ExtraCECI: A cluster randomised controlled trial of community-based person-centred enhanced care for people with HIV/AIDS in Ghana
Lead Research Organisation:
Edinburgh Napier University
Department Name: School of Health and Social Care
Abstract
This study focuses on people living with HIV/AIDS (PLWHA) who continue to experience distressing symptoms and concerns, so that while taking their HIV medications, they still have physical pain and psychological, social and spiritual concerns that affect their quality of life. These concerns require holistic assessment and management to help improve PLWHA's quality of life. In order to do this, a team of researchers, including healthcare professionals (HCP), and PLWHA developed and tested a new approach to care assessment and delivery called 'community-based enhanced care intervention' (CECI) in a small study (feasibility trial) in Ghana. In that study, we worked with PLWHA and HCP who work in two different HIV community clinics for which one of these clinics were randomly selected to deliver the CECI intervention and the other clinic delivered standard HIV care. The HCP in the clinic selected to deliver the CECI were trained to deliver 3 sessions of the CECI through holistic assessment of PLWHA's physical, psychological, social and spiritual wellbeing, collaborative care planning with PLWHA contributing to their care decisions and delivery of care based on agreed care plan. We then evaluated the receipt of CECI in a feasibility study, which is done to check whether PLWHA would want to join the study (recruitment) and stay in the study (retention). Some sample of PLWHA and HCP were interviewed face to face after receiving and delivering CECI and found that both PLWHA and HCP reported that the study felt safe, comfortable, convenient and useful in discussing their care needs as well as addressing them. We were able to recruit enough PLWHA, and able to keep them in the study until the end (retention), and there was good attendance at the CECI care appointment sessions. There were no issues of PLWHA becoming distressed or more unwell because of taking part in the study. The result from this small study indicated that it is possible to recruit and retain participants in a bigger study of CECI. Also, PLWHA seem to like this new approach to care delivery because it has the potential to improve their quality of life. We therefore aim to conduct a bigger study of CECI (ExtraCECI) to determine how effective and cost saving this will be in improving the quality of life of PLWHA. The ExtraCECI study builds on our earlier study and asks whether the CECI care approach will improve quality of life and person-centred outcomes for PLWHA compared with those who don't receive it. We will recruit 650 PLWHA from 26 HIV clinics with about 20-25 PLWHA recruited from each clinic (which should be enough numbers to be sure about our results). Information (data) will be collected about PLWHA's background, physical, psychological, social and spiritual wellbeing in their respective clinics then the clinics will be randomly allocated either to standard HIV care or ExtraCECI. Random allocation (a bit like tossing a coin heads or tails) means an equal chance for all the participating clinics to receive the ExtraCECI intervention or not. HCP from the clinics that will be allocated to receive ExtraCECI will be trained on how to deliver ExtraCECI and then they can go on to deliver it to PLWHA in those clinics. Information will be collected at 3,6,9 and 12 months after randomisation and when PLWHA start receiving ExtraCECI. PLWHA who are allocated to the ExtraCECI intervention will be compared with those who were not, to see if the ExtraCECI improves their quality of life across their physical, psychological, social and spiritual wellbeing. We will also do interviews with a small group of PLWHA and HCP to find out how they found the study, and whether it worked better for some than others and in what circumstances. This will help make decisions about the best ways for ExtraCECI to be included in routine HIV care if it is shown to be successful. We will work with Ghana AIDS Commission and PLWHA to ensure that
person-centred care becomes part of routine HIV care
person-centred care becomes part of routine HIV care
Technical Summary
RESEARCH QUESTION: Is the Extra community-based enhanced care intervention (ExtraCECI) effective and cost-effective in improving quality of life and person-centred outcomes for people living with HIV/AIDS (PLWHA)? METHODS: A parallel cluster randomised controlled trial of ExtraCECI versus standard HIV care will be conducted with 1:1 allocation and an economic and process evaluation following the Phase 3 of MRC guidelines for developing and evaluating complex interventions. 26 Community HIV clinics within the Greater Accra Region of Ghana will be recruited and randomised with n=650 PLWHA recruited after eligibility checks and informed consent obtained. OUTCOME & PROCESS MEASURES: MOS-HIV, POSITIVE OUTCOMES HIV PROM, CARE Measure and PPE-15. INTERVENTION: ExtraCECI consist of a holistic assessment of symptoms and concerns in the domains of physical, psychological, social, & spiritual wellbeing with a care plan to facilitate collaborative care planning and delivered by trained healthcare professionals (HCP), mentorship for HCP, and training PLWHA to engage and contribute to care decisions. COMPARATOR: Standard HIV care consist of serving a repeat prescription, adherence support, CD4 count/viral load test and any specific problem(s) as described by appointment note. DATA COLLECTION & ANALYSIS: Data will be collected at 3, 6, 9, & 12 months post-randomisation. Analysis will compare MOS-HIV score between groups using a covariance pattern mixed linear model, incorporating all post-randomisation time points & adjusting for baseline scores among others. The study will run for 48months. ANTICIPATED IMPACT AND DISSEMINATION: As ExtraCECI is new, the impact of demonstrating effectiveness in improving quality of life and person-centred outcomes for PLWHA will be significant for HIV services. The fully costed ExtraCECI manual will provide details on how HIV care can be person-centred and delivered sustainably to improve outcomes for PLWHA, with all other outputs free to download.
