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1.
J Oncol Pharm Pract ; : 10781552241258151, 2024 May 31.
Artículo en Inglés | MEDLINE | ID: mdl-38819392

RESUMEN

BACKGROUND: The purpose of this study was to describe taking, timing, and dosing adherence to home caregiver-administered intravenous (IV) immunosuppressants in a sample of pediatric hematopoietic stem cell transplant (HCT) recipients. PROCEDURES: Sixteen children who had undergone HCT, ages 3 months to 15 years, and their caregivers participated. All caregivers were biological mothers. Caregivers completed a demographic questionnaire as part of a larger study and brought in portable infusion pumps to download the pump data at the time of their child's post-HCT clinic visit. Pump data were then examined for dose taking, timing, and amount for 30 days following discharge. RESULTS: Despite the importance of the precise timing of IV immunosuppressants, adherence taking, dosing, and timing varied widely in this sample. The mean percentage of doses administered was 98.72%, and 81.3% of children received all doses of immunosuppressant. However, only 62% of doses were given on time and the mean difference between the prescribed and actual administration time was 67.03 minutes. CONCLUSIONS: Although taking adherence was high, the timing and dosing adherence to IV immunosuppressants in the home was poor. Additional support to promote adherence should be provided including assisting caregivers to identify and use adherence strategies specific to their child's IV immunosuppressant regimen in the home.

2.
Nutr Cancer ; 75(4): 1200-1210, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36895184

RESUMEN

This study investigated the relationship between nutritional status of hematopoietic stem cell transplant (HSCT) recipients pre-/post-transplant and outcomes post-transplant. A secondary data analysis was conducted of 18 patients 2-weeks pre-transplant and 3 weeks post-transplant. Nutrients/food servings analyzed from 24-dietary recalls were scored for diet quality, antioxidant status, and energy adequacy (≥75% of recommended targets). Patient outcomes included frequency/severity of gastrointestinal (GI) symptoms, mucositis, % weight change, acute graft vs. host disease (aGVHD), length of stay (LOS), hospital readmission, intensive care unit (ICU) admission, and plasma albumin and cytokine levels. Pre-transplant, patients consumed more calories, total and saturated fat (% kcals) and less carbohydrate (% kcals) vs. post-transplant. Higher vs. lower pre-transplant diet quality was related to positive weight change (p <. 05), and greater interleukin-10 (p <. 05). Energy inadequacy pre-transplant was related to more aGVHD post-transplant (p < 0.05). Post-transplant, higher diet quality was related to greater plasma albumin (p <. 05), shorter LOS (p <. 05), no ICU admissions (p <. 01), and more GI symptoms (p <. 05); higher antioxidant status was related to greater albumin (p <. 05); and energy adequacy was related to shorter LOS (p <. 05). Optimizing dietary quality, antioxidant status and energy adequacy pre-/post -transport are important considerations to improve patient outcomes after HSCT.


Asunto(s)
Enfermedades Gastrointestinales , Trasplante de Células Madre Hematopoyéticas , Humanos , Estado Nutricional , Antioxidantes , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Hospitalización , Tiempo de Internación , Estudios Retrospectivos
3.
Pediatr Blood Cancer ; 69(10): e29846, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35730649

RESUMEN

OBJECTIVE: Pediatric hematopoietic stem cell transplant (HCT) is an intensive medical procedure associated with significant late effects, of which pain is a prominent example. While pain is associated with increased depressive symptoms and health-related quality-of-life (HRQoL) impairments in other pediatric chronic illness populations, associations between these variables are not well understood in pediatric HCT. Clarifying these associations may inform clinical interventions to improve health outcomes following pediatric HCT. This study aimed to investigate the relations between pain intensity, depressive symptoms, and HRQoL in survivors of pediatric HCT. METHOD: Fifty-one survivors of pediatric HCT (Mage  = 14.3 years, standard deviation [SD] = 4.3; 58.8% male; 80.4% White) completed self-report measures of pain intensity, depressive symptoms, and HRQoL. Demographic and disease information was collected via demographic forms and medical record review. Path analysis was used to examine hypothesized associations between pain intensity, depressive symptoms, and HRQoL. RESULTS: Analyses revealed direct effects of pain intensity on depressive symptoms (estimate [Est.] = .23, p < .001) and HRQoL (Est. = -.2, p = .04), and direct effects of depressive symptoms on HRQoL (Est. = -.68, p < .001). Depressive symptoms also mediated the relationship between pain intensity and HRQoL (Est. = -.16, p = .006). CONCLUSIONS: Greater pain intensity was associated directly with increased depressive symptoms and indirectly with HRQoL through depressive symptoms. Results of this study suggest that multitargeted cognitive behavioral interventions that address pain and depressive symptoms may improve HRQoL ratings in survivors of pediatric HCT.


