A community engagement approach for an integrated early childhood development intervention: a case study of an urban informal settlement with Kenyans and embedded refugees.

BACKGROUND: Community engagement is crucial for the design and implementation of community-based early childhood development (ECD) programmes. This paper aims to share key components and learnings of a community engagement process for an integrated ECD intervention. The lessons shared are drawn from a case study of urban informal settlement with embedded refugees in Nairobi, Kenya. METHODS: We conducted three stakeholder meetings with representatives from the Ministry of Health at County and Sub-County, actors in the ECD sector, and United Nations agency in refugee management, a transect walk across five villages (Ngando, Muslim, Congo, Riruta and Kivumbini); and, six debrief meetings by staff from the implementing organization. The specific steps and key activities undertaken, the challenges faced and benefits accrued from the community engagement process are highlighted drawing from the implementation team's perspective. RESULTS: Context relevant, well-planned community engagement approaches can be integrated into the five broad components of stakeholder engagement, formative research, identification of local resources, integration into local lives, and shared control/leadership with the local community. These can yield meaningful stakeholder buy-in, community support and trust, which are crucial for enabling ECD programme sustainability. CONCLUSION: Our experiences underscore that intervention research on ECD programmes in urban informal settlements requires a well-planned and custom-tailored community engagement model that is sensitive to the needs of each sub-group within the community to avoid unintentionally leaving anyone out.

Health seeking behaviors and childcare patterns in an informal settlement of Nairobi, Kenya: A cross-sectional study.

Children in urban informal settlements experience high risks for poor health and development. Understanding health seeking behaviors and childcare patterns of caregivers in urban informal settlements is important for devising effective interventions. This study describes household characteristics and aspects of nurturing care among caregivers of children aged 0-2 years in Dagoretti informal settlement, Nairobi-Kenya. In this cross sectional study, data were collected on household socio-demographic characteristics, antenatal care and child delivery practices, infant and young child feeding practices, activities that promote play, learning and school readiness, and on childcare and protection practices. Descriptive statistics of proportions and means were used to summarize the data. The study covers a total of 458 Kenyan and 118 immigrant households. Caregivers from immigrant households, with low education and from the younger age-group (less than 20 years) were vulnerable to sub-optimal caregiving and health seeking practices, including relatively lower rates of age-appropriate breastfeeding and poor dietary diversity. Seventy-five percent of expectant mothers attended less than four antenatal care visits. Households surveyed had limited possession of children's books (2% with three or more books), limited access to play materials (43% had two or more play materials), and low paternal involvement in child stimulation and early learning activities (14%). One-third and half of the children were left with inadequate care and disciplined using both violent and non-violent methods, respectively. Our findings highlight the urgent need for contextually appropriate and integrated interventions anchored in the WHO's nurturing care framework. These interventions can benefit from extensive involvement of caregivers, facility and community-based healthcare workers, policy makers, and other relevant stakeholders.

Mental Health during COVID-19 Pandemic among Caregivers of Young Children in Kenya's Urban Informal Settlements. A Cross-Sectional Telephone Survey.

The emergence of COVID-19 has profoundly affected mental health, especially among highly vulnerable populations. This study describes mental health issues among caregivers of young children and pregnant women in three urban informal settlements in Kenya during the first pandemic year, and factors associated with poor mental health. A cross-sectional telephone survey was administered to 845 participants. Survey instruments included the Patient Health Questionnaire-9, General Anxiety Disorder-7 scale, COVID-19 Anxiety Scale, and questions on the perceived COVID-19 effects on caregiver wellbeing and livelihood. Data were analyzed using descriptive statistics, and univariate and multivariate analysis. Caregivers perceived COVID-19 as a threatening condition (94.54%), affecting employment and income activities (>80%). Caregivers experienced discrimination (15.27%) and violence (12.6%) during the pandemic. Levels of depression (34%), general anxiety (20%), and COVID-19 related anxiety (14%) were highly prevalent. There were significant associations between mental health outcomes and economic and socio-demographic factors, violence and discrimination experiences, residency, and perceptions of COVID-19 as a threatening condition. Caregivers high burden of mental health problems highlights the urgent need to provide accessible mental health support. Innovative and multi-sectoral approaches will be required to maximize reach to underserved communities in informal settlements and tackle the root causes of mental health problems in this population.

The Occurrence of Sexual Risk Behaviors and Its Association With Psychological Well-Being Among Kenyan Adolescents.