Organisations
| Description | ExtraCECI Project Launch |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Introduction The Extra community-based enhanced care intervention (ExtraCECI) project was successfully launched at the Cedi Auditorium, located within the University of Ghana in Accra, Ghana on Monday, 20th January 2025. The ExtraCECI project aims to evaluate the effectiveness and cost-effectiveness of ExtraCECI to improve person-centred outcomes and quality of life for people living with HIV/AIDS compared to standard HIV care. The project launch created the opportunity to engage stakeholders and the public both national and internal to officially share the goals as well as create awareness of the project and its focus on person-centred care. The program was well attended by various stakeholders, including members of the University of Ghana's community, HIV/AIDS advocacy groups, collaborators and representatives from the Ghana Health Service, Ghana AIDS Commission, Ghana Registered Nurses and Midwives Association, Ghana College of Nurses and Midwives, faculty, students, the media and the general public. There were representatives of the patient and public involvement (PPI) network, the Models of Hope, graduate students and community leaders in attendance. Throughout the event, participants were presented with the overall objectives of the ExtraCECI Project and a call to partner with stakeholders in achieving project success. Emphasis was placed on the importance of person-centred HIV care in Ghana, and the pivotal role this initiative will play in improving the quality of life and support for individuals living with HIV. The event served as a platform for knowledge exchange, networking, and the fostering of partnerships aimed at driving forward the project's mission and goals. Event Highlights A team led by Dr. Vivian Senoo Dogbey planned and executed the project launch activities by ensuring the venue was secured early as well as worked on the publicity and invitation of guest. The launch commenced with the registration of guest and participants from 8:30 am to 9:30 am. Most of the guest were seated by 9:30 am with over 250 guests in attendance. Ms. Pascaline Kuunzungla Songsore a Senior Assistant Registrar at the Documentation and Information Unit of the Public Affairs Directorate of the University of Ghana moderated the project launch and ensured a smooth flow of proceedings and engaged with the audience throughout the event. The program officially began with an introductory prayer led by Mrs. Dora Awuah, a research assistant on the ExtraCECI project team. Dr. Delanyo Dovlo, a retired Director of Health Systems at the WHO Regional Office for Africa chaired the occasion and Dr. Joseph Adjetey Oliver-Commey, the acting Director of the Infectious Disease Centre in Ghana delivered the keynote address. Some of the undergraduate students at the event performed choreography to entertain the guest. Welcome Address Prof. Florence Naab, Dean of the School of Nursing and Midwifery at the College of Health Sciences, expressed her heartfelt excitement about the launch of the ExtraCECI Project. She emphasised the project's significance to the collaborating institutions, especially highlighting its importance to the School of Nursing and Midwifery and the University of Ghana. Prof. Naab noted how the ExtraCECI project aligns with the University's 2024-2029 Strategic Plan, which aims to foster innovation, excellence, and impactful research. She reiterated the broader objective of the School of Nursing and Midwifery to produce highly skilled healthcare professionals who are equipped to deliver quality care that is responsive to the evolving needs of individuals and communities. She underscored the project's potential to advance person-centred HIV care in Ghana, thereby contributing to the betterment of healthcare outcomes. Additionally, Prof. Naab assured attendees of the School of Nursing and Midwifery's unwavering commitment to the ExtraCECI Project. She expressed sincere gratitude to the partners for choosing the school as a collaborator, acknowledging the trust and confidence placed in the institution. Her remarks highlighted the collaborative spirit and dedication of the school in working towards the success of the project, and she looked forward to the positive impact it would have on healthcare in Ghana. Keynote Address Dr. Joseph Adjetey Oliver-Commey, the acting Director of the Infectious Disease Centre in Ghana, emphasized the crucial role of person-centred interventions in meeting global HIV targets. He noted that the ExtraCECI Project signifies a significant shift in the approach to HIV care, moving away from a one-size-fits-all strategy to a more personalised, patient-centred model. He highlighted the importance of community-based care, noting that by working closely with local communities, a supportive environment can be created to promote adherence to treatment, encourage disclosure, and foster social support, all of which are essential for effective HIV care. Dr. Commey reiterated that by the end of 2025, significant