FINAL REPORT A study to determine the quality and level HBC care activities in the Kunene Region Prepared for Medicos del Mundo Prepared by Jerry Mameja March, 2007 Table of Contents Acknowledgement -------------------------------------------------------------------i Abbreviation --------------------------------------------------------------------------ii Executive Summary ------------------------------------------------------------------iii 1. Introduction ------------------------------------------------------------------1 2. Background of Kunene Region--------------------------------------------3 3. Design and Methodology---------------------------------------------------3 3.1 Overview ------------------------------------------------------------3 3.2 Field work------------------------------------------------------------4 4. Findings ------------------------------------------------------------------------5 4.1 Caregiver----------------------------------------------------------------5 4.1.1 Age of caregivers------------------------------------------------------6 4.1.2 Education of caregivers-----------------------------------------------6 4.1.3 Training of caregivers-------------------------------------------------6 4.1.4 Selection of caregivers------------------------------------------------7 4.1.5 Incentives----------------------------------------------------------------7 4.1.6 Hours spend on caregiving-------------------------------------------8 4.1.7 Understanding of roles of caregivers-------------------------------8 4.1.8 Volunteerism------------------------------------------------------------9 4.2 Clients 4.2.1 Educational background of clients---------------------------------10 4.2.2 Age of clients----------------------------------------------------------10 4.2.3 Gender and marital status of clients------------------------------11 4.2.4 PLWHAs Among Those On Home Based Care----------------12 4.2.5 Dependants of Clients-----------------------------------------------12 4.2.6 Coverage of CHBC services---------------------------------------14 4.2.7 Availability of HBC kits for use by care givers------------------14 4.2.8 Skills of care givers to monitor CHBC services----------------14 4.3 Coordination and networking----------------------------------------15 5. Conclusion and Recommendations--------------------------------------------17 ANNEXES: 1. FGD-Caregivers 2. LLKI-Caregivers 3. LLKI-Coordinator 4. LLKI-Patients 5. FGD-Patients 6. Fieldwork Plan Abbreviations AIDS Acquired Immune Deficiency Syndrome AFM Apostolic Faith Mission ARV Anti-retrovirals DACOC District AIDS Coordinating Committee DHS Demographic and Health Survey CHBC Community Home Based Care ELCAP Evangelical Lutheran Church AIDS Programme IGP Income Generation Projects HIV Human Immunodeficiency Virus M&E Monitoring and Evaluation MdM Mιdicos del Mundo MoHSS Ministry of Health and Social Services MoU Memorandum of understanding MIPA Meaningful Involvement of People Living with AIDS MTP Medium Term Plan NGOs Non Governmental Organizations OVC Orphans and Vulnerable Children PLWAs People Living with HIV and AIDS NRCS Namibia Red Cross Society RACOC Regional AIDS Coordinating Committee TOR Terms of Reference UNAIDS United Nations Joint Programme on HIV/ AIDS VCT Voluntary Counseling and Testing ACKNOWLEDGEMENT I would like to thank all of those who generously took time from their busy schedules to participate in this assessment, to be interviewed, to answer questions, to share their views and, in many other ways, to make certain that we had the crucial information required to complete this study. In particular it is imperative for us to acknowledge the Home Based Care Clients, and the Secondary Caregivers of the Community Home Based Care Services in all the communities of Opuwo, Epupa, Sesfontein, Khorixas, Kamanjab and Outjo constituencies. I am particularly grateful to the Secondary Caregivers and Clients who took the time to participate in focus group discussions. It would have been impossible to complete this study without their participation. Amaia Unzueta of Medicos del Mundo deserves special recognition for her willingness to work late and give up her weekends to ensure that this study was completed on time. My special thanks goes to Sister Pujo Mbaumba and Doctor Ebong Akpabio who provided as much detail of the Kunene CHBC Programme and the Regional AIDS Coordinator, Mr. Charles Uarije, who traveled with us to the communities and paved the way for the interviews. We are especially aware that several staff of MdM and their key stakeholders from The Ministry of Health and Social Services, The Constituency AIDS Committee, Namibia Red Cross Society and Evangelical Lutheran Church AIDS Programme, who set aside time from the important business of preventing HIV and mitigating the impact of HIV/AIDS in the Kunene Region, to be interviewed as key informants. I hope I have adequately reflected the information collected in the field and that the research findings and recommendations contained in this report will contribute to a clearer road map for the Kunene CHBC programme in developing strategies and interventions to mitigate the negative effects of AIDS related illness, to an improved and increased understanding concerning the challenges experienced by CHBC clients, primary and secondary caregivers, their immediate families and communities at large. Jerry Mameja May 2007 ii EXECUTIVE SUMMARY The Namibian government has long recognized the need to strengthen Community Home Based Care (CHBC) efforts to ease the congestion and costs of institutional hospital care for chronically ill PLWHAs. In order to improve the quality of life of PLWHAs, lessen the burden of care on families and the community, the government has instituted several policies and guidelines to provide access to CHBC, manage and mitigate the negative effects of HIV and AIDS. These policies include; . Integrated Training Manual of Community Home Based Care Volunteers . Handbook on Community Based Care . Guidelines for Home Based Care . The National AIDS Policy . Community Based Health Care Programme Policy (currently underway) In recognition to Community Home Based Care being internationally recognized as the backbone of assisting governments to cope in alleviating congestion within institutional care, Medico del Mundo (MdM) decided to undertake a baseline study before assisting CHBC implementing partners in the Kunene Region. Specifically the study was undertaken; . To assist MdM to understand the challenges faced by clients, primary and secondary caregivers of Community Home Based Care Services with the aim to assist implementing partners to design a programme that will appropriately address some of these challenges and meet the needs of clients. Results from the study show that clients and caregivers face various challenges in receiving and implementing Community Home Based Care Services. The lack of proper infrastructure in the Kunene Region currently has negative effects on the client as access to treatment and nutrition have become limited and caregivers lack basic materials and skills to lessen the pain of the client. CHBC in a mature epidemic has become even more complex as both primary and secondary caregivers are being asked to do more in terms of the services they are providing, which go far beyond the client’s basic needs, but encompass the material and psychosocial needs of the children and other members of the family. Key findings of the study are; . Women and children continue to bear a disproportionate burden of HIV in terms of prevalence rates and also care, with 76% of women in the 6 study areas accounting as carers; . Male involvement in CHBC in the region is very limited; . Nutritional support of clients is questionable since no concerted effort is made to provide patients with balanced diet, except for the e-pap provided for by iii partners such as MdM. There is also no systematic approach to the provision of nutritional support; . The bulk of clients on CHBC face challenges that are likely to hinder their recovery such as lack of food, nursing care, medical care (treatment) and financial support; . More than 90% of secondary caregivers did not feel empowered to meet the basic needs of their clients with a significant number stating they could not meet nutritional, medical fees and basic care and support services; . Although, generally caregivers are provided with HBC kits, these are not readily replenished; . Many lacked skills to meet the psychosocial and material needs of the client’s children, knowledge on will writing and comprehensive counseling skills to add value to their work; . A majority of the clients on CHBC were aware of their HIV status, signifying the importance of Counseling and Testing as a significant entry point to primary care and support; . A majority of the secondary caregivers had received Community Home Based Care training. However, the training was not consistent in terms of refresher courses to allow them to deal with emerging client issues; . The CHBC programme in the region has limited resources and programme expansion may become a challenge to meet the basic needs of clients, mainly those related to food and nutritional support. Partners such as NRCS have basic selection criteria of caregivers and monitoring and evaluation systems to track the programme’s achievements, but these needs to be further enhanced and shared with others in the region. Several recommendations are outlined in this report. The five key foundations for CHBC responses relate to: . Resource Mobilization to meet the basic needs of CHBC clients who have limited to no access to ARV treatment or basic clinical care; . Greater coordination among CHBC implementers to effectively respond to clients needs; . Encouraging male involvement and responsibility to promote care as a normal human development lessening the current burden of care on women. Care must be recognised as a priority human need and the community must encourage the commitment of both men and women to caring work; . Structured and consistent training of secondary and primary caregivers to offer a holistic menu to clients ranging from HIV prevention, psychosocial care, information of treatment preparedness, counseling and testing, psychosocial support for children, general disease management and control; and . Mobilizing communities to promote and sustain CHBC to alleviate the burden of care on the primary caregiver and the family is essential. Many of the traditional informal care structures are already overwhelmed and liable to break down if they are not given support and these valuable resources need to be nurtured, protected and strengthened. Taken together, these five approaches will assist MdM to contribute to improving the CHBC services and alleviating the negative impacts of AIDS directly on the client and lessening the burden of care on the secondary and primary care givers, the majority of whom are young women and children. 