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1.
Int J Adolesc Med Health ; 36(2): 161-168, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38332697

RESUMO

OBJECTIVES: Music is helpful to young people in healthcare contexts, but less is known about the acceptability of music-based interventions for youth living at home with chronic pain who may be struggling to attend school and participate in social activities. The Songs of Love (SOL) foundation is a national nonprofit organization that creates free, personalized, original songs for youth facing health challenges. The aims of this study were (1) to assess acceptability of SOL from the perspective of youth with chronic pain receiving a song and singer-songwriters who created the songs, and (2) to explore the role of music more generally in the lives of young people living with pain. METHODS: Twenty-three people participated. Fifteen youth (mean age 16.8) were interviewed and received a song, and six singer-songwriters were interviewed about creating the songs. (Two additional people participated in pilot interviews.) Acceptability was assessed by (1) proportion of youth who participated in a second interview about their song and (2) results of reflexive thematic analysis (RTA) to determine acceptability. Themes addressing the role of music in the lives of youth with pain were also explored using RTA. RESULTS: The program was acceptable as 12 of 15 youth (80 %) participated in second interviews and themes met the definition of acceptability. Three themes addressing the role of music in the lives of youth living with pain were identified. CONCLUSIONS: This is the first report of the acceptability and experience of SOL and contributes to research on the benefits of music for pain management.


Assuntos
Dor Crônica , Musicoterapia , Humanos , Adolescente , Dor Crônica/psicologia , Masculino , Feminino , Musicoterapia/métodos , Adulto Jovem , Música/psicologia , Entrevistas como Assunto , Amor
2.
PLoS One ; 17(9): e0272504, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36054195

RESUMO

Recurrent or chronic pain affects 11-38% of children and adolescents. Pediatric pain research typically focuses on risk factors, such as anxiety and parent functional disability, but resilience-building, protective factors also play an important role in the pain experience. New methods to incorporate resilience-enhancing factors into pain research are needed. Photovoice is a highly participatory research method, where participants take photos to address a common question, caption their photos, and discuss the meaning of the photos in a group. The main objective of this study was to determine whether photovoice is an acceptable method to young people living with chronic pain for identifying and sharing sources of joy. Another objective was to explore sources of joy. Sixteen adolescents and young adults participated, which involved meeting in a group to discuss the goal of the study, taking photographs of self-identified sources of joy over a two-week period, and meeting as a group again to discuss the photographs and participate in a focus group about the experience. Results suggest that photovoice is an acceptable method, as all participants took photographs and attended both meetings, and three themes from the focus group data suggested the participants considered photovoice to be appropriate: 1.) Relief associated with meeting peers, 2.) Potential to benefit young people living with pain, and 3.) Potential to raise awareness. Three themes emerged from the discussion of the photographs to describe sources of joy: 1.) Gratitude for everyday pleasures and accomplishments, 2.) Support from pets, and 3.) Journey of acceptance. Results add to the strengths-based literature on pediatric pain by identifying an acceptable method that could be further explored for use as an intervention to enhance protective factors such as positive affect, gratitude, and social support and to compare the experiences of different populations of youth living with pain.


Assuntos
Dor Crônica , Adolescente , Criança , Dor Crônica/terapia , Grupos Focais , Humanos , Fotografação , Fatores de Proteção , Projetos de Pesquisa , Apoio Social , Adulto Jovem
3.
J Cancer Surviv ; 16(3): 624-637, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-34075534