progress could be made in reducing stigma and discrimination, as well as addressing gender inequalities and violence, by 10%. He also expressed optimism that 95% of people would know their HIV status, 95% of those who know their status would initiate some form of care, and 95% of those who initiate care would achieve viral suppression. His remarks underscored the transformative potential of the ExtraCECI Project and the importance of a community-focused, personalised approach to HIV care. His vision and optimism were evident as he articulated the project's goals and the impact it could have on improving the lives of people living with HIV/AIDS. Principal Investigator's address The principal investigator, Dr. Mary Abboah-Offei, highlighted the project's innovative approach, which aims to provide comprehensive, holistic care that addresses the physical, psychological, social, and spiritual needs of people living with HIV/AIDS. She emphasised the importance of empowering patients to take an active role in managing their health and making informed decisions about their care, a commitment that began at the start of her career as a nurse, through to her pursuit of master's and PhD degrees. Dr. Abboah-Offei stressed the significance of person-centred care, stating that it is crucial for PLWHA to live normal lives just like any other person. She elaborated that PCC goes beyond merely managing HIV as a medical condition; it is about recognising and respecting each individual's values and preferences based on their unique experiences. She affirmed that the ExtraCECI Project is dedicated to making this vision a reality by fostering a care model that truly sees and serves the whole person. Her remarks underscored the project's dedication to transforming HIV care in Ghana, ensuring that PLWHA receive the comprehensive support they need to thrive. Dr. Abboah-Offei expressed her optimism about the project's potential to improve the quality of life for individuals living with HIV, aligning with the broader objective of advancing person-centred care. Remarks by Co-Investigators Prof. Richard Harding, Interim Dean of the Faculty of Nursing, Midwifery, and Palliative Care at King's College, expressed his genuine delight at the project's ambitious vision. He highlighted that the ExtraCECI Project has the potential to produce impactful research with far-reaching implications. Prof. Harding noted the uniqueness and significance of the ExtraCECI research initiatives, emphasising its importance to numerous organisations, both in Ghana and globally. He specifically mentioned entities like UNAIDS and other policymakers who recognise the project's potential to advance the field of HIV care. In his concluding remarks, Prof. Harding stressed the need for healthcare providers to adopt a more person-cantered approach when delivering services to people living with HIV/AIDS. Prof. Harding proudly declared that the ExtraCECI Project is a groundbreaking effort originating from Ghana and poised to make a global impact. Address by the National AIDS and STI Control Programme Dr. Stephen Ayisi Addo, the program manager at the National AIDS and STI Control Programme expressed his excitement about the project's potential to addressing the barriers in HIV care in Ghana. He added that the UNAIDS 95-95-95 targets aim to ensure that by 2030, 95% of all people living with HIV know their HIV status, 95% of all people diagnosed with HIV receive sustained antiretroviral therapy, and 95% of all people receiving antiretroviral therapy have viral suppression and the EXTRACECI project will create an opportunity to develop some policy guidelines to mainstream community-based person-centred enhanced care. Addresses by the Patient-Public Involvement Network Speaking on behalf of the PPI network, Mama Setriakor-II (Queen Mother) who represented the public, emphasised their commitment to working hand-in-hand with the research team, healthcare providers, and policymakers to ensure the realisation of the project's objectives. Representing the Patient and Public Involvement network, Mama Setriakor-II (Queen Mother) spoke passionately on behalf of the public emphasising the network's unwavering commitment to collaborating closely with the research team, healthcare providers, and policymakers. Mama Setriakor-II underlined the importance of a united effort in achieving the project's objectives, highlighting that the involvement of the public is crucial to the success of the ExtraCECI Project. "the ExtraCECI project was more than just a clinical trial, it is a testament to our shared commitment to improving the quality of live of clients and addressing a major public health challenge in Ghana" (Mama Setriakor-II, Queen Mother). Mamaga Bumbedee (Enkoso Hemaa-I), a member of the Patient and Public Involvement (PPI) network, shared her personal journey of being diagnosed with HIV approximately 23 years ago. Speaking on behalf of people living with HIV/AIDS, she expressed heartfelt gratitude to the medical staff and researchers for their unwavering support of the ExtraCECI Project and their significant