An Iceberg I can’t handle: A qualitative inquiry on perceptions towards paediatric rheumatology among healthcare workers in Kenya.

doi:10.21203/rs.3.rs-2080838/v1

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Research Article

An Iceberg I can’t handle: A qualitative inquiry on perceptions towards paediatric rheumatology among healthcare workers in Kenya.

https://doi.org/10.21203/rs.3.rs-2080838/v1

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Journal Publication

published 21 Jan, 2023

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Background

Delay in diagnosis and access to specialist care are huge problems for many children and young people with rheumatic disease in sub-Saharan Africa. Most children with symptoms of rheumatic disease present to non-specialists for care. There is an urgent need to understand and scale-up paediatric rheumatology knowledge and skills amongst non-specialist clinicians, to promote early diagnosis, prompt referral, and management.

Purpose

We evaluated the knowledge, attitudes and practices towards diagnosis and care of paediatric rheumatology patients among health care workers in Kenya.

Methods

We conducted 12 focus group discussions with clinical officers (third-tier community health workers) nurses, general practitioners and paediatricians across 6 regions in Kenya. Interviews were conducted on zoom, audio-recorded, transcribed, and analysed using NVIVO software.

Results

A total of 68 individuals participated; 11 clinical officers, 12 nurses, 10 general practitioners, 27 paediatricians and 7 others. Most (n = 53) were female, and the median age was 36 years (range 31–40 years). Half the participants (34 of 68) worked in public health facilities. Our study revealed gaps in knowledge of paediatric rheumatology amongst healthcare workers, which contributes to late disease diagnosis and poor management. Healthcare workers reported both positive and negative attitudes towards diagnosis and care of paediatric rheumatological diseases. Perceived complexity and lack of knowledge in the diagnosis and management, in addition to unclear health system clinical pathways, made all cadres of healthcare workers feel helpless, frustrated, inadequate and incompetent to manage paediatric rheumatology patients. Positive attitudes arose from a perceived feeling that paediatric rheumatology patients pose unique challenges and learning opportunities.

Conclusion

There is an urgent need to educate healthcare workers and improve health systems for paediatric rheumatology patients.

Paediatric rheumatology

health care workers

knowledge

attitudes

practices

Kenya

sub-Saharan Africa

Burden of Paediatric Rheumatology

Paediatric rheumatic diseases such as Juvenile Idiopathic Arthritis (JIA), are painful chronic potentially very disabling conditions associated with significant mortality, morbidity and reduced quality of life (1). Rheumatological diseases create huge burdens in high-, middle-, and low- income countries(2). In Europe for example, rheumatological diseases are estimated to cost more than 200 billion euros per year and are considered the most expensive diseases for healthcare systems (3). Regarding JIA for example, the worldwide yearly incidence is 8 per 100,000 children and most prevalence estimates range from 15 to 150 per 100,000 depending on geographic region and study methods (4) although more epidemiological data regarding paediatric rheumatic diseases are needed to fully understand the disease burden (4).

Globally, about 6–7 million children are affected by rheumatic disease, which causes significant mortality and morbidity among children (1). It is estimated that approximately 30% of these children live in Africa (1, 5–7). Despite this, only 10 paediatric rheumatology centres exist across the 54 countries in Africa (8). This is representative of other resource-limited countries including India, where there are 15 paediatric rheumatologists for 444 million children (9, 10). In contrast, the United States for example, it is estimated that there are 266 paediatric rheumatologists for a population of 67 million (11) .

Africa has 25% of the world's rheumatic disease burden but only 2% of the world's human resources for clinical care (12). The paediatric rheumatology burden in Africa is likely underestimated given the paucity of rheumatologists among other factors (13). Inadequate education, socio-cultural beliefs and limited access to care aggravate the situation (14–17).

The recommended ratio of paediatric rheumatologists in each population ranges from 1:300,000 to 1:500,000 (18). Thus, with an estimated population of 48 million, Kenya should have between 100 and 160 paediatric rheumatologists. In stark contrast, currently there are only 2 practicing paediatric rheumatologists in Kenya (8). Since Africa is currently estimated to have 15 practicing paediatric rheumatologists, the Kenyan scenario is much better than many other countries in Africa (8).

