A case study comparison of Hurricane Matthew in Haiti (2016) and Hurricane Maria (2017) in Puerto Rico
Lise Cazzoli, Department of International Development, University of Oxford
Ox Pers Med J 2021; 1(1): 11-21
Lise Cazzoli, p11-p21 (1)
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This study describes the processes through which access to healthcare for hurricane survivors was compromised in the aftermath of Hurricane Matthew (2016) in Haiti and Hurricane Maria (2017) in Puerto Rico, with special reference to children and adults with neurodevelopmental disorders (NDDs). Using a mixed methods approach, it describes emergency healthcare operations as perceived by their instigators and target populations and assesses potential implications for children and adults with NDDs. Overall, it provides a preliminary explanatory model of the processes through which hurricane survivors might gain, lose or be denied access to healthcare.
The greatest services provided by emergency clinics in the aftermath of hurricane-type disasters are the care and management of chronic diseases, rather than the treatment of injuries.(1, 2) Yet, the burden of chronic psycho-neurological disorders often exceeds the capacity of pre-disaster healthcare systems in low- and middle-income countries (LMICs).(3-7) This is attributable to shortages of specialist health workers, unequal or inefficient resource distribution, and social stigma associated with those conditions.(3, 8)
Affecting 52.8 million children younger than 5 in 2016, neurodevelopmental disorders (NDDs) have received little attention from global health programmes.(9) Defined as a group of chronic health conditions affecting the development of the nervous system, NDDs are characterised by atypical performance of executive brain functions caused by a combination of genetic and environmental factors.(10) Examples of NDDs include autism spectrum disorders (ASD), attention-deficit hyperactivity disorder (ADHD), epilepsy, learning difficulties, and hearing, visual and motor impairments.(11-13)
Most NDDs therapies rely on behavioural interventions that address associated rather than core symptoms(14). High individual variability in symptoms presentation, poor understanding of underlying pathophysiological mechanisms, and frequent overlaps with comorbidities symptomatology, are commonly cited as impediments treatment selection and delivery.(14, 15) Comorbidity here should be understood through syndemics: health outcomes are modulated by a combination of socio-cultural, environmental and biological factors that are not easily differentiated.(16)
For instance, studies facilitated by recent breakthroughs in functional magnetic resonance imagining (fMRI) have shown the shared neural circuits involved in physical and emotional pain processing, with higher levels of one associated with higher sensitivity to the other.(17-19) Subjective experiences of pain depend on individual sensitivity to chemical changes associated with emotional modulation and on the nature of the stimuli it seeks to regulate.(18) Clinical depression, for instance, is associated with pain disinhibition; any negative stimuli will be perceived as more painful due to atypical brain chemistry. However, which stimuli will be processed as negative is context-dependent, because their impact on affective states depends on their symbolic meaning.(17) Conversely, genetic factors can affect individual response to environmental factors typically considered as higher-risk; for instance, childhood maltreatment predicts adult depression in individuals carrying a particular genetic presentation, but not in others.(20)
Children with NDDs are particularly vulnerable to disaster impacts. Childhood socio-emotional deprivation and physical trauma are associated with altered cognitive development (21, 22), core symptoms exacerbation, and the development of comorbid conditions such as anxiety or depression.(23-26) Furthermore, altered thresholds and cognitive pathways for pain processing increase their vulnerability to chronic pain. (27, 28) Impairments in activity up-regulation in brain regions involved in emotional regulation (ER) can impair their ability to cope with sensory overload. (29) Deficits in ER can impair social functioning and ostracize patients from their communities, creating additional negative stimuli .(18, 29, 30) This can explain why some patients might cope better with core symptoms in different country contexts; in Haitian Vodou communities, for instance, core symptoms accompanying schizophrenia are associated with high spiritual attainment.(31)
Yet, current studies in post-disaster mental health research mostly focus on post-traumatic stress disorders (PTSD) and rarely address psychiatric disorders holistically, defining them mostly in behavioural terms.(32) Moreover, humanitarian actors have been criticised for overlooking local epidemiologies and for their undifferentiated approach to disaster medicine; patients with NDDs, by contrast, benefit most from personalised treatment.(14, 20, 32-34) Similarly, growing evidence indicates patients with chronic disorders face serious challenges in accessing personalised, integrated treatment in post-disaster environments.(1, 2) Consequently, investigating the combination of factors shaping health outcomes in this patient group is essential to ensure greater continuity and quality of care in disaster-affected settings.
