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Primary Health Care: On Measuring Participation
Abstract
This paper considers the problems of finding measurements for the two major principles of primary health care (PHC), equity and participation. Although both are of equal importance, the authors concentrate on the assessment of participation. A methodology is put forward to define indicators for participation in health care programmes as how wide participation is on a continuum developed for each of the five factors which influence community participation. These factors are: needs assessment leadership, organisation, resource mobilisation and management. By plotting a mark on a continuum which is defined as wide and narrow at the extremes and is connected with all other marks in a spoke arrangement, it is possible to describe a baseline for participation in any specific health programme. This baseline can be used to compare the same programme at a different point in time, to compare observations by different evaluators, and/or to compare perceptions of different participants in the same programmes. A case study provides an example of how the indicators might be used. These indicators focus on the breadth of participation and not its potential social impact, an area which is recognised to be critical for future research.
... The focus group interview guide was based on Rifkin's spidergram methodological tool to explore the extent to which the communities were involved in implementing their respective district's community-based health intervention. 20,28 The methodological tool considers five key indicators in relation to PPE: Needs assessment, Leadership, Organisation, Resource Mobilisation and Management. ...
... The first indicator, 'needs assessment', has been described as the process of identifying the health problem and relating this to the health needs of the community. 28,29 Leadership examines the authority of the programme and how it acts in the community's interests, particularly in terms of representation of poor and marginalised groups. The third indicator assesses engagement from the point of 'organisation'. ...
... Resource mobilisation focuses on a community's commitment to the health programme through their contribution of resources (in various forms) and involvement in the allocation of the resources to support the health programme. 28 Finally, the management indicator measures the management and decisionmaking structures of the health programme. ...
Background:
Community-based health interventions have been implemented as a key strategy for achieving improved health outcomes in Ghana. Effectiveness, however, largely depends on the successful implementation of patient-public engagement (PPE). Although several PPE studies have been conducted in Ghana, little research has been done to understand the specific role of PPE in the context of implementing community-based health programmes. This paper, therefore, examines the extent of PPE implementation in three selected community-based health programmes (Community-based Health Planning and Service [CHPS], Community-based Maternal and Child Health and Buruli Ulcer) to understand their specific effects on health outcomes.
Methods:
Three focus groups, involving 26 participants, were held in three districts of the Ashanti region of Ghana. Participants were mainly health service users involving community health committee members/volunteers, residents and health professionals. They were invited to participate based on their roles in the design and implementation of the programmes. Participants focused on each of Rifkin's spider-gram components. Data were transcribed and analysed descriptively using NVIVO 12 Plus.
Results:
PPE implementation was found to be extensive across the three programmes in specific areas such as organisation and resource mobilisation. PPE was more restricted in relation to community needs assessment, leadership and management, particularly for the CHPS and Buruli Ulcer programmes.
Conclusion:
Findings suggest that benefits from community-based health interventions are likely to be greater if PPE can be widely implemented across all dimensions of the spider-gram framework.
... Top down is when community participation is considered a means to the end of attaining health improvement objectives and where participation is primarily in the form of community members doing what health professionals tell them. Bottom up is when community participation is seen as an end in itself and where community members assume leadership roles supported by health professionals [31][32][33][34]. ...
... We position community participation within an empowerment approach as defined by Rifkin in 1988: 'a social process whereby specific groups with shared needs living in a defined geographic area actively pursue identification of their needs, take decisions and establish mechanisms to meet those needs." [32,34]. ...
... Our empowerment evaluation was guided by a framework proposed by Rifkin et al. in 1988 [32] and adapted by Draper et al. in 2010 [33]. This framework is a continuum that goes from mobilisation (community does what the professional advises), to collaboration (community contributes with time, materials and/or money), to empowerment (community plans and manages health activities with professional support) [32]. To evaluate participation, Rifkin et al. proposed five indicators: 1) needs assessment evaluation (implication in community needs identification); 2) sense of leadership (scope of community interests representation); 3) programme organisation involvement (involvement of existing community structures); 4) programme management level (community autonomy to implement activities); and 5) resource mobilization contribution (community resources invest in the project). ...