Objective: Sexual risk behavior during adolescence is an important public health problem. Self-esteem and hopefulness are potentially important psychological factors that may play a role in the behavioral regulation mechanisms of adolescents. These factors are inadequately explored in sub-Saharan Africa. This study aimed at exploring patterns and associated factors for sexual risk behavior (SRB), self-esteem, and hopefulness among adolescents from a resource-poor setting in Kenya. Method: A cross-sectional study conducted in 2019 among 296 adolescents (12-17 years old) from rural Kilifi (n = 133) and urban informal settings of Nairobi (n = 163) in Kenya. Participants completed the Kilifi Health Risk Behavior Questionnaire, Rosenberg self-esteem questionnaire, and Hope scale administered via computerized tablets. A binary outcome variable based on the experience of adolescents of at least one of the five forms of SRB: transactional sex, sexual violence, intergenerational sex, early sexual debut, and condom non-use was generated. Bi-variate analysis was conducted to summarize various social-demographic and psychosocial factors. A multivariable logistic regression model was fitted to investigate factors associated with the occurrence of SRB, self-esteem, and hopefulness among adolescents. Results: About 13% of the participants had experienced a form of SRB, and among these, 36% reported co-occurrence of multiple forms of SRB. Adolescent SRB was largely characterized by having experienced sexual violence, as well as intergenerational and transactional sex. Higher scores of hopefulness were reported among adolescents who never experienced SRB (P = 0.03) at bivariate analysis level. However, both self-esteem and hopefulness were not significantly associated with the occurrence of SRB in the adjusted logistic regression analysis. Having depressive symptoms (Adj. OR = 3.8, 95% CI: 1.39-10.4), feeling unsafe in the neighborhood (Adj. OR = 3.4, 95% CI: 1.6-7.2), and being in higher compared with lower primary education level (Adj. OR = 0.3, 95% CI: 0.1-0.8) were statistically significantly associated with the occurrence of SRB. Conclusion: Targeted reproductive health interventions, designed with the cognizance of structural and social drivers of adolescent SRB, are needed to concurrently tackle multiple forms of SRB. It is important to integrate mental health promotion within these interventions. More research is needed to understand the mechanisms and implications of self-esteem and hopefulness for adolescent sexual and reproductive health.

An evaluation of self-management outcomes among chronic care patients in community home-based care programmes in rural Malawi: A 12-month follow-up study.

This paper investigates the impact of community home-based care (CHBC) on self-management outcomes for chronically ill patients in rural Malawi. A pre- and post-evaluation survey was administered among 140 chronically ill patients with HIV and non-communicable diseases, newly enrolled in four CHBC programmes. We translated, adapted and administered scales from the Stanford Chronic Disease Self-Management Programme to evaluate patient's self-management outcomes (health status and self-efficacy), at four time points over a 12-month period, between April 2016 and May 2017. The patient's drop-out rate was approximately 8%. Data analysis included descriptive statistics, tests of associations, correlations and pairwise comparison of outcome variables between time points, and multivariate regression analysis to explore factors associated with changes in self-efficacy following CHBC interventions. The results indicate a reduction in patient-reported pain, fatigue and illness intrusiveness, while improvements in general health status and quality of life were not statistically significant. At baseline, the self-efficacy mean was 5.91, which dropped to 5.1 after 12 months. Factors associated with this change included marital status, education, employment and were condition-related; whereby self-efficacy for non-HIV and multimorbid patients was much lower. The odds for self-efficacy improvement were lower for patients with diagnosed conditions of longer duration. CHBC programme support, regularity of contact and proximal location to other services influenced self-efficacy. Programmes maintaining regular home visits had higher patient satisfaction levels. Our findings suggest that there were differential changes in self-management outcomes following CHBC interventions. While self-management support through CHBC programmes was evident, CHBC providers require continuous training, supervision and sustainable funding to strengthen their contribution. Furthermore, sociodemographic and condition-related factors should inform the design of future interventions to optimise outcomes. This study provides a systematic evaluation of self-management outcomes for a heterogeneous chronically ill patient population and highlights the potential and relevant contribution of CHBC programmes in improving chronic care within sub-Saharan Africa.

Context matters: a qualitative study of the practicalities and dilemmas of delivering integrated chronic care within primary and secondary care settings in a rural Malawian district.