contributions over the years in improving the quality of care. "I never thought of being alive to see this day 23 years ago when I was diagnosed, I thought my life came to an end because then I knew that when you have HIV, you have 5 years to die. So in fact I was mourning myself, nobody knew why I was always wearing black. Thanks to researchers and I promise on behalf of my community that we shall support this project." (Mamaga Bumbedee Enkoso Hemaa I- PLWHA Community leader). Chairman's Remarks In his opening remarks, Dr. Delanyo Dovlo, a retired Director of Health Systems at the WHO Regional Office for Africa, highlighted the importance of the ExtraCECI Project in ensuring that people living with HIV/AIDS (PLWHA) receive the highest quality of care. He emphasised that the project's innovative approach and person-centred care model would significantly improve patient care in Ghana. Dr. Dovlo also expressed his heartfelt appreciation for the support shown by stakeholders and the public towards the project's launch. He commended their collective efforts and encouraged everyone to continue working together to ensure a smooth take-off and the successful implementation of the project. He highlighted the significance of maintaining momentum and collaboration to achieve the project's goals of advancing person-centred HIV care. In his closing remarks, Dr. Dovlo acknowledged the generous support from the funders of the ExtraCECI Project, namely the UK Medical Research Council and the Foreign, Commonwealth and Development Office. ExtraCECI Project logo The project launch was climaxed by the unveiling of the ExtraCECI Project logo by the Chairman, PI (Dr Abboah-Offei) and other dignitaries. The concept of the project logo focused on the connectivity of patients, families, healthcare professionals, and the community, symbolised by the rings that extend from the outside to the inner core. The primary color is calming blue, which stands for compassion, trust, and care, while the green leaf represents growth, harmony, and balance in healthcare. The rest of the project team members based in Ghana in the persons of Dr. Gladys Dzansi, Senior Lecturer Department of Adult Health, School of Nursing and Midwifery, College of Health Science, University of Ghana, a co-investigator and the Project lead in Ghana; the Project Coordinator Dr Elizabeth Odoi; Mr Edem Dzantor, research assistant responsible for data management; Madam Dora Awuah, a clinical psychologist; Mr Prosper Anatsui and Madam Matilda Mensah who are all research assistant employed full time to enhance project delivery, all contributed to the success of the official project launch. Media Coverage The Project was covered media outlets, with GTV and UTV serving as the official local media partners. The programme was broadcast live, along with additional media coverage. The news can be obtained through a variety of media platforms, including the University of Ghana's official social media pages, Radio Universe, GTV, and UTV. Instagram https://www.instagram.com/p/DFcV1XOsTVF/?igsh=YmJhd3Z6cmd4ejNu Facebook: https://m.facebook.com/story.php?story_fbid=pfbid0vicgiJ9fMZer4ji3r9Zx5yZL9aWtDU5JDDhQTqfowyJeuZeiGfj6ZUdk12KWQcf7l&id=100063220899400&mibextid=RtaFA8 Project Gallery: https://tinyurl.com/37akdmcf Acknowledgement The ExtraCECI Team is grateful to the funders UK Medical Research Council and the Foreign, Commonwealth and Development Office. The team would like to extend its sincerest gratitude to: Research Innovation Development (RID) at the University of Ghana for the oversight responsibility and fund management. Prof. Yawson, Provost of the College of Health Sciences, for his unwavering support. Prof. Florence Naab, Dean of the School of Nursing and Midwifery, for her outstanding leadership. The Greater Accra Regional Health Management Team for their invaluable assistance with the ExtraCECI Project. We are deeply grateful to the President and Regional Executives of NAP+ Ghana, a network of people living with HIV, for their collaboration and commitment to our shared mission. Additionally, we acknowledge and appreciate the contributions of the following individuals and organizations whose efforts played a vital role in making our project launch a resounding success: • The Ghana Registered Nurses Association • The Ghana Midwives Association • The Conference of Heads of Health Institutions • The Deputy Director of Nursing Group - Greater Accra Chapter • Faculty and Staff of School of Nursing and Midwifery • Management and Staff of the Infectious Disease Center • All health facility heads • All facility level and District level HIV coordinators |
| Year(s) Of Engagement Activity | 2025 |
| URL | https://jcjcproductions70.pixieset.com/ugconference/ |