Gambiense Human African Trypanosomiasis (g-HAT) is a neglected tropical disease caused by trypanosomes transmitted by tsetse flies. In 2017, a pilot community-based project was launched in three villages in DRC with the overall goal of empowering community members to control tsetse using Tiny Targets which attract and kill tsetse. In this paper, we assess the community participation process in these three pilot villages over >4 years and evaluate to what extent this resulted in the empowerment of communities. We conducted a qualitative study using a participatory research approach. Together with community members of the three pilot villages from the endemic Kwilu province, we evaluated changes in project participation, community empowerment and perception of future participation at three different time points (September 2017, September 2018 and November 2021) over a 4-year period using participatory workshops and focus group discussions (FGD). We used a thematic content approach to analyse both workshop notes and FGD transcripts. The community identified five indicators to evaluate participation: (1) Leadership & Ownership, (2) Organisation & Planning, (3) Willingness, (4) Autonomy and (5) Community Involvement. The participation experience described by community members was characterised by a rapid growth of empowerment in the first year and sustained high levels thereafter. Community participants were willing to engage in potential future projects and continue to be supported by their Tiny Target project partner. However, they identified an imbalance in the power relationship within the committee and with the Tiny Target partners that limit the extent of empowerment attained. The intervention had broader benefits of community empowerment but this was limited by perceptions of being part of wider "top down" programme and by stakeholders attitude toward community participation. If empowerment is to be an important objective of projects and programmes then the needs identified by communities must be recognised and attitude of sharing power encouraged.
... The design of the Ghanaian CHPS programme requires the participation of beneficiary communities in the planning and implementation of key components of the programme such as needs assessment, leadership, organization, resource mobilization and management, in line with the five dimensions of the Rifkin's model of participation in health programmes [7,19]. Wright et al. [20], suggest that the identification of the needs of the community with community members is very critical in the planning and implementation of local health services. ...
... Wright et al. [20], suggest that the identification of the needs of the community with community members is very critical in the planning and implementation of local health services. Rifkin et al. [19] states that in measuring community participation in the planning and implementation of health care activities, it is imperative to examine who the existing leadership represents, how the leadership acts on the interest of various community groups, especially the poor, and how responsive the leaders are to change. The organization dimension refers to the extent to which new health programmes are integrated within pre-existing community structures or networks [7]. ...
... The organization dimension refers to the extent to which new health programmes are integrated within pre-existing community structures or networks [7]. Resource mobilization refers to the capacity of communities to galvanize and contribute the relevant resources towards the successful implementation of community-based health interventions [19]. Community participation in resource mobilization is critical to the ownership and sustainability of any project as it serves as a condition for breaking the shackles of dependency and passivity [21]. ...
Background
Community participation is essential for the successful implementation of primary health care programmes across the globe, including sub-Saharan Africa. The Community-based Health Planning and Services (CHPS) programme is one of the primary health care interventions in Ghana which by design and implementation heavily relies on community participation. However, there is little evidence to establish the factors enabling or inhibiting community participation in the Ghanaian CHPS programme. This study, therefore, explored the enabling and inhibiting factors influencing community participation in the design and implementation of the CHPS programme in the Builsa North Municipality in the Upper East Region of Ghana.
Methods
A qualitative approach, using a cross-sectional design, was employed to allow for a detailed in-depth exploration of the enabling and inhibiting factors influencing community participation in the design and implementation of the CHPS programme. The data were collected in January 2020, through key informant interviews with a stratified purposive sample of 106 respondents, selected from the 15 functional CHPS facilities in the Municipality. The data were audio-recorded, transcribed and manually analysed using thematic analysis.
Results
The results showed that, public education on the CHPS concept, capacity of the community to contribute material resources towards the construction of CHPS facilities, strong and effective community leadership provided by community chiefs and assembly persons, the spirit of volunteerism and trust in the benefits of the CHPS programme were the enablers of community participation in the programme. However, volunteer attrition, competing economic activities, lack of sense of ownership by distant beneficiaries, external contracting of the construction of CHPS facilities and illiteracy constituted the inhibiting factors of community participation in the programme.
Conclusion
Extensive public education, volunteer incentivization and motivation, and the empowerment of communities to construct their own CHPS compounds are issues that require immediate policy attention to enhance effective community participation in the programme.
... Additional studies were identified through citation searches of seven health system assessment tools [19][20][21][22][23][24][25] and used the 'cited by' function in Google Scholar to identify subsequent studies that had cited the reviews. We conducted forward and backward screening of all articles in the full-text screening phase and relevant publications (e.g., guidelines, tools, reviews, opinion pieces) to find any additional studies fitting the inclusion criteria. ...
... However, if such work was being used or adapted since then, it featured in our review. For example, Rifkin's spidergram was not originally included as it was published prior to 2000 [20], but we included documents that cited it via Google Scholar [27,31,32,43,44,65]. By searching only English and French documents potentially excluded a wealth of evidence on this agenda globally. ...
