The authors have declared that no competing interests exist.
Conceived and designed the experiments: ND QD MM EM DL RH. Performed the experiments: DN ND. Analyzed the data: ND QD DN RH. Wrote the paper: ND. Critical review of article drafts: DN QD MM EM DL RH.
High mortality burden from Acute Bacterial Meningitis (ABM) in resource-poor settings has been frequently blamed on delays in treatment seeking. We explored treatment-seeking pathways from household to primary health care and referral for ABM in Malawi.
A cross-sectional qualitative study using narrative in-depth interviews, semi-structured interviews and focus group discussions.
Adults and children with proven and probable acute bacterial meningitis and/or their carers; adults from urban and peri-urban communities; and primary health care workers (HCW).
Queen Elizabeth Central Hospital (QECH), urban and peri-urban private and government primary health centres and communities in Blantyre District, Malawi.
Whilst communities associated meningitis with a stiff neck, in practice responses focused on ability to recognise severe illness. Misdiagnosis of meningitis as malaria was common. Subsequent action by families depended on the extent to which normal social life was disrupted by the illness and depended on the age and social position of the sufferer. Seizures and convulsions were considered severe symptoms but were often thought to be malaria. Presumptive malaria treatment at home often delayed formal treatment seeking. Further delays in treatment seeking were caused by economic barriers and perceptions of inefficient or inadequate primary health services.
Given the difficulties in diagnosis of meningitis where malaria is common, any intervention for ABM at primary level must focus on recognising severe illness, and encouraging action at the household, community and primary health levels. Overcoming barriers to recognition and social constraints at community level require broad community-based strategies and may provide a route to addressing poor clinical outcomes.
More than one million cases of acute bacterial meningitis (ABM) amongst adults and children occur annually in sub-Saharan Africa (SSA)
Since length of time between onset of symptoms and development of life-threatening illness in ABM is usually short, early recognition and prompt treatment are vital for effective management. In Malawi, it is estimated that 37% of illness episodes are managed at home without external advice and an additional 16% seek help from traditional healers
Whilst ABM has been the focus of much clinical research in resource-poor contexts such as Malawi
The study was approved by the Liverpool School of Tropical Medicine (LSTM), Research Ethics Committee in the UK, and the University of Malawi College of Medicine, Research Ethics Committee (COMREC) in Malawi (approval number: P10/09/832).
All participants gave written informed consent (or a witnessed thumb print if illiterate) to take part in the study and to use anonymised data for publication.
We conducted a cross-sectional qualitative study in the district of Blantyre, Malawi, recruiting from three groups: since the majority of those defined as having probable meningitis have the same outcome as those defined as having proven disease
For the ABM group, we recruited participants (patient/carer pairs) for in-depth narrative interviews identified as adult and paediatric hospital in-patients between March and November 2010 using a purposive sampling framework based on patient outcomes since we expected differences in treatment seeking behaviours across adults and children
For the community group, we recruited 96 members into 8 focus group discussions (FGDs) from established community-based social groups such as women’s or microfinance groups, identified and approached with assistance from community leaders within one urban and one peri-urban ward in Blantyre, Malawi.
For the HCW group we conducted semi-structured interviews (SSI) with 20 private and government primary and community health service workers stratified by cadre proportional to the number of staff in the same wards.
Interviews with patients and carers were conducted by an experienced female, Malawian Social Scientist who had not worked in the hospital previously (DN). These began with an open question asking the participant to describe the experience of meningitis and provide a treatment seeking narrative. This was followed by a guided set of topics to identify critical incidents
Patient/carer interviews lasted on average 1 hour, SSIs on average 45 minutes, whilst FGDs took place over 2 and ½ hours and were broken up with refreshments. Interviews with patients and carers and FGDs were conducted in Chichewa, recorded, transcribed verbatim and translated into English. Interviews with HCW were conducted at primary health facilities in English, recorded and transcribed. All transcripts were checked for quality and accuracy by those who conducted the interviews.