Asunto(s)
Trasplante de Células Madre Hematopoyéticas , Calidad de Vida , Adolescente , Niño , Depresión/etiología , Depresión/psicología , Femenino , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Trasplante de Células Madre Hematopoyéticas/métodos , Humanos , Masculino , Dolor/etiología , Calidad de Vida/psicología , Sobrevivientes/psicología
4.
J Pediatr Psychol ; 46(10): 1258-1266, 2021 10 18.
Artículo en Inglés | MEDLINE | ID: mdl-34350968

RESUMEN

OBJECTIVE: The current study examined the roles of constructive and dysfunctional problem-solving strategies in the relationships between illness uncertainty and adjustment outcomes (i.e., anxious, depressive, and posttraumatic stress symptoms) in caregivers of children newly diagnosed with cancer. METHODS: Two hundred thirty-eight caregivers of children (0-19 years of age) newly diagnosed with cancer (2-14 weeks since diagnosis) completed measures of illness uncertainty, problem-solving strategies, and symptoms of anxiety, depression, and posttraumatic stress. RESULTS: A mediation model path analysis assessed constructive and dysfunctional problem-solving strategies as mediators between illness uncertainty and caregiver anxious, depressive, and posttraumatic stress symptoms. Dysfunctional problem-solving scores partially mediated the relationships between illness uncertainty and anxious, depressive, and posttraumatic stress symptoms. Constructive problem-solving scores did not mediate these relationships. CONCLUSIONS: The current findings suggest that illness uncertainty and dysfunctional problem-solving strategies, but not constructive problem-solving strategies, may play a key role in the adjustment of caregivers of children newly diagnosed with cancer. Interventions aimed at managing illness uncertainty and mitigating the impact of dysfunctional problem-solving strategies may promote psychological adjustment.


Asunto(s)
Cuidadores , Neoplasias , Niño , Depresión , Ajuste Emocional , Humanos , Lactante , Recién Nacido , Incertidumbre
5.
Biol Blood Marrow Transplant ; 24(2): 381-385, 2018 02.
Artículo en Inglés | MEDLINE | ID: mdl-29102720

RESUMEN

We prospectively examined rates of outpatient oral medication adherence in children after hematopoietic stem cell transplant (post-HSCT). For 6 months after first discharge post-HSCT, 50 patients (aged 0 to 16 years) and their primary caregivers agreed to store 1 oral medication in an electronic pill bottle that date and time stamps each bottle opening. Demographics, disease, donor type, and prescribed post-HSCT medication regimen were collected via chart review. For each patient percent adherence was calculated by dividing the number of doses taken as indicated by the electronic pill bottle by the number of doses prescribed for the same time period. Average percent adherence ranged from 63% at 1 month after discharge to 57% at 6 months after discharge. For patients who received an allogeneic transplant, lower adherence was associated (P < .005) with higher infection rates, after controlling for age and time since transplant. No such relationship was observed for patients who received an autologous transplant. This study demonstrates that poor oral medication adherence is prevalent, persistent, and, for patients receiving an allogeneic transplant, associated with increased incidence of infections during the outpatient treatment period. This study highlights the need for further research examining factors that hinder medication adherence as well as monitoring, promoting, and intervening to maximize medication adherence throughout the HSCT course.


