian Association of ADHD Families). We thematically analyzed informative and qualitative questionnaires completed by parents and clinicians. Results. Parents’ (n = 24) and clinicians’ (n = 27) experiences differed slightly on challenges and unmet needs, whereas clinicians agreed on the variables required for an optimal transition process. Poor transition and multiple barriers to such care were identified. Specifically, far fewer people received services, especially public health services, after reaching the age of 18, and perceived barriers included problems with user access, limited transition protocols, poor service coordination, and possible lack of ADHD-related knowledge on the part of adult practitioners. Conclusions. Care continuity in mental healthcare remains a need to be prioritized and better defined also for ADHD patients (and their parents). Parents’ and clinicians’ experiences are more likely to be positive if transition management is characterized by a gradual preparation, a period of parallel care, and commonly acknowledged, clear information on available services and how to access them. Identifying the needs and barriers of the people representing the different roles (clinicians, parents, and users) involved in the transition to adult mental health services is of particular importance in designing effective, shared transfer planning procedures.     

A touchy topic: tactile assessment among pediatric therapists

Purpose: Tactile impairments affect over 77% of children with unilateral cerebral palsy (CP). This study aimed to examine the current practices of pediatric therapists in relation to tactile assessment and the barriers to carrying out tactile assessment in children with CP.

Method: The study was in two parts. In part one, pediatric therapists (n?=?35) completed a questionnaire detailing their current knowledge and the use of tactile assessments in children. In part two, therapists (n?=?12) completed a questionnaire based on the Theoretical Domains Framework examining the barriers and facilitators to completing tactile assessments in clinical practice.

Results: Most therapists (over 90%) carry out tactile assessments in the minority (less than 25%) of children with CP that they treat. Therapists reported the need for improved knowledge/skills (n?=?24) and confidence (n?=?19) in carrying out tactile assessments, alongside the provision of necessary equipment (n?=?17). Qualitative reports also suggested that organizational assessment guidelines and templates may facilitate the implementation of tactile assessment.

Conclusions: A multi-faceted knowledge translation strategy to address the barriers to tactile assessment among pediatric therapists needs to be developed.

• Implications for rehabilitation

• Pediatric occupational therapists and physiotherapists may not be completing tactile assessments according to current evidence-based recommendations.

• Therapists identified five main barriers, including a lack of knowledge, skills, belief in their capabilities (confidence), behavioral regulation (organizational procedures), and environmental context (e.g., equipment).

• Therapists recommended several potential facilitators, including access to necessary equipment, procedures, record sheets, training in tactile assessments, and research supporting related interventions.

• Service providers are encouraged to develop multi-faceted knowledge translation strategies that address these barriers and maximize facilitators.

     

Health care transition for adolescents with special healthcare needs: Where is nursing?

The population of adolescents with special healthcare needs (ASHCN) surviving into adulthood has increased dramatically over the past two decades. Approximately, nine of every 10 children diagnosed with a chronic condition are expected to reach adulthood. Experts estimate nearly 750,000 ASHCN enter into adulthood each year. Advances in medical treatments, new technologies and scientific discoveries have all contributed to the increases in ASHCN life expectancies. As a result, new demands for services have emerged to address their clear needs for long-term services and supports. Foremost among the ASHCN service needs are healthcare transition services. Healthcare transition is recognized as a needed area of practice to facilitate ASHCN transfer of care from pediatric to adult healthcare and to support the acquisition of the developmental competencies needed to successfully transition to adulthood. Yet, few evidence-based and exemplary models of care exist. Healthcare transition research is in the early stages of development. The medical community has provided the leadership with the development of healthcare transition policy, practice, and research. As a result, policymaking, practice issues, and research have a prominent medically related focus. In contrast, the influence of nursing as it pertains to these areas of professional practice is limited. Opportunities exist for pediatric and child health nursing leaders to provide direction for greater involvement in this emerging and growing field of specialty practice.