Using thematic content analysis, we developed an initial coding framework based on a combination of research questions and a grounded theory approach to inductively document emerging themes from the data by independently coding 2 patient/carer interviews, 1 FGD and 1 SSI with health providers, triangulating through multiple and independent coding (ND & DN). The coding frameworks were compared, refined and updated during regular meetings as coding of transcripts progressed using NVIVO 9.0 (QSR International, Melbourne, Australia) for qualitative data analysis. We used this thematic coding to guide the development of a treatment-seeking framework to explore and compare individual cases for each theme using constant comparison approaches
We recruited 43 ABM patient/carer pairs during stage 1 and interviewed 17: five carers of children following a positive outcome; four carers of children following a negative outcome; four adults and carers following a positive outcome; and four carers of adults following a negative outcome. Reasons for non-participation included loss to follow-up in the community or participants having changed their minds. Attempts to follow up recruited pairs continued according to recruitment date until data saturation was reached
Age | Sex | HIV status | Outcome | |
Paediatric | 0–5 | female | n/k | Died |
0–5 | female | n/k | Discharged with disabilities | |
0–5 | male | n/k | Discharged | |
0–5 | female | n/k | Discharged | |
0–5 | male | n/k | Discharged | |
0–5 | male | n/k | Discharged | |
Adult | 31–40 | male | positive | Died |
21–30 | male | n/k | Died | |
16–20 | male | negative | Discharged | |
21–30 | female | positive | Discharged | |
21–30 | female | n/k | Discharged | |
21–30 | male | negative | Discharged | |
Paediatric | 0–5 | female | n/k | Discharged with disabilities |
0–5 | female | n/k | Died | |
0–5 | female | n/k | Discharged | |
Adult | 21–30 | female | positive | Died |
31–40 | male | n/k | Died | |
31–40 | male | n/k | Died |
We identified several themes that ran through each of our patient, community and HCW groups related to recognition of meningitis and subsequent action.
HCWs claimed knowledge of the signs and symptoms of meningitis but also recognised difficulties in diagnosis. Misdiagnosis with malaria occurred in seven of nine and five of eight children and adult illness episodes respectively.
Recognition at household level focused on ability to identify when illness is severe enough to warrant treatment seeking rather than ability to recognise signs and symptoms of ABM. However, when discussions focused on meningitis explicitly, this was recognised as a dangerous disease, particularly associated with stiff neck.
Patients and carers had not recognised the illness as meningitis until diagnosed in hospital in all but two cases; in these, prior experience led to earlier suspicion of meningitis following neck retraction.
Community discussions centred on specific symptoms associated with ABM, particularly focusing on severe illness: fever, vomiting, severe headache, stiff neck, drowsiness/vacancy, confusion/delirium, rash and seizures/convulsions. Of these, all groups defined seizures/convulsions as most severe.
Seizures were often associated with malaria which delayed timely recognition and treatment seeking since malaria was often treated at home with purchased anti-malarials to avoid long waiting times in primary health centres. Seizures were also associated more directly with epilepsy as an innate, traditional illness caused by ‘internal worms’ which was described as requiring traditional treatment, and delayed onset of biomedical treatment seeking.
Severe headache was not considered as real illness and home-based remedies were sought according to perceived cause: painkillers if biomedical & traditional medicine if indigenous illness.
Severity was often assessed by the effectiveness of symptom control with popular medicines. Less severe illness could be treated with traditional medicine but more severe treated with biomedicine.
When patients and carers recounted illness narratives of meningitis, discussions featured general references to recognition of illness severity. References commonly related to the extent to which ‘normal’ social life was sufficiently disrupted by illness to warrant treatment seeking. In
Recognition | Social group | Key quotes | Source |
Lack of mobility | Adults and infants | ‘And you may see a person looking very weak maybe he is laying down butno power/strength to get up, and he cannot walk on his own.’ | FGD Male Youth, Peri-urban ward |
‘But that day, he could not stand up when he tried to, he could not sit down.So I knew that that day, he was seriously ill’. | Female widow of husband with probable meningitis | ||
‘So when he reached a point where he became very sick, he failed to sit down,he failed to stand up. It’s when he (neighbour) suggested “this person shouldnot stay here”. Yes, I can say the severity of the illness was what made us go’. | Female widow of husband who died of proven meningitis | ||
Inability to work | Adult men | ‘So from there he was still working but it reached a point that he couldn’twork like his strength was reducing … so when he started being weak likethat it was when he changed from there it was when he was picked up by otherpeople who work at Queens’ | Father of young man who died of proven meningitis |
Inability to performusual domestic role | Adult women | ‘What concerned me was that the woman is sick, |
Husband of woman who survived proven meningitis |
Refusal to eat | Adults and infants | ‘: What worried you about this disease? R: Because she didn’t eat anything,she refused’ | Mother of infant survivor of proven meningitis |
‘She was not receiving the food that it is why we noticed that she was seriouslyill, let’s take her to the hospital’ | Husband of female survivor of proven meningitis | ||
‘I: Did you ever think that the child was seriously ill? R: Yes I: How? R: Sometimeshe would refuse to suck milk from the breast, just crying’ | Mother of infant survivor of proven meningitis |
We identified social and economic barriers to initiating appropriate and prompt action following recognition of severe illness within the household, as well as perceptions of poor service response based on previous experiences with healthcare professionals.