Asunto(s)
Trasplante de Células Madre Hematopoyéticas/efectos adversos , Infecciones/etiología , Cumplimiento de la Medicación/estadística & datos numéricos , Adolescente , Aloinjertos , Niño , Preescolar , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Pacientes Ambulatorios , Periodo Posoperatorio
6.
Biol Blood Marrow Transplant ; 23(4): 562-568, 2017 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-28087458

RESUMEN

Adherence to oral medications has been repeatedly shown to fall below the recommended 80% to 95% in pediatric and adult cancer populations. The purpose of this review is to report the state of the science about oral medication adherence during the acute phase of hematopoietic stem cell transplantation across the lifespan. An exhaustive search of the literature yielded 5 records for inclusion in the review. Two studies examined adherence in pediatrics, 2 in adults, and 1 included both pediatric and adult patients. Three studies were descriptive and 2 were interventional in design. The rate of adherence to oral medications ranged from 33% to 94.7%. Adherence decreased over time in all studies except in 1 pharmacist-led intervention study. Different methods were used to measure adherence, but most relied on self-report. Further research is needed in medication adherence in hematopoietic stem cell transplantation to better understand facilitators, barriers, and relationships to health outcomes.


Asunto(s)
Trasplante de Células Madre Hematopoyéticas , Cumplimiento de la Medicación/estadística & datos numéricos , Adolescente , Adulto , Niño , Humanos , Farmacéuticos , Adulto Joven
8.
Public Health Nutr ; 15(1): 28-38, 2012 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-21806868

RESUMEN

OBJECTIVE: To evaluate the first phase of a specialist weight management programme provided entirely within the UK National Health Service. DESIGN: Prospective cohort study using multiple logistic regression analysis to report odds of ≥5 kg weight loss in all referrals and completers, and odds of completion, with 95 % confidence intervals. Anxiety and depression 'caseness' were measured by the Hospital Anxiety and Depression Scale. SETTING: Glasgow and Clyde Weight Management Service (GCWMS) is a specialist multidisciplinary service, with clinical psychology support, for patients with BMI ≥35 kg/m2 or BMI ≥30 kg/m2 with co-morbidities. SUBJECTS: All patients referred to GCWMS between 2004 and 2006. RESULTS: Of 2976 patients referred to GCWMS, 2156 (72·4 %) opted into the service and 809 completed phase 1. Among 809 completers, 35·5 % (n 287) lost ≥5 kg. Age ≥40 years, male sex (OR = 1·39, 95 % CI 1·05, 1·82), BMI ≥ 50 kg/m2 (OR = 1·70, 95 % CI 1·14, 2·54) and depression (OR = 1·81, 95 % CI 1·35, 2·44) increased the likelihood of losing ≥5 kg. Diabetes mellitus (OR = 0·55, 95 % CI 0·38, 0·81) and socio-economic deprivation were associated with poorer outcomes. Success in patients aged ≥40 years and with BMI ≥50 kg/m2 was associated with higher completion rates of the programme. Patients from the most deprived areas were less likely to lose ≥5 kg because of non-completion of the programme. CONCLUSIONS: Further improvements in overall effectiveness might be achieved through targeting improvements in appropriateness of referrals, retention and effective interventions at specific populations of patients.


Asunto(s)
Programas Nacionales de Salud , Obesidad/terapia , Programas de Reducción de Peso , Adulto , Índice de Masa Corporal , Intervalos de Confianza , Depresión/complicaciones , Diabetes Mellitus/etiología , Diabetes Mellitus/metabolismo , Femenino , Hospitales , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Análisis Multivariante , Obesidad/complicaciones , Estudios Prospectivos , Derivación y Consulta , Factores Socioeconómicos , Reino Unido
9.
J Pediatr Hematol Oncol Nurs ; 39(5): 277-289, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36129887

RESUMEN

Purpose: The purpose of this study was to describe symptoms experienced by survivors of pediatric hematopoietic stem cell transplant (HSCT), and demographic and treatment-factors associated with ongoing symptomology. Methods: Fifty pediatric survivors completed a cross-sectional pilot study. Questionnaires were administered online via REDCap to assess symptoms experienced in the last week. Survivors also consented to a medical record chart review. Results: Survivors were on average 5.4 years post-HSCT (range 1.1 to 9 years), male (58%), and Caucasian (80%) who received an allogeneic HSCT (92%). The most commonly reported symptoms were difficulty concentrating (42.5%), pain (38%), worry (38%), nervousness (37.5%), and lack of energy/fatigue (34%). Survivors reported up to 14 symptoms, with 90% of the sample experiencing at least one symptom in the previous week. Average number of symptoms varied by age group between 2.1 (8-9 years) and 6.8 (18 and older). Age and female gender were associated with higher levels of fatigue. Conclusions: The majority of survivors experienced at least one symptom in the previous week. Neuropsychological symptoms and pain endure well into survivorship that can influence outcomes such as function and health-related quality of life (HRQOL). Research is needed on biological mechanisms of ongoing symptomology, effective interventions to prevent or mitigate symptoms, and the impact of symptoms on patient outcomes including daily functioning and HRQOL. Implications Survivors of pediatric HSCT continued to experience symptoms for up to nine years. Survivors should be frequently screened for symptoms, as symptoms may affect function, learning/employment outcomes, and HRQOL.