Knowledge, Attitudes and Practices towards Paediatric Rheumatology

Recognition, diagnosis and management of paediatric rheumatic diseases poses challenges due to many factors (19). Non-paediatricians have limited training and understanding of growth, puberty, evaluation of paediatric pain, clinical care pathways, use of anti-rheumatic drugs in children, and the art of dealing with parents, school problems and transition into adulthood (7, 18–24).

Knowing healthcare workers’ understanding, attitudes and perceptions towards paediatric rheumatic diseases is key to design and implement effective interventions (25). We thus set out to describe the knowledge, attitudes, and practices of healthcare workers towards paediatric rheumatic diseases in the Republic of Kenya.

Our study incorporated the Consolidated criteria for REporting Qualitative studies (Appendix 1).

This was a qualitative descriptive study of 12 focus group discussions conducted between September and November 2021 among 68 healthcare workers (HCWs) drawn from clinical officers, nurses, general practitioners, and paediatricians. To have a wide variation of views, the HCWs were recruited from six regional branches of the Kenya Paediatric Association including Nairobi, North Rift, South Rift, Central, Coast and the Lake Region.

Each cadre of healthcare workers had 3 focus groups conducted with five to eight participants. The primary investigator, a paediatric rheumatologist (AM) in Kenya was trained by and worked with experienced Kenyan qualitative researchers (PM and AL) throughout each stage of the focus groups.

Participants were recruited purposively by the study principal investigator (AM) using a two-stage sampling technique. The first phase was purposive sampling where the principal investigator contacted HCWs to ascertain who was interested. The second phase was snowball sampling where initial recruited participants were requested to recommend at least 3 members for each type of care-provider type, from across the country i.e. Nairobi Region, North Rift Region, South Rift Region, Central Region, Coast Region and Lake Region.

Inclusion criteria for the participants enrolled were age of 18 years or older and being licensed to practice. Since English is the official language of instruction in Kenya’s HCW training, language was not a deterrent to participation. Participants were excluded if they were unable to dedicate 45–60 minutes of their time for the focus groups, or incomplete submission of consent forms.

A moderator’s manual was prepared, and pilot tested to ensure appropriateness and format of content. Active consenting process was followed. Information sheets (Appendix 2) and consent forms (Appendix 3) were emailed to those participating in the interviews in advance via email, which were then returned via email to the investigating team upon completion. Information sheets provided information on the study objectives, processes, confidentiality, data protection and the use of audio-recorders. The focus groups were conducted in English via Zoom Communications (copyright 2021) between September and November 2021. Each was recorded using the Zoom record functionality.

The data was anonymized and transcribed per verbatim. Notes of the focus group proceedings were used to cross-check for consistency. All forms, recordings and transcripts were managed according to ethical guidelines.

Data Analysis

A reflective thematic analysis was conducted using NVIVO 12 software (26). Data familiarization and initial coding was done by AM and PM. A social scientist (AL) conducted a separate coding and analysis of a sub-set of transcripts. This followed a series of iterative meetings among the three researchers where linkages in themes were identified, codes were merged into categories and themes. In the final stage of the data analysis, we conducted a “member checking’(27) process to check the accuracy of our findings. We shared our findings with some study participants from each cadre, to ascertain if our findings were a reflection of their actual views and experiences.

Ethical Considerations

Ethical approval was obtained from the AKU-EA Institutional Research Ethics Committee (Ref 2021/IERC-50(v2)) and a NACOSTI research permit (NACOSTI/P/21/11789). All participants provided written informed consent to participate in the study.

Participants

Very few of those invited (1 paediatrician and 3 general practitioners) declined to participate in the study due to lack of time and paucity in interaction with paediatric patients respectively. Among the 68 participants, three-quarters (53 of 68) were female and the mean age was 36 years (range 31-40 years). Half of the respondents (34 of 68) work in the public sector. Participants were enrolled across 20 different counties, including from the Nairobi region (n=12; 18%), Lake Region (n=16; 24%), North Rift region (n=7; 10%), South Rift region (n=12; 18%), Coast region (n=8; 12%) and Central region (n=13; 19%). Participants included 11 (16%) clinical officers, 12 (18%) nurses, 10 (15%) general practitioners, 27 (40%) paediatricians and 7 (10%) others (research nurse, emergency physician, family physician, general physician, sleep coach, cardiac technologist, neonatologist). Among the participants, 17 (25%) were diploma holders, 26 (38%) had a Bachelor’s degree and 24 (35.3%) had a Master’s degree in their respective fields of medicine.

