RESUMEN
Pediatric rheumatic diseases (PRDs) are a heterogeneous group of diseases that can have a chronic unpredictable disease course that can negatively affect mood, functioning, and quality of life. Given the range of difficulties faced in managing PRDs, as well as the psychosocial issues youth with these diseases experience, pediatric psychologists can be well suited to address concerns that arise in care for youth with PRDs including adherence, cognitive assessment, pain management, functional disability, and mood. Potential ways that pediatric psychologists can address these concerns and be embedded within an interdisciplinary treatment plan for youth with PRDs are described.
Asunto(s)
Calidad de Vida , Enfermedades Reumáticas , Humanos , Enfermedades Reumáticas/psicología , Enfermedades Reumáticas/terapia , Niño , Adolescente , Manejo del Dolor/métodosRESUMEN
Postural Orthostatic Tachycardia Syndrome (POTS) is a complex autonomic disorder characterized by an abnormal increase in heart rate upon orthostatic change. While primarily described in its effect on the autonomic and cardiovascular system, it can cause significant functional impairment, leading to a diminished quality of life (QoL). This review paper aims to delve into the multifaceted dimensions of QoL in individuals with POTS by providing a conceptual model to discuss factors influencing QoL. Current QoL assessments used in the POTS population and their findings are described for each domain in this conceptual model. Limitations to this body of research include the literature having no consensus in the most appropriate measure of QoL to use for individuals with POTS, the absence of a POTS-specific measure of QoL, and current measures not assessing concerns germane to this population. The authors emphasize the necessity of a POTS-specific measure to be developed to improve our assessment and understanding of how living with POTS impacts QoL.
Asunto(s)
Sistema Cardiovascular , Síndrome de Taquicardia Postural Ortostática , Humanos , Calidad de Vida , Sistema Nervioso Autónomo , Frecuencia Cardíaca/fisiologíaRESUMEN
BACKGROUND: Pediatric programs focused on treating chronic pain often do not include an educational liaison (EL) to coordinate services between the patient's medical home and school. As chronic pain in youth can have deleterious effects on school functioning, collaboration between the medical home and the school system are needed to assure these students receive appropriate accommodations. CONTRIBUTIONS TO THEORY: This manuscript describes a model of coordinated care for students with chronic pain that includes a systemic strategy for collaborative care across settings. Specifically, the role of an EL is described in the context of advocating for the patient to receive appropriate educational accommodations. CONCLUSIONS: This paper provides a guide for caregivers and professionals to assure appropriate access to support services across settings. Recommendations are included for school accommodations and services to improve academic functioning and outcomes for students with chronic pain.
Asunto(s)
Dolor Crónico , Adolescente , Niño , Humanos , Dolor Crónico/terapia , Instituciones Académicas , Estudiantes , Atención Dirigida al PacienteRESUMEN
PURPOSE: To explore parental experiences in personal functioning and parenting associated with having a child experiencing chronic non-cancer pain. METHODS: Parents with children experiencing chronic pain were asked to fill out a survey prior to their initial Pediatric Pain Clinic or Pain Psychology appointment at a children's hospital in the southeastern United States. A retrospective analysis of qualitative data was conducted. Qualitative results from open-ended survey questions will be focused on within this manuscript. FINDINGS: A total of 288 surveys were collected in this study, with 243 participants answering at least one qualitative question. Of participants who responded to open-ended survey questions, there were 88 responses to a question related to parental change, 73 to parental impact, and 239 to goals of the visit. Through thematic analysis, five qualitative themes were identified: Pain Central: The Hub, Juggling Life, Suffering Side by Side, Unrealized Dreams, and Gettin' it Under Control. DISCUSSION: Parents do experience alterations in personal functioning and parenting as a result of having a child that experiences chronic non-cancer pain. Parents face struggles in many aspects of life including emotions, work, and interpersonal relationships. Theoretical considerations were discussed. APPLICATION TO PRACTICE: Understanding the experiences parents have in raising a child with chronic pain is important in helping health care providers to recognize that this population may need interventions. This also assists in informing patient treatment, improving patient and parent care outcomes, and educating clinicians on how to better support parents.