Asunto(s)
Trasplante de Células Madre Hematopoyéticas , Calidad de Vida , Niño , Preescolar , Estudios Transversales , Fatiga/epidemiología , Femenino , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Humanos , Masculino , Dolor , Proyectos Piloto , Calidad de Vida/psicología , Sobrevivientes/psicología
10.
BMC Public Health ; 10: 391, 2010 Jul 02.
Artículo en Inglés | MEDLINE | ID: mdl-20598130

RESUMEN

BACKGROUND: Preventative medicine has become increasingly important in efforts to reduce the burden of chronic disease in industrialised countries. However, interventions that fail to recruit socio-economically representative samples may widen existing health inequalities. This paper explores the barriers and facilitators to engaging a socio-economically disadvantaged (SED) population in primary prevention for coronary heart disease (CHD). METHODS: The primary prevention element of Have a Heart Paisley (HaHP) offered risk screening to all eligible individuals. The programme employed two approaches to engaging with the community: a) a social marketing campaign and b) a community development project adopting primarily face-to-face canvassing. Individuals living in areas of SED were under-recruited via the social marketing approach, but successfully recruited via face-to-face canvassing. This paper reports on focus group discussions with participants, exploring their perceptions about and experiences of both approaches. RESULTS: Various reasons were identified for low uptake of risk screening amongst individuals living in areas of high SED in response to the social marketing campaign and a number of ways in which the face-to-face canvassing approach overcame these barriers were identified. These have been categorised into four main themes: (1) processes of engagement; (2) issues of understanding; (3) design of the screening service and (4) the priority accorded to screening. The most immediate barriers to recruitment were the invitation letter, which often failed to reach its target, and the general distrust of postal correspondence. In contrast, participants were positive about the face-to-face canvassing approach. Participants expressed a lack of knowledge and understanding about CHD and their risk of developing it and felt there was a lack of clarity in the information provided in the mailing in terms of the process and value of screening. In contrast, direct face-to-face contact meant that outreach workers could explain what to expect. Participants felt that the procedure for uptake of screening was demanding and inflexible, but that the drop-in sessions employed by the community development project had a major impact on recruitment and retention. CONCLUSION: Socio-economically disadvantaged individuals can be hard-to-reach; engagement requires strategies tailored to the needs of the target population rather than a population-wide approach.


Asunto(s)
Enfermedad Coronaria/prevención & control , Conocimientos, Actitudes y Práctica en Salud , Promoción de la Salud/métodos , Tamizaje Masivo/estadística & datos numéricos , Prevención Primaria/métodos , Mercadeo Social , Adulto , Femenino , Grupos Focales , Conductas Relacionadas con la Salud , Humanos , Entrevistas como Asunto , Estilo de Vida , Masculino , Tamizaje Masivo/psicología , Persona de Mediana Edad , Atención Primaria de Salud/economía , Atención Primaria de Salud/estadística & datos numéricos , Investigación Cualitativa , Factores de Riesgo , Escocia , Factores Socioeconómicos
11.
Circ Res ; 99(1): 102-8, 2006 Jul 07.
Artículo en Inglés | MEDLINE | ID: mdl-16778130