Key messages
• The recent COVID-19 pandemic highlighted the critical importance of social participation in health system governance. Measuring social participation in health system governance would provide a measure of people’s input into health-related policies. Increasing the community’s participation could encourage improvements in the effectiveness and equity of health systems to achieve Universal Health Coverage by focusing on the needs of the community.
• Currently we have limited measures of social participation that could be used for decision making in health systems, limiting options that ministries of health have to assess social participation in their contexts and inform priorities for social participation in health systems.
• In this review, we describe 172 measures identified in the literature that have been used to collect empirical evidence on concepts related to social participation. In addition, we have categorized these measures according to a handbook on social participation published by the World Health Organization.
• This rapid review found that the focus of measures is largely on the existence of participation—be it by the general population or specific vulnerable groups—rather than on the quality of their participation.
• This inventory initiates the process to develop a monitoring framework for social participation that could be relevant to national or sub-national needs.
... Participatory health research is regarded as an effective strategy to improve end-user or community conditions (Goodman et al. 2017). Numerous instruments to assess participation in health research exist -for example, Arnstein (1969) uses an 8-rung ladder of citizen participation to determine "the extent of citizens' power in determining the end product", while Rifkin, Muller, and Bichmann (1988) as well as Draper, Hewitt, and Rifkin (2010) use a 5-point scale to rate participation and represent the data on a spider's web (spidergram). These instruments are used to assess power-sharing or the inclusion of the community or stakeholders in the research process. ...
... In addition, each stakeholder rates their participation and that of the other stakeholders using a 5-point visual analogue rating scale (see Figure 1). Similar to the continuum used by Rifkin et al. (1988), a rating of one describes narrow participation, while a rating of five describes broad participation. ...
Student engagement is a dynamic and multifaceted concept encompassing physical, emotional, and cognitive components. Various instruments to assess student engagement exist; however, these are not intended to assess how students engage with one another and with community stakeholders in participatory health projects. Although instruments exist to assess participation and power-sharing in participatory health research projects, none of the available tools are suitable for assessing student engagement in such projects. Accordingly, this study set out to develop an assessment instrument for student engagement in design thinking projects for health innovation. An adapted form of the survey development guide for medical education research was applied. The development process included triangulation of data, which included collating student input from an initial literature informed instrument, an analysis of written reflective reports and a focus group discussion with students enrolled in a master’s level course called Health Innovation & Design (HID), and design thinking practitioner validation. A final assessment instrument for student engagement in design thinking projects is presented. Note that our instrument incorporates the design thinking phases according to the Innovation Design Engineering Organization (IDEO) design thinking approach, an educational definition of student engagement, and recommendations by students, course lecturers and facilitators of the HID course. The instrument can assess engagement in academic and non-academic settings when design thinking is applied for health innovation.
... Prior to FGDs, a short survey was filled out by each participant (Additional file 3), containing basic sociodemographic information and questions related to the perceived level of CP in five different project areas: needs assessment, leadership, organization, resource mobilization and management (for a detailed definition of indicators see Additional file 4). The level of CP was then rated on a continuum from 1 (narrow CP) to 5 (wide CP) for each area on spidergrams in analogy to the methodology described by Rifkin et al.) [20,24]. Spidergrams allow to compare CP perception of different participants in the same program [20], which makes it interesting for the cross-country setting. ...
Background
Research on the needs of people with disability is scarce, which promotes inadequate programs. Community Based Inclusive Development interventions aim to promote rights but demand a high level of community participation. This study aimed to identify prioritized needs as well as lessons learned for successful project implementation in different Latin American communities.
Methods
This study was based on a Community Based Inclusive Development project conducted from 2018 to 2021 led by a Columbian team in Columbia, Brazil and Bolivia. Within a sequential mixed methods design, we first retrospectively analyzed the project baseline data and then conducted Focus Group Discussions, together with ratings of community participation levels. Quantitative descriptive and between group analysis of the baseline survey were used to identify and compare sociodemographic characteristics and prioritized needs of participating communities. We conducted qualitative thematic analysis on Focus Group Discussions, using deductive main categories for triangulation: 1) prioritized needs and 2) lessons learned, with subcategories project impact, facilitators, barriers and community participation. Community participation was assessed via spidergrams. Key findings were compared with triangulation protocols.