RESUMO

OBJECTIVE: To characterize the prevalence and predictors of concerns regarding future health and cancer risk among siblings of childhood cancer survivors. METHODS: This study reports longitudinal data (baseline and follow-up) from 3969 adult siblings (median age = 29 [range 18-56] years) of long-term survivors of childhood cancer (median time since diagnosis 19.6 [9.6-33.8] years). Self-reported future health and cancer risk concerns (concerned vs not concerned) were assessed. Demographics and health data reported by both the siblings and their matched cancer survivors were examined as risk factors for health concerns using multivariable logistic regression. RESULTS: Percentage of siblings reporting future health and cancer risk concerns, respectively, decreased across decade of survivors' diagnosis: 1970s (73.3%; 63.9%), 1980s (67.2%; 62.6%), and 1990s (45.7%; 52.3%). Risk factors associated with future health concerns included sibling chronic health conditions (grade 2 Odds Ratio [OR]=1.57, 95% CI: 1.12-2.20; grades 3-4 OR=1.86, 95% CI: 1.18-2.94; compared to less than grade 2). Risk factors associated with future cancer concerns included sibling chronic health conditions (grade 2 OR=1.43, 95% CI: 1.05-1.94; grades 3-4 OR=1.64, 95% CI: 1.09-2.47; compared to less than grade 2). CONCLUSIONS: Sibling concerns regarding future health and cancer have diminished in recent decades. There are subgroups of siblings that are at-risk for future health and cancer risk concerns. IMPLICATIONS FOR CANCER SURVIVORS: Routine screening of concerns in at-risk siblings of survivors of childhood cancer may benefit the siblings of cancer survivors. These individuals may benefit from early interventions during diagnosis and treatment of their siblings.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adolescente , Adulto , Criança , Doença Crônica , Humanos , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Neoplasias/terapia , Fatores de Risco , Irmãos , Sobreviventes , Adulto Jovem
4.
J Adolesc Young Adult Oncol ; 10(6): 720-725, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33844938

RESUMO

Purpose: The aims of the current study were to better understand, from the perspective of adolescents and young adults (AYAs) with sarcoma, parents, and providers, the friendship support needs of AYAs with bone and soft tissue sarcoma and the role of social media in facilitating social support for AYAs with sarcoma. Methods: Semistructured interviews were conducted with 21 participants. AYA (n = 10) ranged in age from 14 to 23 years (mean 19.3, standard deviation 3.4 years; 50% female). All AYAs reported a current or past diagnosis of sarcoma, except for one patient who had another cancer diagnosis but was receiving treatment through the sarcoma clinic. Five parents of the adolescent participants were interviewed, as well as six health care providers. Data analysis was conducted using theory-driven immersion/crystallization, incorporating the Resilience in Illness Model as a framework to guide interpretation of the data. Results: Four main themes associated with social support from friends and social media were identified: (1) Social media provides a way to feel normal and connected to friends; (2) Social media accentuates the frustration of being left behind; (3) Social media facilitates the need to be understood by peers who have experienced sarcoma, and (4) Social media can lead to despair, and also provide hope for the future. Conclusions: Connecting with peers through social media can play an important role in providing support for AYAs with sarcoma, but it may also amplify feelings of frustration and anxiety. Future work is needed to determine intervention components that can maximize the benefits of social media for social support of AYAs with sarcoma. Clinical Trial Registration number: NCT03130751.


Assuntos
Neoplasias , Sarcoma , Mídias Sociais , Adolescente , Adulto , Feminino , Amigos , Humanos , Masculino , Pais , Sarcoma/terapia , Sobreviventes , Adulto Jovem
5.
J Pain Res ; 13: 3447-3456, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33376390

RESUMO

PURPOSE: Primary dysmenorrhea (PD; menstrual pain without an identified organic cause) has been proposed as a possible risk factor for the development of chronic pelvic pain, but the mechanism through which this process occurs is unknown. One possible mechanism is central sensitization - alterations in the central nervous system that increase responsiveness to pain leading to hypersensitivity. Repeated episodes of pain, such as those experienced over time with PD, may alter how the brain processes pain. Ecological momentary assessment (EMA; collection of data in real time in participants' natural environments) is a novel data collection method that may help elucidate pain occurring during non-menstrual cycle phases. PATIENTS AND METHODS: The current observational study assessed the feasibility and acceptability of using EMA via text messages to collect pelvic pain data during menstrual and non-menstrual cycle phases in a community sample of adolescents and young adults (AYA) aged 16-24 years with and without PD and explored occurrence rates and intensity of non-menstrual pelvic pain (NMPP) in each of these groups. RESULTS: Thirty-nine AYA with PD and 53 healthy controls reported pelvic pain level via nightly text message. Global response rate was 98.5%, and all participants reported that the EMA protocol was acceptable. AYA with PD reported higher intensity (2.0 vs 1.6 on 0-10 numeric rating scale; p=0.003) and frequency (8.7% vs 3.1% of days; p=0.004) of NMPP compared to healthy controls. CONCLUSION: The EMA protocol was feasible and acceptable. Though both the intensity and frequency of NMPP were low and at levels that would not typically warrant clinical assessment or intervention, these repeated nociceptive events may represent a potential mechanism contributing to the transition from cyclical to chronic pelvic pain in some individuals.

