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1.
Front Public Health ; 9: 719640, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34888278

RESUMEN

Background: Families are integrally involved in day-to-day caregiving of children with neurodevelopmental and intellectual disabilities (NDID). Given the widespread and increasing prevalence of children with NDID and the impact of family caregiving on psychological, social, and economic implications for both the child and family, understanding and supporting these families is an important public health concern. Objective: We conducted a scoping review on peer support networks to understand their implications on families. Considering increasing prevalence of NDID's, understanding the implications of existing networks is critical to improve and nurture future support networks that can complement and reduce the burden on existing formal support systems. Design: A comprehensive search of multiple databases was conducted. Articles were screened by two reviewers and any disagreements were resolved by a third reviewer. We explored existing research on parent-to-parent peer support networks, which included networks that developed informally as well as those that involved a formal facilitator for the group interpersonal processes. There were no limits on the study design, date and setting of the articles. We included all research studies in English that included an identifier for (i) "peer support networks," (ii) "children with neurodevelopmental and intellectual disabilities" and (iii) "family caregiver outcomes." Results: We identified 36 articles. Majority of the studies were conducted in North America, and were face to face networks. They included families of children with a wide range of NDIDs. Relevant information extracted from different studies highlighted peer support network characteristics and development process, needs of family caregivers attending these networks, factors affecting caregiver participation and the impact of peer support networks on family caregivers. These networks represent a way to strengthen family caregivers, developing resilience and social interactions. Family caregivers sharing similar experiences support one another and provide critical information to each other. Although results are encouraging, future studies incorporating improved study designs are needed to better evaluate the effectiveness of peer support networks. Furthermore, studies where peer support networks develop organically while the child is supported are warranted. Conclusion: Although results obtained are encouraging, our findings support the need for further research studies of peer support networks with better designs and more detailed description of the factors involved in the development.


Asunto(s)
Familia , Grupo Paritario , Apoyo Social , Niño , Familia/psicología , Humanos , Discapacidad Intelectual , Trastornos del Neurodesarrollo
2.
Front Psychol ; 12: 615148, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33584478

RESUMEN

This study investigated the characteristics and development of peer support networks in an effort to unravel the role of friendship in this developmental process. The relationships between friendship networks and peer support networks were explored, and the influence of dyadic and triadic friendships on the development of peer support relationships was examined. Two waves of data were collected among a sample of adolescents in six Chinese junior high schools (n = 913 students from 28 classrooms; mean age = 14.13 years; 50.49% boys), and classroom friendship networks and peer support networks were analyzed. The results showed that peer support networks were sparse, hierarchical, and sex-segregated. Furthermore, peer support networks and friendship networks partially overlapped. Friends tended to have similar support-seeking and support-providing ties. Longitudinal multiplex social network analysis revealed that peer support networks changed moderately over time, and friendships played various roles in the development of peer support networks. Dyadic friendships improved the formation of peer support ties. A mutual friend improved the formation of support relationships between two students when the mutual friend chose the two students as friends, but a mutual friend also hindered or had no effects on the formation of support relationships in other cases. The implications for educators to improve peer support networks are presented, and directions for future research are discussed.

3.
Implement Sci ; 15(1): 107, 2020 12 11.
Artículo en Inglés | MEDLINE | ID: mdl-33308257

RESUMEN

BACKGROUND: With the global shortage of skilled health workers estimated at 7.2 million, outpatient tuberculosis (TB) care is commonly task-shifted to lay health workers (LHWs) in many low- and middle-income countries where the shortages are greatest. While shown to improve access to care and some health outcomes including TB treatment outcomes, lack of training and supervision limit the effectiveness of LHW programs. Our objective was to refine and evaluate an intervention designed to address common causes of non-adherence to TB treatment and LHW knowledge and skills training needs. METHODS: We employed a pragmatic cluster randomized controlled trial. Participants included 103 health centres (HCs) providing TB care in four districts in Malawi, randomized 1:1 stratified by district and HC funding (Ministry of Health, non-Ministry funded). At intervention HCs, a TB treatment adherence intervention was implemented using educational outreach, a point-of-care reminder tool, and a peer support network. Clusters in the control arm provided usual care. The primary outcome was the proportion of patients with successful TB treatment (i.e., cure or treatment completion). We used a generalized linear mixed model, with district as a fixed effect and HC as a random effect, to compare proportions of patients with treatment success, among the trial arms, with adjustment for baseline differences. RESULTS: We randomized 51 HCs to the intervention group and 52 HCs to the control group. Four intervention and six control HCs accrued no eligible patients, and 371 of 1169 patients had missing outcome, HC, or demographic data, which left 74 HCs and 798 patients for analysis. Randomization group was not related to missing outcome, however, district, age, and TB type were significantly related and included in the primary analysis model. Among the 1153 patients with HC and demographic data, 297/605 (49%) and 348/548 (64%) in the intervention and control arms, respectively, had treatment success. The intervention had no significant effect on treatment success (adjusted odds ratio 1.35 [95% confidence interval 0.93-1.98]). CONCLUSION: We found no significant effect of the intervention on TB treatment outcomes with high variability in implementation quality, highlighting important challenges to both scale-up and sustainability. TRIAL REGISTRATION: ClinicalTrials.gov NCT02533089 . Registered August 20, 2015.