Results
A total of 348 people with disability from 6 urban settings participated in the baseline survey, with a mean age of 37.6 years (SD 23.8). Out of these, 18 participated within the four Focus Group Discussions. Less than half of the survey participants were able to read and calculate (42.0%) and reported knowledge on health care routes (46.0%). Unemployment (87.9%) and inadequate housing (57.8%) were other prioritized needs across countries. Focus Group Discussions revealed needs within health, education, livelihood, social and empowerment domains.
Participants highlighted positive project impact in work inclusion, self-esteem and ability for self-advocacy. Facilitators included individual leadership, community networks and previous reputation of participating organizations. Barriers against successful project implementation were inadequate contextualization, lack of resources and on-site support, mostly due to the COVID-19 pandemic. The overall level of community participation was high (mean score 4.0/5) with lower levels in Brazil (3.8/5) and Bolivia (3.2/5).
Conclusion
People with disability still face significant needs. Community Based Inclusive Development can initiate positive changes, but adequate contextualization and on-site support should be assured.
... Adapun manfaat yang dapat diidentifikasi yaitu: 7. Partisipasi masyarakat adalah proses sosial dimana kelompok-kelompok khusus yang mempunyai kebutuhan yang sama dan tinggal di kawasan yang telah ditentukan, secara aktif mengidentifikasi kebutuhan-kebutuhan mereka, membuat keputusan dan mewujudkan mekanisme untuk memenuhi kebutuhan tersebut. Rifkin et al. 1988 Berdasarkan berbagai definisi partisipasi seperti terlihat pada Tabel 15.1 di atas, dapat dirumuskan bahwa untuk melibatkan masyarakat dalam program pembangunan memerlukan beberapa syarat dan ketentuan. Rumusan tersebut yaitu (1) masyarakat perlu diberi ruang secara aktif untuk berpartisipasi dalam proses membuat keputusan; (2) memahami kebutuhan masyarakat merupakan dasar terhadap perencanaan program pembangunan; (3) masyarakat harus ditempatkan sebagai aktor dalam pembangunan; (4) kekuasaan yang lebih besar perlu diberi kepada masyarakat lokal dalam setiap perencanaan pembangunan; dan (5) masyarakat perlu diberdayakan dari segi pendidikan dan latihan secara berkesinambungan. ...
... Future approaches may benefit from the use of frameworks to guide the community participation process. Rifkin et al. (1988)'s 'spidergram' is one example. The 'spidergram' tracks five factors that influence community participation (needs assessment, leadership, organisation, management, and resource mobilisation), which can be used in conjunction with specific co-design tools, as described by Blomkamp (2018). ...
Objectives:
The National Suicide Prevention Trial was announced by the Australian Government in 2016 and aimed to prevent suicidal behaviour in 12 trial sites (representing a population of ~8 million). This study investigated the early population-level impact of the National Suicide Prevention Trial activity on rates of suicide and hospital admissions for self-harm in comparison to control areas.
Methods:
Relative and absolute differences in monthly rates of suicide and hospital admissions for self-harm were compared in the period after the National Suicide Prevention Trial implementation (July 2017-November 2020) to the period prior to implementation (January 2010-June 2017) in (1) 'National Suicide Prevention Trial areas' and (2) 'Control areas', using a difference-in-difference method in a series of negative binomial models. Analyses also investigated whether associations for suicide and self-harm rates differed by key socio-demographic factors, namely sex, age group, area socio-economic status and urban-rural residence.
Results:
There were no substantial differences between 'National Suicide Prevention Trial areas' and 'Control areas' in rates of suicide (2% relative decrease, relative risk = 0.98, 95% confidence interval = [0.91, 1.06]) or self-harm (1% relative decrease, relative risk = 0.99, 95% confidence interval = [0.96, 1.02]), adjusting for sex, age group and socio-economic status. Stronger relative decreases in self-harm only were evident for those aged 50-64 years, high socio-economic status areas, metropolitan and remote geographic areas.
Conclusion:
There was limited evidence that the National Suicide Prevention Trial resulted in reductions in suicide or hospital admissions for self-harm during the first 4 years of implementation. Continued monitoring of trends with timely data is imperative over the next 2-3 years to ascertain whether there are any subsequent impacts of National Suicide Prevention Trial activities.