This study seeks to offer a preliminary explanatory model of the processes through which hurricane survivors might gain, lose, or be denied access to healthcare. First, it provides an overview of post-Hurricane Matthew and Maria emergency operations and identifies factors that shaped access to healthcare. Second, it assesses potential implications for children and adults with NDDs. Lastly, it discusses outstanding issues for practitioners with reference to personalised medicine (PM). Overall, it finds that hurricane survivors can be challenged at three levels: environmental (reaching care), political-economic (obtaining care) and psychosocial (communicating healthcare needs).
METHODS AND STUDY DESIGN
This study aims at identifying critical junctures where access to healthcare for hurricane survivors was compromised in the aftermath of Hurricane Matthew (2016) and Hurricane Maria (2017). It describes emergency healthcare operations conducted by (inter)national agencies and NGOs as perceived by two categories of study subjects (policy stakeholders and survivors/patients) in two case study locations (Haiti and Puerto Rico).
Secondary data was collected from 47 peer-reviewed ethnographic papers and 30 policy reports, amounting to a total of 77 coded files and 3448 coding references. (Table 1)
Policy reports were produced by (inter)governmental agencies and NGOs involved in emergency operations. (Table 2) It was collected through systematic web search, random and purposeful sampling to ensure representativity and reflect the specificities of each case study. Policy stakeholders were identified using OCHA’s Financial Tracking Services, which detail relief projects funded in response to Hurricane Matthew through the international humanitarian appeal.(35) The mapping of destination organisations, their funding agencies and implemented projects was used as baseline for sampling. The main operating agency selected for analysis in the case of Puerto Rico was the U.S. Federal Emergency Management Agency (FEMA). Random sampling allowed for the identification of other agencies.
Selected files were computed into a qualitative data analysis (QDA) software (NVivo 12.6.0). Case studies were analysed in different projects to preserve their specificities. Content was coded into four initial codes corresponding to the research questions (“Response”, “Failure/Success”, “Factors”, “Representations”) and into two main cases corresponding to study subject categories (“Policy reports”, “Ethnographic material”). Child codes were created inductively through close reading of the text.
Discursive and content analysis informed by situational approaches to grounded theory was conducted using coding matrix queries, followed by text search and word frequency queries to identify broader epistemic categories.(36) Results were manually collated into diagrams displaying relationships between project items, and computed into Excel for basic statistical analysis. Coding references were disaggregated by case study and study subject category; their relative frequency was calculated and expressed in percentages.
Lastly, study limitations included an exclusive reliance on subjective experiences, limited data availability when responders did not document their activities, and the prior manipulation of secondary ethnographic data by study instigators. Consequently, any deviation from dominant epistemologies or frameworks should be taken seriously, even where they amount to a small count of coding references.
1. Overview of emergency healthcare operations (Table 3)
Emergency healthcare operations conducted in the aftermath of Hurricane Matthew focused mainly on operational coordination (n=136), care services delivery (n=113) and the provision of expertise and guidance (n=60) in the form of infrastructure rehabilitation, intelligence and the conduct of impact or needs assessments. Similar findings were found in Puerto Rico, with procurement and transportation (n=31), the provision of expertise and guidance (n=31) in the form of infrastructure rehabilitation (n=22), and care services delivery (n=27) occupying the greatest share of the 130 coding references.
