Health literacy.

Participants with disabilities and caregivers discussed two types of healthcare – general primary healthcare (e.g., under-five clinics, vaccines) and disability-specific services related to their health condition or impairment. While participants with disabilities and caregivers demonstrated general health literacy, many lacked information and knowledge on disability and disability-specific services, particularly in rural areas. Participants with disabilities and caregivers noted that primary healthcare services do not provide disability support and they do not attend these facilities when they have a concern related to disability. Despite a referral system from primary health providers to specialised services, many participants with disabilities and caregivers were not aware that these were available, leading to underutilisation of available services.

Perception of support available.

Participants with disabilities and caregivers reported being refused support at primary health services for general health issues. Many primary health professionals saw their role for people with disabilities as referral to secondary and tertiary care only, even for minor general health concerns.

“At the clinic they always refer, even if he’s just not feeling well, like he just has... maybe he’s got flu and they would say, ‘No, take him to (name of hospital).’ And I was thinking some of these things it was really not necessary because he didn’t have like something to do with his condition. Any child, even if you have a disability, you get sick sometimes, but it’s like they... I don’t know whether they are scared that maybe they may do the wrong thing, so they always refer us to (name of hospital).”

(Caregiver, female, child with physical impairment, Lusaka)

Limited outreach targeting people with disabilities.

Regarding outreach, participants reported that many people with disabilities and caregivers were unknown to health facilities, and thus were not targeted. Although healthcare professionals and key informants recognised that there were many people with disabilities who needed care, they noted a lack of programmes to identify people with disabilities in the community, leading to a gap in outreach for both disability-specific and general healthcare needs.

“…we need more information about us to reach the hospital, so that the hospital can be aware that [children with disabilities] are present in the community, these are the challenges they are facing and this is how we can be of help to them. You will find that they neglect you without information. This is why you find that some parents just lock their children up and wait for them to die. This is why it is so important that the hospitals pay more attention to us… with that information they are able to help us.”

(Caregiver, female, child with a physical and intellectual impairment, Chongwe)

Patient registration is typically completed by community health workers. However, community health workers in Zambia are not trained to assess disability and people with disabilities often go unregistered and underserved. Some organisations have aimed to work with primary health facilities to identify people with disabilities for targeted support, but these efforts were limited. For example, in 2020, a local NGO sought support from primary healthcare in rural Chongwe to identify children with disabilities and provide disability-support, including access to assistive technology. Although the health facility assessed and registered many children with disabilities, the demand exceeded expectations and the NGO could not meet the needs of all children with disabilities. This led to disappointment and distrust in the health system among many families. Participants emphasised the importance of avoiding such situations in the future, as people with disabilities are often let down by promises that underdeliver.

Improving information on healthcare.

In order to increase awareness, participants suggested that information on disability, health and accessing available services be disseminated in the community through volunteers and village headmen. This has been effective in spreading information on available vaccines and COVID-19. This strategy was recommended particularly for people with disabilities who are hard-to-reach or unable to move from home easily. Other suggestions included disability ‘champions’. These are people with lived experience attached to a health facility who can help sensitise people with disabilities and their families on disability, health and services available. This has been used successfully in rural and peri-urban areas for HIV and tuberculosis. Participants also recommended parent groups, similar to existing programmes, such as Safe Motherhood Champions Groups (SMAG), in which mothers with lived experience receive training to support other mothers in their local community. Participants suggested that this model could be used effectively with mothers of children with disabilities, to help them receive health information and learn simple support and rehabilitation to implement at home.

Negative attitudes towards people with disabilities.

Past experiences of stigma and discrimination at primary health facilities, both from health staff and other patients, negatively impacted the acceptability of services.

“I think their [healthcare professionals] attitude has to change. Because the way I see them, they see these children with cerebral palsy... it’s like they don’t see them to be human beings. Yes, they don’t see them to be human beings at the end of the day.”

