Coordination of health and rehabilitation services for person with disabilities in Sierra Leone – a stakeholders’ perspective

Abstract

Purpose

To explore stakeholders’ perceptions of the coordination of health and rehabilitation services for persons with disabilities in Sierra Leone.

Materials and methods

A qualitative study including seven focus group discussions with health, rehabilitation, and disability organisations stakeholders in Sierra Leone. Content analysis was used for data analysis.

Results

One theme emerged; poor governance in implementing disability policies, healthcare, and rehabilitation services, which included seven subthemes: insufficient implementation of healthcare policies for persons with disabilities; changes, lack of coordination and communication between ministries governing disability policies and rehabilitation services; need for accurate disability data and clinical record keeping; absence of funds and poor political priority to healthcare and rehabilitation services; continuous support for non-governmental organisations (NGOs) to provide healthcare and rehabilitation service delivery; lack of coordination between different healthcare and rehabilitation service providers and calling for increasing persons with disabilities capacity for greater inclusion in society.

Conclusions

Increasing governmental prioritisation, and ensuring coordination and trust between donors, NGOs, and governmental programmes were keys for sustainable health and rehabilitation services. Stakeholders need to ensure national coverage and equally distributed health and rehabilitation services. Including rehabilitation services and assistive technology in the Free Healthcare Initiative would contribute to implementing the Disability Act.

Implications for rehabilitation

• Political prioritisation of persons with disability (PWD) need to increase to provide national coverage and equally distributed health and rehabilitation services for PWD.

• To ensure access to rehabilitation services and access to basic assistive technology for PWD, the government of Sierra Leone could agree on basic rehabilitation services and a priority list of assistive devices to be distributed through rehabilitation centres and funded by the Free Health Care Initiative programme or the Sierra Leone health insurance scheme.

• To increase access to health services for PWD, the government of Sierra Leone could ensure inclusion of PWD in the Free Health Care Initiative programme.

• The government, donors, and organisations providing or funding health and rehabilitation services for PWD need to mobilise and coordinate resources better and be mutually held accountable to maximise the benefits of PWD resources.

Keywords:

• Disability
• focus group discussions
• health systems
• rehabilitation
• West Africa

Introduction

The Republic of Sierra Leone is an English speaking low-income country, located in West Africa, with approximately 57% of the population living in poverty and 13% in extreme poverty [1]. Between 1991 and 2002, the country suffered a civil war that destroyed much of the country’s infrastructure. Many people were disabled during the civil war, and the population’s possibility of getting a vaccination against poliomyelitis was interrupted [2,3]. After the war ended, Sierra Leone started rebuilding its societal infrastructure and rehabilitation services were established and provided by international non-governmental organisations (NGOs) [4]. In 2006, the declaration of the United Nations Convention on the Rights of Persons living with Disabilities (UNCRPD) addressed inequalities that persons with disability (PWD) face [5]. Strategies to promote greater inclusion of PWD in societies target social and health policies to ensure access to education, employment, welfare, and healthcare [6]. Healthcare and rehabilitation are defined by Articles 25 and 26 of the UNCRPD [5]. In 2011, the government of Sierra Leone ratified the UNCRPD and passed the Persons with Disability Act [7]. Rehabilitation services have been gradually handed over from international NGOs such as Humanity and Inclusion and Prosthetics Outreach Foundation to the Government of Sierra Leone, who have continued to run the rehabilitation centres in Freetown, Bo, Koidu, and Makeni [8]. New Steps Rehabilitation Centre in Waterloo, ran by Mercy Ships, was handed over to a local NGO that closed its rehabilitation centre. A national commission for PWD was established responsible for implementing the Person with Disability Act [7] which states that PWD should receive free healthcare in all public healthcare facilities.

An Ebola virus outbreak occurred between 2014 and 2016. This outbreak halted much of Sierra Leone’s progress in providing healthcare [4,9]. The country has a double burden of disease, with high prevalence and mortality rates of communicable disease and non-communicable diseases and injuries are increasing [4]. According to the 2018 household survey [1], the prevalence of disability in Sierra Leone was 4.3%, an increase since the household census from 2015, which reported a prevalence of 1.3% [10]. Lower limb impairments (32%) and visual impairments (29%), were the most prevalent types of disability [1]. People with disability tend to have less access to healthcare, are not being employed and are at higher risk of living in poverty in comparison to the general population [11]. To facilitate greater inclusion and participation in society, PWD need general healthcare like the rest of the population. In addition, PWD sometimes need specialised healthcare related to the health condition that led to the impairment and rehabilitation services such as assistive technology, physiotherapy, and occupational therapy.