In Haiti, care services (n=55) included medical care (cholera treatment, some psychosocial support, support to residential care institutions, WASH) and commodities provision, with medical services representing 7% of the coding references with this code. By contrast, no reference was made to care services in Puerto Rico, with commodities delivery constituting the total 8% of coding references associated with emergency healthcare. In addition, a wider range of healthcare-related commodities were delivered in Haiti (essential drugs, medical and cholera treatment items, vaccines, hygiene kits, food assistance, specialized nutrition, bottled water) than in Puerto Rico, where only food items were referenced.
Policy stakeholders conceptualized shelters as the main environment for care services delivery in both locations, with little reference to health facilities. They mostly included commodities procurement (plastic sheeting, delivery of non-food items, pipeline construction), with the exception of the establishment of “child-friendly spaces”, the identification and referral of unaccompanied children and family links restoration activities in Haiti. However, different approaches to shelter and evacuation were adopted in each location; sheltering was organized in camps in Haiti, while FEMA focused on sourcing existing accommodation or providing interim repairs directly in people’s homes.
2. Compromised access to healthcare: overview
The main factors identified as having impeded access to healthcare for hurricane survivors in both case studies can be classified into three broad categories. (Table 4)
(1) Inability to physically reach care (n=431)
(2) Inability to seek help (n=41)
(3) Inability to obtain care (n=290)
The most frequent factor in both case studies was (1) (48% and 62% of coding references associated with Haiti and Puerto Rico, respectively) and was associated with the interruption of care services and delays in aid delivery. Comparatively to Haiti, where the frequency of (3) closely follows that of (1), (1) was most frequently associated with difficulties accessing affected populations in Puerto Rico.
In Haiti, (3) was associated with unequal or unsafe access to assistance (19%) due to excessive centralization in Port-au-Prince, the associated neglect of rural areas and a general distrust of the population towards the state and aid workers following reported cases of exploitation and abuse within the aid sector. The ethnographic material indicated that the geographic distance between aid organisations and rural communities could be explained by a concern for the security of aid workers. By contrast, study subjects frequently emphasize the inadequacy of care delivered in Puerto Rico, which was associated with FEMA’s disregard for the actual capacity of the Puerto Rican government to deliver care in underserved areas, for the special demographics and (chronic) health needs of the population, and its general lack of cultural awareness. In both cases, this inadequacy was associated with the short-term character of the emergency response, whose purpose was defeated by delays in resource delivery.
The inability to seek help (2) mostly derived from the Haiti case study material (n=33) and was associated with factors compounded or created by the post-hurricane experience (family separation, interpersonal violence, psychological trauma, deterioration in health condition due to the slow pace of aid delivery). The rise in interpersonal violence in Matthew’s aftermath was associated with a combination of pre-existing factors (community norms, gender roles) and increased household-level stress (crowding, financial insecurity). In both cases, (2) was compounded by language barriers (shortage of native-speaking personnel). Lastly, inability to seek help due to psychosocial issues mostly revolved around early warning messages, with mentions of the inability of survivors to evacuate when told to do so (absence of designated shelters) and of confusion surrounding their content (too vague, unclear) or dissemination (poor communications infrastructure).
There were clear variations in relative frequency depending on coding source, as policy stakeholders placed significantly more emphasis on (1) than survivors and patients (72% and 51% of the total number of coding references for each study subject) and the latter equally emphasized (1) and (2)+(3).
3. Compromised access to healthcare: by study subject and case study location
These variations appear more clearly when examining the breakdown of coding references by study subject and case study location. Table 5 indicates the relative importance given by each study subject category to each factor.