As shown in Table 1 below, our study unveiled 3 themes;

1. HCWs have a variable understanding of paediatric rheumatic diseases.

2. There is an interplay between lack of knowledge and health system factors which contributes to late diagnoses and management of paediatric rheumatic diseases.

3. The complexity and chronicity of paediatric rheumatic diseases influence HCWs’ attitudes

Table 1

Codes, categories, and themes
	Codes	Categories	Themes
1	Description of paediatric rheumatic diseases o Described as autoimmune condition o Affects joints and musculoskeletal system o Chronic in nature Professional’s perception of HCWs knowledge levels o Inadequate knowledge of paediatric rheumatic diseases o Misunderstanding of rheumatological disorders o Misunderstanding of age groups affected	1. Adequate understanding of the disease by professionals 2. Limited knowledge of the disease among HCWs and the public.	Variable understanding of paediatric rheumatic diseases
2	HCWs perception towards management o Variation in symptoms o Understanding symptoms o Missed symptoms o Symptom management o Unclear referrals o Referred on to others HCWs feeling inadequate	1. Late diagnosis and poor disease management 2. Health systems factors are a barrier to early diagnosis o Lack of clinical pathways o Referred on to others	Interplay between lack of knowledge and health system factors contributes to late diagnoses and management
3	Attitudes of HCWs towards PRDs o Healthcare workers felt frustrated o Healthcare workers felt frightened and immobilized o Paediatric rheumatic diseases are complex, uncommon, not well known o Complexity of the diseases leads HCW to look up answers	1. Both negative and positive attitudes reported.	Complexity and chronicity of the disease influenced HCW attitudes

1. Varied understanding of paediatric rheumatic diseases

The first theme emerging from our analyses indicates a varied understanding of paediatric rheumatic diseases. Our participants, who were clinical professionals, demonstrated a good understanding of paediatric rheumatic diseases, describing what these diseases are, including symptoms and affected parts of the body. Nonetheless, they reported a lack of knowledge and awareness among healthcare professionals, particularly among non-specialists.

(a) Adequate understanding of the disease by professionals.

In the following quotes, participants show some understanding of paediatric rheumatic diseases:

What I know is that paediatric rheumatology are basically autoimmune conditions that affect the paediatric patient and most of them are characterized by joint pains. Most of them affect the joints, but they can affect structures or body organs outside the joints and all of them...

50 year old Female Clinical officer

I believe they are usually chronic illnesses in children that sometimes will affect their musculoskeletal system like the joints, the long bones, and most of the times it will present with pain and sometimes the pain could be debilitating, they are not able to perform like walking well, playing…

32 year old Male Clinical Officer

Others are deforming, life-threating together with others that are moderately severe. They do occur in paediatric age but that does not mean it does not occur in the other ages.... Others also have autoimmune components that means the body probably fights its own tissues

37 year old Male General Practitioner

(b) Limited knowledge among non-health care specialist and the public

Knowledge about paediatric rheumatic diseases was still described as limited among non-specialists.

Personally, speaking from a personal experience, I think rheumatological disorders are not well known or widely known more so among non-specialists like us. So you find that there are a lot of gaps and when you get a patient who has a rheumatological disorder, before you get to that diagnosis, you will have done almost everything [other medical tests]…

24 year old Male Clinical Officer

I think it is a specialty that is unknown to many…not many people know whether paediatric rheumatologists even exist.

27 year old Male Clinical Officer

Participants commented that knowledge was lacking among the public. For example, participants reported how parents and caregivers brought their children when the disease was at an advanced stage, which they attributed to their [parents/caregivers] lack of knowledge.

Most of the children ...are always brought by parents at a rather later stage of the disease already out of the parents not knowing .... So, we have not really been able to do much other than pain control and physiotherapy ...

33 year old Female Clinical Officer

Our study also found that, due to limited knowledge among the public, some rural communities may resort to using herbal medicine without seeking clinical care, which may delay diagnosis.