| Description | ExtraCECI Project Theory of Change Workshop with stakeholders and to refine the ExtraCECI intervention |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Theory of Change Workshop The Theory of Change workshop was oraganised with stakeholders on January 21, 2025, at the Cedi Auditorium, University of Ghana, from 8:00 a.m. to 3:30 pm. This workshop involved stakeholders who were invited to contribute to the 'extra' components proposed for the refinement of the community-based enhanced care intervention (CECI) intervention to become ExtraCECI. The research team and stakeholders worked collaboratively to achieve the purpose of this workshop. The workshop began with participant registration between 8:00 am. and 9:00 am with a total of 48 participants in attendance including representatives from the Greater Accra Regional and Municipal Health Directorates, HIV focal persons, people living with HIV and communities that support their cause, and healthcare professionals. The workshop started with four brief presentations to set the tone for the workshop: 1st Presentation - HIV epidemic and care situation in Ghana Dr. Ayisi Addo, the Programs Manager of the National AIDS/STI Control Program, presented on the HIV epidemic and care situation in Ghana, highlighting the progress made with the 95-95-95 strategy and the prevention of mother-to-child transmission. Dr. Ayisi Addo also emphasised the prevalence of HIV in the general population and among key populations such as men who have sex with men, women who have sex with women, drug users, sex workers, and the transgender community. He discussed the services provided by the Ghana Health Service related to HIV/AIDS, including various service delivery models and the distribution of antiretroviral drugs at the community level to facilitate easier access to medications. Dr. Ayisi Addo also addressed the issue of stigma faced by people living with HIV/AIDS, which causes many individuals to seek care in distant communities to avoid recognition. He stressed the importance of reducing stigma, enhancing training on quality improvement tools, and adopting innovative approaches such as electronic service delivery, the use of drones, E-tracker technology, and online training for healthcare professionals to stay updated on current HIV management practices. 2nd Presentation - The Concept of Person-Centred Care in HIV care Professor Richard Harding, a co-investigator on the project, presented on the concept of person-centred care in the context of HIV, emphasising the significance of person-centred care and why it matters in HIV care. He defined person-centred care as shifting the focus from the life of the virus to the life of the host. Prof. Harding also presented research findings comparing holistic assessment and care planning for patients, demonstrating that holistic care planning and assessment significantly enhanced mental health, and palliative care outcomes to improve treatment adherence. Open forum for stakeholders to ask any questions on the first two presentations: A 30-minute session was allowed for questions and discussions on the presentations, which was interactive and engaging, allowing participants and the research team/facilitators the opportunity to ask important questions about the project and the potential to improve the quality of life among people living with HIV. Various discussions were held including concerns about how the laws of Ghana do not support facilities in providing dedicated legal assistant to patients when issues of stigma and discrimination arise. The need to follow-up after healthcare professional training to ensure that person-centred care is being implemented was also discussed. 3rd Presentation - Overview of the ExtraCECI Project focusing on how it all started Dr. Abboah-Offei provided an overview of the ExtraCECI Project, detailing its origins, aims, and objectives. She highlighted the existing literature gap concerning the understanding of person-centred care, the lack of well-designed interventions with logic models and supporting data, and the absence of clinical or intervention trials for these models. This led to the feasibility testing of the Community Enhanced Care Intervention (CECI) Logic Model in Ghana, which primarily focused on training healthcare professionals (HCPs) to deliver person-centred care. The workshop aimed to add 'extra' components to CECI, including empowering people living with HIV/AIDS to be involved in their care decisions and how to use telehealth to support ExtraCECI delivery. The workshop discussed the two 'extra' components focusing on: 1. How can we empower people living with HIV/AIDS to engage, participate and contribute to their care decisions as part of the ExtraCECI intervention? 2. What ways can we work with healthcare professionals and Models of Hope to use mobile phones (text messaging for information sharing and voice calls for follow up, assessment and enabling feedback in the communication process) to deliver ExtraCECI? The research team engaged stakeholders, particularly the patient and public involvement network, Models of Hope, regional and municipal HIV focal persons, and healthcare professionals in discussing the above questions using the eight steps to achieving the theory of change. 