6.
Blood ; 136(10): 1191-1200, 2020 09 03.
Artigo em Inglês | MEDLINE | ID: mdl-32518948

RESUMO

Persons with sickle cell disease (SCD) exhibit subjective hypersensitivity to cold and heat perception in experimental settings, and triggers such as cold exposure are known to precipitate vaso-occlusive crises by still unclear mechanisms. Decreased microvascular blood flow (MBF) increases the likelihood of vaso-occlusion by increasing entrapment of sickled red blood cells in the microvasculature. Because those with SCD have dysautonomia, we anticipated that thermal exposure would induce autonomic hypersensitivity of their microvasculature with an increased propensity toward vasoconstriction. We exposed 17 patients with SCD and 16 control participants to a sequence of predetermined threshold temperatures for cold and heat detection and cold and heat pain via a thermode placed on the right hand. MBF was measured on the contralateral hand by photoplethysmography, and cardiac autonomic balance was assessed by determining heart rate variability. Thermal stimuli at both detection and pain thresholds caused a significant decrease in MBF in the contralateral hand within seconds of stimulus application, with patients with SCD showing significantly stronger vasoconstriction (P = .019). Furthermore, patients with SCD showed a greater progressive decrease in blood flow than did the controls, with poor recovery between episodes of thermal stimulation (P = .042). They had faster vasoconstriction than the controls (P = .033), especially with cold detection stimulus. Individuals with higher anxiety also experienced more rapid vasoconstriction (P = .007). Augmented vasoconstriction responses and progressive decreases in perfusion with repeated thermal stimulation in SCD are indicative of autonomic hypersensitivity in the microvasculature. These effects are likely to increase red cell entrapment in response to clinical triggers such as cold or stress, which have been associated with vaso-occlusive crises in SCD.


Assuntos
Anemia Falciforme/complicações , Microvasos/fisiopatologia , Disautonomias Primárias/patologia , Temperatura , Doenças Vasculares/patologia , Vasoconstrição , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Disautonomias Primárias/etiologia , Doenças Vasculares/etiologia
7.
Cancer ; 126(12): 2915-2923, 2020 06 15.
Artigo em Inglês | MEDLINE | ID: mdl-32227649

RESUMO

BACKGROUND: The objective of this study was to characterize the prevalence and risk of pain, pain interference, and recurrent pain in adult survivors of childhood cancer in comparison with siblings. METHODS: This study analyzed longitudinal data from survivors (n = 10,012; 48.7% female; median age, 31 years [range, 17-57 years]; median time since diagnosis, 23 years) and siblings (n = 3173) from the Childhood Cancer Survivor Study. Survivors were diagnosed between 1970 and 1986 at 1 of 26 participating sites. Associations between risk factors (demographics, cancer-related factors, and psychological symptoms) and pain, pain interference, and recurrent pain (5 years apart) were assessed with multinomial logistic regression. Path analyses examined cross-sectional associations between risk factors and pain outcomes. RESULTS: Twenty-nine percent of survivors reported moderate to severe pain, 20% reported moderate to extreme pain interference, and 9% reported moderate to severe recurrent pain. Female sex, a sarcoma/bone tumor diagnosis, and severe/life-threatening chronic medical conditions were associated with recurrent pain. Depression and anxiety were associated with increased risk for all pain outcomes. Poor vitality mediated the effects of anxiety on high pain and pain interference (root mean square error of approximation, 0.002). CONCLUSIONS: A large proportion of adult survivors report moderate to severe pain and pain interference more than 20 years after their diagnosis. Increased screening and early intervention for pain interference and recurrent pain are warranted.