(Caregiver, female, child with a physical and intellectual impairment, Lusaka)

Although some participants said that health professionals were supportive, many participants with disabilities and caregivers reported negative attitudes from health professionals, which made them reluctant to seek care.

“If I’m blind they shouldn’t call me funny names… you know the others would say, 'The camera is... is not functional' [...] I’ve come with my personal assistant, and then instead of you asking me what the problem is with me, you ask my personal assistant, 'Why have brought this man here?' […] So the language or attitude is what dehumanises a person with a disability.”

(Adult, male, visual impairment, Lusaka)

Some caregivers of children, particularly those with a severe disability, said that they rarely left the house with their child because of stigma towards disability by community members. There were calls for community sensitisation on disability to improve attitudes and increase participation in the community, including attendance at health services. Participants recommended that headmen and volunteers be trained to improve disability awareness in communities. Participants also called for structured sensitisation programmes via radio, community groups and via information in health facilities (such as posters).

Professional values and knowledge.

Participants noted that healthcare providers lacked knowledge on disability and supporting people with disabilities. Many people with disabilities did not attend primary healthcare because of limited knowledge among health providers. Limited knowledge on disability among health staff can also result in inappropriate medical advice and support. For example, a caregiver reported that health professionals regularly insist that their child take medication as a tablet, despite them having trouble swallowing. Participants agreed that health professionals needed more training on disability, in order to improve their quality of care and reduce negative or exclusionary attitudes. Further details on this training are provided in later sections.

As an alternative to primary healthcare, participants discussed the role of traditional healers. Many participants with disabilities and caregivers said that they did not seek support from traditional healers, as they shared false information on disability and health.

“Traditional doctors, they cannot do anything to benefit a person with a disability because they depend on just making money. There’s no help and care they can render to us […] What can I receive from a witchdoctor, what free service can I receive? Nothing.”

(Deaf adult, male, Chongwe)

Participants reported that traditional healers spread information amongst the community that disability was caused by witchcraft. As a result, community members often encouraged and pressured people with disabilities and caregivers to seek support from a traditional healer to control this witchcraft. Thus, some people with disabilities present late to modern healthcare facilities, worsening health outcomes. Participants in this study recommended that traditional healers be given training on disability, so that they no longer spread information that disability is caused by witchcraft and they promote appropriate healthcare solutions. Key informants reported that there are plans to provide disability training for members of Traditional Health Practitioners' Association of Zambia. There will also be incentives for traditional healers to support people with disabilities to access modern health services.

Improving autonomy.

Overall, participants said that many people with disabilities do not attend health clinics because of the challenges they face. To build trust in health facilities and to help identify the needs in the community, health professionals suggested holding sessions and half-day workshops at primary health facilities, in which to inform people with disabilities and caregivers about the services and support available, to dispel worries and to understand priority concerns of this group. These activities would require staff training and support from disability experts.

Challenges with transport and inaccessible environments.

Participants regularly cited transportation as a significant barrier due to both availability and cost, particularly in rural and peri-urban areas where primary health facilities are often distant from people’s homes. In these regions, challenging terrain, such as rocky or sandy roads, made travel difficult for those with physical or visual impairments. A participant with a visual impairment reported that he has to walk 30 minutes along rocky and uneven ground to reach the health facility, for which he requires assistance from his family members, taking them away from school and work. Even in urban settings, narrow and uneven pavements limited accessibility for people with disabilities. Across locality, caregivers of children with disabilities, especially those with a physical impairment, often had to carry them to health facilities. This becomes more difficult for older, heavier children. Caregivers said this put great physical strain on them and there were reports of musculoskeletal troubles as a result.

“The problem I experience the most is the issue of always having to carry her on my back. Despite her being slim, she has a lot of weight and to be able to take her to the hospital, I need to carry her on my back. We do have a wheelchair, however we are unable to use it because our roads are very sandy. The effort it would take to push the wheelchair is more compared to just putting her on my back. So the wheelchair is just for home.”