1. Introduction Namibia is in the unenviable position of belonging to one of the most severely HIVaffected countries in the world and in Southern Africa. Although there has been considerable progress in understanding the many facets and determinants of HIV infection, the likely course of the pandemic and the depth of its impact are still unknown in many countries. Resource-limited countries with high rates of infection face the biggest challenges, as government and NGO infrastructures are often undeveloped and slow to shift their focus away from nation-building and other perceived priorities in order to scale up their response to HIV/AIDS. This has been the case in Namibia. The steep rise in HIV-infection rates came just a few years after its independence in 1990. Although only 4 cases of HIV were diagnosed by 1986, by 2002 22.3% of all pregnant women in Namibia were estimated to be HIV-positive (Ministry of Health and Social Services, 2001). Today HIV prevalence is 19.7%. The decline in prevalence rates is not indicative of the number of people in need of care and support. It is estimated that at least 260,000 Namibians are living with the virus; out of that population at least 31,596 are in need of Home Care Service but only 40% are receiving home care services. A mature epidemic such as the one being experienced in Namibia, more people are succumbing to AIDS and are in need of treatment. Although Namibia is at an advanced stage with regard to the provision of care through the public and private health services with nearly 50% receiving care, a significant number are receiving care at home through the CHBC programmes. For nearly three decades community-based engagement and collaborations have dominated the efforts from researchers, academicians, and programme managers to improve community decision-making and action for health promotion, health protection, and disease prevention. As a result of this concerted undertaking, community-based organizations (CBOs) have seen enormous increase of individual household and community volunteers working collaboratively with or through groups of people affiliated by geographical proximity, special interests or similar situation to address issues affecting the well-being of their people. The devastation of HIV/AIDS, Malaria and Tuberculosis, on communities has prompted the Government to call for individuals, households and communities to rise up to the challenge of fighting these diseases. The answer to this call is evidenced through the increased number of household/community-based programmes. One such intervention is an increased activity around community and home based care of terminally ill patients as a result of HIV/AIDS. Due to the AIDS epidemic, the increase in non-communicable disease, the implications thereof and an ageing population’s impending impact on communities, it became necessary to consider how best to provide care for healthy people, those with disease and their families. Evidently, as more people become ill, most will not be able to stay in hospitals, hospices and institutions of care. Home and Community care is a formidable tool to provide health services by formal and informal caregivers in the home in order to promote, restore and maintain a person’s maximum level of comfort, function and health including care towards a dignified death. 2 Community Home Based Care has received wider attention in Namibia from the Namibian government for its ability to provide continuum of care for the chronically ill and PLWHAs in their home environment. It provides services in a cost effective, sustainable and comprehensive manner, in a complementary approach to institutional care. CHBC programmes by organizations such Namibia Red Cross Society and Catholic AIDS Action have therefore been hailed by the MOHSS as an effective approach for reducing congestion in hospitals, thereby reducing health/hospital expenditures in the face of increasing number of chronically ill (PLWHA, malaria, TB patients and other incurable illnesses). Apart from providing care and support to clients/patients, the CHBC programmes also seek to enhance or build the capacity of clients’ families to offer affordable, quality care for their relatives. In order to improve the quality of life of PLWHAs, lessen the burden of care on families and the community, the government has instituted several policies and guidelines to provide access to CHBC, manage and mitigate the negative effects of HIV and AIDS. These policies include: . Integrated Training Manual on Community Home Based Care . Handbook on Community Based Care . Guidelines for Home Based Care . The National AIDS Policy . Community Based Health Care Programme Policy (currently under way) Although the Kunene region is the least affected in terms of HIV prevalence, a number of entities providing CHBC have emerged. However, this emergence of community based programmes has not been uniform both geographically and in operations. This implies that approaches to sustaining them are also varied. Collaborative effort is fundamental to success and ensures that care in the community becomes care by the community. It is thus fundamentally crucial to gain an understanding of the operations of the various service providers and identify areas of technical support and greater collaboration. Hence the rapid assessment of the effectiveness and quality of the Home Based Care services being offered in the region by the various service providers and gather information on areas that need improvement in the network system, capacity building need for caregivers and identify need for support to the grass root level. The specific objectives of the assessment are to: . Ascertain the challenges being faced by the care givers, health personnel, stakeholders and the community in their efforts to provide quality HBC services . Provide advise on best practices and weaknesses . Identify training and other needs of the clients, community and HBC givers . Identify opportunities for collaboration among partners offering HBC services and other HIV/AIDS service providers . Identify opportunities for collaboration among caregivers of different NGOs operating in the same communities . Provide advise on the best methods of monitoring HBC services using common guidelines in the region 3 . Gather and analyse information on common incentives, such as HBC kits, and its agreed content 2. Background of Kunene Region The population of Kunene region is currently estimated at 74,110 and 75% of this is rural based. The region has the lowest literacy rate in the country at 57%, but 72% of the population has access to a radio for the purpose of IEC. According to the 2004 sentinel sero-survey, the HIV/AIDS prevalence in Kunene was the lowest in the country at nine percent and the only region with prevalence below 10%. The region is sparsely populated with a density of 0.6 persons per square kilometer and many of the roads are not tarred. This creates challenges in delivering social and health services to the inhabitants and requires commitments, perseverance and resourcefulness on the part of the health workers and public health managers. The shortage of critical health care professionals, such as doctors, nurses and social workers plagues the region and hampers the provision of quality service delivery. This vast region is divided into six constituencies (Opuwo, Epupa, Sesfontein, Khorixas, Kamanjab, and Outjo). The administrative functions of the region are performed at Opuwo. Currently, there are three major HBC players in the region as outlined on the table below. The NRCS has the most volunteers (103), followed by MoHSS (69) and ELCAP (53). AFM is the latest addition with 5 volunteers and operates in one town in the Khorixas constituency. Table 1: Trained Home Based Caregivers by different Organisations Organisation Constituency Outjo Opuwo Khorixas Sesfontein Kamanjab Epupa NRCS 26 8 57 - 12 - ELCAP 25 7 - 15 5 - MoHSS 12 46 11 - - 3 AFM - - 5 - - - TOTAL 75 61 73 15 5 3 3. Design and Methodology 3.1 Overview Four main approaches were incorporated to collect information on HBC activities in the Kunene region namely, a desk review of the existing literature, a questionnaire, in-depth interviews, key informant interviews with stakeholders, supervisors, national managers, regional coordinators, caregivers and patients and focus group discussions with clients and caregivers. The main reason why multiple-methods were opted is that we are cognizant of the fact that no single research method would capture all of the changing features of the social phenomena being studied. Thus, the benefits and shortcomings of the various methodologies were considered and an integrated approach was used which combined elements of both qualitative and quantitative data, enabling triangulation. 3.2 Field work The fieldwork was carried out over a period of one week, starting 28 January until 03 February. The research team visited the following constituencies: 1) Opuwo, 2) Kamanjab, 3) Sesfontein, 4) Epupa, 5) Khorixas, and 6) Outjo 4. Findings 4.1 Caregivers Table 2: Number of caregivers interviewed Constituency Male Female Outjo 2 7 Opuwo 2 6 Khorixas 0 11 Sesfontein 4 6 Kamanjab 3 6 Epupa 1 2 TOTAL 12 38 We interviewed 50 people, 12 male and 38 female. That means that female secondary caregivers constitute 76% of the caregivers. This depicts, more male clients are being taken care of by female care givers as male caregivers are hard to come by. There are various reasons of low male involvement in CHBC programmes, as traditionally, socially and culturally care has been the domain of women since its viewed as domestic work. Domestic work is viewed as low status since it is not paid (women’s work) and men are expected to be breadwinners and should prioritize income paying employment instead of voluntary work. Therefore the role of caring for the sick has been regarded as the full responsibility of women including the girl child. In addition, women bear a disproportionate burden in terms of HIV prevalence in Southern Africa. Recent estimates done by UNAIDS suggest that women account for over 60% of all new HIV infections in the region. The recent Namibia DHS (2000) corroborates the findings, where it is estimated that women bear the disproportionate brunt of the epedemic, with an estimated 39% of women under 30 years being positive compared to 29% of men of the same age. In addition women also overwhelmingly bear the burden for the physical and emotional caring of the sick. In Southern Africa it is estimated that women account for 95% of carers in HIV and AIDS programmes. The table above indicates the majority of caregivers are women. In all the five constituencies of the study, women account for the bulk of carers of CHBC clients for both primary and secondary care services. The obvious dominance of women in the HBC programme have profound implication for the sustainability of such a programme, as there is a continuation of male centered power relations among men and women in Namibia. Until such time when we have developed and implemented evidenced based strategies that empower women, success and sustainability must be understood in the context of the contradictions and tensions of gendered relationships. 