…from the community….we have had issues with use of herbal medicine especially from mothers-in-laws and all that...I think they have a negative influence towards these children. Many are those who arrive already in renal failures and all that...kidney injuries out of exposure to a lot of herbal intoxication in the name of treatment and in the name of straightening their muscles…

28 year old Female Clinical Officer

2. Interplay between lack of knowledge and health system factors contributes to late diagnosis and mismanagement

(a) Late diagnosis and poor management

Data suggests that HCWs’ limited knowledge had a direct bearing on the timely diagnosis of paediatric rheumatic diseases. Symptoms were described as complicated thus leading to the late diagnosis. HCWs insufficient knowledge implied that on many occasions, they confused paediatric rheumatic disease symptoms with infections ultimately resulting in diagnostic delays.

…and I think because most of the paediatric rheumatological disorders present with a fever, one thing that everybody jumps to is usually sepsis. You think it must be an infection somewhere more so being that the patient is paediatric…

24 year old Male Clinical Officer

… most of the time our index of suspicion is maybe more focused on infections, so we tend to miss them but if they are detected early before the disease progress, prognosis is usually good.

36 year old Male Clinical Officer

In addition, HCWs were described as lacking knowledge to distinguish between rheumatology and orthopaedic conditions. Similarly, delayed diagnoses may also arise from HCWs assumption that rheumatic diseases affect only older people and not children. The following narratives highlight some of these challenges.

Initially [there was] big confusion between paediatric rheumatology and orthopaedic. Often children were being misdiagnosed with orthopaedic conditions.… There is misunderstanding of these conditions, as we believe that rheumatoid conditions are for the old.

43 year old Female Nurse

…We experience a lot of problems you find that you diagnose a child with arthritis, but you find your colleagues challenging you that arthritis is not for children. Those are negative attitudes from our colleagues

38 year old Male Clinical Officer

...But from where I sit, there was a time I was suspecting arthritis in a 4-year child but it took the lab guy by surprise that I am sending the child for lab investigations…they will take that such arthritis or bone infections are for the elderly. It is less common in children.

27 year old Male Clinical Officer

Even when paediatric rheumatic disease is correctly diagnosed, some HCWs may not be confident if they got the diagnosis and management correct, implying that chances of mismanagement are high.

I have seen probably a few cases in the clinic, which I suspect some rheumatological conditions ... sometimes it is not even very clear what exactly we are managing, we would just think about something and then treat it that way and just hope that the patient improves and most of them do improve....

27 year old Female General Practitioner

Lack of clarity on management was augmented by lack of protocols. HCWs noted that they had never seen a protocol on how to manage these diseases.

…like everybody is not so sure on what to do since I've not seen a protocol, no. When there is a protocol, you know when it’s like this, you do this, this, this, this, but now there is no protocol, everybody is not so sure of the specifics that needs to be done.

48 year old Female Nurse

Lack of protocols and proper guidelines may make it difficult to follow up children diagnosed with rheumatic diseases in the system as exemplified below.

…we hardly do follow-up on those children when they go away, so I'm not sure about the prognosis because I would love to know and hear that they are growing well, and that they live long.

43 year old Female Nurse

In addition, participants observed limited opportunities such as continuous medical education to improve their knowledge.

…I would say that it is one of the disciplines whereby I haven't even heard of a CME (continuing medical education) of what is to be discussed about paediatric rheumatology and therefore it is one of the forgotten disciplines.

30 year old Female General Practitioner

(b) Health system factors a barrier to early diagnosis

Lack of clinical pathways: The lack of knowledge among healthcare workers interplays with lack of clear clinical pathways, implying that many children with paediatric rheumatic disease may initially be treated for other diseases common in Africa, like malaria and other infectious diseases. Furthermore, this is amplified by the lack of clear care pathways in the current Kenyan health system, which results in late diagnosis and poor management. Health care workers are not adequately equipped with the right knowledge, and hospitals lack the right tools and standard operating procedures, impeding timely diagnoses.

It’s something that is not so common though … usually, we get these conditions especially referrals from peripheral health facilities, ... the child has been maybe mismanaged, managed for malaria, the child came with joint pains managed for malaria without even testing whether the BS [blood slide for malaria] is positive. So, by the time they come to the bigger hospitals, they are usually a bit late.