... La participation communautaire, entendue comme « un processus social où des groupes définis qui partagent les mêmes besoins et qui vivent dans une région géographique circonscrite, poursuivent activement l'iden tification de leurs besoins, prennent des décisions et établissent des méca nismes pour répondre à leurs besoins » (Rifkin, Muller et Bichmann, 1988, cités par Fournier et Potvin, 1995, illustre bien cette conception de l'expérimentation. En mettant l'accent sur la dimension collective de la participation, la conception du public qui soustend la recherche inter ventionnelle permet de répondre aux critiques émises à propos de l'ins trumentalisation des patients inclus de manière symbolique et non décisionnelle dans les processus participatifs (Morrison et Dearden, 2013 ;Ocloo et Matthews, 2016). ...
This study used augmented reality (AR) to test the effects of perceived social presence, perceived media richness, media empathy and social capital on intentions to participate in prosocial, community‐oriented behaviors in the context of the COVID‐19 pandemic, which appeared to be rife with fear. Specifically, a structural model was employed to assess the hypothesized relationships based on questionnaire data from 476 respondents, who were divided into high and low fear groups. The findings revealed that perceived media richness and social presence both had a significant influence on media empathy, which in turn affected users' perceptions of social capital. Social capital predicted users' community participation intentions, which included intentions to donate. The paths from perceived social presence and perceived media richness to social capital were not significant, and media empathy did not directly influence prosocial, community participation intentions. There were no significant differences between the high and low COVID‐19 fear groups. Overall, this study confirmed the importance of leveraging media richness and social presence to create media content designed to prompt users to identify with those who are negatively affected by the cause, so that media empathy will be boosted. Media empathy should be increased in a manner that leads users to feel connected to a larger community, so that perceptions of social capital will be boosted and will lead to prosocial, community participation activities and donations to the cause.
Community-based oral rehydration programmes to reduce diarrhoea-related mortality have been initiated in many developing countries
in recent years. However, to date few evaluation studies have been carried out on these programmes and there is poor standardization
in the indicators used. This paper discusses mainly the problems surrounding the intermediate process indicators: availability
of ingredients; people's perceptions about diarrhoea and its treatment; and knowledge, safety and usage of oral rehydration
solutions (ORS), with usage being discussed in some detail. Impact indicators based on mortality are discussed more briefly.
Although most evaluations have studied the mortality impact of these programmes, it is suggested that programme evaluations
should initially concentrate on process indicators to demonstrate how well the programme has been implemented. Only when implementation
is successful and usage of ORS per diarrhoea episode is high can there be an appreciable impact on mortality.
What is the impact of technology on improving the life situations of people, especially the poor? How is this impact analyzed in terms of health improvements? These questions are paramount in the minds of health planners as they pursue national policies of primary health care, a policy popularized by the World Health Organization (WHO) and the United Nations Children's Fund (UNICEF) and accepted by over 150 governments at Alma Ata in 1978. The purpose of this paper is to explore these questions in depth. It begins by giving the background to the debate, then examines the origins of two concepts which have dominated the field, those of ‘primary health care’ and ‘selective primary health care.’ On this basis it suggests areas of differences in the two concepts and discusses the policy and practical implications of confusing the two approaches. The paper suggests that the differences are firstly who controls the outcome of technological interventions and the perceived time frame in which plans can be carried out.
After describing types of research designs for the study of community participation in health care programmes, this paper examines one methodology, the quantitative methodology, the quantitative methodology, in detail. It presents some of the major attractions and limitations of this approach. The attractions include the need for evaluation of success and failure and of cost effectiveness of programmes. The limitations include the inability of the approach to deal with definitions and interventions that cannot be quantitified and the difficulty of identifying casual relationship between interventions and outcomes. These characteristics are illustrated by a case by a medical school in Asia. Research design, research developments and research outcomes are described and analysed. The paper concludes that an alternative analysis which examines the linkages between participation and health improvements would be more useful as it would allow the political, social and economic dimensions of community participation to be examined.
Traces the roots of alternative interpretations of development to fundamental differences in perceptions of the development process. Approaches to participation are illustrated through sketches of concrete initiative, ranging from pressure group activity such as Bhoomi Sena, to health improvement in Ecuador, and including official attempts at the promotion of participation in Nepal and Ethiopia, While recognizing that there is no universal model of participation, some building blocks for a more complete analysis are offered.-Authors
Proposes a new analytical framework for the study of child survival in developing countries, incorporating both social and biological variables and employing methods of social and medical sciences. The framework includes the use of a single-valued measure of morbidity and mortality. Five intermediate variables are identified through which all socioeconomic factors affect child survival: maternal factors, environmental, nutritional, injury, and personal illness control measures. The proposed health status index combines population weight-for-age with the mortality level of the respective cohort.-A.L.Creese (CDS)