RESUMEN

Caspase-1 processes the interleukin (IL)-1beta and IL-18 inactive precursors to the biologically active cytokines that are known to have proatherogenic effects. The present study investigated the genetic variability of the CASP1 gene and plasma levels of caspase-1 in relation to cardiovascular risk. In Europeans, 3 tag SNPs captured 4 common haplotypes of the CASP1 gene. Among these, the A(in6) allele of the G+7/in6A polymorphism was less frequent in 246 cases with myocardial infarction and a parental history of disease than in 253 controls free of familial history of disease (0.13+/-0.02 versus 0.20+/-0.02; P=0.005). However, in a larger case/control study (n=1774), these effects are borderline restricted to the UK population. In a prospective cohort of 1168 patients with coronary artery disease followed up during a median period of 6.0 years, the A(in6) allele exhibited a borderline association with future cardiovascular death (hazard ratio [HR]: 0.64, 0.41 to 1.01; P=0.053) and was associated with lower serum IL-18 levels (P=0.014). Baseline caspase-1 levels in the top quartile of the distribution were predictive of cardiovascular deaths (HR=3.62, 1.81 to 7.27; P=0.0003 compared with the bottom quartile). Finally, in vitro assays of allelic imbalance showed that the CASP1 haplotype carrying the A(in6) allele was associated with a lower mRNA expression. These results indicate that caspase-1 levels are predictive of future cardiovascular death in patients with coronary artery disease. The role of CASP1 genetic variations in the susceptibility to myocardial infarction requires further investigation.


Asunto(s)
Enfermedades Cardiovasculares/etiología , Caspasa 1/sangre , Caspasa 1/genética , Enfermedad de la Arteria Coronaria/sangre , Variación Genética , Adulto , Anciano , Enfermedades Cardiovasculares/genética , Enfermedades Cardiovasculares/mortalidad , Estudios de Casos y Controles , Estudios de Cohortes , Femenino , Estudios de Seguimiento , Frecuencia de los Genes , Predisposición Genética a la Enfermedad , Genotipo , Haplotipos , Humanos , Interleucina-18/sangre , Masculino , Persona de Mediana Edad , Infarto del Miocardio/genética , Polimorfismo de Nucleótido Simple , Estudios Prospectivos , Medición de Riesgo
12.
J Mol Med (Berl) ; 85(7): 771-5, 2007 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-17396242

RESUMEN

Complement factor H (CFH) plays a critical role in the protection of host cells and tissues from damage by complement activation and has been suggested to protect against the progression of atherosclerosis. A polymorphism in the CFH gene, Y402H, known to be strongly associated with age-related macular degeneration, has been analyzed in relation to coronary artery disease (CAD) in several studies with conflicting results. We investigated the association of polymorphisms of the CFH gene in two large-scale studies on CAD and myocardial infarction (MI). The AtheroGene Study included a cohort of cases with CAD (n = 1,303) prospectively followed for a median period of 6.2 years, among whom198 experienced a cardiovascular event, and a group of 483 control subjects. The AtheroGene Study population was genotyped for the Y402H, I62V, and E936D polymorphisms. There was no significant difference in genotypic or allelic frequencies between CAD cases and controls. Among cases, no significant association was found with prospective cardiovascular outcome. Many inflammatory proteins, including the C-reactive protein, were measured, and none of the polymorphisms showed an association with these markers. The Etude Cas-Témoin de l'Infarctus du Myocarde (ECTIM) Study compared 1,034 patients with MI and 1,039 controls from France and United Kingdom. The ECTIM Study population was genotyped for the Y402H polymorphism. Genotype and allele frequencies were similar in cases and controls. These results do not support an involvement of common nonsynonymous polymorphisms of the CFH gene in predisposition to CAD and its complications.


Asunto(s)
Factor H de Complemento/genética , Enfermedad de la Arteria Coronaria/genética , Predisposición Genética a la Enfermedad/epidemiología , Infarto del Miocardio/genética , Polimorfismo Genético , Adulto , Anciano , Estudios de Casos y Controles , Enfermedad de la Arteria Coronaria/epidemiología , Femenino , Frecuencia de los Genes , Genotipo , Humanos , Masculino , Persona de Mediana Edad , Mutación Missense , Infarto del Miocardio/epidemiología
13.
J Mol Med (Berl) ; 85(11): 1271-80, 2007 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-17634906