In Haiti, policy stakeholders frequently attributed impeded access to healthcare to (1) (68%), while survivors and patients attributed it to (3) (49%). Unequal and unsafe access to assistance was most frequently referenced within that category (26%), followed by aid inadequacy (21%). Within (1), policy stakeholders emphasized the interruption of care services caused by displacement and the destruction of health facilities. While both study subject categories frequently associated (1) with the slow pace of emergency operations, survivors and patients referred to a lack of preparedness (14%) and policy stakeholders to issues of geographic access (14%). While both cited funding as the second main factor within that category (12% and 6% respectively), policy reports referred to international funding for relief activities and ethnographic material to funding for community-based organizations (CBOs).
In Puerto Rico, both study subject categories gave similar importance to these three factors, with variations in how they were understood. For instance, policy stakeholders attributed almost half (42%) of the encountered difficulties to a lack of preparedness of the Puerto Rican government, while the ethnographic material referred to that of FEMA. Here, a low count of coding references associated with “interruption of care services” can be explained by the relatively low involvement of policy stakeholders in care delivery in this case study location, since the analysis focused on coding references associated specifically with healthcare. By contrast, survivors and patients in this location experienced more difficulties with mobility (10%), poor pre-disaster capacity of healthcare facilities (12%), and referred to aid content being inadequate, rather than simply emphasizing its pace.
This study has shown that hurricane survivors might face difficulties accessing healthcare at three levels: environmental, political-economic and psychosocial. This section will focus on implications for children or adults with NDDs.
Catastrophic damage induced by hurricane-type disasters can restrict the ability of children with NDDs to physically reach healthcare facilities in at least two ways.
First, destruction or damage to healthcare facilities can lead to an interruption of primary and secondary services; if completely destroyed, children and their families will need to seek another provider. Conversely, access to care from other facilities may be restricted by a sudden inflow of disaster-affected and transfer patients. In resource-limited settings, staff or storage space shortages for emergency deliveries can physically limit care availability. Children and adults with NDDs would face difficulties in finding a specialized physician, since psychiatrists were already scarce in the pre-disaster context.
Second, damage to road networks and the communications infrastructure might impede health providers’ abilities to source essential medical items or communicate with other providers. It can induce interruption of treatment for medicated children and adults with NDDs due to the restrictions placed on the purchase and prescription and of those drugs; as a result, health providers may only have access to limited stocks of those medications and face difficulties sourcing them due to administrative burdens and them not being prioritized by emergency operations.
Third, children and adults with hearing, visual or motor impairments might be at greater risk of harm while trying to reach care. For instance, dyspraxia is characterized by both a deficit in praxis (choose, plan, sequence and execute movements) and visiomotor deficits affecting motion and form processing.(37) In post-disaster settings, affected patients might experience difficulties with finding their way in unfamiliar landscapes, recognizing faces in crowds, or following emergency instructions to a safe place. Children with NDDs might thus be at greater risk of family separation. Similarly, those with social functioning impairments may also be at greater risk of trafficking, smuggling or exploitation. Children with ASD, for instance, may exhibit excessive naivety and a propension to share intimate details with strangers.(27, 38)
Provided survivors manage to reach a care provider and to communicate their needs, they might still not be able to obtain adequate care for at least three reasons.