Global estimates indicate that there is a growing need for rehabilitation services [12]. Populations growing older, increasing rates of non-communicable diseases, and accidents are some drivers [12]. The United Nations Sustainable Development Goals and especially the goal to promote health for all people [13] will not be possible without the engagement of multisectoral stakeholders and a participatory approach to public policy [14]. Involving stakeholders in the decision process enables the implementation and enactment of policies. To provide healthcare, rehabilitation, and assistive technology that PWD are entitled to, collaboration between stakeholders from different international bodies, national ministries, NGOs, health/rehabilitation personnel, traditional healers, and PWD is necessary.

With the ratification of the UNCRPD, a country is required to provide health services that include healthcare and rehabilitation for all PWD [5]. World Health Organization (WHO) guidelines recommend rehabilitation services to be integrated in health systems and administered under the ministry of health rather than the ministry of social welfare [15]. Sierra Leone has ratified the UNCRPD [5] passing the Persons with Disability Act [7], adopted the sustainable development goals agenda to “leave no one behind” [4]. In 2012, the responsibility for rehabilitation in Sierra Leone has shifted from the ministry of social welfare to the ministry of health and the National Commission for Persons with Disabilities [7] was created to implement policies. Although efforts have been made to ensure access to health and rehabilitation services for PWD, they are still not available for all. There are still barriers that continue to lead to inequalities and exclusion in society for PWD [16]. Some of the rehabilitation policies are yet to be implemented and coordination of available resources is crucial to ensure most effective utilisation. To the author’s knowledge, there is no qualitative study conducted from the view of stakeholders regarding the coordination of healthcare and rehabilitation services in Sierra Leone. Therefore, the aim is to explore stakeholders’ perception of coordination of health and rehabilitation services for PWD in Sierra Leone.

Methods

Design

A qualitative study with an inductive approach using focus group discussions with stakeholders working within healthcare, rehabilitation, and disability in Sierra Leone [17]. Content analysis was used for data analysis [18]. Two content areas were discussed in the focus group discussions; coordination of health and rehabilitation, covered in this paper, and access to health and rehabilitation, not covered within the scope of this paper.

Procedures and participants

Prior to the data collection, a questioning route was developed according to Krueger [17] by authors Victoria Jerwanska (VJ) and Lina Magnusson (LM). The developed questioning route was validated by author Ismaila Kebbie (IK) and staff at Humanity and Inclusion, Sierra Leone. The questioning route covered; opening questions and introductory questions examples were “Could you please tell us your name, what type of organisation you work for and how long have you been working within health or rehabilitation services?”, “Could you describe what you work with within health and rehabilitation services?”. Examples of key questions were “What is needed to successfully coordinate health and rehabilitation services for people with disability?”, “What needs to be done to ensure policy implementations?”, “If you could improve one thing about coordination in health and rehabilitation services provided for people with disability, what would you change?” a summary of the discussion was done by the moderator and followed with an ending question “Is there anything that you feel that we missed and would like to add?”. Probing questions were used to moderate the focus group discussions.

Ethical approval was obtained from the National Scientific Ethical Review Committee in Sierra Leone [19]. A purposive sampling aiming for maximum variation was applied. A variation of stakeholders of the workforce within rehabilitation, health, or disability issues, including local health and rehabilitation staff, government officials, policy makers, international experts working for NGOs and representatives for disability organisations, in Sierra Leone were identified. Invitations to participate in a focus group discussion were administrated in Freetown, through Humanity and Inclusion, the Ministry of Health and the Ministry of Social Welfare, the National Commission for Persons with Disabilities, the National Rehabilitation Centre, the Physiotherapy Department at Connaught Hospital, Sightsavers, World Hope International, Sierra Leone, Sierra Leone Union on Disability Issues and the Physiotherapy Department at Emergency Hospital. Invitations were also administrated in Makeni, to the Rehabilitation Department at Makeni Government Hospital, and in Bo to the Bo Regional Rehabilitation Centre. Inclusion criteria were participants had to be an English speaking, above 18 years of age, stakeholder working within rehabilitation, health, or disability issues. Participants received information about the study both orally and in written form. For visually impaired participants, the information letter was read out loud. Written consent to participate was obtained through signatures, thumbprints, or personal stamps. Thirty-seven participants agreed to take part in a total of seven focus group discussions.