Assuntos
Sobreviventes de Câncer , Dor/etiologia , Adolescente , Ansiedade/etiologia , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Criança , Pré-Escolar , Depressão/etiologia , Feminino , Humanos , Lactente , Masculino , Neoplasias/terapia , Dor/epidemiologia , Fatores de Risco , Irmãos , Adulto Jovem
8.
Complement Ther Med ; 49: 102334, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-32147052

RESUMO

Pain and vaso-occlusive crises (VOC) are hallmark complications of sickle cell disease (SCD) and result in significant physical and psychosocial impairment. The variability in SCD pain frequency and triggers for the transition from steady state to VOC are not well understood. This paper summarizes the harmful physiological effects of pain and emotional stressors on autonomically-mediated vascular function in individuals with SCD and the effects of a cognitive, neuromodulatory intervention (i.e. hypnosis) on microvascular blood flow. We reviewed recent studies from the authors' vascular physiology laboratory that assessed microvascular responses to laboratory stressors in individuals with SCD. Results indicate that participants with SCD exhibit marked neurally mediated vascular reactivity in response to pain, pain-related fear, and mental stress. Further, pilot study results show that engagement in hypnosis may attenuate harmful microvascular responses to pain. The collective results demonstrate that autonomically-mediated vascular responses to pain and mental stress represent an important SCD intervention target. This ongoing work provides physiological justification for the inclusion of cognitive, neuromodulatory and complementary treatments in SCD disease management and may inform the development of targeted, integrative interventions that prevent the enhancement of autonomic vascular dysfunction in SCD.


Assuntos
Anemia Falciforme/complicações , Hipnose/métodos , Microcirculação , Manejo da Dor/métodos , Dor/etiologia , Estresse Psicológico/etiologia , Estresse Psicológico/terapia , Anemia Falciforme/psicologia , Humanos , Dor/psicologia
10.
J Pediatr Psychol ; 45(4): 359-369, 2020 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-31886865

RESUMO

OBJECTIVE: Pediatric chronic pain evaluation includes self-reports and/or caregiver proxy-reports across biopsychosocial domains. Limited data exist on the effects of caregiver-child discrepancies in pediatric pain assessment. In children with chronic pain, we examined associations among discrepancies in caregiver-child reports of child anxiety and depressive symptoms and child functional impairment. METHODS: Participants were 202 children (Mage=14.49 ± 2.38 years; 68.8% female) with chronic pain and their caregivers (95.5% female). Children and caregivers completed the Revised Child Anxiety and Depression Scale (RCADS) and RCADS-Parent, respectively. Children also completed the Functional Disability Inventory. Mean difference tests examined caregiver-child discrepancies. Moderation analyses examined whether associations between child self-reported anxiety and depressive symptoms and functional impairment varied as a function of caregiver proxy-report. RESULTS: Children reported more anxiety and depressive symptoms compared with their caregivers' proxy-reports (Z = -4.83, p < .001). Both informants' reports of child anxiety and depressive symptoms were associated with child functional impairment (rs = .44, rs = .30, p < .001). Caregiver proxy-report moderated associations between child-reported anxiety and depressive symptoms and functional impairment (B = -0.007, p = .003). When caregiver proxy-report was low, child self-reported anxiety and depressive symptoms were positively related to functional impairment (B = 0.28, SE = 0.07, 95% CI [0.15, 0.41], p < .001). CONCLUSIONS: Discrepant caregiver-child perceptions of child anxiety and depressive symptoms may be associated with functioning in children with chronic pain, especially when caregivers report less child internalizing symptoms. These findings highlight the need for further examination of the effects of caregiver-child discrepancies on pediatric chronic pain outcomes and may indicate targets for intervention.


