Impact of Condition Specific Camps on Resiliency and Adaptive Behavior in Children with Heart Conditions

Objectives: Resilience is the ability to adapt in stressful situations and overcome adversity through the use of effective coping strategies. Previous studies have demonstrated that condition-specific camps designed for children with epilepsy can increase adaptive coping skills including social interactions, cooperation, initiative, and communication in participants over a three-year period [1,2]. Additionally, research indicates that as a group, individuals who live with chronic health disorders exhibit less hope and have worse health outcomes when compared to their normative peers. The aim of this study was to determine the impact of condition-specific camps on children with heart conditions. Methods: 39 of 75 youths, diagnosed with heart conditions, attended Brainy Camps and participated in this study between 2012-2014. Participants included 5 females and 11 males in the 8-11 year old range and 10 females and 13 males in the 12-17 year old range. The Price-Emory Resiliency Scales, Herth Hope Index, and the Loneliness Scales were completed pre and post camp. A T-score range was used to determine if children with heart conditions differed from normative data in terms of resilience. Resiliency was evaluated among the campers using the subscales of mastery, relatedness, and emotional reactivity. Averages for the pre- and post- camp scores were taken for both single year and consecutive year participants and compared to average scores in the normative data. Results: The 39 children who attended camp demonstrated positive changes in resiliency including emotional reactivity, and hope, by the end of their first year. However, decreased scores in mastery and relatedness and increases in loneliness were also noted. For the 13 children who participated for 2 consecutive years and 3 children who participated for 3 consecutive years, increases in hope and decreases in loneliness were improved with each additional year of attendance. Conclusions: These findings demonstrate a positive shift in hope, loneliness and resiliency in children with heart conditions who attended camp consistently over several years. These findings highlight the potential impact that hope and perceived social support can be influential factors on resilience. Some limitations of this study included small numbers of participants, having data collection pre camp in the child’s home versus post camp at the campsite, and loss to follow up across years. Further research is needed to understand additional factors may influence resiliency in children with heart conditions. For children with chronic illnesses to successfully manage their healthcare, interventions tailored to encourage a sense of hope and social support may prove beneficial. References 1. Cushner-Weinstein, S., Berl, M., Salpekar, J.A., Johnson, J.L., Pearl, P.L., Conry, J.A., Kolodgie, M., Scully, A., Gaillard, W.D., Weinstein, S.L. (2006, October). The benefits of a camp designed for children with epilepsy: Evaluating adaptive behaviors over 3 years. Epilepsy & Behavior. Retrived July 27, 2012 from ScienceDirect. 2. Cushner-Weinstein, S., Walsh, K., Acosta, M., Packer, R.. Hope and perceived social support as predictors of resilience in children with Neurofibromatosis Type 1 [Abstract] 3. Prince-Embury, S. (2007). Resiliency Scales and Profiles: T Score Ranges. Resiliency Scales For Children & Adolescents: A Profile of Personal Strengths. Pages 25-26

Using Open Public Meetings and Elections to Promote Inward Transparency and Accountability: Lessons from Zambia

BackgroundCommunity-led governance can ensure that leaders are accountable to the populations they serve and strengthen health systems for maternal care. A key aspect of democratic accountability is electing respective governance bodies, in this case community boards, and holding public meetings to inform community members about actions taken on their behalf. After helping build and open 10 maternity waiting homes (MWHs) in rural Zambia as part of a randomized controlled trial, we assisted community governance committees to plan and execute annual meetings to present performance results and, where needed, to elect new board members. MethodsWe applied a principally qualitative design using observation and analysis of written documentation of public meetings to answer our research question: how do governance committees enact inward transparency and demonstrate accountability to their communities. The analysis measured participation and stakeholder representation at public meetings, the types and purposes of accountability sought by community members as evidenced by questions asked of the governance committee, and responsiveness of the governance committee to issues raised at public meetings. ResultsPublic meetings were attended by 6 out of 7 possible stakeholder groups, and reports were generally transparent. Stakeholders asked probing questions focused mainly on financial performance. Governance committee members were responsive to questions raised by participants, with 59% of answers rated as fully or mostly responsive (showing understanding of and answering the question). Six of the 10 sites held elections to re-elect or replace governance committee members. Only 2 sites reached the target set by local stakeholder committees of 50% female membership, down from 3 at formation. To further improve transparency and accountability, community governance committees need to engage in advance preparation of reports, and should consult with stakeholders on broader measures for performance assessment. Despite receiving training, community-level governance committees lacked understanding of the strategic purpose of open public meetings and elections, and how these relate to democratic accountability. They were therefore not motivated to engage in tactics to manage stakeholders effectively. ConclusionWhile open meetings and elections have potential to enhance good governance at the community level, continuous training and mentoring are needed to build capacity and enhance sustainability