50 year old Female Clinical Officer

I think I would say, the difficulty is in getting the diagnosis right, I feel uncomfortable...I would really feel uncomfortable making a final decision that this is what it is most of the time for these conditions. That's tough.

27 year old Female General Practitioner

Children pushed along in the system to other physicians, due to lack of clinical pathway: Our information from participants suggests that lack of clinical care pathways may have a far-reaching consequence for children with rheumatic diseases. It seems clear that the current health care system does not apportion responsibility and accountability, leaving the children vulnerable in the hands of inadequately trained health care professionals who ‘push’ them in the system without making decisions.

I would say, as well for my colleagues, it's that tough. And just like my colleague R2 said that if you have a rheumatologist that you know, you just kinda (kind of) push them that side so that you don't have to really think a lot about making that decision of what exactly it is. I think it is such a difficult thing to come to a final diagnosis.

27 year old Female General Practitioner

...like the other day I had a suspicion of SLE (systemic lupus erythematosus) and I was like, I have never seen SLE in kids and there was an excitement of this …but I was very quick to just do the baseline investigations and push forward to my seniors.... We would feel like we just need to do the bare minimum...just keep her alive until the seniors are able to attend to her…

29 year old Female General Practitioner

…apart from giving them the junior aspirin, …… it’s a scope that belongs to another person or another level. …So whenever I see a child, I always feel like, even if I see her now, I'll push to another person, beyond my scope.

55 year old Female Clinical Officer

Then the fact that to reach the diagnosis of maybe rheumatoid arthritis, most of the time, the patient has gone through so many guess work from different doctors, from different places by the time they are arriving at paediatric rheumatology clinic, they've been mismanaged all over.

53 year old Female Nurse

3. Complexity and chronicity of paediatric rheumatic diseases influence HCWs attitudes

Our data suggest that HCWs’ perceived complexity of the disease influenced their attitudes towards the disease. When HCWs felt disempowered to deal with the disease, they felt frustrated, scared and stressed as seen in the following quotes.

I think the word I can use is that of frustration. When you are dealing with a condition that you are not really empowered to diagnose and possibly initiate management, the best descriptive word is frustration and then you meet the client that has it because they need care that they ought to get even if you had good ideas…

52 year old Male Clinical Officer

I find it quite stressful when I handle patients with a rheumatological disorder especially those with very severe joint pains and very young patients. … It’s usually very frustrating especially when the pain is not going away for the parent, the doctor, the nurses, the other healthcare workers because babies will just be screaming in the ward.

35 year old Female Paediatrician

For me I think it’s a scary condition. That's what I've seen. You just told us to say attitude, to me it’s scary. I think it’s a complicated disease that if it’s not handled, things can go south, so its scary disease for me.

58 year old Female Nurse

Some participants did report having positive attitudes towards paediatric rheumatic diseases. As illuminated in the quotes below. This broke the monotony of seeing patients with contextually common illnesses such as pneumonia and diarrheal diseases. It also caused the healthcare workers to search for new knowledge, an experience which they perceived positively.

I think I'm one of those people who love a mystery or something that really gets you scratching your head and you find that most of these children will have very non-specific symptoms which will involve a lot of reading, a lot of research looking at what they have and comparing it to other so... I'm actually very fascinated about that because they are conditions that they are very intricate, like you need to be very careful. You need to be very accurate or you need to be very... You look at it very critically and make the best decisions because it involves a very high level of knowledge when it comes to diagnosis and even management, so I actually quite enjoy managing patients who present with rheumatological conditions. It beats the monotony of the everyday pneumonia or diarrheal diseases which are usually very common.

24 year old Male Clinical Officer

Some HCWs saw this as an opportunity to learn something new.

I would say it's an interesting subspecialty. There is always something new to learn about it. The other thing, sometimes in terms of, when I make a diagnosis of a rheumatic disease, sometimes, it makes me a little bit kind of not sympathizing but more of empathy towards the patient…

27 year old Female General Practitioner

Our study revealed varied understanding of paediatric rheumatic diseases among HCWs in Kenya. The complexity, chronicity of paediatric rheumatic diseases, and interplay between lack of knowledge and health system factors, all impacted on the perceptions of healthcare workers towards paediatric rheumatic diseases. Limited experience, lack of training of paediatric rheumatology by healthcare workers, further impacts negatively on their perceptions towards paediatric rheumatic diseases. Some of these negative consequences were also highlighted in a review by Lewandowski (9) .