6 The challenge for the Kunene CHBC programme design is to develop and implement strategies that will involve more men in CHBC services but continue to motivate women who are already doing the bulk of caring. Therefore, it is recommended that MdM plays a role to: . Assist the CHBC programme to devise strategies for male involvement and motivation, such as regular male workhops/conferences and specific activities targeted at men etc.; and . Work with its partners to look at their recruitment criteria to cater not just for male involvement and motivation, but to promote care for it to be recognized as a priority human need and that society must encourage the commitment of both men and women to caring work. 4.1.1 Age of caregivers The average age of volunteers is 27 years, while that of the clients is 40 years. The age group of the Caregivers is essential in determining the training needs and resources required for effective care of CHBC clients by the age groups. It is also essential to note the age of the youngest primary caregiver, who is likely to be an out of school girl. This fact was more evident in Sesfontein where the majority of caregivers are young boys and girls whose primary motivation to join the programme is to improve their Curriculum Vitae, thus increasing prospects for empoyment. The greatest challenge faced by such young caregivers is the exposure to cross infections as well as compromising their ability to perform their duties, mainly when they are not properly trained. It will be critical for the programme design to enhance appropriate training geared towards these younger caregivers. 4.1.2 Education of caregivers Namibia’s literacy levels are relatively low compared to its neighbours, estimated at 65%, with the Kunene Region at 57%. The study included the level of education of caregivers. This was deemed essential for the Kunene CHBC programme to develop or re-package training materials and information to enhance skills, understanding and knowledge of Caregivers implementing CHBC services. Enhancing the skills and understanding of Caregivers is likely to improve the quality of care offered to CHBC clients. Most volunteers (90%) can read and write and over 70% have reached Grade 10. The programme design will need to re-package information and training materials to enhance skills to improve the quality of care being provided to CHBC clients by caregivers. Subsequenty, the strategies will need to take cognizant of the educational levels of both CHBC clients and care givers (primary and secondary) and must take care not to exclude caregivers who cannot read, regardless of their small proportion, but develop pictorial materials that will encourage their understanding 7 4.1.3 Training of caregivers Table 3: Training conducted by HBC implementing partners It is important that training be provided to all caregivers to enable efficient delivery of care and also acts as prevention tool against cross infection, stress and burnout. The National Home Based Care guidelines clearly articulate the following topical issues to be covered in the CHBC training; communication skills, basic facts about STIs, HIV and AIDS, basic nursing, infection control, counselling, home visits etc. About 90% of the Secondary Caregivers responded they had received training at one point on the aforementioned topics. The topics that have been covered in training include; basic counselling, child development, children’s rights, caring for the patient, communication skills, prevention of HIV transmission, nutritional needs of HIV and AIDS patients, psycho-social support, prevention of parents to child transmission, home visits, breast feeding, infection control, risk behaviours and prevention of bed sores. Although, over 80% of the volunteers feel that they received adequate training in counselling and that the training was sufficient at that point, more refresher training is needed due to the changing nature of the epedemic, and emerging issues such as ARVs, natural remedies, nutrition, and OVC care. It is obvious from the above table that almost all of the Caregivers recieved a once-off training in 2005. This is a worrisome fact considering the changing nature of the HIV/AIDS pandemic. In addition, volunteers would need more and continuous trainings that covers basic communication, will writing, and infection control. Primary caregivers should be given similar trainings. It is recommended that MdM work with stakeholders, both at the regional and national levels, in their efforts . To speed up refresher trainings; . To coordinate trainings and develop a standarized training manual and ranslate it into the local languages and . To increase the numbers of trained caregivers in constituencies, such as Sesfontein, Epupa and Kamanjab Organisation Training conducted Number of people trained Constituencies Year Conducted MoHSS Opuwo, Epupa, Khorixas, Outjjo 1999, 2001, 2003, 2004, 2005 72 NRCS Opuwo, Kamanjab, Khorixas, Outjo 2005 103 ELCAP Opuwo, Kamanjab, Sesfontein, Outjo 2005 52 8 4.1.4 Selection of caregivers All informants were asked how they became volunteers or how volunteers in their respective communities or organisations are selected. Generally people become volunteers by their own initiative, or through a selection by either internal mechanisms at community level or through outside initiatives by individuals, government or non-governmental organisations. The approaches are varied, as indicated in the table below. Table 4: Selection criteria of caregives Organisation Selection Crietria of volunteers Namibia Red Cross Society . Community announcements . Selection based on set criterias, i.e education, social engagement, age etc. ELCAP . Church announcements . No set criteria (based on willingness) MoHSS . Selection by nurse/s based in hospital The selection approach for volunteers is a very critical factor in volunteer attrition. When volunteers are selected by community structures within their environment, these structures are more likely to provide support and morale to them, thus reducing the chances of them discontinuing with volunteering. Some defined selection criteria that includes “minimum age” and “prior social engagement” must be considered. In addition, the Regional HBC Committee should take steps to standardise the selection criteria. 4.1.5 Incentives Motivation and retention of volunteers remains a problem. As the number of clients in HBC has increased, it has become increasingly difficult to motivate and retain volunteers. Many of the volunteers we spoke to are rewarded materially or monetary for the services they deliver. Generally, CHBC volunteers feel that they should be rewarded for the services they render, because they too must meet their needs of transport, food and clothing. Volunteers expect that if resources allow, they should be given bicycles, pay school fees for their children, free medication, washing soap, access to government food and input schemes. Much has been said about whether the provision of incentives by donors or external organizations to community volunteers destroys existing mechanisms or could influence the work of volunteers positively or negatively. According to CHBC volunteers, although they understand that the concept of outside organisations giving volunteer incentives may not be sustainable once funding comes to an end, it is still imperative to consider the circumstances under which they operate. Additionally, the government should standardise or put in place volunteer incentives. Volunteer turnover creates major problems where incentives are not standardised. For instance, the NRCS provide incentives of up to N$ 200 a month for their facilitators and N$ 500 for supervisors, whereas ELCAP provides as little as N$ 20 a month. To ensure sustainability of this concept, communities should work closely with implementing organisations to find ways of skills transfer. Furthermore, communities should get involved in income generating projects such as gardening, farming and poultry to help sustain the volunteering concept. Some also propose that the government should take steps to internalise volunteer incentives to ensure that once donor fatigue sets in, these vital activities are maintained. Importantly is that government services are enhanced by the use of volunteers and therefore should facilitate the development and implementation of a minimum standard of volunteer tools and materials that include risk-compensation. 4.1.6 Hours Spend on Caregiving The epidemic is taking an enormous toll on the country’s economy and health services. Life expectancy declined to 42 years in 2001, from over 50 year in 1997. Furthermore, recent studies suggest that AIDS patients occupy up to 50 percent of hospital beds and experience multiple severe illnesses, requiring increasing days care with the majority of care happening at the community/ family. Table 6 below summarises the number of times in a month that caregivers see home based care clients. Table 5: Number of times Caregivers see CHBC clients Measure Number of times per month Minimum 1 Maximum 30 Average 6 A wide variation exists in terms of the reported number of days/hours volunteered by the secondary caregivers. The number of days per week volunteers work depend entirely on the condition/state of the CHBC client and the distance to the client. On average caregivers visit CHBC clients six times a month and each visit takes an average of 45 minutes. This means that on average, caregivers spend 4.5 hours on caregiving per month on client. Whilst this number of hours is acceptable due to the number of clients and distances each care giver is likely to cover, in the absence of support at the family level, this greatly compromises the quality of care. In addition, 75% of the time was devoted to travel and 25% to clients. Almost no time is spent by volunteers training family carers who provide continuous care. The quality of the care provided to clients would improve tremendously were more time set aside to train family care givers to do the bulk of the caregiving. This would also enable the care givers to significantly scale up the coverage of the programme in their catchment areas. The implication of the HBC programme design will be to devise strategies that increase quality for the improvement of a clients’ health. This may mean reducing the number of clients per caregiver and enhancing the skills of the primary caregiver. Therefore, it is importnat to enhance and promote caregiver strategies that improve the quality of services at client level. 