The focus group discussions were conducted in English in the capital Freetown, in the southern district in Bo, and in the northern district in Makeni. Focus group discussions were moderated and/or co-moderated by the authors VJ, LM, or another trained moderator briefed beforehand on the aim of the study, and the questioning route. Not all questions in the questing route were asked if the discussion naturally answered them. The focus group discussions were recorded using a digital voice recorder and lasted an average of 74 min (range: 58–91 min). One focus group discussion included only participants on a ministerial level and one focus group discussion contained participants representing disabled persons organisations. Two focus group discussions were with rehabilitation and health professionals, and in three of the focus group discussions, participants were mixed from all the above-mentioned institutions. All focus group discussions were transcribed verbatim by one author (VJ).

Data analysis

Collected data were analysed using content analysis [18], the analysis was conducted by authors VJ and LM. First, entire transcripts were read several times to get an overview of the content related to the aim of the study. Next, the transcripts were divided into smaller meaning units, e.g., sentences or paragraphs that relate to each other and the purpose of the study [18]. Each meaning unit was condensed without losing its meaning and assigned an abstracted code. Codes were sorted into subthemes (Table 1) [18]. The result section is a summary of the content of the codes under each subtheme. Finally, an overall theme was identified.

Table 1. Example of meaning units, condensations, codes, and sub-themes.

Meaning unit	Condensed meaning unit	Code	Sub-themes
“The other thing, I am sure would help is actually enabling or empowering the disabled people’s organisations whereby they can really take charge over their own activities”. Focus group discussion D, Participant 17, certified occupational therapist, governmental organisation	Enabling or empowering disabled people’s organisations whereby they take charge over their own activities.	Motivating persons with disabilities, organisations to own their own activities.	Calling for increasing persons with disabilities capacity for greater inclusion in society
“Because they have done changes in their policies, they even created a national program, but they do not allocate a specific budget. It is hard to do anything if it is just on paper”. Focus group discussion B, Participant 15, technical/operational coordinator, NGO.	Changes were done in the polices but no specific allocation of budget. It is hard to do anything if it is just on paper.	Improvements in rehabilitation policy were not followed by budget allocation.	Absence of funds and poor political priority to healthcare and rehabilitation services
“Some NGO’s who come to this country have their own theory and they are working with people with disabilities. But we do not even know that they exist, they come here do their thing and go. If only they would link with the government, they would guide them on where to go and who to target, and the community to target. They do not even register, it is the problem we have here. People who comes here say that they are working with people with disability, but we do not even see what significant achievements they have done but they will go back with big report”. Focus group discussion C, Participant 26, nurse BSc, governmental organisation.	Some NGO’s who come to this country. They work with people with disability we do not know they exist they come, do their thing, and go. If they would link with the government, they would guide them where to go, who to target. They do not register. People come here say they are working with PWD but we do not see what they have achieved.	Some NGO’s working with disability programmes do not register so the government could coordinate efforts.	Continuous support for non-governmental organisations to provide healthcare and rehabilitation service delivery

Self-reflexivity

Researchers’ cultural backgrounds [20] and pre-understandings influence the research process [21]. Two authors are Swedish, VJ in public health and nursing and LM with backgrounds in rehabilitation research and public health with previous qualitative research experience in Sierra Leone. Author IKs’ experience is with public health, rehabilitation policy, service delivery, and he is a senior physiotherapist from Sierra Leone. Author IK was not involved in the content analysis but contributed to the interpretation of results, the discussion and the implications for rehabilitation in Sierra Leone.

Results

Each focus group discussion consisted of 4–7 participants (Table 2). The average age was 41 years (range: 21–55 years). Their average experience in disability, rehabilitation and healthcare services was 13 years (range: 1 month to 36 years). The average education was 14 years in school (range: 0–18 years).

Table 2. Participants demographics and characteristics.