A Qualitative Exploration of Community Ownership of a Maternity Waiting Home Model in Rural Zambia

Context Ownership is an important construct of sustainability for community-based health programming, though it is often not clearly defined or measured. We implemented and evaluated a community-driven maternity waiting home (MWH) model in rural Zambia. We engaged stakeholders at all levels and provided intensive mentorship to an MWH governance committee comprised of community-selected members. We then examined how different stakeholders perceive community ownership of the MWH. Methods We conducted 42 focus group discussions with community stakeholders (pregnant women, fathers, elders, and community health volunteers) and 161 in-depth interviews with MWH stakeholders (health facility staff, district health officials, and MWH governance committee and management unit members) at multiple time-points over 24 months. We conducted a content analysis and triangulated findings to understand community ownership of the MWH and observe changes in perceptions of ownership over time. Results Community members’ perceptions of ownership were related to their ability to use the MWH and a responsibility toward its success. Community and MWH stakeholders described increasingly more specific responsibilities over time. Governance committee and management unit members perceived their ability to represent the community as a crucial component of their role. Multiple respondent types saw collaboration between the governance committee and the health facility staff as key to allowing the MWH to meet its goal of serving the community. Conclusion The perceptions of community ownership evolved as the intervention became more established. Use of the MWH, and clear understanding of roles and responsibilities in management of the MWH, seemed to foster feelings of community ownership. To improve the sustainability of community-based maternal and child health programs, interventions should be accessible to target communities and clear roles should be established among stakeholders

Evaluating implementation effectiveness and sustainability of a maternity waiting homes intervention to improve access to safe delivery in rural Zambia: A mixed-methods protocol

Background: In low-income countries such as Zambia, where maternal mortality rates are persistently high, maternity waiting homes (MWHs) represent one potential strategy to improve access to safe delivery, especially for women living in remote areas. The Maternity Homes Access in Zambia project (MAHMAZ) is evaluating the impact of a MWH model on women’s access to safe delivery in rural Zambia. There is a growing need to understand not only the effectiveness of interventions but also the effectiveness of their implementation in order to appropriately interpret outcomes. There is little evidence to guide effective implementation of MWH for both immediate uptake and to promote sustainability in this context. This protocol describes a study that aims to investigate the effectiveness of the implementation of MAHMAZ by not only documenting fidelity but also identifying factors that influence implementation success and affect longer-term sustainability. Methods: This study will use mixed methods to evaluate the implementation effectiveness and sustainability of the MAHMAZ intervention. In our study, “implementation effectiveness” means to expand beyond measuring fidelity to the MWH model and includes assessing both the adoption and uptake of the model and identifying those factors that facilitate or inhibit uptake. Sustainability is defined as the routine implementation of an intervention after external support has ended. Quantitative methods include extracting data from existing records at the MWHs and health facilities to analyze patterns of utilization, and conducting a routine health facility assessment to determine facility-level factors that may influence MWH implementation and woman-level outcomes. We will also conduct an experience survey with MWH users and apply a checklist to assess fidelity to the MWH model. Qualitative methods include in-depth interviews and focus group discussions with MWH users, community members and other stakeholders. Qualitative data will be analyzed using an integrated framework drawing constructs from the Consolidated Framework for Implementation Research and the Conceptual Framework for Sustainability. Discussion: The findings from this evaluation will be shared with policymakers formulating policy affecting the implementation of MWH and may be used as evidence for programmatic decisions by the government and supporting agencies in deciding to take this model to scale

Out-of-pocket expenditure for home and facility based delivery among rural women in Zambia: a mixed-methods, cross-sectional study