4.1.7 Understanding of roles of Caregivers Most secondary caregivers in the six constituencies studied are unemployed (77.5%). On averaged, many of the volunteers have been in service for about three years. Secondary caregivers do so for various reasons such as to assist the community, help others in difficult situations, volunteer out of compassion, want to take care of OVCs and also that some of them have a relative with the same problem hence the need to help others. Others felt that, they might need the same help at some point in their lives as this has become everyone’s problem. Furthermore, the study shows that if secondary caregivers had a family member with HIV and AIDS they would definitely recommend him/her to a CHBC programme, showing appreciation and acceptance offered by CHBC services. Worrisome is the consistent response in all the constituencies of caregivers who actually indicated that they became volunteers because they did not have anything else to do. Although this is an inevitable truth, it is worth investing in the training of these volunteers to ultimately enable them to regard their role of caregiving as pivotal to enhance the well-being of their societies. Hence, the need to develop comprehensive information strategies in order to enhance the understanding around issues of care. Primarily, strategies that include counselling for primary caregivers is important to reduce this risk. 4.1.8 Volunteerism Secondary Caregivers were asked to describe what volunteerism means to determine their understanding of Volunteerism in the context of CHBC programmmes. The sixth edition of the Oxford Dictionary describes a volunteer as a person who does a job without being paid for it, a person who offers to do something without being forced to do it. Informants from CHBC volunteer describe a volunteer as someone who is mature, merciful, loving and committed to look after orphans, the sick and their children without being paid. The volunteers further presented the characteristics of a volunteer as someone who is; dedicated, patient, soft hearted, sociable, mature and can read and write. The study revealed that in general women are more likely than any other group within the community to volunteer their services. The catergory of female volunteers includes young women, single and widowed women, and a few men who are not employed. The types of volunteer groups that exist in the Kunene communiies were said to be churches, political groups, local leaders, village community leaders, peer educators and teachers. These volunteer groups were chosen by villagers or the community. 11 4.2 Clients Table 6: Number of clients interviewed Constituency Male Female Outjo 0 3 Opuwo 1 6 Khorixas 1 8 Sesfontein 0 0 Kamanjab 3 5 Epupa 1 2 TOTAL 6 24 The data clearly corraborates earlier statements of the disproportionate burden of HIV/AIDS on women and that risk and vulnerability to HIV/AIDS are substantially different for men and women as is most evident in the marked age and sex differentiated HIV prevalence rates in the country. Women are also more willing to come forward and seek HBC services than their male counterparts. 4.2.1 Educational background of clients The highest level of education for the majority of clients is primary school with less than 30% reaching high school. Seventeen percent of the clients have never gone to school. The implication of the Kunene programme is to develop strategies for educating clients about disease management and control at the client level. This will empower clients to manage their own illness since the greatest challenge faced by clients is lack of and access to appropriate information. 4.2.2 Age of clients The average age of a client is 40 years, compared to the average of caregivers which is 27 years, meaning that an increasing number of older clients are cared for by younger caregivers. The findings also show that the youngest age of the CHBC client is 2 years. Namibian Estimates put the number of children under 18 yeras living with the virus at 10% showing more children are surviving beyond the 3years old stipulated age of an HIV infected child. Although Namibia is doing well compared to its neighbours, a lot still needs to be done to enable children to access ART. Proper care for children is still limited and the numbers of children on treatment is minimal due to; . Lack of convenient paediatric formulations for ARVs; . Lack of skills for counselling children with HIV and AIDS; and . Lack of adequate skills to provide ART services by Health workers. The implications for the programme design is how to meet the needs of these youngest clients with appropriate information and reassurance for the children to cope with their illness. Therefore, there is need for the programme design to develop strategies that will cater for the needs of both older and youngest clients of CHBC programmes. Secondly, strategies will need to improve the skills of younger caregivers, who lack the skills and the protection of cross infection during caring and lastly training for both primary and secondary caregivers will need to take cognizant of the age groups. 4.2.3 Gender and marital status of clients Caring for the sick has traditionally been the responsibility of women, due to their low social and economic status in the region. Generally in the Kunene region, men are expected to be breadwinners and therefore should highly prioritize incomepaying jobs instead of voluntary work. Therefore, the role of caring for the sick has been viewed as the responsibility of women, including the girl child and as the table below illustrates, the burden of care falls on women. Table 7: Marital status of clients Constituency Married Unmarried Widow TOTAL Male Female Male Female Male Female Outjo 0 0 0 3 0 0 3 Opuwo 0 0 1 5 0 1 7 Khorixas 0 0 1 8 0 0 9 Sesfontein 0 0 0 0 0 0 0 Kamanjab 1 0 1 6 0 0 8 Epupa 1 1 1 0 0 0 3 TOTAL 2 1 4 22 0 1 30 The study included the relationship between CHBC clients and their caregivers and also marital status. The major reason for this inclusion was to determine who is taking care of the client. In all countries implementing home based care services, families have always been, and remain the major providers of long term care. This is true for the care of both the elderly and people with chronic illnesses due to AIDS related illnessnes such as TB. However, it is increasingly recognised that families cannot continue to increasingly shoulder such heavy burdens alone. As shown on the above table, most community home based care clients are young women who are not married. The burden of care giving is borne primarily by women, who generally have very little access to, or in control of the resources needed to assume this responsibility. Thus, while the need for home care is growing, there is a very real and increasing danger that families who have neither the means nor the knowledge required for such an important task will be left to their own devices to shoulder care giving responsibilities. The implication for the Kunene CHBC programme is to device strategies that are supportive to reduce the burden of care at the family level, especially on women. Due to economic factors, family resources to provide quality care are reducing, hence the need to develop support mechanisms which take cognisance that families still provide the majority of care for the terminally and chronically ill. 4.2.4 PLWHAs among those on Home Based Care Very little is documented on how PLWHAs are actively contributing to CHBC programmes rather than just as receipients of services, even though it is well known that many of caregivers themselves are HIV positive or have nursed a spouse or relative with AIDS related illnesses. UNAIDS has documented1 the merits of meanifully involving PLWHAs in all HIV and AIDS programmes firstly to reduce stigma and discrimination and secondly to tap on their vast experiences. Greater and meaningful involvement of PLWHAs is of paramount importance to the success of CHBC programmes like the one being embarked upon by partners in the Kunene region, especially as the majority of CHBC programmes are geared towards PLWHAs. The survey shows that PLWHAs constitute the majority (86%) of those clients receiving CHBC services and 14% of the clients do not know their status. On the other hand, only a small fraction of the CHBC caregivers knew thier status. However, though it was not the objective of this study to find out if any of the care givers are PLWHAs, it is hoped the programme design will incorporate the involvement of PLWHAs as caregivers, due to their vast experience, resilience and coping mechanisms as role models. Involving PLWHAs makes strategic sense, empowers PLWHAs, reduces stigma and discrimination and raises self esteem. Some of the CHBC clients felt powerless to play their role in decision making processess in the family due to their status. Development of strategies that include and involve PLWHAs and the chronically ill in decsion making processes is crucial to ensuring sustainability of the programme. It has been documented that those receiving CHBC services identify with others like them. The establishment of post test support clubs and groups of people living openly with the disease, in the communities to provide an entry point to CHBC service is key. This will increase the meaningful involvement of PLWAs (MIPA) in MdM’s programmes thus increasing its learning agenda around assisting initiatives that involve infected persons. 