	Study population, n = 37 (%)
Sex
Male	24 (65)
Female	13 (35)
Occupation
Health and rehabilitation
Certified prosthetics and orthotic technician	6 (16)
Nurse BSc or below	4 (11)
Certified physiotherapist	2 (5)
Certified rehabilitation therapist	2 (5)
Certified occupational therapist	1 (5)
Clinical health officer	1 (5)
Diploma in rehabilitation medicine	1 (5)
Other
Disability advocate	5 (13)
Technical/operational coordinator	4 (11)
Governance/leadership/policy expert	3 (8)
Administration/business/finance	2 (5)
Monitoring/evaluation	1 (3)
Social worker	1 (3)
Teacher	1 (3)
Missing	3 (8)
Organisations
Governmental organisation	21 (57)
Non-governmental organisations	9 (24)
Disabled persons organisations	7 (19)
Country
Sierra Leone	31 (83)
England	1 (3)
France	1 (3)
Italy	1 (3)
Mexico	1 (3)
Norway	1 (3)
USA	1 (3)

Poor governance in implementing disability policies, healthcare, and rehabilitation services

Insufficient implementation of healthcare policies for persons with disabilities

Participants expressed that the Ministry of Health and Sanitation (MoHS) had declared free healthcare for PWD at all public health institutions; however, it was not implemented in practice. The government had signed the UNCRPD but not taken enough responsibility for carrying it out. The National Commission for Persons with Disability was responsible for implementing and evaluating policies relating to PWD, but lack of political will had held disability concerns back. Participants expressed that implementation strategies were lacking and indicators to monitor and evaluate would help. There was a need for the classification of disability to facilitate the implementation of free healthcare for PWD. The existing policy for free healthcare was written for vulnerable groups, which created confusion if PWD were included. The specific healthcare needs of PWD were not addressed, and existing policies needed adjustments; for example, to implement the Disability Act, PWD should be included in a policy and be a part of policy dialogue. Providing comprehensive treatments for PWD required partnership between private and public healthcare facilities because public healthcare facilities lacked expertise or equipment. Participants called for the government to understand that it was not about signing treaties or policies but to put policies into practice. To allow PWD to change their situation and free healthcare had to be a human right, not charity (Table 3).

Table 3. Summary of subthemes and theme.

Subthemes	Themes
Insufficient implementation of healthcare policies for persons with disabilities	Poor governance in implementing disability policies, healthcare, and rehabilitation services
Changes, lack of coordination and communication between ministries governing disability policies and rehabilitation services
Need for accurate disability data and clinical record keeping
Absence of funds and poor political priority to healthcare and rehabilitation services
Continuous support for non-governmental organisations to provide healthcare and rehabilitation service delivery
Lack of coordination between different healthcare and rehabilitation service providers
Calling for increasing persons with disabilities capacity for greater inclusion in society

The intention will be one, and the results achieved will be another. A lot of recommendations have been embedded into our national constitutions. But in as much as they have been embedded in our national policy, they have still not been able to yield results as we are speaking. They continue to be a very pivotal challenge that continues to degrade the human rights aspect of persons living with a disability. (Focus group F, Participant 32, disability advocate, disabled persons organisations)

Changes, lack of coordination and communication between ministries governing disability policies and rehabilitation services

Participants explained that MoHS was responsible for health services for PWD and the Ministry of Social Welfare, Gender and Children’s Affairs (MSWGCA) for rehabilitation and other aspects concerning PWD. Participants expressed that the responsibility change to MoHS for health and rehabilitation services had led to positive changes for PWD. PWD had previously lacked representation at MoHS and MSWGCA, but disability and rehabilitation concerns had started to be raised. In practice, responsibility areas between the MoHS and MSWGCA were still diffuse. Coordinating actions for PWD could be enabled by increased communication and network meetings between MoHS and MSWGCA as well as other relevant ministries. Participants thought that the leadership over rehabilitation services was more important for future development than which ministry or directorate it was under.

The main risk is the gap of communication between both ministries. Now, it [rehabilitation] is under health, but all other disability issues are still under the Ministry of Social Welfare. To give an example, the Ministry of Health has developed a mental health plan, and at the same time, the Ministry of Social Welfare has developed a mental health plan for a crisis. So, we have two mental health plans in the same country. (Focus group A, Participant 4, technical/operational coordinator in NGO)

Need for accurate disability data and clinical record keeping

Participants described that rehabilitation processes were not documented, leading to rehabilitation services not being evaluated. Data on prevalence, cause and needs of PWD was lacking. Up to date data were needed to assess and organise rehabilitation services. Participants did not accept the prevalence data on disability according to the national census conducted in 2015 since they considered it inaccurate. Participants requested a new census where census officers would be trained on how to capture disability. Disability unions were advocating for a certification of disability that could generate records of prevalence, types of disabilities, and better organisation of needed rehabilitation services. Not having a classification of disability led to PWD being denied their right to free healthcare.