Asunto(s)
Dolor Crónico , Niño , Humanos , Adolescente , Dolor Crónico/terapia , Dolor Crónico/psicología , Analgésicos Opioides , Estudios Retrospectivos , Padres/psicología , Responsabilidad Parental , Investigación CualitativaRESUMEN
Postural orthostatic tachycardia syndrome (POTS) is an autonomic dysfunction that impairs quality of life (QoL). Increased familiarity with the lived experiences of youth with POTS better informs our understanding of this condition and its impact on QoL, provides context and depth to existing research, and improves patient-centered care. Thus, this qualitative study seeks to develop a more robust understanding of QoL in this understudied population. Youth with POTS (N = 6) and their parents (N = 8) participated in semi-structured interviews. Following saturation, data were analyzed via conventional content analysis, including code/theme identification and member-checking. Four themes were identified (1) negative changes in functioning, (2) invalidation and difficulties living with an invisible condition, (3) trust and advocacy, and (4) need for increased resources and understanding. Findings suggest POTS negatively impacts adolescents' QoL across domains. Based on participants' responses, developing POTS-specific resources and integrating mental health services into interdisciplinary POTS treatment may improve youth's QoL.
Asunto(s)
Síndrome de Taquicardia Postural Ortostática , Humanos , Adolescente , Síndrome de Taquicardia Postural Ortostática/terapia , Calidad de Vida , Frecuencia Cardíaca/fisiología , Estado de SaludRESUMEN
Pediatric rheumatic diseases (PRDs) are a heterogeneous group of diseases that can have a chronic unpredictable disease course that can negatively affect mood, functioning, and quality of life. Given the range of difficulties faced in managing PRDs, as well as the psychosocial issues youth with these diseases experience, pediatric psychologists can be well suited to address concerns that arise in care for youth with PRDs including adherence, cognitive assessment, pain management, functional disability, and mood. Potential ways that pediatric psychologists can address these concerns and be embedded within an interdisciplinary treatment plan for youth with PRDs are described.
Asunto(s)
Calidad de Vida , Enfermedades Reumáticas , Adolescente , Niño , Humanos , Manejo del Dolor , Enfermedades Reumáticas/complicaciones , Enfermedades Reumáticas/terapiaRESUMEN
OBJECTIVES: To assess the impact of preappointment surveys and reminder phone calls on show rate and time spent in new patient appointments at a multidisciplinary pediatric chronic pain clinic. STUDY DESIGN: We examined show rates and appointment length during the 1-year period before and 1-year period after a preappointment survey and phone reminders were implemented. Fisher exact test was used for categorical variables and Student's t test with equal variances was used for continuous variables. METHODS: The setting was a multidisciplinary pediatric chronic pain management clinic in Florida. Participants were 362 patients scheduled for an initial pain clinic evaluation 1 year prior to and after the implementation of a preappointment survey on August 19, 2019. Our main outcome measures were show rate and appointment length. RESULTS: Patients who completed a preappointment survey were significantly more likely to attend their clinic appointment than noncompleters (97.2% vs 36.2%) and spent significantly less time in their appointment. CONCLUSIONS: With new patients, preappointment surveys can improve clinic show rate and decrease time spent in initial appointments. Clinics may consider policies targeting completion of preappointment surveys to assist with show rate, but they must consider their patients' barriers to completing surveys so access to care is not limited.
Asunto(s)
Cooperación del Paciente , Sistemas Recordatorios , Citas y Horarios , Niño , Humanos , Encuestas y Cuestionarios , TeléfonoRESUMEN
Coronavirus (COVID-19) has affected opportunities available to psychology interns and postdoctoral fellows completing capstone training experiences during culminating training years. While research supports COVID-19 has increased the use of telepsychology services amongst psychologists, there is a paucity of research regarding how COVID-19 has altered training and use of telepsychology by psychology trainees. The current study includes survey responses from 59 psychology training directors and 58 psychology internship and postdoctoral fellowship trainees at pediatric sites throughout the United States. Results support changes in telepsychology training provided during COVID-19, including increased use of telepsychology for clinical service delivery and increased use of telesupervision for training. As expected, findings suggest novel training experiences in telepsychology for trainees within the last two years as a result of COVID-19. Given ongoing need for telepsychology services to assure access to psychological care during the pandemic and beyond, results provide support for graduate and advanced training programs to provide formal training in best-practices for utilization of telepsychology and telesupervision.