(Caregiver, female, child with a physical and intellectual impairment, Chongwe)

Participants gave examples in which people with disabilities have been placed into a wheelbarrow, oxcart or similar to aid with transport to a health facility, which causes a loss of dignity and can cause physical pain. Some people borrow money from friends and family to afford transport to the clinic, but this can put strain on relationships and an individual’s financial situation. Many participants with disabilities and caregivers told us that they choose not to attend a health facility because of the travel costs attached. As well as primary health facilities, this was the case for secondary and tertiary hospitals, where people with disabilities can receive disability-specific support. These are often located centrally in the district or in Lusaka, the capital, and many people do not attend these services because of the travel cost and time, and thus go unsupported.

Across the interviews, there were calls for transport support from participants with disabilities, caregivers, and healthcare professionals. Participants with disabilities asked for transport to come to them, and some families said they would be willing to pay a reasonable amount if accessible transport could reach them at home. Participants also suggested that household visits by primary health professionals become more common for people with disabilities, to relieve them of travel when it is difficult. Participants said this would be particularly beneficial for check-ups and small procedures, when handling a non-critical illness, such as a common cold. Key informants in the health district office said that it was too expensive for the government to provide accessible transport to all, although they recognised this as a priority. They called for partners, such as NGOs, to help the district health office buy vehicles to support people with disabilities with their transport needs. Key informants reported that advocacy from people with disabilities and caregivers, in-person or via social media, had an impact at national and district level and moved issues such as accessible transport higher up the priority list.

Inaccessible facilities.

We were told that structural barriers at healthcare facilities also restricted access for many people with disabilities. Many facilities do not have ramps and other accessible design features. Even when facilities have an accessible infrastructure, they may be lacking adaptive and accessible equipment, such as adjustable examination tables. Key informants in the district health office said that there is guidance from the government to adapt older buildings to be more accessible, however, they did not know of any examples of this in practice and said that adaptations were extremely rare.

“One thing that came in my mind is that we have very, I think, qualified people, but the environment in which they work is not sufficiently equipped in terms of the appropriate technology that they’re supposed to use. The services are there, but are they the right services? Are they appropriate? Are they modern? No.”

(Adult, male, physical impairment, Kafue)

Communication difficulties and inaccessible health information.

Often described as a major challenge in health facilities were communication difficulties, particularly for deaf and hard of hearing patients or people with an intellectual disability. We were told that the majority of health providers did not have sign language interpretation available in health facilities. This is typically only available when a deaf person hires a sign language interpreter at their own expense or by having a hearing family member in attendance, which takes them away from employment and other responsibilities. To overcome communication difficulties, many deaf and hard of hearing patients will communicate with a health professional by writing. However, this is not suitable for people who cannot read or write. Many deaf people avoided health clinics because of difficulties communicating, which can be stressful, exhausting and makes them feel excluded.

“I Google what is the medication for a sore throat and for a cold, then I go to the drugstore and buy. If I can’t buy it, I go to the hospital, but then the doctor may see me cough and they think that I’ve a different illness and they give me the wrong prescription. Many Deaf people in Zambia have the same scenario, because at the hospital they don’t know sign language […] Even the Government has never employed sign language interpreters in these hospitals to help Deaf people […] It is extremely hard for us to access health information. So now if you are sick you just do a self-prescription. If I’m seriously sick, yes, I cannot go to the government hospital.”

(Deaf adult, male, Lusaka)

Although sign language training for health professionals was considered worthwhile, most deaf and hard of hearing participants recognised that it was likely unfeasible to have all health personnel fluent in the national sign language. Instead, participants called for health facilities to have a sign language interpreter on staff or for government to pay for sign language interpreters to attend with a patient, instead of them having to pay out-of-pocket. People with intellectual disabilities and health professionals also experienced difficulties communicating. Health professionals asked for training on how best to work with and communicate with people with intellectual disabilities and communication difficulties. They would like training on how to understand a health concern when someone cannot verbally vocalise their symptoms. Communication challenges caused misdiagnosis and people with disabilities to avoid healthcare systems.

