A Systematic Review of Race/Ethnicity and Parental Treatment Decision-Making.
Caregivers; Clinical; Databases; Decision Making; Ethnic Groups; Health Resource Utilization; Human; Parental Attitudes; Patient Compliance; Pediatrics; Physician Attitudes; Race Factors; Systematic Review; Terminally Ill Patients
Patient race/ethnicity affects health care utilization, provider trust, and treatment choice. It is uncertain how these influences affect pediatric care. We performed a systematic review (PubMed, Scopus, Web of Science, PsycINFO, Cochrane, and Embase) for articles examining race/ethnicity and parental treatment decision-making, adhering to PRISMA methodology. A total of 9200 studies were identified, and 17 met inclusion criteria. Studies focused on treatment decisions concerning end-of-life care, human papillomavirus vaccination, urological surgery, medication regimens, and dental care. Findings were not uniform between studies; however, pooled results showed (1) racial/ethnic minorities tended to prefer more aggressive end-of-life care; (2) familial tradition of neonatal circumcision influenced the decision to circumcise; and (3) non-Hispanic Whites were less likely to pursue human papillomavirus vaccination but more likely to complete the vaccine series if initiated. The paucity of studies precluded overarching findings regarding the influence of race/ethnicity on parental treatment decisions. Further investigation may improve family-centered communication, parent engagement, and shared decision-making.
Harris VC; Links AR; Walsh J; Schoo DP; Lee AH; Tunkel DE; Boss EF
Clinical Pediatrics
2018
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<a href="http://doi.org/10.1177/0009922818788307" target="_blank" rel="noreferrer noopener">10.1177/0009922818788307</a>
Adolescents with renal disease in an adult world: meeting the challenge of transition of care
Delivery of Health Care; Humans; Pediatrics; Parent-Child Relations; Age Factors; Continuity of Patient Care; Adolescent Health Services; Patient Compliance; adolescent; Adolescent Transitions; Kidney Diseases/psychology/therapy; Adolescent Medicine; Nephrology
2007
Bell L
Nephrology, Dialysis, Transplantation
2007
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Journal Article
<a href="http://doi.org/10.1093/ndt/gfl770" target="_blank" rel="noreferrer">10.1093/ndt/gfl770</a>
Medical adherence and childhood chronic illness: family daily management skills and emotional climate as emerging contributors
Child; Humans; Home Nursing; Emotions; Patient Compliance; Family/psychology; Adolescent Transitions; Chronic disease; Cystic Fibrosis/therapy; Asthma/therapy; Diabetes Mellitus/therapy
PURPOSE OF REVIEW: To describe recent research that examines family factors that promote or derail adherence to medical regimens for children with chronic health conditions, primarily asthma, diabetes, and cystic fibrosis. From the past 2 years, eight correlational studies were identified which specifically examined the links between family management strategies, family climate and medical adherence. RECENT FINDINGS: Findings from the studies suggest that team-based management strategies and cohesive family climate promote adherence to medical treatments over time. Family interactions that are characterized by conflict and disengagement tend to disrupt adherence and inevitably cause a decline in child health. Moreover, these findings seem to be moderated by child age in that poorer adherence often occurs when a child reaches adolescence and is searching for greater autonomy. SUMMARY: Future research should consider the challenges in measuring medical adherence in the family context as well as incorporating more naturalistic studies of family interactions. Randomized controlled trials using family-based interventions may consider focusing on medical adherence as an important mediator between family process and child health outcomes.
2006
Fiese BH; Everhart RS
Current Opinion In Pediatrics
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/01.mop.0000245357.68207.9b" target="_blank" rel="noreferrer">10.1097/01.mop.0000245357.68207.9b</a>
Chronic illness and disability
Humans; Emotions; Mental Health; Family Health; Primary Health Care; Patient Compliance; adolescent; Adolescent Transitions; Patient Transfer; Educational Status; Chronic Disease/psychology/therapy; Disabled Persons/psychology
2005
Yeo M; Sawyer S
Bmj (clinical Research Ed.)