BACKGROUND: With the increasing double burden of communicable and non-communicable diseases (NCDs) in sub-Saharan Africa, health systems require new approaches to organise and deliver services for patients requiring long-term care. There is increasing recognition of the need to integrate health services, with evidence supporting integration of HIV and NCD services through the reorganisation of health system inputs, across system levels. This study investigates current practices of delivering and implementing integrated care for chronically-ill patients in rural Malawi, focusing on the primary level. METHODS: A qualitative study on chronic care in Phalombe district conducted between April 2016 and May 2017, with a sub-analysis performed on the data following a document analysis to understand the policy context and how integration is conceptualised in Malawi; structured observations in five of the 15 district health facilities, selected purposively to represent different levels of care (primary and secondary), and ownership (private and public). Fifteen interviews with healthcare providers and managers, purposively selected from the above facilities. Meetings with five non-governmental organisations to study their projects and support towards chronic care in Phalombe. Data were analysed using a thematic approach and managed in NVivo. RESULTS: Our study found that, while policies supported integration of various disease-specific programmes at point of care, integration efforts on the ground were severely hampered by human and health resource challenges e.g. inadequate consultation rooms, erratic supplies especially for NCDs, and an overstretched health workforce. There were notable achievements, though most prominent at the secondary level e.g. the establishment of a combined NCD clinic, initiating NCD screening within HIV services, and initiatives for integrated information systems. CONCLUSION: In rural Malawi, major impediments to integrated care provision for chronically-ill patients include the frail state of primary healthcare services and sub-optimal NCD care at the lowest healthcare level. In pursuit of integrative strategies, opportunities lie in utilising and expanding community-based outreach strategies offering multi-disease screening and care with strong referral linkages; careful task delegation and role realignment among care teams supported with proper training and incentive mechanisms; and collaborative partnership between public and private sector actors to expand the resource-base and promoting cross-programme initiatives.

Patient-provider perspectives on self-management support and patient empowerment in chronic care: A mixed-methods study in a rural sub-Saharan setting.

AIM: To explore how provision of self-management support to chronically-ill patients in resource-limited settings contributes to patient empowerment in chronic care. DESIGN: Concurrent descriptive mixed methods research. METHODS: A survey of 140 patients with chronic conditions administered at four time-points in 12 months. We conducted 14 interviews and four focus-group discussions with patients (N = 31); 13 healthcare provider interviews; and observations of four patient-support group meetings. Data were collected between April 2016 - May 2017 in rural Malawi. Qualitative data were analysed using a thematic approach and descriptive statistical analysis performed on survey data. RESULTS: Healthcare professionals facilitated patient empowerment through health education, although literacy levels and environmental factors affected self-management guidance. Information exchanged during patient-provider interactions varied and discussions centred around medical aspects and health promoting behaviour. Less than 40% of survey patients prepared questions prior to clinic consultations. Health education was often unstructured and delegated to non-physician providers, mostly untrained in chronic care. Patients accessed psychosocial support from volunteer-led community home-based care programmes. HIV support-groups regularly interacted with peers and practical skills exchanged in a supportive environment, reinforcing patient's self-mangement competence and proactiveness in health care. CONCLUSION: For optimal self-management, reforms at inter-personal and organizational level are needed including; mutual patient-provider collaboration, diversifying access to self-management support resources and restructuring patient support-groups to cater to diverse chronic conditions. IMPACT: Our study provides insights and framing of self-management support and empowerment for patients in long-term care in sub-Saharan Africa. Lessons drawn could feed into designing and delivering responsive chronic care interventions.

Moving to a strong(er) community health system: analysing the role of community health volunteers in the new national community health strategy in Malawi.

Since the Alma Ata Declaration in 1978, community health volunteers (CHVs) have been at the forefront, providing health services, especially to underserved communities, in low-income countries. However, consolidation of CHVs position within formal health systems has proved to be complex and continues to challenge countries, as they devise strategies to strengthen primary healthcare. Malawi's community health strategy, launched in 2017, is a novel attempt to harmonise the multiple health service structures at the community level and strengthen service delivery through a team-based approach. The core community health team (CHT) consists of health surveillance assistants (HSAs), clinicians, environmental health officers and CHVs. This paper reviews Malawi's strategy, with particular focus on the interface between HSAs, volunteers in community-based programmes and the community health team. Our analysis identified key challenges that may impede the strategy's implementation: (1) inadequate training, imbalance of skill sets within CHTs and unclear job descriptions for CHVs; (2) proposed community-level interventions require expansion of pre-existing roles for most CHT members; and (3) district authorities may face challenges meeting financial obligations and filling community-level positions. For effective implementation, attention and further deliberation is needed on the appropriate forms of CHV support, CHT composition with possibilities of co-opting trained CHVs from existing volunteer programmes into CHTs, review of CHT competencies and workload, strengthening coordination and communication across all community actors, and financing mechanisms. Policy support through the development of an addendum to the strategy, outlining opportunities for task-shifting between CHT members, CHVs' expected duties and interactions with paid CHT personnel is recommended.