Assuntos
Ansiedade , Cuidadores , Dor Crônica , Emoções , Medição da Dor , Ansiedade/epidemiologia , Criança , Depressão , Feminino , Humanos , Masculino , Qualidade de Vida
11.
Acta Paediatr ; 109(1): 56-70, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31423647

RESUMO

AIM: The aim of this systematic review was to examine the frequency and risk factors of pain among long-term childhood cancer survivors based on self-reported questionnaire studies. Participants aged 21 years or younger at the time of their cancer diagnosis were included. METHODS: The Medline (OVID), PubMed and PsycINFO databases were searched for manuscripts published between January 1, 1990, and August 31, 2018, following the PRISMA statement for reporting systematic reviews. RESULTS: In total, 25 studies, including five prospective cohort studies measuring pain up to 32 years post-diagnosis, were identified. Female sex, young age at diagnosis, older age at assessment, greater time since diagnosis, specific diagnoses (such as central nervous system [CNS] tumours, bone tumours and sarcoma), fatigue and persistent emotional distress were associated with cancer-related pain. The most common pain types were migraines, headaches and back pain. CONCLUSION: A subset of childhood cancer survivors reported clinically significant self-reported pain. Identifying survivor subgroups at risk for pain could be essential for developing tailored intervention and prevention strategies. Prospective studies that use standardised and psychometrically sound tools to evaluate pain are needed.


Assuntos
Sobreviventes de Câncer , Dor/epidemiologia , Humanos , Prevalência , Fatores de Risco
12.
Pediatr Res ; 87(3): 576-580, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31585457

RESUMO

BACKGROUND: To characterize acoustic features of an infant's cry and use machine learning to provide an objective measurement of behavioral state in a cry-translator. To apply the cry-translation algorithm to colic hypothesizing that these cries sound painful. METHODS: Assessment of 1000 cries in a mobile app (ChatterBabyTM). Training a cry-translation algorithm by evaluating >6000 acoustic features to predict whether infant cry was due to a pain (vaccinations, ear-piercings), fussy, or hunger states. Using the algorithm to predict the behavioral state of infants with reported colic. RESULTS: The cry-translation algorithm was 90.7% accurate for identifying pain cries, and achieved 71.5% accuracy in discriminating cries from fussiness, hunger, or pain. The ChatterBaby cry-translation algorithm overwhelmingly predicted that colic cries were most likely from pain, compared to fussy and hungry states. Colic cries had average pain ratings of 73%, significantly greater than the pain measurements found in fussiness and hunger (p < 0.001, 2-sample t test). Colic cries outranked pain cries by measures of acoustic intensity, including energy, length of voiced periods, and fundamental frequency/pitch, while fussy and hungry cries showed reduced intensity measures compared to pain and colic. CONCLUSIONS: Acoustic features of cries are consistent across a diverse infant population and can be utilized as objective markers of pain, hunger, and fussiness. The ChatterBaby algorithm detected significant acoustic similarities between colic and painful cries, suggesting that they may share a neuronal pathway.


Assuntos
Dor Abdominal/psicologia , Acústica , Cólica/psicologia , Choro , Comportamento do Lactente , Aprendizado de Máquina , Aplicativos Móveis , Percepção da Dor , Processamento de Sinais Assistido por Computador , Dor Abdominal/diagnóstico , Cólica/diagnóstico , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Reconhecimento Automatizado de Padrão , Espectrografia do Som
13.
Haematologica ; 105(1): 83-90, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-30975906

RESUMO

Vaso-occlusive crisis (VOC) is a hallmark of sickle cell disease (SCD) and occurs when deoxygenated sickled red blood cells occlude the microvasculature. Any stimulus, such as mental stress, which decreases microvascular blood flow will increase the likelihood of red cell entrapment resulting in local vaso-occlusion and progression to VOC. Neurally mediated vasoconstriction might be the physiological link between crisis triggers and vaso-occlusion. In this study, we determined the effect of mental stress on microvascular blood flow and autonomic nervous system reactivity. Sickle cell patients and controls performed mentally stressful tasks, including a memory task, conflict test and pain anticipation test. Blood flow was measured using photoplethysmography, autonomic reactivity was derived from electrocardiography and perceived stress was measured by the State-Trait Anxiety Inventory questionnaire. Stress tasks induced a significant decrease in microvascular blood flow, parasympathetic withdrawal and sympathetic activation in all subjects. Of the various tests, pain anticipation caused the highest degree of vasoconstriction. The magnitude of vasoconstriction, sympathetic activation and perceived stress was greater during the Stroop conflict test than during the N-back memory test, indicating the relationship between magnitude of experimental stress and degree of regional vasoconstriction. Baseline anxiety had a significant effect on the vasoconstrictive response in sickle cell subjects but not in controls. In conclusion, mental stress caused vasoconstriction and autonomic nervous system reactivity in all subjects. Although the pattern of responses was not significantly different between the two groups, the consequences of vasoconstriction can be quite significant in SCD because of the resultant entrapment of sickle cells in the microvasculature. This suggests that mental stress can precipitate a VOC in SCD by causing neural-mediated vasoconstriction.