Further, health information was inaccessible to people with visual impairments. For example, medicines were difficult for people with a visual impairment to independently manage at home, as labels were not provided in braille. Participants called for braille on medication packets and bottles, and suggested other simple solutions, such as provision of pill boxes with identifiable raised labelling to help with medication management at home, or simply inserting a staple into one medicine bag and not another, to help identification between two medicines.

“The writing is the serious challenge because I need to know what is contained in the certain medicine that I’m taking. Now I also need to have the understanding of when should I take this medication and if I want to make adjustments, how do I make adjustments, because I can’t access the information which is written on the same. There is no information that is accessible…”

(Adult with a visual impairment, male, Lusaka)

Inaccessible health information also transcends to health promotion and prevention campaigns. We were given the example of the COVID-19 pandemic, in which information on masking, social distancing, and other health guidance was not made available in accessible formats, especially for those with intellectual or sensory impairment. This increased risk and stress.

Action to improve accessibility.

The disability identity card from ZAPD was noted as improving the experience of people with disabilities at a healthcare facility. Many health professionals provide expedited service or additional support when an individual presents this card. However, not all health professionals understood about the disability identity card. Further, there was not clear guidance on accommodations that should be given when a disability identity card is presented. Participants suggested standardised policies and procedures for health facilities to follow when they have a patient with disabilities, as well as improved training for health professionals on the disability card and reasonable accommodations to promote access. As well as health professionals, some participants with disabilities and caregivers did not know about the card and the available benefits. People with disabilities and caregivers also face difficulties accessing the disability identity card. Assessment of disability by a health professional is required before a card is issued, however, not all doctors are authorised to conduct this assessment and the majority are in Lusaka, to where travel is difficult for many. Thus, many people with disabilities do not have a disability identity card. Some NGOs and OPDs bring doctors to homes or local villages for ‘assessment days’ but this is not common practice. Participants requested that government provide assessment for the disability card in local communities, rather than in Lusaka.

Inconsistent financial support.

We were told that many people with disabilities and caregivers receive the support they need for general health concerns, with the costs covered by the National Health Insurance Scheme and payment contribution exemptions for people with disabilities. However, participants noted that many people with disabilities did not know that they were entitled to exemption from contributions to the scheme. Also, the National Health Insurance Management Authority did not have a system to manage and monitor exemptions, although they were in discussion with the government to develop an improved system that would help ensure that eligible people with disabilities received the exemption.

Unaffordable direct costs.

Medication was often unaffordable, especially when not available at a health facility and available only at a private pharmacy. This was of major concern to participants with disabilities and health conditions that required regular medication (such as epilespy).

“This issue is very difficult because the medicine that they will write on the prescription for us to buy, we find that you don’t even know where to start looking for the money to buy it. So what that means is that he will start having regular seizures all because we didn’t have the money to buy the medication. The other challenge is that I can’t leave him alone for me to go and look for the money to buy the medication. Who will I leave him with? So that is our biggest challenge.”

(Caregiver, female, child with an intellectual disability, Chongwe)

Participants said that needed medicines were rarely available at health facilities. This caused many problems, especially for people requiring regular medication. Participants called for medications to be made available first to priority patients at reduced cost, including those with disability and/or chronic illness.

Despite these concerns, affordability of primary health was generally satisfactory for participants with disabilities and caregivers, but for specialist disability support, this was not the case. In particular, assistive products were unaffordable to the vast majority, and people with disabilities often used old, ill-fitting and poorly working products. People reported using crutches that were not the correct size, hearing aids that no longer worked, and wheelchairs that were in disrepair. Often people with disabilities relied on donations and support from NGOs to receive an assistive product, but this was rare. In cases when received, people often could not afford the costs of maintenance and repair. As a result, many people with disabilities in Zambia do not use an assistive product that would support them.