4.2.5 Dependants of Clients Namibia has been at the forefront of promoting family planning, but this has been a challegge in some regions, like the Kunene as the results from the study indicate CHBC clients do have a sizeable number of children who require care when a parent is ill or the other parent is deceased. When a parent falls ill, the needs of children are likely to suffer as resources are diverted to taking care of that ill parent, especially if it is the bread winner. The study results reveal that, the CHBC clients have had an average of 5 children or dependants. These children according to the Government of Namibia’s National Action Plan on Orphans are classified as living in difficult circumstances and will require care and support. 1 From Principle to Practice: Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA): UNAIDS Best Practice Collection (2004) 14 There is no doubt that HIV and AIDS is having a devastating impact on children with more than 14 million having lost one or both parents in East and Southern Africa. In Namibia, the increasing death rates as a result of HIV/AIDS have left in their wake a growing number of orphaned children currently estimated at 162,000 children in need of care and support. It is estimated that in a single year, some 800,000 infants are infected with HIV (600,000 through mother-to-child transmission), and some 580,000 children have died of AIDS (East and Southern Africa). If the 1980s was the decade of HIV infection and the 1990s was the decade of AIDS, the 2000s are an era of orphan-hood in the East and Southern Africa regions. The declining HIV prevalence rates in Namibia are not indicative of a declining orphan population. In fact the orphan population is estimated at 162,175 by 2006/7 up from 131,130 in 2004/5. CHBC are viewed as a significant entry point for identifying and supporting vulnerable children before the death of their parents. However, various studies have shown that despite the efforts being done by CHBC caregivers at the client level, the needs of children are very rarely met and most interventions only start after the parent has died. The results from the study show that the children’s needs of CHBC clients are met by a small number of secondary caregivers, leaving both the sick parent anxious of what is going to happen to their children. CHBC Secondary Caregivers are not meeting the needs of CHBC clients’ children as they are not trained in OVCs but trained mainly to meet the needs of the client. However, the study results show that the Secondary Caregivers are cognizant that i) they are not meeting the children’s needs; ii) the clients worry about the children and iii) the care givers are not sure how to support the children. The study results concluded that clients want the following children’s needs addressed; school fees, food, uniforms, stationery and clothes and most importantly psycho-social support. The implication of the Kunene CHBC programme is the need to develop strategies to integrate OVC care into the CHBC programme. It is therefore recommended that MdM assist partners to: . Develop strategies for OVC integration into CHBC programme; . Train CHBC Care givers (both primary and secondary) on how to cope and meet the needs of children during parental illness, such as psychosocial support, bereavement trainings and other trainings that will enhance care and support for CHBC clients children; . Develop and implement referal systems of support for CHBC clients children and train the caregivers of those referals; . Ensure follow up mechanisms to make sure referal systems are in place and followed up to lessen the burden on secondary caregivers as currently they feel it is their duty to meet those needs; . Assist the primary caregivers to fully understand the role and limitations of the secondary caregivers especially in providing material support. 4.2.6 Coverage of CHBC services Graph 1: Clients requiring CHBC service 0 20 40 60 80 100 120 % Outjo Opuwo Khorixas Sesfontein Kamanjab Epupa Requiring Care Receiving Care A total of 162 clients are enrolled in the CHBC programme in the Kunene region, of which 160 are with the NRCS programme and only two with ELCAP. Obviously, the existing responses in the region have limited coverage, that is, few people needing CHBC services, actually receive it. The total enrollment of 162 represents only 41% of the estimated numbers of people requiring care in the region. Moreover, attention should be provided to the Sesfontein constituency where no client receives support. 4.2.7 Availability of HBC kits for use by care givers While caregivers are willing to volunteer, the lack of and late replenishment of CHBC kits hampers their work to improvement of services. This is a worry to caregivers who feel they are not meeting the adequate care needs of their clients, especially those who are bed-ridden. It is also important that partners agree to a standard CHBC kit using MoHSS guidelines. Discussions around home remedies must be openned and caregivers advised appropriately. The proposed CHBC coordinating committee could add value to the programme by initiating a review of which medicinal plants are used by different groups in the region as home remedies for specific symptoms. The committee could start discussions with the MoHSS on pharmacological effectiveness testing of some of these plants. The results can be used to advise CHBC givers and could ultimately form part of the kits. This may enhance sustainability of the HBC programme. 4.2.8 Skills of care givers to monitor CHBC services Monitoring and evaluation systems that produce limited data to inform programming in the region is weak. The NRCS is the only service provider with some sort of a monitoring system, where caregivers are expected to provide periodic reports, which are linked to the monthly allowance of the facilitators and supervisors. While this is commendable, it is noted that lack of transport, distance to be traveled and weak supervision of secondary caregivers render the system ineffective. In addition, these reports are collected merely as a mandatory exercise and requirement from donors other than to advice programme intervention at the local level. We have not found any evidence of an explicit monitoring system with the other major players in the region. Therefore, the coordinating mechanisms, as described below, become crucial to develop monitoring tools for all CHBC activities to enable it to effectively evaluate the impact of the programme at the regional level. 4.3 Coordination and networking Another objective of the study was to determine the extent to which CHBC implementing partners’ activities are coordinatred. Namibia is increasingly identified as a ‘success’ in terms of its national response to HIV/AIDS. Explicit political commitment from government, understanding of the multi-sectoral dimensions of the epidemic, attention to issues of discrimination, and work at the community level, are all cited as important ingredients of this success. In short, critical elements of an enabling environment exist in this country. The potential of a well-coordinated response to form a critical part of local, national and regional responses to the epidemic was recognized as early as during the development of the First Medium Plan on HIV/AIDS (MTPI), in part because sustained and effective multi-sectoral responses to HIV/AIDS depend just as much on personal and society-wide commitment as on interventions that external observers may view as necessary. Therefore, providing an enabling environment became a key area in the fight against HIV/AIDS with a broad range (both thematic and geographic) partners. CHBC programmes in the Kunene region are still fragmented and coordination is weak. This might contribute to duplication and competition among CHBC providers, as well as weak CHBC programming, largely due to poor networking and information systems. The study revealed that no formal structure exists, other than a recently established committee, consisting of members of the NRCS, MoHSS and ELCAP with the support of MdM. The committee is not yet effective but it is envisaged that its main role would be to oversee the activities conducted by the various partners, because of the realization that this could not possibly function effectively within such a loosely defined structure. It is of critical importance that this committee be properly instituted as a body that will manage and administer CHBC activities in the region, with well defined terms of reference, membership, and responsibilities to provide the required leadership and authority and to strengthen the management of the activities up to the local level. The implementing partners will need to be made responsible and accountable for achieving the results to which they commit themselves. The committee would also strengthen mechanisms for continuous learning through performance monitoring and reporting (PMR). Because of its role as the coordinator of civil society and government activities at the regional level, it is imperative that the committee be endorsed by The Regional AIDS Co-ordinating Committee (RACOC), most preferably as a subcommittee within RACOC, and through the same mechanisms filter down to the Districts AIDS Co-ordinating Committees (DACOCs). Furthermore, areas that need further strengthening and development include: securing more direct participation by PLWHAs, greater investment in the capacity of partner members to participate in working towards the overall objectives, participatory development of a focused agenda and a more effective managed structure at the constituency level. Constituency level coordination mechanisms, such as DACOCs need strengthening to provide support and linkages to other health services and community-based initiatives on palliative care. Another dimension to the strengthening of coordination is community involvement, were communities could be empowered to take ownership of the concept of volunteerism through mobilising the community by making use of local leaders and other gate keepers, the establishment of IGPs, and encouraging a unity of purpose. Efforts must be made to provide communities with more workshops on volunteerism so that the concept is further enhanced. 