Assuntos
Anemia Falciforme , Doenças Vasculares , Anemia Falciforme/complicações , Sistema Nervoso Autônomo , Humanos , Estresse Psicológico , Vasoconstrição
14.
Pediatr Res ; 88(6): 840-849, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-31791045

RESUMO

Chronic pain is a major public health problem in the United States costing $635 billion annually. Hospitalizations for chronic pain in childhood have increased almost tenfold in the past decade, without breakthroughs in novel treatment strategies. Findings from brain imaging studies using structural and resting-state fMRI could potentially help personalize treatment to address this costly and prevalent health problem by identifying the underlying brain pathways that contribute, facilitate, and maintain chronic pain. The aim of this review is to synthesize structural and resting-state network pathology identified by recent brain imaging studies in pediatric chronic pain populations and discuss the potential impact of chronic pain on cortical development. Sex differences as well as treatment effects on these cortical alterations associated with symptom changes are also summarized. This area of research is still in its infancy with currently limited evidence available from a small number of studies, some of which suffer from limitations such as small sample size and suboptimal methodology. The identification of brain signatures of chronic pain in children may help to develop new pathways for future research as well as treatment strategies.


Assuntos
Mapeamento Encefálico/métodos , Encéfalo/diagnóstico por imagem , Dor Crônica/terapia , Neuroimagem/métodos , Adolescente , Adulto , Anemia Falciforme/complicações , Encéfalo/anatomia & histologia , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro , Imageamento por Ressonância Magnética , Masculino , Pediatria , Puberdade , Tamanho da Amostra , Fatores Sexuais , Adulto Jovem
15.
Health Qual Life Outcomes ; 17(1): 162, 2019 Oct 29.
Artigo em Inglês | MEDLINE | ID: mdl-31665035

RESUMO

BACKGROUND: When a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. Assessment of the quality of life (QoL) of siblings is challenged by their general lack of availability for regular assessment by clinical providers. Thus, the use of parent proxy reporting may be useful. Our aim was to describe the QoL of siblings of HCT survivors, as reported by their parents, as well as to identify parent and family factors associated with lower sibling QoL. METHODS: A cross-sectional study was utilized to assess parent-reported QoL of the HCT recipient's sibling (Short Form (SF)-10 Health Survey for Children and the Pediatric Symptom Checklist (PSC)-17). Parent QoL was assessed using the SF-12. Multivariable linear regression was used to explore hypothesized predictors of sibling QoL, including parent QoL, family impact/function (Impact on Family Scale, Family Adaptability and Cohesion Evaluation Scales, IV, and a question asking about financial problems) while adjusting for demographic and HCT characteristics. RESULTS: Ninety-seven siblings (55% males) with a mean age of 12 years (standard deviation [SD] 4 years) were assessed, representing HCT survivors, who were an average of 5 years (SD 4 years) post-HCT. Neither sibling psychosocial (mean 49.84, SD 10.70, p = 0.87) nor physical health scores (mean 51.54, SD 8.42, p = 0.08) differed from norms. Parent proxies reported behavioral/emotional problems (PSC-17 total score > 15) in 24% of siblings. While parental ratings of their own physical health (SF-12 were higher than norms (mean 53.04, SD 8.17, p = 0.0005), mental health scores were lower (mean 45.48, SD 10.45, p < 0.0001). In multivariable analysis, lower parent emotional functioning and adverse family function were associated with lower sibling QoL, as reported by parents. CONCLUSIONS: While proxy-reported QoL of siblings did not differ significantly from normative data, both parent QoL and family function were associated with sibling QoL. Future research is needed to understand how siblings themselves perceive their QoL following HCT.