RESUMEN

The hypothesis of a causal link between inflammation and atherosclerosis would be strengthened if variants of inflammatory genes were associated with disease. Polymorphisms of 33 genes encoding inflammatory molecules were tested for association with myocardial infarction (MI). Patients with MI and a parental history of MI (n = 312) and controls from the UK (n = 317) were genotyped for 162 polymorphisms. Thirteen polymorphisms were associated with MI (P values ranging from 0.003 to 0.041). For three genes, ITGB1, SELP, and TNFRSF1B haplotype frequencies differed between patients and controls (P values < 0.01). We further assessed the simultaneous contribution of all polymorphisms and relevant covariates to MI using a two-step strategy of data mining relying on Random Forest and DICE algorithms. In a replication study involving two independent samples from the UK (n = 649) and France (n = 706), one interaction between the ITGA4/R898Q polymorphism and current smoking status was replicated. This study illustrates a strategy for assessing the joint effect of a large number of polymorphisms on a phenotype that may provide information that single locus or single gene analysis may fail to uncover. Overall, there was weak evidence for an implication of inflammatory polymorphisms on susceptibility to MI.


Asunto(s)
Predisposición Genética a la Enfermedad , Inflamación/genética , Infarto del Miocardio/genética , Polimorfismo Genético , Biología de Sistemas/métodos , Algoritmos , Estudios de Casos y Controles , Femenino , Frecuencia de los Genes , Haplotipos , Humanos , Masculino , Persona de Mediana Edad , Oportunidad Relativa , Reproducibilidad de los Resultados
14.
J Adv Nurs ; 61(4): 373-83, 2008 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-18234035

RESUMEN

AIM: This paper is a report of a study to examine the complexities of informal caregiving for people with chronic heart failure. BACKGROUND: Little is known of the activities involved and underlying informal care. Heart failure is a common and burdensome condition in which carers play an important management role. METHOD: Semi-structured interviews were carried out with 30 informal carers nominated by patients with mild-to-moderate heart failure (24 spouses, four children, one sibling and one neighbour). Interviews examined knowledge of heart failure, its effects, reported management practices and concerns, decision making and support. The data were collected in 2001. FINDINGS: The management of heart failure was a shared and ongoing responsibility between the carer and patient. Carers' clinical knowledge of the condition and management was often limited, but they developed extensive knowledge of its personal effects on the patient. Invisible care activities included monitoring signs of symptom exacerbation and energy boundaries against perceived current and future demands and priorities. Visible care activities included medication management, dressing, bathing and help-seeking. Carers responded to patients' capacities, and adopted philosophies that sought to foster independence while facilitating as normal a life for the patient as was possible and safe. CONCLUSION: Interventions for informal carers around effective chronic heart failure management should address both visible and invisible informal caring. Future research is needed to develop interventions with carers to improve quality of care, reduce costs and improve patient quality of life. More research is needed to explore the complexities of lay caregiving and to explore the invisible dimensions of informal care further.


Asunto(s)
Cuidadores/psicología , Conocimientos, Actitudes y Práctica en Salud , Insuficiencia Cardíaca/enfermería , Atención Domiciliaria de Salud , Anciano , Cuidadores/educación , Investigación Empírica , Femenino , Insuficiencia Cardíaca/psicología , Humanos , Masculino , Encuestas y Cuestionarios
15.
J Pediatr Oncol Nurs ; 35(1): 36-42, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-28786302

RESUMEN

Adolescents and young adults who experience hematopoietic stem cell transplant are at risk for self-management difficulties based on development, psychological comorbidities, and the complexity of the care regimen. Recommendations for practice change were designed to address facilitators and barriers to self-management for adolescents and young adults following hematopoietic stem cell transplant. As part of a grounded theory research study, 30 participants (17 adolescents and young adults and 13 of their caregivers) were individually interviewed and asked about facilitators and barriers to managing care and advice for health care providers. Participant responses were coded into categories, which were named with terms used by the participants. The number of participants who provided data per category was recorded. Self-management is generally characterized only in the ability to follow a prescribed care regimen. Participants indicated mental and emotional experiences as a result of treatment were indistinguishable from self-management activities. Facilitators included having a positive attitude, social support, organization, motivation, and information. Barriers included physical and psychological symptoms, isolation, difficulties with the medication regimen, single parenting, and having a bad attitude. Advice for health care providers included communicating effectively, treating patients holistically, and providing social support.