There is no real data on disability, on the prevalence and on the causes. So, I think if the government or the organisations worked on getting real data of how many people with disabilities are there and what caused their disability. A lot of work can be done also on prevention. (Focus group C, Participant 15, technical/operational coordinator in NGO)

Absence of funds and poor political priority to healthcare and rehabilitation services

Participants called for the government to prioritise rehabilitation services for PWD. Without it, they had nothing, and services would not improve unless the government took an active decision to implement PWD rights. Free healthcare policies for PWD should be implemented to ensure the availability of free healthcare, drugs, and other treatments, but the Sierra Leonean government lacked funding. Participants expressed that unless resources were allocated, laws or healthcare and rehabilitation policies would not change the situation. Healthcare budgets did not have a section allocated for rehabilitation. A specific policy on health service delivery for PWD with a budget allocated for rehabilitation could increase the possibility of funds coming to rehabilitation services. Participants urged the MoHS to discuss with international institutions for help to fund rehabilitation services. Another issue was that funds allocated for PWD aid went to the MSWGCA instead of MoHS. Funding to PWD organisations had decreased due to individuals spending organisational funds for personal gain. Participants said the problem was that funds from MoHS ended up in individual’s pockets instead of reaching the rehabilitation centres. Corrupt practices and misuse of funds weakened the health system. Although some participants expressed not knowing if corrupt practices existed in health services delivery or if services were not adequately funded in the first place. Other participants stated that negative attitudes and lack of knowledge were why the government neglected rehabilitation services.

If there are no resources, and all those beautiful things will be laid out on paper, what actual impact do we really have on the individual person with disability down there? For me, while the political will and coordination is important, resource availability is also important. (Focus group G, Participant 35, leadership/policy expert, governmental organisation)

Continuous support for non-governmental organisations to provide healthcare and rehabilitation service delivery

Participants expressed that when the government took over rehabilitation centres from international NGOs, service provision, and quality of services became worse. The Sierra Leone government should have taken greater ownership over rehabilitation services and kept rehabilitation centres more operational. Participants also expressed critic against how NGOs had not created local ownership or trained the government personnel before handing over rehabilitation centres. On the other hand, participants were also calling for NGOs to support rehabilitation services. Participants expressed that relying on charity to provide rehabilitation services was not sustainable and attracting international funding for rehabilitation purposes was difficult for NGOs, which impacted the sustainability of assistive device provisions. However, various international NGOs still provided rehabilitation services. NGOs that tried to produce assistive devices locally did not get subsidies from the government. Coordination of healthcare and rehabilitation services between the government and NGOs providing different services had been lacking. The National Commission for Persons with Disability worked with international NGOs on service provision and policy writing within healthcare and rehabilitation. A national rehabilitation programme and a donor liaison office had been created by the MoHS. NGOs and rehabilitation professionals wanting to contribute had to register with the national rehabilitation programme to better facilitate monitoring and coordination of rehabilitation services.

Donors themselves, the other NGO’s, how do we coordinate our activities. So that they do not do duplications. Over the years, that is what we see. We see these particular institutions coming doing their own bit, loosely without centre command. (Focus group G, Participant 36, monitoring/evaluation, governmental organisation)

Lack of coordination between different healthcare and rehabilitation service providers

Participants described that when the government of Sierra Leone took over rehabilitation services from NGOs, they integrated them into referral hospitals, which created new challenges. The importance of rehabilitation centres was not recognised, therefore, the integration of rehabilitation services had not been fully implemented. Participants expressed that rehabilitation centres or services were not listened to by hospital management or the MoHS. Coordination of rehabilitation and healthcare services required a functioning management system. Rehabilitation services had to be prioritised like primary healthcare. Participants said there was limited interaction between wards in hospitals, rehabilitation services, and other health services, e.g., pharmacies. Although healthcare and rehabilitation services were under the same ministry, communication, and awareness between healthcare personnel and rehabilitation personnel had not increased. Participants explained that due to no summary of actors involved in rehabilitation, no organised communication system or continuum of care, there was a lack of referrals to rehabilitation services. Referral pathways and shared documentation between healthcare and rehabilitation facilities were beginning to be implemented but needed strengthening. However, some participants described that integrating rehabilitation services into regional hospitals had increased access to rehabilitation for a broader group of patients. Participants suggested teamwork between healthcare and rehabilitation professionals could lead to improved treatment and rehabilitation outcomes. Participants suggested a national coordination committee with different ministries, NGOs, and institutions that could improve the provision and coordination of rehabilitation services. Participants expressed leadership and ownership over rehabilitation services had been lacking and gradually improving. Formal networks for healthcare and rehabilitation personnel to facilitate interdisciplinary collaboration was lacking. National associations of rehabilitation personnel could advocate and strengthen rehabilitation professions; however, there were difficulties creating regional networks with neighbouring countries due to language barriers. Participants expressed personnel in rehabilitation lacked a formal communication pathway and coordination between different units but had strengthened communication and mapped out actors through networking and WhatsApp groups.