4th and final presentation - Theory of Change Process Leading the process, Dr. Nkhoma guided participants through the concept, emphasising its importance to the project. His presentation focused on "Utilizing the Theory of Change (ToC) Framework for Novel Care (ExtraCECI) Delivery." Dr. Nkhoma defined ToC as "filling in the missing middle" of how to achieve project goals. He explained that ToC is crucial for identifying what we want to achieve and how to get there, developing our "map" or guidelines for achieving goals, considering our "context," and planning "buy-in." Stakeholder Group Discussion Following the introduction of the concept of theory of change, stakeholders were grouped into five discusion groups to answer the following questions on the 'extra' components: 1. How can we empower people living with HIV/AIDS to engage, participate and contribute to their care decisions as part of the ExtraCECI intervention? 2. What ways can we work with healthcare professionals and Models of Hope to use mobile phones (text messaging for information sharing and voice calls for follow up, assessment and enabling feedback in the communication process) to deliver ExtraCECI? Group Discussion The group discussions lasted for 30 - 45minutes, during which participants discussed the above questions providing answers that were later categorised following the s steps to achieving the theory of change starting from the step 8 and working down to step 1: 8. What do we want to achieve (for PLWHA and their careers, and health care professionals)? IMPACT 7. What do we want to be different about existing care services for PLWHA in the future? LONG TERM OUTCOMES 6. What changes would we like to see in PLWHA and their family's wellbeing? IMMEDIATE OUTCOMES 5. What should we do in terms of care and support for PLWHA- what should be delivered for them? TREATMENT AND CARE 4. How can we best identify all those who could benefit? AWARENESS 3. What does staff need to do this? TRAINING & SUPPORT 2. What do we need (eg. people, equipment, place, etc)? RESOURCES 1. How & Who do we need to support this intervention and make it happen? BUY-IN Group responses and categorisations using the above steps were summarised and feedback provided to the team and stakeholders. Detailed analysis of responses will be conducted for possible poblication however, below is a summary of stakeholder responses received as aligned to the 8-steps: 1. Buy-In a) Communication b) Adopting individual communication preference c) Need assessment - What, When, Where and Who d) Involvement of client in care e) PLWHA consent to partake in the mobile service delivery f) Finding about the medium of communication that will be comfortable for PWHA, this depends on the individual and what works for him/her either with texts or call services g) To involve the PLWHA in their decision making h) Introduction of model of hope to PLWHA i) Giving listening ears to PLWHA j) Creation of safe and friendly space to enable PLWHA open up on matters affecting them 2. Resources a) Provision of necessary resources. Eg airtime and phone b) Ensuring a conducive environment c) To provide airtime, data and call log book d) Developing an app e) Creating an app to focus on schedules, reminders and integrated services f) Creating conducive environment g) Creation of safe or friendly space to enable PLWHA to open up on matters affecting them h) Creation of communication platform. E.g Whatsapp i) The use of mobile phone will help the healthcare provider to reach out to PLHIV with regards to their needs j) Accessibility of android phones k) Assigning a model of hope to do the calling l) Financial support 3. Training and Support a) Training and adherence to telephone etiquette b) Teach cadres on communication skills and techniques c) Train cadres on the 5'Cs - Confidentiality, Concise, Clear messages, Completeness, Compassion d) Training on the use of mobile phones e) Data privacy and confidentiality f) Capacity building on how to use the tools g) Educate PLWHA on patient charter h) Counselling - Carer to receiver mentorship i) Empower PLWHA groups through capacity building and fostering support group meetings j) Training HCPs as well as models of hope on the importance of using mobile phones for treatment support and follow-up and providing correct contact k) Health education 4. Awareness a) Education on what EXTRACECI entails b) Empowering the PLWHA to choose the options available c) Health education d) Communication - Trust, Good Rapport, Involvement of client in his/her care e) Setting clear boundaries on phone calls f) Education - Informing PLWHA on concept of EctraCECI to understand the need to contribute to the intervention g) There should be specific acronyms to messages being sent to PLWHA h) To educate the PLWHA to understand the disease condition i) Criteria for safety and security assessment in communication with PLWHA j) Condition, treatment option and rights k) Sensitization on the use of mobile phones 5. Treatment and Care a) Proper counselling and disclosure of status, acceptance to be able to fight self-stigma among modules b) Educate adherence to treatment c) The model of hope must really exhibit the quality of a true mentor d) Ensure confidentiality e) Involvement