Asunto(s)
Cuidadores/psicología , Personal de Salud/psicología , Trasplante de Células Madre Hematopoyéticas/enfermería , Trasplante de Células Madre Hematopoyéticas/psicología , Automanejo/psicología , Apoyo Social , Adolescente , Adulto , Femenino , Humanos , Masculino , Adulto Joven
16.
Cancer Nurs ; 41(5): 347-358, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29251682

RESUMEN

BACKGROUND: Stem cell transplant (SCT) is a major life event that can have long-term psychosocial consequences for the entire family. It is unknown the degree to which the psychosocial characteristics associated with SCT influence self-management behaviors and health outcomes in adolescents and young adults (AYAs). OBJECTIVE: The study had the following aims: (1) to describe how AYAs manage their care regimen post-SCT and (2) to explore self-management facilitators, barriers, processes, and behaviors within individual, family, community, and healthcare system domains. INTERVENTIONS/METHODS: A grounded theory study was conducted to understand the process AYAs use to manage their care after SCT. Semistructured individual interviews were conducted, digitally recorded, and transcribed verbatim. Data were coded to consensus and analyzed using constant comparison methods. RESULTS: A sample of 17 AYAs (13-25 years old at transplant) and 13 caregivers (dyads) participated in the study. Initially, the participants experienced a tornado of activities, information, and emotions. Support from family, friends, and healthcare providers empowered families to manage their care, maintain a positive attitude, and approach a "normal" life. CONCLUSIONS: Monotony, managing symptoms, and isolation were the hardest obstacles for AYAs throughout the process. Families discussed managing their care activities by developing routines that got easier with time. IMPLICATIONS FOR PRACTICE: Nurses play an instrumental role in AYA self-management practices by providing information, education, and social support. Psychosocial issues were prominent in the self-management process and should be addressed in future research and interventions with AYAs and caregivers.


Asunto(s)
Adaptación Psicológica , Cuidadores/psicología , Familia/psicología , Automanejo/métodos , Automanejo/psicología , Apoyo Social , Trasplante de Células Madre/psicología , Adolescente , Adulto , Femenino , Humanos , Masculino , Adulto Joven
17.
J Pediatr Oncol Nurs ; 34(3): 214-221, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28415959

RESUMEN

Bone marrow transplant (BMT) units are stressful work environments with high staff burnout, anxiety, and turnover. A qualitative study was undertaken to better understand care for nurses within the context of their clinical practice on a pediatric BMT unit. Understanding care practices for BMT nurses will allow us to design interventions and provide appropriate support for this subspecialty of nurses. Focus groups were held with 24 nurses as key participants, and 2 focus groups with general participants: unit management (N = 2) and caregivers of inpatients (N = 7). Data were analyzed using a thematic analysis. Data were transcribed verbatim and coded to consensus by members of the research team. Five themes emerged from the data: ( a) experiencing stressful situations that impede care, ( b) growing and developing personally and professionally, ( c) providing trustworthy and respectful care, ( d) acquiring meaningful coping skills, and ( e) sharing with others versus isolation. Stress management, professional development, and interdisciplinary communication were areas that emerged for potential intervention.


Asunto(s)
Trasplante de Médula Ósea/enfermería , Trasplante de Médula Ósea/psicología , Rol de la Enfermera/psicología , Enfermería Pediátrica , Estrés Psicológico/psicología , Adulto , Femenino , Grupos Focales , Humanos , Relaciones Interprofesionales , Masculino , Relaciones Enfermero-Paciente , Investigación Cualitativa
18.
JMIR Res Protoc ; 6(6): e122, 2017 Jun 26.
Artículo en Inglés | MEDLINE | ID: mdl-28652227