Patients experiences of self-management and strategies for dealing with chronic conditions in rural Malawi.

BACKGROUND: The high burden of chronic communicable diseases such as HIV/AIDS, and an escalating rise of non-communicable diseases (NCDs) in Malawi and other sub-Saharan African countries, calls for a shift in how health care services are designed and delivered. Patient-centred care and patient self-management are critical elements in chronic care, and are advocated as universal strategies. In sub-Saharan Africa, there is need for more evidence around the practice of patient self-management, and how to best support patients with chronic conditions in the African context. Our study explored self-management practices of patients with different chronic conditions, and their strategies to overcome care challenges in a resource-constrained setting in Malawi. METHODS: This is primarily a qualitative study, involving patients with different chronic conditions from one rural district in Malawi. Data are drawn from semi-structured questions of a survey with 129 patients (from the third of four-part data collection series), 14 in-depth interviews, and four focus-group discussions with patients (n = 31 respondents). A framework approach was used for qualitative analysis, and descriptive statistical analysis was performed on survey data. RESULTS: Patients demonstrated ability to self-manage their conditions, though this varied between conditions, and was influenced by individual and external factors. Factors included: 1) ability to acquire appropriate disease knowledge; 2) poverty level; 3) the presence of support from family caregivers and community-based support initiatives; 4) the nature of one's social relations; and 5) the ability to deal with stressors and stigma. NCD and HIV comorbid patients were more disadvantaged in their access to care, as they experienced frequent drug stock-outs and incurred additional costs when referred. These barriers contributed to delayed care, poorer treatment adherence, and likelihood of poorer treatment outcomes. Patients proved resourceful and made adjustments in the face of (multiple) care challenges. CONCLUSION: Our findings complement other research on self-management experiences in chronically ill patients with its analysis on factors and barriers that influence patient self-management capacity in a resource-constrained setting. We recommend expanding current peer-patient and support group initiatives to patients with NCDs, and further investments in the decentralisation of integrated health services to primary care level in Malawi.

Health providers' perceptions of clinical trials: lessons from Ghana, Kenya and Burkina Faso.

BACKGROUND: Clinical trials conducted in Africa often require substantial investments to support trial centres and public health facilities. Trial resources could potentially generate benefits for routine health service delivery but may have unintended consequences. Strengthening ethical practice requires understanding the potential effects of trial inputs on the perceptions and practices of routine health care providers. This study explores the influence of malaria vaccine trials on health service delivery in Ghana, Kenya and Burkina Faso. METHODS: We conducted: audits of trial inputs in 10 trial facilities and among 144 health workers; individual interviews with frontline providers (n=99) and health managers (n=14); and group discussions with fieldworkers (n=9 discussions). Descriptive summaries were generated from audit data. Qualitative data were analysed using a framework approach. RESULTS: Facilities involved in trials benefited from infrastructure and equipment upgrades, support with essential drugs, access to trial vehicles, and placement of additional qualified trial staff. Qualified trial staff in facilities were often seen as role models by their colleagues; assisting with supportive supervision and reducing facility workload. Some facility staff in place before the trial also received formal training and salary top-ups from the trials. However, differential access to support caused dissatisfaction, and some interviewees expressed concerns about what would happen at the end of the trial once financial and supervisory support was removed. CONCLUSION: Clinical trials function as short-term complex health service delivery interventions in the facilities in which they are based. They have the potential to both benefit facilities, staff and communities through providing the supportive environment required for improvements in routine care, but they can also generate dissatisfaction, relationship challenges and demoralisation among staff. Minimising trial related harm and maximising benefits requires careful planning and engagement of key actors at the outset of trials, throughout the trial and on its' completion.

Complex realities: community engagement for a paediatric randomized controlled malaria vaccine trial in Kilifi, Kenya.

