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Home-based Care: A Need Assessment of People Living With HIV Infection in Bandung, Indonesia

Kusman Ibrahim, RN, PhD Hartiah Haroen, RN, MN, MKes Lucas Pinxten, MD, MSc, MPH The increasing number of people living with HIV infection (PLWH) in Indonesia has led to an increased demand for care. Health care facilities are overburdened. Home-based care (HBC) is a valuable strategy to complement existing health care services and to extend the continuum of care for PLWH and their families. This qualitative study explored the care needs of PLWH that might provide baseline data for developing HBC in Bandung, West Java, Indonesia. Data were collected from 12 key and 25 general participants through observations, interviews, and focus group discussions. Findings indicate that HBC is urgently needed for PLWH, particularly for those who need palliative care and those who encounter major barriers to using available health care services. It is recommended that health care providers and policy makers strengthen the role of the family in taking care of PLWH through trainings and knowledge dissemination. (Journal of the Association of Nurses in AIDS Care, 22, 229-237) Copyright 2011 Association of Nurses in AIDS Care Key words: home-based care, Indonesia, need assessment, PLWH 2008). The estimated number of PLWH in Indonesia was 333,200 by the end of year 2009, and if prevention programs do not work effectively, it is predicted there might be 541,700 infected individuals by the end of year 2014 (National AIDS Commission, 2009). Injecting drug users are the largest subgroup of these individuals at 52.4%, followed by transgender people (waria) 24.4%, commercial sex workers 15%, and homosexuals 5.2% (Ministry of Health, 2009b). HIV prevalence rates among provinces and cities vary widely. The Indonesian government has paid attention to some 100 cities, as cities in general have a relatively large number of HIV-infected people. Among the cities in Indonesia, Bandung has the highest reported number of PLWH, documenting a maximum of 1,948 cumulative cases by March 2009 (Ministry of Health, 2009a). The increasing number of PLWH has led to an increased demand for care for this group. It is estimated that 27% of public
Kusman Ibrahim, RN, PhD, is a lecturer, Faculty of Nursing, and Researcher of IMPACT (Integrated Management for Prevention and Control & Treatment of HIV/ AIDS) project, Faculty of Medicine, Padjadjaran University, Bandung, Indonesia. Hartiah Haroen, RN, MN, MKes, is a lecturer, Faculty of Nursing, and Researcher of the IMPACT project, Faculty of Medicine, Padjadjaran University, Bandung. Lucas Pinxten, MD, MSc, MPH, is a faculty member of the Department of Work and Social Psychology, Faculty of Psychology and Neuroscience, Maastricht University, Maastricht, The Netherlands, and currently serves as a member of Management Team, IMPACT Project, Bandung, Indonesia.

HIV remains a major public health problem in many


countries. Indonesia is a developing country that faces the problem of an increasing number of people living with HIV (PLWH) infection since the rst case was identied in 1987. Recently, the country has been noted as having the fastest growing HIV epidemic in Asia (Joint United Nations Programme on HIV/AIDS,

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 22, No. 3, May/June 2011, 229-237 doi:10.1016/j.jana.2010.10.002 Copyright 2011 Association of Nurses in AIDS Care

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hospital beds will be occupied by PLWH in 2025 according to a baseline scenario by the Australian Agency for International Development (2006). Hospitals, such as the provincial top referral hospital located in the city, are already overloaded with patients and visitors. If hospital capacity is not increased or if other care initiatives are not developed, the public health service will fail to supply proper care for PLWH. Home-based care (HBC) is a valuable strategy to deliver health care as well as an instrument to mobilize and strengthen care resources at the family and community levels. Previous studies suggest that HBC effectively reduces the economic and humanresources burdens that are commonly faced by hospitals caring for PLWH (Makoae & Jubber, 2008). HBC can also promote adherence to antiretroviral therapy (ART) in resource-limited settings (Weidle et al., 2006), improve acceptance of and disclosure by PLWH (Ncama, 2007), and enhance quality of life for PLWH (Nickel et al., 1996). Currently, few studies have explored HBC for PLWH in the Indonesian context. Thus, a qualitative study was conducted to assess the need for community HBC for PLWH. The results of this study are expected to lead to the development of a model of community HBC for PLWH in Indonesia.