I have a problem because I do not know where to send children with cerebral palsy. There is a NGO that is working with these children, I contacted them. I mean increased communication between the departments and the different health services is needed to understand what the aim of each one is, to refer that patient to the appropriate service. (Focus group A, Participant 5, certified Physiotherapist, NGO)

Calling for increasing persons with disabilities capacity for greater inclusion in society

Participants were calling for the encouragement of young PWD to enable them in reaching their potential. Participants considered that all citizens of society have rights and responsibilities and PWD need to change their attitudes and behaviour to not just be receivers but also be willing to contribute. Some PWD used their disability to earn a living through begging. Participants suggested motivating PWD to build their capacity and learn to provide for themselves and become independent. Using prostheses or orthoses increased the possibility for employment and ability to work, but some PWD did not want to use them. Suggestions on how to increase the capacity of PWD to fend for themselves were vocational skill training to make items for sale, e.g., tailoring, coal pots, and machetes.

In some cases, microcredit programmes had helped PWD to successfully start a business, but there was also a problem with corruption in those programmes. Participants suggested providing scholarships to facilitate education within the field of rehabilitation professions for PWD to increase rehabilitation centres sustainability. PWD could be employed doing minor repairs on assistive devices through outreach services or in fabrics coupling wheelchairs, crutches, and other assistive devices provided by the government or NGOs. PWD should be involved in decision making regarding their issues, and for that to happen, they had to start advocating for their rights as a community. Disabled people’s organisations needed to own their activities. Due to the advocating of the disabled people’s organisation, the number of organisations working with disability rights had increased. Disabled people’s organisations held organisations working with disability and healthcare account to their actions.

Give me fish every day, I come to you, you give me fish. It is better you teach me how to fish. So, if you are not there, I would be fishing for myself. To me, it is necessary to also open places with skilled training for people with disability so they can go and achieve something for themselves. (Focus group D, Participant 22, certified prosthetics and orthotic technician, governmental organisation)

Discussion

In Sierra Leone, there was progress in policy planning, and PWD were being included in several policies, but strategies to fully implement and evaluate the policies were missing. The major issues which made donors withdraw funds were corruption and misuse of funds allocated for PWD. There had been insufficient coordination of healthcare and rehabilitation services between the government, NGOs, and donors. The quality of rehabilitation services had decreased when the government of Sierra Leone took over them from NGOs. Accurate data on prevalence, different types of disability and a referral system for healthcare and rehabilitation services were needed to plan for and coordinate healthcare and rehabilitation services. Participants suggested programmes facilitating possibilities for PWD to be able to contribute to society.

Sierra Leone and the MoHS is largely dependent on donor funds to finance their healthcare and rehabilitation budgets [4]. The majority of rehabilitation services given in Sierra Leone have been provided by NGOs [4,22]. The MoHS had difficulties monitoring and were unaware of initiatives being conducted, leading to duplications of programmes or unequal distribution of disability services. Similar issues have been reported in Malawi [23], also dependent on donor funds and NGOs to provide healthcare services. Due to serious mismanagement of donor funds and corruption, a lack of trust between donors, stakeholders, and the government led to duplicated programmes and no coordination of services [23]. A study investigating scaling-up health innovations conducted in Ethiopia, Nigeria, and India [24], interviewed stakeholders about key aspects of effective aid. Common barriers for successful scale-up of health innovations was lack of government coordination of donor activities and programmes, limited government funding, parallel monitoring systems between donors and implementors, information systems and procedures [24]. According to the 2005 Paris declaration of aid effectiveness [25], both recipient countries and donors should adhere to the principles of ownership, harmonisation, alignment, results, and mutual accountability for aid to be best utilised and sustainable. Our results indicate a lack of governance in healthcare and rehabilitation services had damaged donors trust due to corruption in Sierra Leone government and non-government organisations. Since Sierra Leone has limited resources for the government to allocate and will continue to need external support for some time [4]. To not waste important resources, it is crucial to successfully coordinate donor funds, and NGO provided services and to honour the Paris declaration principles [25].