2005
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Journal Article
<a href="http://doi.org/10.1136/bmj.330.7493.721" target="_blank" rel="noreferrer">10.1136/bmj.330.7493.721</a>
Risk taking, depression, adherence, and symptom control in adolescents and young adults with asthma
Humans; Adult; Adolescent Behavior; Patient Compliance; adolescent; Adolescent Transitions; Risk-Taking; Asthma/drug therapy/psychology; Mood Disorders/etiology
Risk behaviors, including tobacco, alcohol, and drug use, are common in adolescents and young adults. Those who engage in one risk behavior are likely to engage in additional health risk behaviors, and as the number of risk behaviors increase, depression comorbidity emerges. For young people with chronic illness, risk behavior and depression are also common. There is some evidence that both depression and risk behavior are associated with nonadherence to medications, poor treatment outcomes, and death. The relationship between depression and asthma may involve more than one causal pathway and includes the possibility that depression can lead to a sense of hopelessness that erodes adherence and other health-promoting behavior, or that depression impacts asthma directly by altering the immune system. An assessment of the interplay between risk behavior, depression, adherence, and asthma can add important new information to our understanding about how to identify and treat those at greatest risk for poorly controlled disease and asthma-related death. New behavioral studies must overcome the shortcomings frequently seen in previous research and include well-designed and controlled investigations using valid behavioral measures of risk behavior, mood disorder, and adherence; recruitment that includes sufficient numbers of subjects and gives careful consideration of selection bias; and employment of multivariate data modeling to allow for simultaneous statistical examination of multiple relationships.
2006
Bender BG
American Journal Of Respiratory And Critical Care Medicine
2006
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Journal Article
<a href="http://doi.org/10.1164/rccm.200511-1706PP" target="_blank" rel="noreferrer">10.1164/rccm.200511-1706PP</a>
Safety of polyethylene glycol 3350 for the treatment of chronic constipation in children
Child; Female; Humans; Male; Questionnaires; Prospective Studies; Patient Compliance; adolescent; Preschool; Non-U.S. Gov't; Research Support; Chronic disease; Alanine Transaminase/blood; Cathartics/therapeutic use; Constipation/drug therapy; Encopresis/drug therapy; Polyethylene Glycols/therapeutic use
OBJECTIVES: To assess the clinical and biochemical safety profile of long-term polyethylene glycol 3350 (PEG) therapy in children with chronic constipation and to assess pediatric patient acceptance of PEG therapy. DESIGN: Prospective observational study. SETTING: Pediatric clinics at a referral center.Patients Eighty-three children (44 with chronic constipation, 39 with constipation and encopresis) receiving PEG therapy for more than 3 months. MAIN OUTCOME MEASURES: Clinical adverse effects related to PEG therapy and acceptance and compliance with PEG therapy. Serum electrolyte levels, osmolality, albumin levels, and liver and renal function test results were measured. RESULTS: At the time of evaluation, the mean duration of PEG therapy was 8.7 months, and the mean PEG dose was 0.75 g/kg daily. There were no major clinical adverse effects. All blood test results were normal, except for transient minimal alanine aminotransferase elevation unrelated to therapy in 9 patients. All children preferred PEG to previously used laxatives, and daily compliance was measured as good in 90% of children. CONCLUSIONS: Long-term PEG therapy is safe and is well accepted by children with chronic constipation with and without encopresis.
2003
Pashankar DS; Loening-Baucke V; Bishop WP
Archives Of Pediatrics & Adolescent Medicine
2003
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Journal Article
<a href="http://doi.org/10.1001/archpedi.157.7.661" target="_blank" rel="noreferrer">10.1001/archpedi.157.7.661</a>
Management of burn pain in children
Child; Humans; Analgesics; Patient Compliance; Analgesics/administration & dosage/therapeutic use; Bandages/adverse effects; Burns/complications/physiopathology; Opioid/administration & dosage/pharmacokinetics/pharmacology/therapeutic use; Pain/physiopathology/therapy
In spite of the many possible methods of pain control in the burned child satisfactory pain management may still be a problem, at times formidable. The most fruitful approach would seem to be frequent assessment of pain in the individual patient with a readiness to try alternative or additional measures when relief seems inadequate. In this way the most effective analgesic agent(s), route(s), and frequency of administration, as well as nonpharmacologic methods, can be determined for each child. Among those able to speak, pain estimation is usually easily accomplished. In infants and those intubated for supported ventilation, however, the task is more difficult. Nevertheless, careful observation of physiologic signs such as heart rate and blood pressure, facial expressions, body movement and position, and the quality of an infant's cries may in sum be sufficient to evaluate the intensity of pain. Monitoring of analgesic plasma levels to ascertain that they are within the ranges established for good analgesia and even determination of beta-endorphin blood levels may also aid in judging the adequacy of analgesia. By tailoring pain management methods to the needs of each child it may be possible to keep pain at acceptable levels in victims of burn injury.