18 5. Conclusion and Recommendations The study reveals that, the bulk of clients on community home based care face numerous challenges which include; lack of food, nursing care, medical care and financial advisement; Very few clients face challenges such as lack of legal assistance, gloves and infection controls, dressing/bandages and condoms. What is of paramount importance is that nutrition should be the back bone of a CHBC client. For PLWHAs good nutrition is significant to improve their health, quality of life and leads to their recovery. When good nutrition is absent, their decline in health is inevitable, as access to food in the era of treatment is of utmost importance. Although the study did not go into details of meals per day of clients, it is crucial to note that access and ability for continued food generation will be paramount to clients prolonged good health. Both clients and caregivers in the study cited food as a challenge. Therefore, we recommend the following to be done: . Develop strategies to incooperate nutritional support in CHBC programme; . Establishing or reviving nutritional gardens for access to food generation; . Enhance the capacity of primary, secondary caregivers and their clients and clients families to establish and run IGPs; . Consistent provision of Kits to Caregivers to enhance their services to CHBC clients; . Distribute food and strengthen referal support for food packs. Major challenges facing CHBC caregivers when offering services to their clients are numerous and relates to lack of resources to meet the needs of the clients and their children, knowledge on writing wills and infection control and balanced food for the client. These challenges also represent the priority areas for CHBC primary care givers. In addition, the appropriate training of caregivers and the provision and replenishment of CHBC kits are two critical elements to the improvement of services offered by CHBC caregivers. The absence of kits is a worry to caregivers who feel they are not meeting the adequate care needs of their clients. Caregivers feel they require information and more training to assist them to meet these needs. Developing appropriate strategies and responses to enhance CHBC is critical to any efforts by MdM to prevent HIV transmission, improve care and support for PLWHAs and their families, and mitigate the negative impacts of HIV and AIDS pandemic in the Kunene. MdM’s main comparative advantage is being currently grounded in the community, has built relations with the community leadership and the community in general, thus in this respect MdM’s visibility in the community is readily felt. There are critical factors—all interconnected—that place CHBC services at the core of improving the quality of care offered which must be addressed by MdM and it’s CHBC implementing partners in the 6 constituencies systematically if the CHBC programme is to achieve its objectives. These are: . The impact of HIV and AIDS differs markedly along gender lines in regards to the provision of CHBC services, reflecting men and women’s different roles and responsibilities in the household and marked activities- this has implications for care, support and programmes. The strategies to be 19 employed need to take into consideration women’s contribution to CHBC, but not forgetting the need to include male involvement to lessen the burden of care especially on women and children; . The need to employ a community based CHBC programme that focuses on community commitment to care and male involvement and responsibility. This intervention needs to address in a robust manner issues such as appropriate training, information re-packaging and dissemination, addressing denial and stigma among CHBC clients, gender inequality in CHBC programmes, directly involve people living with HIV and AIDS, in order to achieve the CHBC objectives to improve the quality of care for CHBC clients; . The need to develop strategies that address disease progression, stigma and discrimination and openness. This is possible if the programme intensifies the use of PLWHAs as agents of openness with a disease that still carries a lot of stigma; . Evidence shows that projects are more likely to succeed if they are closely linked to the services they promote, services are available and participants can access the services that are promoted. This represents a challenge for the CHBC programme, which has limited resources in terms of the provision of CHBC kits, funds to expand IGPs standardized trainings for both primary and secondary caregivers, limited incentives for volunteers to access services being provided (school fees for their children, food packs, blankets etc), ARV treatment and facilities for testing and counseling. There is a need to strengthen the strategic partnerships with government, development partners and other health service providers to develop specialized services such as advocating to access to treatment, counseling and testing, food packs, appropriate training for primary and secondary caregivers and provision of CHBC kits. This could greatly enhance and improve the quality of services provided by the CHBC programme and impact positively at the client level; . Family caregivers are the most important human resource in CHBC. They usually provide the greater part of all care, yet the majority of them lack training in basic health care. Far too often as noted in the study their ability to provide for their own personal, social and financial needs is seriously compromised by their care giving roles. The CHBC programme must develop strategies that empower and are supportive at the family level, but also ensure this support comes from the community to enhance the supply, quality, and sustainability of care which is essential to the CHBC programme. . A multifaceted coordinating mechanism must be set up where issues of coordination, standardization of training and incentives, selection processes and criteria of volunteers, HBC kits and replenishment, etc. are discussed and agreed upon. This becomes the foundation for a successful approach to community engagement. Due to the vastness of the region, this will inevitably follow an approach where sub-committees are established in al or a few of the constituencies. FOCUS GROUP DISCUSSION CAREGIVERS Final Name of Facilitator: Name of Note-taker: Name of Assistant/Other: Name of Community: Name of Committee: Number of Participants: # Male: # Female: Start time: Finish time: Total Time: Note-taker self-check (Print name): Facilitator check (Print name): Other check (Print name): 1. Region: _______________________ 2. Date: _________________________ 3. Level of Cooperation: ____ High ____ Medium ____ Low Greeting First (Introducing yourself) My name is ______________________________, and I am carrying out a survey for Medicos del Mundo with the aim to assessing community HBC provided by the various stakeholders in the Kunene Region. The purpose of the survey is to uncover the different approaches used in the deliverance of HBC, to enable MdM to come up with a unified approach in assisting the regional response to HIV/AIDS. The information you will provide will be kept confidential and will be used only for the above purpose. Your co-operation in this regard will be highly appreciated. A DEMOGRAPHIC INFORMATION 4). Tell us a bit about yourselves, including the following; first name, highest education level, length of stay in the community, employment status, your position in this committee, number of children you are caring for and whether you are the head of the household you are currently living in. CARE AND SUPPORT 5). What is your understanding of a caregiver? [Probe for characteristics of a caregivers, at home level, community level, etc.] 6). In your community, who are more likely to volunteer to care and support for the ill? [Probe for characteristics of a person who would most likely become a caregiver e.g. age, sex, employment status, status in community etc.] 7). What type of caregivers exist in your community and broader area? [Probe for the different groups such as ELCAP, RED CROSS, MoHSS etc.] a) How were these caregiversvolunteers identified/selected? b) What the roles and responsibilities of these caregivers? c) On average, how much time (hours) do these caregivers devote to volunteer work per day? d) On average, how many days do these caregivers work per week? e) Please describe the geographical coverage of these caregivers? [Probe for specific names of the villages/communities served, distance covered, means of transportation, etc.] f) Who are these caregivers? [Probe for characteristics of the caregivers; e.g. gender, age, employment status, etc.] g) How long did these caregivers serve the community(s)? h) How long will these caregivers be serving the community(s)? i) How were these caregivers established? [Probe to determine whether it was a community initiative or an outside initiative] 8). In your opinion what motivates people to provide caregiving in any community? What do you/they enjoy about being a caregiver? 9). In your view, what are the challenges of being a caregiver? [Probe for examples of specific challenges faced.] TRAINING 10). Have you received any training? a) [If training was provided] What type of training did you receive? [Probe for duration and type of training]. 11). Do you feel the training was adequate? [Probe for how this is monitored and evaluated]. B a) Do you think you have the skills and experience to be providing the services you do? [Probe for an explanation]. 12). [Ask this question even if the volunteer received any training to establish whether additional training is needed, if any] What type of training (or additional training) do you need? Please describe in detail. INCENTIVES 13). How are you rewarded for the services you deliver? [Probe for any other type of rewards and not only rewards in the form of money and materials]. 14). Are you aware of volunteers doing similar work in other communities or regions who are provided with incentives? [Probe for the type of incentives they receive] CARE AND SUPPORT 15) In total how many patients do you provide support to? (probe for each participant in the FG and get a sense of the age and sex differences) 16) What material support do you receive from your organisation? SUSTAINABILITY 17). In your view is the concept of outside organisations giving volunteer incentives sustainable, once funding comes to an end, please elaborate. 18) (In the case where they receive incentives) If you were not receiving incentives, would you still care for your patients? CLOSURE 19) Do you have any other closing comments? Thank you very much for your time and cooperation Local Level Key Informant Interview Guide Caregivers Final 1. Region: _______________________ 2. Date: _________________________ 3. Community:________________________ 4. Organisation affiliated to:___________________________ Greetings My name is ______________________________, and I am carrying out a survey for Medicos del Mundo with the aim to assessing community HBC provided by the various stakeholders in the Kunene Region. The purpose of the survey is to uncover the different approaches used in the deliverance of HBC, to enable MdM to come up with a unified approach in assisting the regional response to HIV/AIDS. The information you will provide will be kept confidential and will be used only for the above purpose. Your co-operation in this regard will be highly appreciated. D E A. DEMOGRAPHIC INFORMATION Q 4). Sex of caregiver (do not ask; check the right box) . 