RESUMEN

BACKGROUND: Parents of children newly diagnosed with cancer are confronted with multiple stressors that place them at risk for significant psychological distress. One strategy that has been shown to help reduce uncertainty is the provision of basic information; however, families of newly diagnosed cancer patients are often bombarded with educational material. Technology has the potential to help families manage their informational needs and move towards normalization. OBJECTIVE: The aim of this study was to create a mobile app that pulls together data from both the electronic health record (EHR) and vetted external information resources to provide tailored information to parents of newly diagnosed children as one method to reduce the uncertainty around their child's illness. This app was developed to be used by families in a National Institutes of Health (NIH)-funded randomized controlled trial (RCT) aimed at decreasing uncertainty and the subsequent psychological distress. METHODS: A 2-phase qualitative study was conducted to elicit the features and content of the mobile app based on the needs and experience of parents of children newly diagnosed with cancer and their providers. Example functions include the ability to view laboratory results, look up appointments, and to access educational material. Educational material was obtained from databases maintained by the National Cancer Institute (NCI) as well as from groups like the Children's Oncology Group (COG) and care teams within Cincinnati Children's Hospital Medical Center (CCHMC). The use of EHR-based Web services was explored to allow data like laboratory results to be retrieved in real-time. RESULTS: The ethnographic design process resulted in a framework that divided the content of the mobile app into the following 4 sections: (1) information about the patient's current treatment and other data from the EHR; (2) educational background material; (3) a calendar to view upcoming appointments at their medical center; and (4) a section where participants in the RCT document the study data. Integration with the NCI databases was straightforward; however, accessing the EHR Web services posed a challenge, though the roadblocks were not technical in nature. The lack of a formal, end-to-end institutional process for requesting Web service access and a mechanism to shepherd the request through all stages of implementation proved to be the biggest barrier. CONCLUSIONS: We successfully deployed a mobile app with a custom user interface that can integrate with the EHR to retrieve laboratory results and appointment information using vendor-provided Web services. Developers should expect to face hurdles when integrating with the EHR, but many of them can be addressed with frequent communication and thorough documentation. Executive sponsorship is also a key factor for success. TRIAL REGISTRATION: ClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT).

19.
Blood Coagul Fibrinolysis ; 17(1): 1-5, 2006 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-16607071

RESUMEN

UNLABELLED: Homocysteine is associated with both myocardial infarction and arterial wall inflammation. To establish whether homocysteine is associated with myocardial infarction after adjusting for age, sex, the major cardiovascular risk factors and inflammatory risk predictors (fibrinogen, C-reactive protein and interleukin-6). A case-control study, using 364 myocardial infarction cases drawn from the north Glasgow MONICA study, 3-9 months after their event, and 383 controls drawn from the general population of the same geographical area. The odds ratio for myocardial infarction increased progressively across the four quarters of the homocysteine distribution, after adjusting for only age and sex or for the full adjustment (age, sex, smoking, systolic blood pressure, total cholesterol, fibrinogen, C-reactive protein and interleukin-6). The odds ratios produced by the two adjustments were similar. Comparing the top quarter with the bottom quarter of homocysteine, the odds ratio was 2.21 (95% confidence interval: 1.30-3.76) after the full adjustment. The odds ratio for a 5 micromol/l increase in homocysteine was 1.12 (95% confidence interval: 1.01-1.24) after the full adjustment. CONCLUSION: This study suggests that homocysteine has an effect on cardiovascular risk over and above that of inflammatory markers and the major cardiovascular risk factors.


Asunto(s)
Homocisteína/sangre , Infarto del Miocardio/etiología , Factores de Edad , Biomarcadores/sangre , Presión Sanguínea , Estudios de Casos y Controles , Colesterol/sangre , Femenino , Humanos , Inflamación/sangre , Masculino , Persona de Mediana Edad , Infarto del Miocardio/sangre , Oportunidad Relativa , Estudios Retrospectivos , Factores de Riesgo , Factores Sexuales , Fumar/sangre
20.
ANS Adv Nurs Sci ; 39(1): 15-25, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-26836990

RESUMEN

The stress and uncertainty created by a child's cancer diagnosis and treatment can affect parent and child functioning. Health technology provides a potential avenue for intervention delivery. Interviews were conducted with parents of children diagnosed with cancer to discover their needs following diagnosis and design a relevant mobile application. Treatment experience was the overarching theme. Subthemes included the emotional response, use of information, and environmental factors. Technology was used primarily to seek out information and communicate with others. Health technologies are gaining popularity and have the potential to be beneficial for patients and families throughout the treatment experience.


Asunto(s)
Neoplasias/psicología , Relaciones Padres-Hijo , Padres/psicología , Telemedicina/métodos , Adaptación Psicológica , Adulto , Femenino , Humanos , Masculino , Responsabilidad Parental/psicología
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