were selected by the researchers from the Bandung Community, with assistance from nongovernmental organizations (NGOs) working with PLWH. The inclusion criteria for key participants were as follows: (a) at least 17 years of age, (b) diagnosed with HIV infection, (c) living with the family in the same household, (d) able to communicate verbally, and (e) willing to participate in the study. General participants were potentially involved in the provision of HBC. They included family caregivers, health care providers, and community leaders. The number of key and general informants in this study was determined by informational considerations (Lincoln & Guba, 1985). Collection of the data was considered to be saturated when no new information was available. At the end of their involvement, all participants received a nominal reimbursement fee for participation. Study Setting This study was conducted at a community setting at the Bandung Municipality, which is located about 180 km southeast of Jakarta, the capital of Indonesia. Bandung is the fourth most populous city in Indonesia, with greater than 2.5 million inhabitants in an area of 16,730 hectares (64.6 square miles). Most of the population is Muslim and ethnically Sundanese, which is the second largest of ethnic groups in Indonesia after Javanese (Bandung AIDS Control Commission, 2007). Ethical Considerations Ethical approval was given by the Health Research Ethical Committee, Faculty of Medicine, Padjadjaran University (Number 123/FKUP-RSHS/KEPK/Kep./ EC/2008). Permission for data collection from the local authorities was also obtained. The participants were provided with a complete explanation and written description about the objective of the study, the research method, and potential risks and benets of the study. Participants were invited to ask questions and to decline or accept participation in the study; they were informed that they could withdraw from the study at any time. Verbal or written informed consent was offered to each informant before beginning the interview.

Methods and Procedures


Study Design A descriptive qualitative design was used to discover, describe, and systematically analyze the HBC needs of PLWH in Bandung, Indonesia. As reported by Speziale and Carpenter (2007), qualitative research is committed to discovery through the use of multiple ways of understanding. The researchers addressed questions about the HBC needs of PLWH and selected appropriate methods to answer them. The following was the main research question for this study: What are the available health care services for PLWH and what types of care and support are further needed in a community HBC setting? Study Participants A purposive sample of 12 key and 25 general participants was recruited for this study. Participants

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Data Collection and Analysis Data were collected through interviews, group discussions, and observations. Observations were performed during home visits for a period of 6 months (between June and December 2008). Field notes were produced from observations and were recorded on the same day. The rst access to key participants was mediated by the NGO staff who worked with PLWH. The researcher made appointments with participants who agreed to participate in the study, and in-depth interviews were conducted until reaching the stage where no new information emerged while conducting interviews. In other words, sufcient data were acquired by the time the saturation stage was reached. If saturation is not achieved, qualitative results have been reported to be thin, and the reliability and validity of the studies can be questioned (Morse & Field, 1996; Seidman, 1998). Data collection was extended to general participants on the basis of the information from key participants. In the entire study, 12 key informants, eight family caregiver informants, and two community informants were interviewed. Interviews lasted 45 to 90 minutes and were audiotaped. In addition, focus group discussions were conducted with health care providers and community leaders to collect data regarding existing community care practices for PLWH. All data were immediately entered into a secure computer. Interview data were transcribed and carefully checked for accuracy and consistency. Data were then analyzed qualitatively by using content analysis according to a guideline provided by Hancock (1998). First, the researcher read and reread all data to get familiar with the situation. Brief notes were made in the margins for particularly relevant information with research questions. Second, a list of the different types of information was drawn from the margins and carefully reviewed; the list was then categorized on the basis of commonalities and differences. The researcher then made a list of categories and examined the overall categories, linking each item of data and reducing overlapping data in the same category. Third, the categories were organized into major and minor categories. Major categories were referred to as themes and minor categories as sub-themes. Fourth, the overall major and

minor categories were scrutinized to determine t and linked with relevant information from the eld notes or other sources of data. The researcher repeated the same process for each interview transcript. Finally, the researcher collected and summarized all extracted data from interviews and eld notes into one data set, sorted by overall major and minor categories. The researcher then reviewed all categories and items of data to determine a method to t those entities together with regard to major (themes) and minor categories (sub-themes). To strengthen validity and reliability, the data were brought back to selected participants to conrm appropriateness of the ndings.