1 Male . 2 Female 5). How old are you? Age___________________ 6). Are you currently attending school? . 1 Yes . 2 No 7). What is your highest education level? . 1 None / pre-primary . 2 Primary (Gr. 1-7) . 3 J. Secondary (Gr. 8-10) . 4 S. Secondary (Gr.11-12) . 5 Tertiary (Univ. and Techni) . # Others _____________ 8). What is your marital status? . 1 Married . 2 Divorced . 3 Single . 4 Cohabiting . 5 Not living with partner/ spouse 9). How many dependants do you have? . 1 One . 3 Three . 5 Five and more . 2 Two . 4 Four 10) Does your spouse/partner has any source of income? . 1 Yes . 2 No 11) How long have you been a caregiver? Years ______________________________ Months ____________________________ 12) On average, how much time (hours) do you devote to caregiving per day? . 1 One . 2 two . 3 three . 4 four . 5 five . 6 six or more 13) On average, how many days do you devote to caregiving per week? . 1 One . 2 two . 3 three . 4 four . 5 five or more 14) Before you joined this organisation (say name), did you work for any other organisation? . 1 Yes . 2 No 15) Why did you leave the last organisation/project you volunteered for? CARE AND SUPPORT 16. Do you have protective clothing? __Yes __No __Inadequate If inadequate, please explain…………………………………………………………………………. 17. Is soap and antiseptic always available? __Yes __No __Occasionally 18. What hygiene procedures are followed after the patient dies? ……………………………………………………………………………………………… ……………………………………………………………………………………………… ……………………………………………………………………………………………… 18.1 Is this adequate Inadequate __Yes __No 19. Is there a procedure manual to guide terminal care of patient living with AIDS? __Yes __No 20. If yes, is the manual followed when doing terminal care? __Yes __No Notes: ………………………………………………………………………………………………….. 21. How do you dispose of patient’s secretions and dressings? ………………………………………………………………………………………………… 21.1 Is this adequate Inadequate __Yes __No 22. In total how many patients do you provide support to? (Probe for each participant in the FG and get a sense of the age and sex difference) ……………………………………………………………………………………………… 23. What material support do you receive from your organization? (Probe for HBC kits, etc) ………………………………………………………………………………………………… PHYSICAL, SPIRITUAL, AND PSYCHOSOCIAL CARE 24. Do you conduct a complete physical assessment on admission? __Yes __No __Don’t know 25. Is symptomatic treatment given to patient? __Yes __No 26. What do you do if the psychosocial needs of the patient are beyond the your capability? F ………………………………………………………………………………………………… 27. Is patient’s dignity and self-esteem recognized? __Yes __No __Not Applicable 28. If yes, is patient’s opinion requested when (tick block if yes) __Preparing the menu? __Calling the pastor? __Visitors arrive, before taken to bedroom? __Referrals are necessary? 29. Is patient’s privacy maintained whenever necessary? __Yes __No __Not Applicable 30. Is patient informed of every procedure carried out on her/himself? __Yes __No TRAINING 31. Have you received any relevant training? __Yes __No 1.1 (If training was provided) What type of training did you receive? (Probe for duration and type of training). ……………………………………………………………………………………………… 32. Do you feel the training was adequate? (Probe for how this is monitored and evaluated) __Yes __No 33. Do you think you have the skills and experience to be providing the services you do? (Probe for an explanation) __Yes __No 34. (Ask this question even if the volunteer received any training to establish whether additional training is needed, if any) What type of training (or additional training) do you need? Please describe in detail. ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 35. Before you joined this organization, did you work for any other organization as a caregiver? G __Yes __No 36. Why did you leave the previous organization you were working for? ………………………………………………………………………………………………… INCENTIVES 37. How are you rewarded for the services you deliver? __Yes __No (Probe for any other type of rewards and not only rewards in the form of money and materials). ……………………………………………………………………………………………… ……………………………………………………………………………………………… 38. Are you aware of volunteers doing similar work in other communities or regions who are provided with incentives? __Yes __No (Probe for the type of incentives they receive). ……………………………………………………………………………………………… …….......................................................................................................................................................... NETWORKING 39. How and where do you refer clients who need other or more specialised services? ……………………………………………………………………………………………… …….......................................................................................................................................................... 40. How often do you meet with other HBC givers from other organisation and service providers in you community? __a) Often __b) Not so often c) Never (Please provide details) …………………………………………………………………………………………… …….......................................................................................................................................................... 41. Do you attend CACOC meetings and activities or does your organisation have a representative who attends? 42. How often do you meet with the nurse at the health facility for HBC purposes? H __a) Often __b) Not so often c) Never (Please provide details) ……………………………………………………………………………………………… …….......................................................................................................................................................... CLOSURE 43. Do you have any other closing comments? ……………………………………………………………………………………………… Thank you very much for your time and cooperation Local Level Key Informant Interview Coordinators FINAL 1. Region: _______________________ 2. Date: _________________________ 3. Level of Cooperation: ____ High ____ Medium ____ Low Greetings My name is ______________________________, and I am carrying out a survey for Medicos del Mundo with the aim to assessing community HBC provided by the various stakeholders in the Kunene Region. The purpose of the survey is to uncover the different approaches used in the deliverance of HBC, to enable MdM to come up with a unified approach in assisting the regional response to HIV/AIDS. The information you will provide will be kept confidential and will be used only for the above purpose. Your co-operation in this regard will be highly appreciated. J BACKGROUND INFORMATION 1. When did the HBC programme start? ………………………………………………………………………………………………… 2. What services do you provide? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 3. Where does it operate? ………………………………………………………………………………………………… ………………………………………………………………………………………………… 4. Is it part of another organization? ………………………………………………………………………………………………… 5. What organizations does it link to in the area? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 6. What categories of staff / volunteers are there and how many people are involved in each function? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 7. Where do you get your funding from? K ……………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 8. Do you have any means of generating funds for yourself? If yes, motivate. ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 9. What is the management structure? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ……………………………………………………………………………………………… ………………………………………………………………………………………………… 10. Who do the management account to? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 11. Is there a Board or a community or stakeholder committee? If so, provide a list of names and the affiliations of the organization they represent. ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… OVERALL APPRAISAL OF CARE 12. What is your overall appraisal of the quality of care provided by the HBC organization? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 13. What are the strengths of its quality of care? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 14. What are the weakness of the Care domain? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 15. What has been done to strengthen identified weakness? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 16. What are the priority areas for improvement within quality of care? M ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 17. What mechanisms of monitoring and evaluation (if any) do you have in place? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… OVERALL APPRAISAL OF MANAGEMENT 18. What is your overall appraisal of the management of the HBC organization? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 19. What are the strengths of its management? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 20. What are the weakness in its management? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… N ………………………………………………………………………………………………… 21. What are the priority areas for improvement in management? ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… ………………………………………………………………………………………………… 17. Do you have any capacity building system in place? If yes, how often do you undergo training, who does the training and what is your assessment of the quality of training you have received? ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… ………………………………. LINKAGES WITH OTHER PROVIDERS 22. What are the linkages with other service providers? ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… 23. How often do you have stakeholder workshop to determine? If ever, what do you discuss and the outcomes of such discussions. ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… 24. Is there a consistency of activity implementation of the various service providers? Do you meet to evaluate each others work, and how often? ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… 25. Are the areas of implementation well demarcated? How well? O ……………………………………………………………………………………………………… ……………………………………………………………………………………………………… CLOSURE 26. Do you have any other closing comments? ……………………………………………………………………………………………… Thank you very much for your time and cooperation. P Local Level Key Informant Interview Guide Patients FINAL 1. Region: _______________________ 2. Date: _________________________ 3. Level of Cooperation: ____ High ____ Medium ____ Low 4. Support organisation:____________________________________________________ Greetings My name is ______________________________, and I am carrying out a survey for Medicos del Mundo with the aim to assessing community HBC provided by the various stakeholders in the Kunene Region. The purpose of the survey is to uncover the different approaches used in the deliverance of HBC, to enable MdM to come up with a unified approach in assisting the regional response to HIV/AIDS. The information you will provide will be kept confidential and will be used only for the above purpose. Your co-operation in this regard will be highly appreciated. Q A. DEMOGRAPHIC INFORMATION 18. Patient’s Occupation ………………………………………………………. 19. Patient’s sex ………………………………………………………. 20. How old are you? ………………………………………………………. 21. Are you currently attending school? __a) Yes __b) No 22. What is your highest Education Level? __a) None / pre-primary __b) Primary (Gr.1-7) __c) Jr. Secondary (Gr. 8-10) __d) Sr. Secondary (Gr.11-12) __e) Tertiary (Univ. and Technicon) __f) Other ______________________ 23. What is your marital Status? __a) Married __b) Divorced __c) Single __d) Cohabiting __e) Not living with partner/spouse 24. How many dependents do you have? __a) One __b) Two __c) Three __d) Four __e) Five and More 25. Condition and mobility of patient __a) Critically ill (terminal, unconscious or semiconscious) __b) Very ill (bedridden, restricted mobility, talking with strain, assisted with feeding) __c) Ill (mobile, feeds independently, weak, needs minimal support) __d) Not so well (full blown, but completely independent) 26. How long (in months) has the patient been on the home based care program? …………………… Notes: ………………………………………………………………………………………………… ………………………………………………………………………………………………… THE PATIENT’S ENVIRONMENT (Observation) 10 Is the home environment neat and clean? R __a) Yes __b) Fairly __c) No 11. Is bedroom well ventilated? __a) Yes __b) No 12. Any evidence of medical hazards? __a) Yes __b) No If other, explain……………………………………………………………………………………… 13. Are relevant accessories within patient’s reach? E.g. Walking aid, wheel chair, bedpan. __a) Yes __b) No __c) Not applicable, patient mobile 14. Is patient’s privacy protected during relevant nursing procedures? __a) Yes __b) No Notes: ………………………………………………………………………………………………… ………………………………………………………………………………………………… PATIENT’S BASIC NEEDS (Probe who provides these services) 15 Does the patient need to be fed or assisted during a meal? __a) Yes __b) No 16. If yes, is this usually done? __a) Yes __b) No 17. Is there drinking water within reach at patient’s bedside? __a) Yes __b) No 18. If yes, is it usually done? __a) Yes __b) No 19. What does patient normally have for a. Breakfast:……………………………………………………………… b. Lunch:…................................................................................................................. c. Dinner:………………………………………………………………… 20. Would you say that the patient receives a well balanced diet daily? __a) Yes __b) No __c) Other If other, explain……………………………………………………………………………………… S PATIENT’S HYGIENE AND PREVENTION OF INFECTION (probe who provides these services) 21. Is the patient’s bed kept neat and dry? __a) Yes __b) No If yes, is this usual? ………………………………………………………………………………….. If no, please explain…………………………………………………………………………………. 22. Does patient receive a full bed bath daily? __a) Yes __b) No If no, please explain…………………………………………………………………………………. 23. Is mouth and oral care given after every meal? __a) Yes __b) No If no, please explain…………………………………………………………………………………. 24. Is exercise and movement in bed encouraged? __a) Yes __b) No If no, please explain……………………………………………………………………………….. 25. If bed ridden, is care to back and pressure parts given? __a) Yes __b) No __c) Not bedridden 26. Is patient assisted in and out of bed if necessary? __a) Yes __c) No __Not necessary, patient able If no, please explain………………………………………………………………………………….. OTHER SUPPORT MECHANISMS 27. Do you belong to any support groups? __a) Yes __b) No If yes, provide details…………………………………………………………………………………. 28. Do you belong to any other group/club etc.? __a) Yes __b) No 29. Do you receive any food support? T __a) Yes __b) No If yes, provide details…………………………………………………………………………………. 30. Do you receive psychosocial support from caregivers? __a) Yes __b) No If yes, provide details…………………………………………………………………………………. 30a) Are you satisfied with the support? __a) Yes __b) No If no, provide details…………………………………………………………………………………. 31. As a client of HBC services what kind of services would you like to receive that are not being offered now? Please provide details…………………………………………………………………………………. CLOSURE 32. Overall, are you satisfied with the support you receive from caregivers? __a) Yes __b) No If no, provide details…………………………………………………………………………………. 33. Do you have any other closing comments? ……………………………………………………………………………………………………… Thank you very much for your time and cooperation U FOCUS GROUP DISCUSSION PATIENTS Final Name of Facilitator: Name of Note-taker: Name of Assistant/Other: Name of Community: Name of Committee: Number of Participants: # Male: # Female: Start time: Finish time: Total Time: Note-taker self-check (Print name): Facilitator check (Print name): Other check (Print name): 1. Community: _______________________ 2. Date: _________________________ 3. Level of Cooperation: ____ High ____ Medium __ Low Greeting First (Introducing yourself) My name is ______________________________, and I am carrying out a survey for Medicos del Mundo with the aim to assessing community HBC provided by the various stakeholders in the Kunene Region. The purpose of the survey is to uncover the different approaches used in the deliverance of HBC, to enable MdM to come up with a unified approach in assisting the regional response to HIV/AIDS. The information you will provide will be kept confidential and will be used only for the above purpose. Your co-operation in this regard will be highly appreciated. V DEMOGRAPHIC INFORMATION 4). Tell us a bit about yourselves, including the following; highest education level, length of stay in the community, employment status, your position in this committee, number of children you are caring for and whether you are the head of the household you are currently living in. GENERAL INFORMATION 5) Which HBC groups do you belong to? (probe for NRCS, ELCAP, MoHSS) 6) When did you become a member of the HBC group? 7) How did you become a client of the HBC programme? 8). Do you belong to any support groups? 9). Do you belong to any other group/club etc.? 10) Do you have children and how many? (probe for support of their children) 11) How many of you are on the ART programme? CARE AND SUPPORT 12) Please describe in detail the kind of support you receive as a HBC client. (Probe for food and nutritional support, psychological, material etc.) 13) Are you satisfied with the support? 14. As a client of HBC services what kind of services would you like to receive that are not being offered now? CLOSURE 15. Overall, are you satisfied with the support you receive from caregivers? 16. Do you have any other closing comments? W Fieldwork Plan DATE AND CONSTITUE NCY TIME ACTIVITY VENUE 28 January, Sunday Arrival at Opuwo 29 January, Monday 08:00 -Dr. Akpabio – Acting Director MOHSS- Opuwo OPUWO 08:30-09:00 -HBC Regional Committee Hospital 09:30-11:30 -MOHSS: -Ms. Mbaumba-HBC Regional Coordinator -Ms. Karutjaiva-Primary Health Care Supervisor (Opuwo Health District) -Mr. Tjituri-Regional Social Worker 12:00 – 13:00 -Red Cross: Ms. Mutambo-Regional Head and HBC responsible person for Opuwo Lunch break 14:00-15:00 -Red Cross Supervisors 15:15-17:00 -Focus Group-HBC clients 30 January, Tuesday Travel to Okangwati at 08:00 ( 1 hour and a half) Constituency Office09: 30 – -Focus Group-HBC givers (from MOHSS) Okangwati EPUPAOKANGWAT 10:30 -Focus Group-HBC clients (from MOHSS) I 10:30 – 12:00 Travel back to Opuwo -Opuwo: Focus Group-HBC givers Opuwo Hospital 15:00-17:00 31 January, Wednesday Travel to Sesfontein at 07:00 ( 3 hours) TBC 10:00 – -ELCAP: Pastor Tjakuapi-Regional Head and HBC responsible SESFONTEIN 11:00 person for Opuwo and Sesfontein -Focus Group-HBC givers (from ELCAP) 11:00-13:00 Lunch break -Focus Group-HBC clients (from ELCAP) 14:00-16:00 Travel to Khorixas (3 hours and a half) 1 February, 08:00 – -Red Cross: Mr. Boois-HBC Coordinator for Khorixas Red Cross Thursday 08:45 -Red Cross: HBC Supervisors (2 persons) KHORIXAS 09:00 – X 09:45 -Red Cross: HBC facilitators (5 persons) 10:00 – -Red Cross: Focus group -HBC clients (10 persons) 10:45 Lunch break 11:00 – 13:00 -Red Cross: Focus group-HBC clients (10 persons) Travel to Kamanjab (1 hour and a half) 14:00-16:00 2 February, Kamanjab Kamanjab Friday KAMANJAB 08:00-08:30 -MOHSS: HBC Supervisor-Clinic nurse clinic AND OUTJO 08:30-10:30 -Focus Group-HBC clients 10:45-12:30 -Focus group-HBC givers Travel to Outjo (1 hour and a half) 14:30-15:30 -MOHSS: HBC Supervisor-Sister Aibes and Community Counsellor- Ms. Tekla Outjo Hospital 15:30-16:30 -ELCAP: HBC Supervisor-Pastor T. Katjiveri 16:30-17:30 -Red Cross: Ms. Jassana – HBC Coordinator for Outjo and Kamanjab 3 February , Saturday 08:00-09:00 -Red Cross: HBC Supervisors TBC- Constituency 09:00 – -Focus Group -HBC clients Office 11:00 -Focus Group-HBC givers 11:00-13:00 Back to Windhoek and Opuwo Feed back from Mιdicos del Mundo of the HBC Survey Report 2007-Kunene Region Here there are some comments that Amaia, Geraldine and me think are important to be introduced in the HBC Survey Report if possible. -More specific and detail introduction about the beginning and situation of the program by partners, as well as the workshops that have been done, when, by who, where. To have a clear idea about what has been done until now. -Introduce some recommendations about how and where start new workshops and if it is better to start training new volunteers or focus on refreshing trainings. Y -Practical recommendations. (Amaia lo ha escrito en su mail pero creo que no se le puede decir asν. Quizαs es despreciar su trabajo…. -Mention that the Red Cross is working together with the Ministry of Health and that is working in different constituencies. -Mention the sustainability of the program related to the role that MdM and other NGOs must play. Maybe mention that an NGO as MdM cannot assume the management functions of a program that must be assumed by the Ministry. -Some strategies and methods to apply the recommendations. Just the most important ones. For example, how to involve men in the HBC. Z