Assuntos
Transplante de Células-Tronco Hematopoéticas/psicologia , Qualidade de Vida/psicologia , Irmãos/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Relações Familiares/psicologia , Feminino , Humanos , Masculino , Transtornos Mentais/epidemiologia , Pessoa de Meia-Idade , Pais/psicologia , Inquéritos e Questionários
16.
JMIR Mhealth Uhealth ; 7(3): e10921, 2019 03 18.
Artigo em Inglês | MEDLINE | ID: mdl-30882352

RESUMO

BACKGROUND: Approximately 70,000 adolescents and young adults (AYA) are diagnosed with cancer each year in the United States. Sarcomas carry a particularly high symptom burden and are some of the most common cancers among AYA. Recent work has documented significant levels of unmet needs among AYA with cancer, particularly the need for psychosocial support. Mobile technology may be a cost-effective and efficient way to deliver a psychosocial intervention to AYA with cancer and cancer survivors. OBJECTIVE: The two aims of this study were to (1) develop a pilot version of a mobile-based mindfulness and social support program and (2) evaluate program usage and acceptability. An exploratory aim was to examine change in psychosocial outcomes. METHODS: Thirty-seven AYA with sarcoma or sarcoma survivors, parents, and health care providers participated in the study. Semistructured interviews were conducted with 10 AYA, parents of five of the adolescents, and six health care providers. Themes from the interviews helped to inform the development of a mobile-based mindfulness pilot program and a companion Facebook-based social support group. Twenty AYA consented to participate in a single-arm pre-post evaluation of the program; 17 downloaded the app and joined the Facebook group. Seven of these participants had participated in the semistructured interviews. Six additional health care providers consented to participate in the evaluation stage. RESULTS: On average, participants completed 16.9 of the 28 unique sessions and used the mindfulness app for a mean 10.2 (SD 8.2) days during the 28-day evaluation period. The majority of participants (16/17) engaged in the social group and posted at least one reply to the moderator's prompts. The mean number of responses per person to the moderator of the social group was 15.2 of 31 (49%, range 0%-97%). Both AYA and health care providers responded positively to the Mindfulness for Resilience in Illness program and offered useful recommendations for improvements. Exploratory psychosocial analyses indicated there were no significant differences from pretest to posttest on measures of perceived social support, mindfulness, body image, or psychological functioning. CONCLUSIONS: This study offers preliminary support for the feasibility and acceptability of a mobile-based mindfulness and Facebook-based social support program for AYA with sarcoma. The feedback from AYA and health care providers will assist in creating a fully developed intervention. TRIAL REGISTRATION: ClinicalTrials.gov NCT03130751; https://clinicaltrials.gov/ct2/show/NCT03130751.


Assuntos
Atenção Plena/instrumentação , Aplicativos Móveis/normas , Sarcoma/psicologia , Apoio Social , Adolescente , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Feminino , Humanos , Masculino , Atenção Plena/métodos , Aplicativos Móveis/tendências , Desenvolvimento de Programas/métodos , Desenvolvimento de Programas/estatística & dados numéricos , Sarcoma/complicações
17.
J Pediatr Psychol ; 44(6): 645-655, 2019 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-30856250