of clients in care f) Needs assessment - What, When, Where and Who g) Allow the PLWHA to make informed decisions on the type of care desired h) Creation of support groups i) There should be trust between the PLWHA and the caregiver j) Provide emotional support for PLWHA k) The use of mentor mothers, models of hope for house visit or defaulter tracing l) Integration of quality services for proper health care delivery m) Management strategies - side effects of treatments n) Assurance of confidentiality o) Follow up calls and appropriate timing p) To involve family members within their care q) Maintain privacy and confidentiality r) Making use of cadres - Models of Hope, Mentor Mothers and Community Actors Treatment Supporters (CATS) s) Supportive supervision and monitoring of progress made t) There must be teamwork between the PLWHA and the caregiver u) Ensure confidentiality v) Flexibility in booking appointment between client and caregiver w) There should be a relatable language between the care provider and PLHIV so as not to disclose their healthcare needs to another person (confidentiality) 6. Immediate Outcomes a) PLWHA taking care of their self b) Creation of peer support group c) Monitoring and evaluation d) To create peer support groups to help PLWHA to open up on matters affecting them e) PLWHA should be responsible for their healthcare f) Establishment of good relationship g) To establish good relationship/rapport with PLHIV 7. Long Term Outcome a) To monitor by giving random calls to verify b) Record feedback calls from clients c) To monitor the MoH, CATS and other cadres d) Staff should exhibit communication techniques e) Community led monitoring f) To create peer support groups to help PLWHA to open upon matters affecting them g) To develop an app for communication, follow up and refill 8. Impact a) Effective communication b) Self-stigma reduction Conclusion The group discussions provided valuable insights into empowering people living with HIV/AIDS to actively participate in their care and leveraging Telehealth as part of the ExtraCECI delivery. The steps highlighted the importance of stakeholder buy-in, resource provision, awareness creation, continuous training, and monitoring. The long-term goals focused on reducing stigma, improving self-care, and fostering supportive environments. Additionally, the participants emphasised the impact of reducing self-stigma and improving communication, aligning with the broader goal of enhancing health outcomes for people living with HIV/AIDS. The responses also underscored the importance of adopting individual-oriented communication preferences, building trust, and fostering empowerment through capacity-building activities for both people living with HIV/AIDS and healthcare providers. Overall, the workshop was well-received by stakeholders, who expressed high levels of satisfaction as shared below: • Engagement and Inclusivity: Participants appreciated the involvement of all stakeholders, which fostered a sense of ownership and collaboration. "You did well by involving all the stakeholders." "The workshop was well organized and planned and allowing some of us with experience in the field to come and share." • Educational and Impactful: Many participants found the workshop informative and impactful, with some expressing a desire for similar workshops in the future. "The training was impactful; I wish it will be held again." "Very educative and impactful." • Facilitation and Group Work: The facilitators were commended for their clear explanations and the inclusion of interactive group work, which enhanced understanding. "The workshop was in the right direction as facilitators devoted their time to really explain for great understanding, most especially with group work." |
| Year(s) Of Engagement Activity | 2025 |
| URL | https://drive.google.com/drive/folders/1XgRsrX-tU3cHTKyXj2U7YJXDZwDK5f-B?usp=sharing |
| Description | Patient and Public Involvement (PPI) in Research inception meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Patient and Public Involvement (PPI) in Research inception meeting was held to first create awareness about the ExtraCECI project and to also discuss the rationale for involving patients and public in research. During this presentation, the development activities including the feasibility trial findings that informed the ExtraCECI project was discussed including the aims and objectives of the project. The first objective being the establishment of a patient and public involvement (PPI) network of support groups and stakeholders to inform research procedures and dissemination throughout the project implementation, this objective was discussed extensively. This started with a definition of PPI, their role in research projects and particularly how PPI is being involved in the ExtraCECI project and what their participation would look like. We concluded with a discussion on the project timelines, how often we will be engaging the PPI in each project year and the audience were given opportunity to ask questions. |
| Year(s) Of Engagement Activity | 2024 |