1989
Osgood PF; Szyfelbein SK
Pediatric Clinics Of North America
1989
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Journal Article
<a href="http://doi.org/10.1016/s0031-3955(16)36733-5" target="_blank" rel="noreferrer">10.1016/s0031-3955(16)36733-5</a>
Informed dissent: the views of some mothers of severely mentally handicapped young adults
Female; Humans; infant; Adult; Middle Aged; Euthanasia; Disabled Persons; Informed Consent; Patient Compliance; Empirical Approach; Mental Health Therapies; Death and Euthanasia; Mothers/psychology; Newborn; Genetics and Reproduction; Passive; Value of Life; Abortion; Congenital Abnormalities/therapy; Induced
Much of the discussion since the Arthur case has centred round the rights of handicapped infants to medical treatment. Little has centred round the question of how far one person can rightly be required to sacrifice her life for another, when she has not been consulted beforehand. This may be due to the fact that most of the discussants are men, while nearly all the carers are women. This small study attempts to redress this balance by asking mothers who have cared for 20 years, whether they felt it was worthwhile.; KIE: As part of a larger study by a British regional health authority, 15 mothers of severely mentally handicapped young adults from varying socioeconomic areas were asked for their views on selective abortion and treatment of severely handicapped newborns. Ten of the 15 women wished with hindsight that they could have had an abortion, and 12 thought such infants should be allowed to die. Simms concludes that the views of those who have cared devotedly for their severely mentally handicapped children deserve more consideration. Davis, herself disabled and an activist for the handicapped, asserts that human rights devolve to every individual at fertilization and cannot be apportioned according to perceived "worth." She suggests that parents who are unable to cope with a handicapped child should consider offering the baby for adoption as an alternative to "killing" the child.
1986
Simms M
Journal Of Medical Ethics
1986
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Journal Article
<a href="http://doi.org/10.1136/jme.12.2.72" target="_blank" rel="noreferrer">10.1136/jme.12.2.72</a>
The n-of-1 randomized controlled trial: clinical usefulness. Our three-year experience
Female; Humans; Adult; Physician's Role; Research Design; Double-Blind Method; Patient Compliance; Clodronate; Randomized Controlled Trials/methods; Amitriptyline/therapeutic use; Propranolol/therapeutic use; Syncope/drug therapy
OBJECTIVE: To review the feasibility and effectiveness of n-of-1 randomized controlled trials (n-of-1 trials) in clinical practice. DESIGN: Individual trials were double-blind, randomized, multiple crossover trials. The impact of n-of-1 trials was determined by eliciting physicians' plans of management and confidence in those plans before and after each trial. SETTING: Referral service doing n-of-1 trials at the requests of community and academic physicians. OBJECT of ANALYSIS: All trials were planned, started, and completed by the n-of-1 service. MEASURES of OUTCOME: The proportion of planned n-of-1 trials that were completed and the proportion that provided a definite clinical or statistical answer. A definite clinical answer was achieved if an n-of-1 trial resulted in a high level of physician's confidence in the management plan. Specific criteria were developed for classifying an n-of-1 trial as providing a definite statistical answer. MAIN RESULTS: Seventy-three n-of-1 trials were planned in various clinical situations. Of 70 n-of-1 trials begun, 57 were completed. The reasons for not completing n-of-1 trials were patients' or physicians' noncompliance or patients' concurrent illness. Of 57 n-of-1 trials completed, 50 provided a definite clinical or statistical answer. In 15 trials (39% of trials in which appropriate data were available), the results prompted physicians to change their "prior to the trial" plan of management (in 11 trials, the physicians stopped the drug therapy that they had planned to continue indefinitely). CONCLUSION: We interpret the results as supporting the feasibility and usefulness of n-of-1 trials in clinical practice.
1990
Guyatt GH; Keller JL; Jaeschke R; Rosenbloom D; Adachi JD; Newhouse MT
Annals Of Internal Medicine
1990
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-112-4-293" target="_blank" rel="noreferrer">10.7326/0003-4819-112-4-293</a>