Asunto(s)
Agentes Comunitarios de Salud , Tuberculosis , Consejo , Humanos , Grupo Paritario , Cumplimiento y Adherencia al Tratamiento , Tuberculosis/tratamiento farmacológico
4.
Clin Ther ; 39(11): 2181-2188, 2017 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-29096919

RESUMEN

To date, social media has been used predominantly by the pharmaceutical industry to market products and to gather feedback and comments on products from consumers, a process termed social listening. However, social media has only been used cautiously in the drug development cycle, mainly because of regulations, restrictions on engagement with patients, or a lack of guidelines for social media use from regulatory bodies. Despite this cautious approach, there is a clear drive, from both the industry and consumers, for increased patient participation in various stages of the drug development process. The authors use the example of HealthUnlocked, one of the world's largest health networks, to illustrate the potential applications of online health communities as a means of increasing patient involvement at various stages of the drug development process. Having identified the willingness of the user population to be involved in research, numerous ways to engage users on the platform have been identified and explored. This commentary describes some of these approaches and reports how online health networks that encourage people to share their experiences in managing their health can, in turn, enable rapid patient engagement for clinical research within the constraints of industry regulation.


Asunto(s)
Participación del Paciente , Investigación/organización & administración , Medios de Comunicación Sociales , Diseño de Fármacos , Industria Farmacéutica/métodos , Humanos , Internet , Apoyo Social
5.
Trials ; 17(1): 439, 2016 09 07.
Artículo en Inglés | MEDLINE | ID: mdl-27604571

RESUMEN

BACKGROUND: Despite availability of effective treatment, tuberculosis (TB) remains an important cause of morbidity and mortality globally, with low- and middle-income countries most affected. In many such settings, including Malawi, the high burden of disease and severe shortage of skilled healthcare workers has led to task-shifting of outpatient TB care to lay health workers (LHWs). LHWs improve access to healthcare and some outcomes, including TB completion rates, but lack of training and supervision limit their impact. The goals of this study are to improve TB care provided by LHWs in Malawi by refining, implementing, and evaluating a knowledge translation strategy designed to address a recognized gap in LHWs' TB and job-specific knowledge and, through this, to improve patient outcomes. METHODS/DESIGN: We are employing a mixed-methods design that includes a pragmatic cluster randomized controlled trial and a process evaluation using qualitative methods. Trial participants will include all health centers providing TB care in four districts in the South East Zone of Malawi. The intervention employs educational outreach, a point-of-care reminder tool, and a peer support network. The primary outcome is proportion of treatment successes, defined as the total of TB patients cured or completing treatment, with outcomes taken from Ministry of Health treatment records. With an alpha of 0.05, power of 0.80, a baseline treatment success of 0.80, intraclass correlation coefficient of 0.1 based on our pilot study, and an estimated 100 clusters (health centers providing TB care), a minimum of 6 patients per cluster is required to detect a clinically significant 0.10 increase in the proportion of treatment successes. Our process evaluation will include interviews with LHWs and patients, and a document analysis of LHW training logs, quarterly peer trainer meetings, and mentorship meeting notes. An estimated 10-15 LHWs and 10-15 patients will be required to reach saturation in each of 2 planned interview periods, for a total of 40-60 interview participants. DISCUSSION: This study will directly inform the efforts of knowledge users within TB care and, through extension of the approach, other areas of care provided by LHWs in Malawi and other low- and middle-income countries. TRIAL REGISTRATION: ClinicalTrials.gov NCT02533089 . Registered 20 August 2015. Protocol Date/Version 29 May 2016/Version 2.


Asunto(s)
Protocolos Clínicos , Agentes Comunitarios de Salud/educación , Sistemas de Atención de Punto , Tuberculosis/terapia , Conocimientos, Actitudes y Práctica en Salud , Humanos , Malaui , Investigación Cualitativa , Tamaño de la Muestra , Investigación Biomédica Traslacional
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