Purpose: Out-of-pocket expenses associated with facility-based delivery are a well-known barrier to health care access. However, there is extremely limited contemporary information on delivery-related household out-of-pocket expenditure in sub-Saharan Africa. We assess the financial burden of delivery for the most remote Zambian women and compare differences between delivery locations (primary health center, hospital, or home). Methods: We conducted household surveys and in-depth interviews among randomly selected remote Zambian women who delivered a baby within the last 13 months. Women reported expenditures for their most-recent delivery for delivery supplies, transportation, and baby clothes, among others. Expenditures were converted to US dollars for analysis. Results: Of 2280 women sampled, 2223 (97.5%) reported spending money on their delivery. Nearly all respondents in the sample (95.9%) spent money on baby clothes/blanket, while over 80% purchased delivery supplies such as disinfectant or cord clamps, and a third spent on transportation. Women reported spending a mean of USD28.76 on their delivery, with baby clothes/blanket (USD21.46) being the main expenditure and delivery supplies (USD3.81) making up much of the remainder. Compared to women who delivered at home, women who delivered at a primary health center spent nearly USD4 (p\u3c0.001) more for their delivery, while women who delivered at a level 1 or level 2 hospital spent over USD7.50 (p\u3c0.001) more for delivery. Conclusion: These expenses account for approximately one third of the monthly household income of the poorest Zambian households. While the abolition of user fees has reduced the direct costs of delivering at a health facility for the poorest members of society, remote Zambian women still face high out-of-pocket expenses in the form of delivery supplies that facilities should provide as well as unofficial policies/norms requiring women to bring new baby clothes/blanket to a facility-based delivery. Future programs that target these expenses may increase access to facility-based delivery

Trait impulsivity in Juvenile Myoclonic Epilepsy

Impulsivity is a multidimensional construct that can predispose to psychopathology. Meta‐analysis demonstrates an association between response impulsivity and Juvenile Myoclonic Epilepsy (JME), a common genetic generalized epilepsy. Here, we test the hypotheses that trait impulsivity is (i) elevated in JME compared to controls; (ii) moderated by specific seizure characteristics; and (iii) associated with psychiatric adverse effects of antiepileptic drugs (AEDs)

Effects of antiplatelet therapy on stroke risk by brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases: subgroup analyses of the RESTART randomised, open-label trial

Background Findings from the RESTART trial suggest that starting antiplatelet therapy might reduce the risk of recurrent symptomatic intracerebral haemorrhage compared with avoiding antiplatelet therapy. Brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases (such as cerebral microbleeds) are associated with greater risks of recurrent intracerebral haemorrhage. We did subgroup analyses of the RESTART trial to explore whether these brain imaging features modify the effects of antiplatelet therapy

Sex-specific disease modifiers in juvenile myoclonic epilepsy

Juvenile myoclonic epilepsy (JME) is a common idiopathic generalised epilepsy with variable seizure prognosis and sex differences in disease presentation. Here, we investigate the combined epidemiology of sex, seizure types and precipitants, and their influence on prognosis in JME, through cross-sectional data collected by The Biology of Juvenile Myoclonic Epilepsy (BIOJUME) consortium. 765 individuals met strict inclusion criteria for JME (female:male, 1.8:1). 59% of females and 50% of males reported triggered seizures, and in females only, this was associated with experiencing absence seizures (OR = 2.0, p < 0.001). Absence seizures significantly predicted drug resistance in both males (OR = 3.0, p = 0.001) and females (OR = 3.0, p < 0.001) in univariate analysis. In multivariable analysis in females, catamenial seizures (OR = 14.7, p = 0.001), absence seizures (OR = 6.0, p < 0.001) and stress-precipitated seizures (OR = 5.3, p = 0.02) were associated with drug resistance, while a photoparoxysmal response predicted seizure freedom (OR = 0.47, p = 0.03). Females with both absence seizures and stress-related precipitants constitute the prognostic subgroup in JME with the highest prevalence of drug resistance (49%) compared to females with neither (15%) and males (29%), highlighting the unmet need for effective, targeted interventions for this subgroup. We propose a new prognostic stratification for JME and suggest a role for circuit-based risk of seizure control as an avenue for further investigation

Effects of antiplatelet therapy after stroke due to intracerebral haemorrhage (RESTART): a randomised, open-label trial