At the household level recognition of illness severity was not sufficient in itself for the patient or carer to initiate treatment seeking. This was rarely initiated without some form of collective decision-making and social validation either from senior household members or peers within the broader community. The type of validation depended on a combination of the gender and social position of the carer and patient (
Patient | Carer | No. of cases | Type of validation before treatment seeking |
Adult male | Adult female | 2 | Wives seek confirmation of severity by husband himself, adult relatives or neighbours. |
3 | Male patients make decision alone whether to seek treatment. |
||
Adult female | Adult male | 1 | Husband makes decision with extended family in matriarchal society |
1 | Husband makes decision alone as socially alienated in wife’s village |
||
Infant | Adult female | 8 | Mothers seek confirmation of extended family and friends more often than husbands or fathers |
Infant | Adult male | 1 | Father made decision alone since fails to trust neighbours in wife’s village |
Adult female | Adolescent daughter | 1 | Daughter sought confirmation from neighbours realising that confirmation from father/husband would delay treatment which saved the mother‘ |
Seeking treatment following recognition of severe illness was often constrained by poverty and lack of funds for transport.
Reliance on others to fund emergency treatment reinforced the need for social validation of illness severity. Delays could result if illness was not recognised as severe enough to warrant expenditure.
In households where the man was the main income–earner, he was also largely in charge of household expenditure and was often reticent to spend time and money on illness unless it was severe. This often delayed treatment seeking for adults (see
In contrast, women as the main carers often managed child illness, and decisions were regularly made without consultation with the father and treatment initiated once resources were obtained. Success in accessing resources was dependent on social validation (see
Decisions to seek conventional medical treatment during early stages of illness were clearly affected by perceptions of the quality of service provided through the primary health system. Reports amongst primary health workers and patients highlighted a lack of quality care with long waiting times, presumptive diagnosis without examination, verbal mistreatment and erratic drug availability.
Patients were frequently diagnosed initially with malaria and prescribed anti-malarial medication. In most cases patients were not told to return if symptoms persisted, often prompting recourse to alternative service providers. HCW interviews revealed that it is not uncommon for patients to be blamed for persistent illness, especially mothers who returned with sick children, on the assumption that they had failed to give the child the prescribed medication.
Women were often habituated to these conditions through regular attendance at under-5 clinics and therefore sought treatment for infants promptly at government services. However men in particular and adults in general often chose to remain at home, self-treating early stage symptoms as malaria, until symptoms were severe enough to circumvent primary clinics and seek emergency care at hospital.
We have shown the complex social environment within which people recognise and respond to severe illness in a SSA setting, providing insights into the broader context of health seeking behaviour. Our findings reflect studies elsewhere that highlight the importance of gender and social position in treatment seeking decisions made within the complex dynamics of households and communities
Responses to ill health in families and communities are informed by what has been termed a lay epidemiology of illness
We found that real or perceived inadequacies in primary health care impact on decision making and treatment response to severe illness
We based symptom recognition on cards developed by the Meningitis Research Foundation for advocacy purposes in the UK. Whilst haemorrhagic rash is rarely observed in Africa, all other symptoms related to meningitis present similarly across contexts. Furthermore, although there are clearly cultural differences, there are some striking similarities between our study in Malawi and research conducted in resource-rich settings
Patient/carer interviews were conducted generally at least two weeks after hospital discharge or death, and in some cases additional delays were experienced. This may have affected precise recall of acute illness events and treatment seeking details. Equally rationalisation of events and the desire to avoid blame may have altered the narratives given. We were not able to discern an association between outcome and number of days before initiating treatment due to a qualitative emphasis on understanding behavioural influences.
All our patients were recruited from QECH, a tertiary, regional, referral hospital which also acts as a district hospital for Blantyre District, providing comparatively high levels of care and treatment. However, patient profiles and pathways to QECH reflect those elsewhere in Malawi since these pass through the primary health system. Similarly, participants in FGDs were recruited from specific social groups so FGD participants may have had greater access to social capital than non-group members. However triangulation of findings between individual interviews and FGDS and restriction within FGDs to understanding perceptions of illness and causation theories helped to maximise generalizability.
Whilst we present one specific geographical and disease context, similarities across countries in social life, poverty and health service constraints make the findings relevant, transferable and salient to understanding the complex nature of treatment seeking for severe febrile illness in many sub-Saharan African settings.
This study has explored treatment-seeking pathways in Malawi for acute bacterial meningitis to identify reasons for late presentation, identified as a major contributor to increased mortality. Diagnosis of ABM as a distinct and distinguishable condition is fraught with difficulties at both community and primary levels. We suggest that any intervention for ABM should focus on recognition of and response to severe illness and should not depend upon the need to reach a definitive diagnosis before urgent referral to more advanced tertiary care. Recognition may be improved through adaptation of Emergency Triage, Assessment and Treatment (ETAT) practices for primary care services currently aimed at tertiary care admissions departments in resource-poor contexts
Broader community-based strategies for health promotion to address recognition and social constraints, such as decision-making norms, to immediate action in response to severe illness may provide an additional route to addressing poor outcomes associated with severe febrile illness and ABM in particular
We would like to thank the carers and survivors of ABM who agreed to participate in this study and the community groups and health care workers who spent time with the researchers.