Rheumatic diseases are often difficult to understand (28). Our study highlighted the uncertainty experienced by many non-specialists upon encountering paediatric rheumatic disease patients. Our findings are congruent with the work of Jandial et al who highlighted a lack of confidence among general practitioners in paediatric musculoskeletal (MSK) clinical skills in United Kingdom (28). Educational needs for healthcare practitioners vary and should be tailored in accordance with individual characteristics such as gender, age, educational background, social context and disease duration (28).

Paediatric rheumatology education is still sub-optimal in many regions across the globe (28, 29). Trainees in primary care have previously reported that training in paediatric MSK assessments is inadequate, leading to poor performance (27). Furthermore, exposure to paediatric rheumatology training is limited to centres with paediatric rheumatologists (27). Formal instruction in paediatric MSK assessment within paediatric residency programs (27) or undergraduate programs is limited (27).

Some strategies that may be employed to bridge the gap in knowledge include mass education of the populace in different languages across various media platforms. Other strategies to consider include availing routine information in healthcare facilities and educating community health workers who would then act as ambassadors within the community for paediatric rheumatic disease patients.

The interplay between lack of knowledge and health system factors has an impact on the inconsistent practices and clinical care offered, and adversely influences patient outcomes (30). Our study highlighted that frustrations experienced by healthcare workers (knowing that the care they provide is sub-optimal) leads them to refer patients to other health care providers. Barber and colleagues highlighted that inadequately treated paediatric rheumatic disease leads to negative psychological impacts on patients and healthcare workers (31). This state of helplessness puts the healthcare worker at risk of burnout, which would further compromise care to the patient. Strategies to help empower healthcare workers include mass education and sensitisation. Screening tools to help them accurately detect suspected cases may help minimize their feeling of inadequacy.

Health care access is a complex issue with many contributing factors (32). Availability and accessibility are just part of a bigger picture that evidently affect paediatric rheumatology referral decisions among healthcare workers (32). Due to limited resources, we must question whether improving care for children with paediatric rheumatic diseases should focus on expanding the reach of care or enriching current care models (32). As clinical care models are implemented, further research is needed to better objectify the opportunity cost (32).

Our study highlighted that many healthcare workers often treat paediatric rheumatic disease manifestations as infections given that they share similar clinical features such as fever. In her review, Lewandowski reiterated this challenge of differentiating rheumatic disease from infection (9). Diseases, such as systemic JIA and systemic lupus erythematosus (SLE) may be managed as malaria or Human Immunodeficiency Viral disease, given overlapping of presenting rheumatic disease symptoms with these infections (9). Matsumoto and co-workers highlighted other challenges that our participants also face in their clinical practice, such as inability to perform a physical exam, the perceived high cost to institutions for management, and time constraints (33). As a result, some of our participants admitted to “pushing” patients to other health care providers, to avoid dealing with these challenges.

Increased recognition of rheumatic disease by general practitioners is essential for addressing delayed diagnosis (9). Exposure to MSK training during undergraduate and postgraduate training will help bolster confidence in assessing rheumatic disease and improve timely referral and diagnosis (9). The local healthcare provider’s recognition of rheumatic disease should be accompanied by access to diagnostics, and prompt referral to a rheumatologist as needed (9). In addition, training of future generations of paediatric rheumatologists is necessary to close workforce gaps (9).

Delivering the ‘right care, at the right time, in the right place, by the right people’ is a challenge for all healthcare services, but particularly so for subspecialties, such as paediatric and adolescent rheumatology, where inequities in access to specialist care are particularly problematic (34).

In our study, nurse participants expressed that pain control was an important role for them. Rheumatology nurses play a fundamental role in the care of rheumatology patients (35). A study in United Kingdom (UK) involving 200 nurses revealed drug monitoring, education, counselling of patients, ordering investigations, drug administration and research are performed by nurses (35). The role of rheumatology nurses has expanded over recent years and includes running specialist clinics, patient education, patient assessment and treatment (15). The role of the rheumatology nurse is likely to expand soon to include medication prescription (15).