Asunto(s)
COVID-19 , Internado y Residencia , Adolescente , Niño , Estados Unidos , Humanos , Pandemias , Becas , FamiliaRESUMEN
The coronavirus pandemic and in-person contact restrictions necessitated rapid implementation of telehealth, specifically videoconferencing, to provide essential care to patients. This study surveyed 25 pediatric behavioral health providers at a single center during their first month of utilizing telehealth during coronavirus disease 2019 (COVID-19). Twenty-one participants completed a pre-questionnaire distributed prior to telehealth service delivery, and 23 providers completed a post-questionnaire approximately three weeks later. Results indicate the majority of behavioral health providers had no experience providing telehealth services prior to COVID-19. The majority of participating behavioral health providers utilized telehealth to provide pediatric patient care within the first month of access to telehealth. Participants' confidence in their ability to provide telehealth services significantly increased within the first month of implementation, regardless of previous training in telehealth. This study identified differences between anticipated and actual barriers to treatment, with technological issues identified as the largest actual barrier to service delivery. Participants indicated a preference for in-person service delivery, which they reported allows for better rapport-building, behavioral observations, reduced technological barriers, and fewer distractions. However, most participants reported they intend to continue utilizing telehealth for certain types of behavioral health services (e.g., diagnostic interviews and outpatient therapy) after the pandemic has subsided.
Asunto(s)
COVID-19 , Telemedicina , Niño , Servicios de Salud , Humanos , Pandemias , Encuestas y CuestionariosRESUMEN
OBJECTIVE: The current study employed the Temporal Self-Regulation theory (TST) to determine if self-regulatory capacity and prepotent behaviour moderate the relationship between intention and health behaviours (i.e., physical activity, and healthy eating) in college students. DESIGN: 220 students were surveyed across two time points to assess past/intended behaviour (Time 1) and follow-up behaviour (Time 2). MAIN OUTCOME MEASURES: To address limitations in previous research, self-regulatory capacity was assessed using an ecologically valid rating scale (Barkley Deficits in Executive Functioning Scale). Multi-item assessment measures were utilised for physical activity (International Physical Activity Questionnaire) and healthy eating (All-Day Screener) behaviours. RESULTS: A link between intention and follow-up behaviour was established and executive functioning (EF) and past behaviours were positively associated with follow-up behaviour. EF had no unique moderation effects on health behaviours, but combinations of Low, Moderate, and High levels of past behaviour and EF demonstrated moderation for physical activity and healthy eating. CONCLUSION: This study demonstrated the utility of the TST in predicting health behaviour and emphasised the mutual necessity of EF and past behaviour in understanding the intention-behaviour relationship. Findings can be used to formulate studies and interventions that reduce barriers to health behaviours, therefore, lessening the need for high self-regulatory abilities.
Asunto(s)
Función Ejecutiva , Conductas Relacionadas con la Salud , Intención , Dieta Saludable/psicología , Ejercicio Físico/psicología , Humanos , Teoría Psicológica , Autocontrol/psicología , Estudiantes/psicologíaRESUMEN
UNLABELLED: Health-related quality of life (HRQoL) is linked to health status in a variety of conditions. Less is known about the relation between quality of life and modifiable health behaviors, especially among medically underserved populations. OBJECTIVE: The purpose of the current study was to examine HRQoL as it relates to physical activity, sedentary behavior, and eating patterns in youth residing in Southern Appalachia. METHODS: The Pediatric Quality of Life Inventory and questions on physical activity and eating behaviors was completed by 152 sixth grade students in a regional sample of schools participating in the Winning with Wellness child obesity prevention project. RESULTS: The current study found higher physical activity levels and lower levels of screen time to be associated with reports of more positive HRQoL. CONCLUSIONS: A more comprehensive understanding of factors surrounding health behavior may hold implications for obesity prevention/intervention programs.