Participants called for more accurate data for disability prevalence, they criticised the inaccurate measurement of disability prevalence in the 2015 Sierra Leone Population and Housing Census. The 2015 housing census [10] reported 1.3% disability prevalence of the population, asking if “anyone in the households suffered from any form of disability”. The 2018 Integrated Household Survey [1] changed the strategy by instead asking, “Does anyone in the family have any part of their body that does not work well?” and reported disability prevalence of 4.3% of the population. Thus, the disability prevalence reported in 2018 [1] was higher than in 2015 [10] and is probably more accurate and can be better accepted by stakeholders to plan for national coverage and equally distributed rehabilitation services for PWD in Sierra Leone.

To increase access for PWD to healthcare, rehabilitation and assistive devices stakeholders called for a national referral system to improve coordination and knowledge between different health service providers, hospital departments, and rehabilitation facilities.

Research from other low- and middle-income countries investigating the implementation of UNCRPD [26] and the Global Disability Action Plan [27] reported similar challenges as seen in Sierra Leone. Common barriers reported in Nigeria, Madagascar, Pakistan, and Mongolia were inadequate referral systems between different levels of care and no multidisciplinary team approach of care [28]. In addition, lack of information about rehabilitation services posed a barrier to healthcare personnel and PWD, both in South Africa [26] and in Sierra Leone [28]. To improve healthcare and rehabilitation provision for PWD, stakeholders called for teamwork between healthcare and rehabilitation personnel and a national coordination committee involving ministries, healthcare institutions, and NGOs. This type of engagement between different institutions that enabled communication, coordination, and information was considered a potential facilitator to successfully implement the Global Disability Action Plan [27] as well as the UNCRPD [26]. Since 2020, a disability, assistive technology, and rehabilitation technical working group has been launched by the MoHS and the MSWGC to work as a platform for stakeholders working within health and rehabilitation services [29].

Efforts to better coordinate assistive devices in Sierra Leone had begun. The MoHS is developing a national assistive technology programme and revising the previous physical rehabilitation policy [29,30] to address emerging issues with rehabilitation. A study interviewing PWD in Sierra Leone recommended developing a national assistive products list to facilitate greater access to assistive devices and related rehabilitation services [28]. The Sierra Leone national assistive technology programme has the mandate to develop a priority assistive product list, which is in progress [29]. This is in accordance with WHO recommendations for nations to decide on a priority assistive product list to ensure basic assistive technology for PWD [31].

Stakeholders called for encouragement and programmes facilitating possibilities for PWD to contribute to society and not just be receivers. In Nepal, persons with physical disabilities reported that vocational training programmes contributed to improvements in their socio-economic status [32]. An Ethiopian study investigating technical educational and vocations training for PWD, indicate a desire and need for PWD to become empowered to self-employment. The skills they considered necessary for sustainable employment were those suited to and necessary for owning a business [33].

A failure to adequately include PWD in policy dialogue, policies, and programmes regarding healthcare and rehabilitation was reported by stakeholders. The policies that PWD could rely on was the Disability Act, Article 17 [7] stating that PWD had a right to free healthcare in all public health facilities and the Free Health Care Initiative [4,34]. However, it was unclear to which extent PWD was included in the Free Health Care Initiative. For example, the household survey 2018 indicated that women with disability had access to these programmes to some extent [1]. Sierra Leone’s Free Health Care Initiative [34] originally included healthcare service user fees for pregnant women, lactating mothers, and children under five, funded by a combination of donors and the government. Earlier studies indicate it was very common in Sierra Leone that healthcare and rehabilitation staff ask for money when providing free services, and women and children who are entitled to free care routinely pay for health services to clinic-based health workers and birth attendants [35].

Similarly, PWD were requested to pay to get rehabilitation services from NGOs that should be free of charge [36]. A previous study in Sierra Leone [37] investigating lower limb amputees and service providers reported that rehabilitation services were underfunded, not prioritised, and called for implementing the Person with Disability Act [7,37]. Another study conducted in Sierra Leone investigating PWD experience accessing rehabilitation called for key stakeholders and policymakers to ensure that rehabilitation services are affordable, accessible, available, and acceptable [28]. Including persons with disabilities in policy dialogue, planning, evaluation, and research is a fundamental core of the UNCRPD increasing the possibility of targeting the needs of PWD and succeeding with policy implementation [38]. Our results indicate that ensuring the development of clear strategies for implementation of policies and inclusion of healthcare and adding rehabilitation services for PWD in the Free Health Care Initiative [34] would be one way of increasing access to healthcare, rehabilitation services, and assistive technology. In 2021, the Sierra Leone health insurance scheme including essential basic rehabilitation services has been initiated as a contribution to reach universal healthcare coverage.