Specific attributes identified as being necessary for nursing competence by Goh et al include: knowledge and understanding of rheumatic diseases; drug therapy; good communication skills; understanding roles and working effectively as part of a multidisciplinary team; physical examination; teaching, research; organizational skills; and the interpretation of investigations (22). Factors that could enhance their role include: attendance at postgraduate courses; obtaining further qualifications; active participation in the delivery of medical education; training in practical procedures; protected time and resources for audit and research; formal training in counselling; and implementation of nurse prescribing (22).

The practice of rheumatology requires advocacy and education of the public; development, sensitization and implementation of diagnostic and management algorithms, strengthening of health systems to support definitive, and supportive care for paediatric rheumatology patients in order to have optimum patient outcomes (21).

Due to rising awareness of the complexity and chronicity of paediatric rheumatic diseases, there is greater demand for better health care (36), providing further impetus to improve the paediatric rheumatology care in Kenya. The large patient pool available in Kenya is an untapped clinical resource that could provide the basis for teaching and patient-oriented research. International collaborations with established paediatric rheumatology centres across are needed to develop world-class centres of excellence in disease management and research in Kenya.

One way to address these needs is to introduce modules on paediatric rheumatology in undergraduate and postgraduate training, so that non-rheumatologists can recognize and manage common paediatric rheumatic problems and refer children to specialists early. Kenya is a hub for information technology, and the government's desire to link all medical colleges by a telemedicine network could provide an opportunity to disseminate knowledge across this vast country, even with limited trained manpower. Paediatric rheumatology in Kenya is at a crucial juncture where, if opportunities are maximized, could lead to significantly better care for children with rheumatic diseases in the region and across the African continent.

Limitations

We did face challenges in our study. Some participants had poor internet connectivity, which led to interrupted transmission of their contributions to the discussion. Also, due to the nature of their work, some participants were not able to stay to the end of the virtual focus groups or log on in time due to emergency cases that they had to attend. However, we had a relatively large number of participants and focus groups, and the content of the discussions was fairly homogeneous. Thus we are relatively confident that our research covered the major relevant themes.

Very few of those invited (1 paediatrician and 3 general practitioners) declined to participate in the study, which is a strength. Regardless, there may have been under-representation of certain cadres of healthcare workers from some regions. Regarding conduct of the focus groups, we tried to minimize bias as much as we could by using standardized procedures and the same moderators/co-moderators for all focus groups.

Future Directions

Our study has laid the foundation for qualitative formative work to better understand HCWs perceptions towards paediatric rheumatic diseases in Kenya. Moving forward, we need a better in-depth understanding across the country. This may entail a larger survey in rural and urban areas piloted among community health workers treating those who are marginalized.

It is also equally important to engage with key stakeholders in the health sector on how to best integrate clinical care for pediatric rheumatology patients. The use of ethnographic methods can be explored to analyze the processes of transfer, treatment and follow up of paediatric rheumatology patients. These strategies are proposed in order to help strengthen the health system to cope with the demands of paediatric rheumatology patients.

In conclusion, we are the first to explore the knowledge, attitudes and practices of healthcare workers in Kenya, regarding paediatric rheumatology. Our work forms a foundation upon which hopefully an intervention can be built to meet the educational and clinical needs of health care workers, their patients, and affected families.

Contributors

AM,SB ,AN,HF and SL developed the study design. AM, PM, AL carried out the focus gruops and analyzed the data. All authors critically reviewed the drafts, and approved the final version for submission. All authors had access to the primary data, take responsibility for the accuracy and completeness of the results, and had final responsibility for the decision to submit the paper. All authors accept responsibility for the content of this paper.

Funding

This study was funded by the University Research Council Grant Fund from the Aga Khan University

Data sharing

All de-identified data will be available on reasonable request to the corresponding author within a reasonable timeframe.

Declaration of interests

We declare no competing interests.

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An Iceberg I can’t handle: A qualitative inquiry on perceptions towards paediatric rheumatology among healthcare workers in Kenya.

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Abstract

Background

Purpose

Methods

Results

Conclusion

Introduction

Burden of Paediatric Rheumatology

Knowledge, Attitudes and Practices towards Paediatric Rheumatology

Methods

Data Analysis

Ethical Considerations

Results

Discussion

Limitations

Future Directions

Declarations

References

Supplementary Files

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