Findings
Characteristics of Informants Twelve key participants were interviewed and their characteristics were presented using pseudonyms K1 to K12. Their ages ranged from 18 to 39 years (M 5 30; standard deviation 5 6.59). One participant had a permanent job in the private sector, ve were selfemployed, and six were housewives. Eight had completed senior high school, two had completed junior high school, one had a bachelors degree, and one had only nished primary school. Participants had been living with HIV for a period ranging from 6 months to 4 years (M 5 2 years). Of the 12 participants, six had used drugs, ve no longer used drugs, and one continued to inject drugs, although less frequently as compared with previous years. The 25 general participants were referred to by pseudonyms from G1 to G25. They consisted of nine men and 16 women. Their ages ranged from 24 to 70 years (M 5 43; standard deviation 5 12.97). Eight of the 25 were family caregivers, nine were health care providers (nurses, physicians, and HIV counselors), and eight were community leaders (village head man, religious leader, head of subvillage, youth organization, and village health volunteer). The family caregivers had been looking after their HIV-infected family members for .5 to 5 years (M 5 1.5 years). Health care providers had been caring for HIV-infected patients from 1 to 6 years (M 5 1.5 years).

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Current Health Care Services and Support for PLWH Both key and general participants described the current health care services and support available for PLWH, which were categorized into the availability of health care services, health care providers, and community-based care activities, as well as barriers in accessing health care services and community resources. These are described in the following paragraphs. Availability of health care services. All key participants reported that they might use health care facilities that were available in the community for general health services, either offered by the government or by private care groups. However, not all of the health care services offered specic servicesrelated HIV such as voluntary counseling and testing, CD41 T-cell tests, and ART. According to the information obtained from the data collected, three government and two private hospitals in Bandung City offered these services as well as general care. In addition, one private clinic and one community health center offered counseling, testing, and primary care, whereas 12 other health centers offered counseling, primary care, and a needle exchange service. None of the hospital or community health centers formally offered HBC services for PLWH. Although some improvements have been implemented by the government, participants viewed the HIV-related services as insufcient compared with the growing number of PLWH and those who were at risk. One key participant stated: In this sub-district region, there is no health care service providing HIV testing and ART. As a consequence we have to travel to the downtown hospital, which is quite far, and be placed on a long list to get service. Meanwhile, I know there are many people at risk here [who] need to be tested, and some of them are HIV positive and need ART. So, I think the availability of health care service is still insufcient to cover all PLWH and people at risk, particularly those who live far from the downtown. (K7) Health care providers. Most issues about health care providers caring for PLWH were raised by health care provider participants who attended focus group

discussions. The issues included lack of proper training for health care providers, which inuenced levels of knowledge and attitudes in caring for PLWH. In addition, there was disruption in the continuum of care between hospitals and community setting, and limited safety protection when caring for PLWH. In some cases, HIV-infected patients were required to follow-up after hospitalization. Because there was no ofcial in charge to perform this job, the number of patients lost to follow-up at a top provincial HIV clinic in the city was signicant (12%). According to the existing health care system, community health centers should participate in ensuring that all residents, including PLWH, in their working areas have access to health care services. However, health care providers in health centers often nd it difcult to identity PLWH in the community. This is partly because PLWH prefer to hide their HIV diagnoses. However, health care providers in hospitals were also reluctant to disclose their HIVinfected clients to community health care providers because of condentiality issues. The existing referral system, which usually shares care provision between hospital and community health center, does not seem to work well when applied to PLWH. As one health care provider participant said: We are health providers in the community health center, most of the time we do not know about PLWH who need follow-up care in our region unless the hospitals ofcially inform us about it. Perhaps it is because of the issue of condentiality, PLWH like to hide their HIV status to other people, including health care providers in the community health center where they reside. It makes it difcult for us to provide care for those people. (G14) Community-based care activities. Key and general participants identied several communitybased activities available in the community. NGOs working for HIV, self-help groups, residents care for PLWH (Warga Perduli AIDS/WPA), and faithbased organizations (FBOs) might contribute to care for those with AIDS. FBOs are actually a type of NGO that basically operate on the basis of religious missions. In Indonesia, FBO usually has a large number of followers and/or members who are spread out throughout the country. To date, 11 NGOs that