BACKGROUND: Community engagement (CE) is increasingly promoted for biomedical research conducted in resource poor settings for both intrinsic and instrumental purposes. Given the potential importance of CE, but also complexities and possibility of unexpected negative outcomes, there is need for more documentation of CE processes in practice. We share experiences of formal CE for a paediatric randomized controlled malaria vaccine trial conducted in three sites within Kilifi County, Kenya. METHODS: Social scientists independent of the trial held in-depth individual interviews with trial researchers (n=5), community leaders (n=8) and parents (15 with enrolled children and 4 without); and group discussions with fieldworkers (n=6) and facility staff (n=2). We conducted a survey of participating households (n=200) and observed over 150 CE activities. RESULTS: The overall CE plan was similar across the three study sites, although less community-based information in site C. Majority perceived CE activities to clear pre-existing concerns and misconceptions; increase visibility, awareness of and trust in trial staff. Challenges included: some community leaders attempting to exert pressure on people to enrol; local wording in information sheets and consent forms feeding into serious anxieties about the trial; and concerns about reduced CE over time. Negative effects of these challenges were mitigated through changes to on-going CE activities, and final information sharing and consent being conducted individually by trained clinical staff. One year after enrolment, 31% (n = 62) of participants' parents reported malaria prevention as the main aim of the activities their children were involved in, and 93% wanted their children to remain involved. CONCLUSION: The trial teams' goals for CE were relatively clear from the outset. Other actors' hopes and expectations (like higher allowances and future employment) were not openly discussed, but emerged over the course of engagements. Encouraging open discussion of all actors' intentions and goals from the outset takes time, risks raising expectations that cannot be met, and is complex. However, doing so in future similar trials may allow successes here to be built upon, and some challenges minimized or avoided. TRIAL REGISTRATION: ClinicalTrials.gov NCT00866619 (registration 19-Mar-2009).

Working with Community Health Workers as 'volunteers' in a vaccine trial: practical and ethical experiences and implications.

Community engagement is increasingly emphasized in biomedical research, as a right in itself, and to strengthen ethical practice. We draw on interviews and observations to consider the practical and ethical implications of involving Community Health Workers (CHWs) as part of a community engagement strategy for a vaccine trial on the Kenyan Coast. CHWs were initially engaged as an important network to be informed about the trial. However over time, and in response to community advice, they became involved in trial information sharing and identifying potential participants; thereby taking on roles that overlapped with those of employed fieldworkers (FWs). While CHWs involvement was generally perceived as positive and appreciated, there were challenges in their relations with FWs and other community members, partly related to levels and forms of remuneration. Specifically, payment of CHWs was not as high as for FWs and was based on 'performance'. This extrinsic motivation had the potential to crowd out CHWs intrinsic motivation to perform their pre-existing community roles. CHWs remuneration potentially also contributed to CHWs distorting trial information to encourage community members to participate; and to researchers encouraging CHWs to utilize their social connections and status to increase the numbers of people who attended information giving sessions. Individual consent processes were protected in this trial through final information sharing and consent being conducted by trained clinical staff who were not embedded in study communities. However, our experiences suggest that roles and remuneration of all front line staff and volunteers involved in trials need careful consideration from the outset, and monitoring and discussion over time.

Community accountability at peripheral health facilities: a review of the empirical literature and development of a conceptual framework.

Public accountability has re-emerged as a top priority for health systems all over the world, and particularly in developing countries where governments have often failed to provide adequate public sector services for their citizens. One approach to strengthening public accountability is through direct involvement of clients, users or the general public in health delivery, here termed 'community accountability'. The potential benefits of community accountability, both as an end in itself and as a means of improving health services, have led to significant resources being invested by governments and non-governmental organizations. Data are now needed on the implementation and impact of these initiatives on the ground. A search of PubMed using a systematic approach, supplemented by a hand search of key websites, identified 21 papers from low- or middle-income countries describing at least one measure to enhance community accountability that was linked with peripheral facilities. Mechanisms covered included committees and groups (n = 19), public report cards (n = 1) and patients' rights charters (n = 1). In this paper we summarize the data presented in these papers, including impact, and factors influencing impact, and conclude by commenting on the methods used, and the issues they raise. We highlight that the international interest in community accountability mechanisms linked to peripheral facilities has not been matched by empirical data, and present a conceptual framework and a set of ideas that might contribute to future studies.