Background: Antiplatelet therapy reduces the risk of major vascular events for people with occlusive vascular disease, although it might increase the risk of intracranial haemorrhage. Patients surviving the commonest subtype of intracranial haemorrhage, intracerebral haemorrhage, are at risk of both haemorrhagic and occlusive vascular events, but whether antiplatelet therapy can be used safely is unclear. We aimed to estimate the relative and absolute effects of antiplatelet therapy on recurrent intracerebral haemorrhage and whether this risk might exceed any reduction of occlusive vascular events. Methods: The REstart or STop Antithrombotics Randomised Trial (RESTART) was a prospective, randomised, open-label, blinded endpoint, parallel-group trial at 122 hospitals in the UK. We recruited adults (≥18 years) who were taking antithrombotic (antiplatelet or anticoagulant) therapy for the prevention of occlusive vascular disease when they developed intracerebral haemorrhage, discontinued antithrombotic therapy, and survived for 24 h. Computerised randomisation incorporating minimisation allocated participants (1:1) to start or avoid antiplatelet therapy. We followed participants for the primary outcome (recurrent symptomatic intracerebral haemorrhage) for up to 5 years. We analysed data from all randomised participants using Cox proportional hazards regression, adjusted for minimisation covariates. This trial is registered with ISRCTN (number ISRCTN71907627). Findings: Between May 22, 2013, and May 31, 2018, 537 participants were recruited a median of 76 days (IQR 29–146) after intracerebral haemorrhage onset: 268 were assigned to start and 269 (one withdrew) to avoid antiplatelet therapy. Participants were followed for a median of 2·0 years (IQR [1·0– 3·0]; completeness 99·3%). 12 (4%) of 268 participants allocated to antiplatelet therapy had recurrence of intracerebral haemorrhage compared with 23 (9%) of 268 participants allocated to avoid antiplatelet therapy (adjusted hazard ratio 0·51 [95% CI 0·25–1·03]; p=0·060). 18 (7%) participants allocated to antiplatelet therapy experienced major haemorrhagic events compared with 25 (9%) participants allocated to avoid antiplatelet therapy (0·71 [0·39–1·30]; p=0·27), and 39 [15%] participants allocated to antiplatelet therapy had major occlusive vascular events compared with 38 [14%] allocated to avoid antiplatelet therapy (1·02 [0·65–1·60]; p=0·92). Interpretation: These results exclude all but a very modest increase in the risk of recurrent intracerebral haemorrhage with antiplatelet therapy for patients on antithrombotic therapy for the prevention of occlusive vascular disease when they developed intracerebral haemorrhage. The risk of recurrent intracerebral haemorrhage is probably too small to exceed the established benefits of antiplatelet therapy for secondary prevention

Effects of antiplatelet therapy after stroke due to intracerebral haemorrhage (RESTART): a randomised, open-label trial

Background: Antiplatelet therapy reduces the risk of major vascular events for people with occlusive vascular disease, although it might increase the risk of intracranial haemorrhage. Patients surviving the commonest subtype of intracranial haemorrhage, intracerebral haemorrhage, are at risk of both haemorrhagic and occlusive vascular events, but whether antiplatelet therapy can be used safely is unclear. We aimed to estimate the relative and absolute effects of antiplatelet therapy on recurrent intracerebral haemorrhage and whether this risk might exceed any reduction of occlusive vascular events. Methods: The REstart or STop Antithrombotics Randomised Trial (RESTART) was a prospective, randomised, open-label, blinded endpoint, parallel-group trial at 122 hospitals in the UK. We recruited adults (≥18 years) who were taking antithrombotic (antiplatelet or anticoagulant) therapy for the prevention of occlusive vascular disease when they developed intracerebral haemorrhage, discontinued antithrombotic therapy, and survived for 24 h. Computerised randomisation incorporating minimisation allocated participants (1:1) to start or avoid antiplatelet therapy. We followed participants for the primary outcome (recurrent symptomatic intracerebral haemorrhage) for up to 5 years. We analysed data from all randomised participants using Cox proportional hazards regression, adjusted for minimisation covariates. This trial is registered with ISRCTN (number ISRCTN71907627). Findings: Between May 22, 2013, and May 31, 2018, 537 participants were recruited a median of 76 days (IQR 29–146) after intracerebral haemorrhage onset: 268 were assigned to start and 269 (one withdrew) to avoid antiplatelet therapy. Participants were followed for a median of 2·0 years (IQR [1·0– 3·0]; completeness 99·3%). 12 (4%) of 268 participants allocated to antiplatelet therapy had recurrence of intracerebral haemorrhage compared with 23 (9%) of 268 participants allocated to avoid antiplatelet therapy (adjusted hazard ratio 0·51 [95% CI 0·25–1·03]; p=0·060). 18 (7%) participants allocated to antiplatelet therapy experienced major haemorrhagic events compared with 25 (9%) participants allocated to avoid antiplatelet therapy (0·71 [0·39–1·30]; p=0·27), and 39 [15%] participants allocated to antiplatelet therapy had major occlusive vascular events compared with 38 [14%] allocated to avoid antiplatelet therapy (1·02 [0·65–1·60]; p=0·92). Interpretation: These results exclude all but a very modest increase in the risk of recurrent intracerebral haemorrhage with antiplatelet therapy for patients on antithrombotic therapy for the prevention of occlusive vascular disease when they developed intracerebral haemorrhage. The risk of recurrent intracerebral haemorrhage is probably too small to exceed the established benefits of antiplatelet therapy for secondary prevention