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work with HIV-infected people were recorded at the Bandung AIDS Control Commission (2007). However, only a few of these actively participated in HIV prevention and care. NGOs play an important role in outreach, counseling, and support for PLWH. Most NGOs were funded by foreign donors who supported particular programs within a period of time. A major problem was that there was no guaranty from the donors about sustainability of funding support after the program term was completed. One general participant who is a deputy program manager of an NGO said: We have been working on an outreaching and counseling program since 2004. Based on the job contract with a foreign donor, it has been extended until June 2008. We dont know yet about the continuity of our work after the program is terminated. I noticed that the funding body has considered the outreaching program to be sufcient. It means that our work will be discontinued. This is a big problem for us as we are depending on the foreign donor. (G25) Self-help groups have been established by PLWH to share experiences and empower themselves in dealing with illness-related problems. The groups might be afliated under a particular NGO or operated independently. Resident care for AIDS (WPA) has been in place since 2004, mediated by an NGO and a foreign donor. WPA was ofcially launched by ve villages; however, only one of those was active when this study was conducted. Although Bandung is known as a religious city and many religious-based organizations ourish there, only two FBOs were reported to have shown concern about HIV infection, namely the Fatayat NU (Womens Division of Nahdatul Ulama, the largest Indonesian Muslim organization) and the Catholic Pastoral of Borromeous. Little was known about the involvement of FBOs in HIV prevention and care in the Bandung region. The significant role of community-based care activities for PLWH was acknowledged by family caregiver participants. As one of them expressed: I am very thankful to the NGO that facilitated my daughter to get an HIV test and get access to the health care service. It is very difcult for us, the family, to deal with this situation. We didnt know clearly at the beginning what

was going on with my daughter when her health condition dramatically deteriorated. We also had nancial constraints to take her to hospital. It was fortunate to have assistance from an NGO, so my daughter could get medical treatment, although it was quite late. (G2) Barriers in accessing health care services and community resources. All key participants in this study said that nancial constraints were barriers to accessing health care services related to HIV. Although the services might have been free of charge for ART, they still had to pay for related medical diagnostic tests and also for other drugs. As one key participant said: Although ART is free of charge nowadays, I still need to spend money for transportation, registration, and occasionally for a blood test and for X-rays. To me, not having a x[ed] income, it is a big barrier to visit the clinic. The long queues in the clinic also make me really very tired and bored, that is why Im reluctant to come to the clinic. (K4) For those who lived far away from the hospital, the cost of transportation was also a real problem. Three key participants said that long queues to get service in HIV clinics, particularly those who used government health insurance for the poor (Jamkesmas/Askeskin), had hampered their willingness to visit the clinic as required. Lack of a family member or someone who could escort them to the clinic was also a barrier. Patients were afraid of meeting someone they knew, as then their HIV status might be detected. Additionally, two key participants pointed out that the lack of skilled health HIV-care providers in some centers made them reluctant to go to the health center. Types of Care and Support Needed by PLWH at Community Home-based Settings All key participants explicitly articulated the need for HBC, particularly for those who were very ill and could not be admitted to the hospital for several reasons. Most participants stated that when they were sick, their mother or wife usually cared for them at home before or after admission to hospital. Participants acknowledged the family as the main

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source of support, in addition to friends and NGOs. Nevertheless, participants recognized that specic types of care needed to be incorporated into HBC. These could be classied into basic nursing care, self-care and symptom management, psychosocial and spiritual care, care during dying and death, and informational support and capacity building. These are described later in the text. Basic nursing care. Family caregiver participants stated that basic nursing care was particularly needed for PLWH who were unable to care for themselves because of serious conditions and who were highly dependent on the caregiver for basic daily needs. The basic nursing care needed included preparing foods and feeding the sick, bed bathing, bed making, nail care, hair and mouth care, skin and wound care, universal precautions, handling body uids and contaminated items, bleaching soiled linens, and general house and environmental health. One family caregiver participant stated: Her condition was getting worse after having been discharged from the hospital. During the days she just lay down on the bed, not wanting to eat, even open her mouth for drinking or talking. . As her mother, I have done the best to care for her as much as I could do, although in some instances I am not sure whether or not it was correct what I have done. I think family caregivers need to be trained to provide basic care such as bed bathing, wound care, handling body wastes, and contaminated linen, etc., so that we could do that correctly and safely. (G2) Self-care and symptom management. Key participants stated that health care was needed not only by PLWH who were seriously ill, but also by those who still looked healthy. Self-care strategies, such as maintaining personal hygiene, consuming sufcient nutrition and water, maintaining a balance between activities and rest, stress management, medication adherence, and seeking help, were considered to be necessary by key participants. In addition, key participants also indicated the need to manage symptoms such as pain, fatigue, nausea and vomiting, insomnia, diarrhea, and coughing, which were frequently experienced by PLWH at home. One key participant said:

Yeah, most of our friends who [are] taking ART dont know how to deal with side effects of the drugs and how to manage HIV-related symptoms such as weakness, nausea, and difculty to sleep. It would be helpful if there were a home-care nurse to visit us and teach us about those matters. (K11) Psychosocial and spiritual care. All key participants said that their rst responses when diagnosed with HIV were shock, hopelessness, and despair, because of the perception that HIV was an incurable illness that led to death. Fear of rejection by their families and communities contributed to these feelings. Key participants needed empathy, acceptance, and emotional support from surrounding people to get through the illness. Spiritual support was viewed by key participants as essential because most of them felt hopeless about the future. Participants acknowledged that hope derived from cultural and religious beliefs and values was a valuable coping strategy for adverse conditions related to HIV. One key participant expressed: Sometime I thought I dont want to continue my life . I wish to stop taking ART since I [am] concern[ed] so much about my wife who abandoned me. Yet my mother always reminds me and advises me to be patient and steady in facing the test from God. Actually at the moment I really need psychological and spiritual supports especially from my dear wife. Unfortunately she abandoned me and choose[s] to stay with her parents until now. (K10) Care for dying and death. Three family caregiver participants had a family member who was in the stage of dying. They expressed the need for appropriate care and support for the PLWH and the family. Two family caregivers shared their experiences when they did not completely understand about caring for the dying person, except to offer prayer and emotional support. When the family member died, relatives and surrounding people were afraid to get close to the body, such that no one was willing to care for the body, as they would have done in case of a normal persons death. Family members clearly indicated the need to learn about the proper care for PLWH during the nal stages of life from a competent provider. One family caregiver said:

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Previously I just told people that my son is sick because of lung TB. Yet, someone knew that my son died because of AIDS and passed the information to my neighbor and relatives. As a result, neighbors and relatives were reluctant to get close to the dead body. [I didnt know] what should I do to care for the dea[d] body and tried to look for someone who could help us. Fortunately, a group of people headed by an Ustadz (Muslim leader/teacher) came to help us to ritually care for the dea[d] body in accordance with our religious belief. I think we really need those people who care for the dying and dea[d] AIDS person. Otherwise community people have to be trained to do so. (G6) Informational support and capacity building. Both key and general participants expressed the need for particular information which might help to deal with the illness or to care for those who suffered from the illness. Apart from general information about the illness, they also needed clear information about preventive measures, healthy life styles, available networks of support for PLWH, proper nutrition, medication side effects, HIV-related illnesses, and other knowledge about basic nursing care. All participants clearly indicated the need to build capacity to care for PLWH. One community leader participant expressed his concern about this issue when he said: Not all people in our community have enough knowledge about HIV and AIDS. That may affect the peoples perception about HIV and AIDS and care for those who are HIV infected. How [can] people [be] involve[d] in prevention and control of HIV if their understanding about it is lacking? We need clear knowledge about it and skills to strengthen our capacity in handling this HIV epidemic. (G23)

Discussion
The ndings of this study highlight the lack of health care services available in the Bandung region to respond to the high demand for health care for PLWH. In accordance with the increasing number of PLWH in the region, the quantity and quality of health care needs are also increasing. The lack of health care