Lack of training on disability for health providers.

Health professionals do not typically receive training on disability. Those interviewed often viewed disability through the medical model and had little understanding of social and rights-based models. Limited training and knowledge results in negative attitudes, exclusion of people with disabilities from primary healthcare, limited availability of disability information at primary facilities, and inappropriate referral to secondary and tertiary hospitals.

“The challenges (to providing care), it’s because we have minimal knowledge. The information which we have about disabled people, it’s very minimal. I can’t manage to handle a disabled person unless I refer them to the physiotherapist […] So it’s a challenge, because instead of them receiving the help they need immediately, it will take maybe two to three days for them to source money to meet with the physiotherapist.”

(Clinician, female, Chongwe)

All health professionals interviewed requested training on disability. They were highly motivated to improve access to healthcare for people with disabilities, to provide information on disability, and to provide low-intensity disability-support in primary healthcare settings. Participants listed numerous topics to cover in the training, including understanding disability, disability rights, identifying disability, understanding needs, and information on the developmental stages for different conditions (e.g., cerebral palsy). Participants also wanted primary healthcare professionals to be trained on low-intensity support for caregivers of children with disabilities, including how to manage their child’s disability (e.g., how best to feed a child with feeding difficulties and how to maintain good hygiene for children with a physical impairment). Above all, participants wanted health professionals to be trained on respectful interactions that empower people with disabilities, and to be better equipped to coordinate and collaborate with people with disabilities and caregivers on individual needs and treatment approaches.

Health professionals requested that disability topics be embedded into university teaching and medical degrees, and in training for community health workers and others who do not typically attend tertiary education. Health professionals would like their training to be supplemented with national good practice guidance on disability-inclusive healthcare, which did not exist. Although extremely rare, NGOs have provided training to health professionals on disability. For example, an NGO trained health professionals in Lusaka on supporting people with intellectual disabilities. The training included interaction with people with intellectual disabilities and their families. Health professionals that attended the training were positive about its impact, feeling that it increased their confidence and knowledge. They reported that they have since supported parents and children to more regularly access health facilities.

“At first, I was scared […] But from the time I started training from (name of NGO), at least it gave confidence in me. I usually go to their site where they normally care for different disabilities. So that is where I gained courage and I can work with them and I can help.”

(Clinician, female, Lusaka)

Limited coordination and implementation towards disability-inclusive healthcare.

When discussing the health system, key informants noted that Zambia has strong policies on disability inclusion, including in healthcare, but that implementation was limited, due to limited knowledge amongst government actors, limited resources, and competing priorities (such as nutrition). Government also has limited data on the number of people with disabilities and their needs, making it difficult to plan for disability-inclusive health. That said, key informants noted that there is motivation within government to promote disability inclusion and disability-inclusive health systems. For example, the Ministry of Health has developed an action plan to improve partnership between government district offices and NGOs in order to promote disability-inclusive healthcare. NGOs were viewed as able to help implement initiatives that the health office does not have the resources to deliver. However, key informants said that often international NGOs come to them with their own agenda, without collaborating with the district health office. These programmes often do not meet priority needs in local communities but instead reflect a global agenda of an international NGO. The key informants requested that NGOs conduct a needs assessment at the beginning of the planned programming in partnership with the Ministry of Health and district level officials to identify priority needs that will address local concerns. Collaboration was said to improve long-term impact and sustainability of NGO programmes.

“The government has the vision, the district has the vision, the direction where it wants to go, so if we can have partners who can come through to support us in some of these [health concerns] that are prevalent in the communities, I think it will go a long way… I look forward for more partners who come in this fashion, where we do the needs assessment, we discuss, and then we find a solution together.”

(Key informant in government district health office, male, Chongwe)