Although efforts to put policies in place, stakeholders expressed a lack of action and allocated funds from the government and involved ministries. Recently in Sierra Leone, there has been a suggestion to introduce a Disability Trust Fund to fund programmes to implement the Persons with Disability Act [7]. Previous studies in South Africa [26] and several low-income countries [27] investigating barriers to implementing the UNCRPD similarly found that poor political priority and underfunding of policies were barriers. Perceived attitudes of politicians towards PWD influenced their prioritisation regarding budget allocations [26]. The stigma around disability and PWD created situations where politicians made decisions without understanding the needs of PWD [26]. Not including or consulting the disability community lead to PWD being included afterwards in policies instead of actually being a part of the policy development [26].

To implement the UNCRPD Articles 25 and 26 concerning healthcare and rehabilitation for PWD [5], the Sierra Leone Government needs to allocate funds and put policies into practice. However, Sierra Leone is a low-income country, with 57% of the population living in poverty [1]. The legal principle of progressive realisation means that countries only must realise human rights progressively and incrementally in accordance with their actual resources. The progressive realisation of the UNCRPD has been described as a practical principle that acknowledges real-world challenges in especially low resource settings [39,40] to avoid overburdening countries. The reasonableness review of violations of disability rights compels an assessment tailored to the specific national context, in this case, Sierra Leone and to the socio-economic conditions of PWD vs. those of the population without disabilities [41]. Therefore, it is important to prioritise what is most needed for PWD in Sierra Leone and to well coordinate and utilise the resources available.

Limitations were that three focus group discussions had to be carried out simultaneously, which led to one focus group discussion not being moderated by the authors. The strengths are the large number of participants (N = 37), stakeholders from various governmental institutions, NGOs, government and non-government service providers, and disabled person’s organisations, covering several geographical areas, providing a rich data material that was saturated.

Conclusions

Lack of coordination and leadership between the MoHS, and the MSWGCA and other organisations involved in rehabilitation and disability matters will continue to pose a problem unless political prioritisation to address disability matters increases. Ensuring governmental coordination and trust between donors and alignment of government and NGO programmes are key aspects for the sustainable provision of health and rehabilitation services for PWD. The accuracy of the prevalence data for PWD has been improved with the 2018 household survey, which can be better accepted by stakeholders who plan for PWD in healthcare and rehabilitation services. Local stakeholders need to actively take charge to renew efforts of improving the coordination of healthcare and rehabilitation services to ensure national coverage and equally distributed services. The government could expand the Free Health Care Initiative to the universal health coverage including rehabilitation services for PWD, which would increase access to healthcare, rehabilitation services, and assistive technology. The government of Sierra Leone could agree on a priority list of assistive devices to be included in the universal health coverage programme to ensure access to basic assistive technology for PWD. To implement the UNCRPD, the Sierra Leone government needs adequate funds and therefore needs to map out sources of funding to take further actions to implement the person with Disability Act.

Acknowledgements

The authors gratefully acknowledge the assistance of Humanity and Inclusion and the MoHS in Sierra Leone, which provided logistic support. Thanks to Uta Prehl at the technical rehabilitation unit, Sierra Leone, Humanity and Inclusion, for advice. We also would like to acknowledge the staff at the following rehabilitation centres and organisations for their help with participant recruitment for the focus group discussions: The National Rehabilitation Centre; Department Head, Bo Regional Rehabilitation Centre; Rehabilitation Department, Makeni Government Hospital; National Commission for Persons with Disability and Sierra Leone Union on Disability Issues. Thanks to Justine Aenishänslin and Katharina Dihm for assisting as co-moderators.

Disclosure statement

The authors report no conflicts of interest.

Data availability statement

The data used and analysed in the current study are available from the corresponding author on reasonable request.

Additional information

Funding

Funding for this research was provided by Sahlgrenska Academy, Gothenburg University, Sweden, the Faculty of Medicine, Lund University, and King Gustav V:s 80-years Foundation.