RESUMO

Objective To conduct a single-arm pilot study assessing the feasibility and acceptability of a 30-day parent-focused mindfulness and psychosocial support mobile app intervention for parents of children with chronic pain. Methods Thirty parents completed the intervention, which included a mindfulness curriculum, peer support videos, and written psychoeducational content. Twelve healthcare providers also assessed the app and provided feedback. Feasibility was assessed by server-side documented usage on ≥50% of the days in the intervention period and completion of ≥70% of the mindfulness content. Parent and provider acceptance were assessed by ≥70% of participants rating each acceptance test question as ≥5 on a 7-point Likert scale. Parents completed measures of solicitousness, stress, mindful parenting, and resilience prior to and following the intervention. Results Feasibility results were mixed: parents completed mindfulness content on an average of 11.2 days during the intervention period, slightly under the pre-established criterion. However, parents completed an average of 72.1% of the content, which met feasibility criterion. Acceptance criteria were met for the majority of parent acceptance test questions and all of the provider acceptance test questions. Exploratory analyses of the psychosocial measures revealed significant decreases in parental solicitous behavior and perceived stress, and a significant increase in mindful parenting. Conclusions The current study extends the emerging body of research on mindfulness-based interventions for parents of children with chronic illness and suggests that it may be acceptable to deliver this content through a mobile device. Future research is needed to assess the intervention's efficacy compared to standard of care.


Assuntos
Dor Crônica , Educação não Profissionalizante/métodos , Atenção Plena/educação , Aplicativos Móveis , Poder Familiar , Pais/educação , Apoio Social , Adolescente , Adulto , Criança , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Atenção Plena/métodos , Poder Familiar/psicologia , Pais/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Projetos Piloto , Resiliência Psicológica , Estresse Psicológico/etiologia
18.
Pain ; 160(6): 1421-1430, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30720583

RESUMO

Primary dysmenorrhea (PD; menstrual pain without an underlying medical condition) is associated with enhanced pain sensitivity and temporal summation (TS) in adult women, which may reflect the presence of central pain processes. Research in this area has been limited by focusing on only adult populations and incomplete assessments of central sensitization. The current study explored both excitatory and inhibitory measures of pain processing in girls and young adult women with and without PD. Thirty-two young women with PD and 34 healthy controls underwent laboratory pain testing during each of 3 menstrual cycle phases (menstrual, ovulatory, and midluteal), which included measures of pain tolerance and threshold, TS, and conditioned pain modulation. Results indicated enhanced pain sensitivity in young women with PD as measured by heat pain tolerance and Average Pain50 (P50), compared with healthy controls. These group differences were evident at all phases of the menstrual cycle. No group differences in cold pain tolerance, TS, or conditioned pain modulation were evident at any phase of the menstrual cycle. These data suggest some evidence of central sensitization in young women with PD, although no evidence of enhanced excitatory or deficient inhibitory mechanisms were observed. Future research should focus on identifying other potential phenotypes for PD to determine those at risk of developing other pain problems.


Assuntos
Dismenorreia/tratamento farmacológico , Ciclo Menstrual/efeitos dos fármacos , Neuralgia/tratamento farmacológico , Medição da Dor , Adolescente , Sensibilização do Sistema Nervoso Central/efeitos dos fármacos , Feminino , Humanos , Masculino , Limiar da Dor/efeitos dos fármacos , Adulto Jovem
20.
J Perinatol ; 39(3): 375-386, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30659239

RESUMO

OBJECTIVE: To classify NICU interventions for parental distress and quantify their effectiveness. STUDY DESIGN: We systematically reviewed controlled studies published before 2017 measuring NICU parental distress, defined broad intervention categories, and used random-effects meta-analysis to quantify treatment effectiveness. RESULTS: Among 1643 unique records, 58 eligible trials predominantly studied mothers of preterm infants. Interventions tested in 22 randomized trials decreased parental distress (p < 0.001) and demonstrated improvement beyond 6 months (p < 0.005). In subgroup analyses, complementary/alternative medicine and family-centered instruction interventions each decreased distress symptoms (p < 0.01), with fathers and mothers improving to similar extents. Most psychotherapy studies decreased distress individually but did not qualify for meta-analysis as a group. CONCLUSION: NICU interventions modestly reduced parental distress. We identified family-centered instruction as a target for implementation and complementary/alternative medicine as a target for further study. Investigators must develop psychosocial interventions that serve NICU parents at large, including fathers and parents of full-term infants.


Assuntos
Recém-Nascido Prematuro , Terapia Intensiva Neonatal/psicologia , Pais/psicologia , Estresse Psicológico/prevenção & controle , Feminino , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Masculino , Psicoterapia , Ensaios Clínicos Controlados Aleatórios como Assunto , Estresse Psicológico/terapia
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