facilities offering HIV care services lead to most PLWH seeking care in a particular HIV clinic, which served as a primary referral source in the region. This condition was noted to be associated with a high incidence of loss to follow-up (Wisaksana, van Crevel, Kesumah, Sudjana, & Sumantri, 2009). Thus, the problem can only be addressed by establishing more HIV services, especially outside of hospitals. It is clear that universal access to a comprehensive care package as outlined by the World Health Organization cannot be simply met by improved medical treatment alone. It also requires improvement in other services such as counseling, prevention, reduced stigma, and community HBC (Williams, 2001). The inadequate number of qualied health care providers in HIV services has hampered the delivery of quality care for PLWH, as indicated in this study. Staff shortages have been a major challenge in providing community HBC services for PLWH in rural areas in another setting (Shaibu, 2006), and this can also affect the continuum of care for PLWH in hospitals and community health centers, and at the family level. In addition, the knowledge and skills of health care providers need to be updated to support quality care in all areas including HBC provision. Campbell (2004) reported that training for HBC providers was a major component of HBC implementation. Our ndings suggest the types of training needed by the participants. The availability of community-based activities related to HIV was an important resource in establishing comprehensive care for PLWH. These activities could be useful partners for health care providers when developing and implementing a community HBC program. However, as shown by Uys (2003), in many cases HIV care at the community level often came from NGOs with no or little funding support from the government. Without proper coordination, this situation can compromise efforts to identify HIV-infected individuals and mitigate the effect of the HIV epidemic. Health care providers are further challenged to strengthen the capacity of potential partners and work together to achieve the goal of care for PLWH. Families, health volunteers, NGOs, and community leaders should be partners and they should be empowered to develop effective community HBC. Barriers to access health care services found in this study were similar to the previous studies (Irwanto &

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Moeliono, 2007; Posse, Meheus, van Asten, van der Ven, & Baltussen, 2008). Long distances to the clinic, embarrassment, complicated procedures to get treatment, limited resources, and nancial constraints were reported as the most frequent barriers to access to proper health care services. Participants expressed the need for care in particular areas, including basic nursing care, self-care and symptom management, and care for dying and death. They also indicated the need for informational support and capacity building. PLWH who are still healthy can benet from health promotion and medication adherence offered in HBC; those who are ill or dying can benet from symptom management and palliative care. HBC is appropriate, particularly in eastern cultures, because most sick people prefer to be cared for at home; 70% to 90% of all illness care takes place at home (World Health Organization, 2002). Effective HBC has shown positive outcomes on the quality of life, the acceptance and disclosure of an HIV status, and medication adherence (Ncama, 2007; Weidle et al., 2006).

not represent the general population in the study setting. Writing this report in English created extra problems. Some words in the local language could not be properly translated into English. The researcher tried to nd words that came close to the original expressions and also sought advice from Englishspeaking natives. However, HIV is a novel disease that had such a strong effect on the language used by those who have been emotionally involved with it, that it was often difcult to convey the exact meaning.

Clinical Considerations
 There is a need for HBC to ensure continuity of care for PLWH in developing areas with limited resources.  The community nurse can play a signicant role in the coordination and management of HBC services, in close collaboration with the family and other stakeholders such as NGOs and community and/or religious leaders.  The families of PLWH can be a center for HBC intervention if they have been educated to provide basic care and support.  Knowledge dissemination and education are essential components of developing an HBC system.

Conclusion and Recommendations


Our ndings suggest that although health care services for PLWH were available in Bandung, barriers often hampered the access. Existing health care services seemed fragmented and lacked a specic focus in the continuum of care. HBC offers a valuable approach to bridge the gap of care between hospitals, health centers, the local community, and the family. Health care providers are challenged to strengthen the role of family caregivers and other community services to work collaboratively in addressing HIVrelated prevention and care concerns. Thus, increasing the capacity of the family and community to provide HBC is imperative to the provision of comprehensive care for PLWH in Indonesia. Training and knowledge dissemination through interactive dialogues are key elements to develop effective models of community HBC for PLWH.

Disclosures
The authors report no real or perceived vested interests that relate to this article (including relationships with pharmaceutical companies, biomedical device manufacturers, grantors, or other entities whose products or services are related to topics covered in this manuscript) that could be construed as a conict of interest.

Study Limitations
This study captured qualitative data from a small sample size in a limited geographic region and does

Acknowledgments
The authors thank IMPACT, a project funded by the European Union, for nancial support of this

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study, as well as to all research participants and research assistants. They also thank Ir. Sikke A. Hempenius for improving the readability of the paper and the reviewers for their valuable comments. They also thank Dr. Lucy A. Bradley-Springer for editing this paper. KI designed and managed the study and wrote the manuscript. HH assisted in data collection and analysis. LP supervised the entire work and improved the manuscript. All authors read and approved the nal manuscript.

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