First, children and adults with NDDs might be denied access to care or medication due to an inadequate organization of care in the pre-disaster setting. For instance, studies have shown that the privatization of Puerto’s health system decreased care providers’ ability to effectively communicate. In post-disaster settings, where prescriptions or health records might be lost, this might impede patients’ ability to obtain care from another provider. This is especially problematic for patients with NDDs, whose access to care and prescribed medication is heavily conditioned by evidence of prior diagnostic. From that perspective, displacement or the loss of a usual healthcare provider will challenge their ability to obtain care from other providers. In addition, treatment of NDDs is often managed through secondary care, which increases patients’ likelihood to be referred to a second provider.(3)
Second, obtaining a referral might be difficult or impossible due to financial barriers in low-income populations with limited access to medical insurance coverage. This is important to consider as adults with NDDs are often more vulnerable to job and financial insecurity. To some extent, affordability of care is a matter of health system organisation; for instance, 64% of the Puerto Rican population depended on Medicaid or Medicare Advantage (MA) in 2014, which cover medical costs within a network of partner health providers; as a result, patients are unable to obtain subsidized care outside this network. In addition, MA is regionally organized, which affects displaced patients’ eligibility to care outside of their area of residence. Lastly, availability of medical insurance does not necessarily equal care affordability; in the U.S., the Federal Poverty Level (FPL) sets a threshold for eligibility to Medicaid/Medicare and is adjusted to living costs in individual states. However, this hasn’t been done in Puerto Rico, despite living costs being higher on average on the island. Lastly, Puerto Rico’s Medicare subsidizing is capped, which affects the coverage of subsidies over the total costs of care.(39, 40)
In both instances, while health facilities are federally required to provide emergency care to any patient regardless of their ability to pay, NDD treatment does not usually fall under that umbrella despite their being at greater risk of developing a comorbid condition when core symptoms are left untreated.(41, 42)
Survivors can experience difficulties communicating with health or aid workers. These difficulties might be mediated by linguistic, socio-cultural or cognitive differences.
First, children with ADHD or ASD might have difficulties communicating their needs and emotions.(36, 43-45) In particular, studies have shown atypical pain presentation in those groups (described as “anxiety” or “discomfort”), complicating accurate medical assessment.(30) In addition, deficits in spatial recognition might impair their ability to locate the origin of pain or describe causes of injuries.(24) As recipients, children and adults with NDDs might misinterpret medical advice or early warning messages due to sensory, working memory or learning difficulties. Altered cognitive functions, however, are not the sole attribute of NDDs; neurotypical patients can be affected under the influence of other factors, including affective state.(18, 46)
Similarly, socio-cultural differences might cause communication difficulties between aid or health workers and affected patients. In Haiti, for instance, the analysis reported the inability of rural populations to evacuate despite early warning notices, which were perceived as confusing and ignored local conditions. Social stigma attached to certain groups or types of care can also impede health needs communication.(47, 48) In Haiti, children exhibiting behaviours associated with NDDs are perceived as mal éduqués (badly raised) and subject to parental discipline.(31, 47) Similarly, while Vodou healing systems offer explanatory models for illness and alternative sources of care to biomedical care, it is stigmatized by other religious groups.(8, 31) In addition, increased religiosity in Hurricane Matthew’s aftermath was associated to rising interpersonal violence, which might have affected willingness to engage in traditional care practices. Conversely, communities might show reluctance to accept treatment from biomedical health workers with poor cultural awareness.(47, 48)
Lastly, communication problems can arise from linguistic differences. In Puerto Rico, a shortage of Spanish-speaking emergency personnel was cited as a barrier to coordination between federal and local government workers. Though no reference was made to linguistic issues in Haiti, it is likely that the availability of krèyol-speaking health personnel affects access to healthcare for rural populations. Beyond translation issues, previous research has also demonstrated the importance of familiarity of health workers with local idioms used to describe pain or illness.(16, 31, 49)
This study found that hurricane survivors faced difficulties at three levels when seeking healthcare in the aftermath of Hurricane Matthew and Hurricane Maria: environmental (ability to physically reach care), political-economic (ability to obtain care) and psychosocial (ability to communicate needs). Children and adults with NDDs are at particular risk of experiencing difficulties at each step of this pathway. Some main areas of concern include family separation, trafficking/smuggling and exploitation, access to specialist treatment, social stigma and communication difficulties associated with core symptoms. Moreover, psychiatric care often falls to secondary care despite potential short-term complications.
These issues were poorly addressed by emergency responders, whose efforts mostly targeted the first step of this pathway. Views about care inadequacy were expressed in both case studies, as it was not perceived as sufficiently tailored to the demographics of affected populations. In particular, emergency responders in both locations mostly conceptualized health as “the state of being alive” and differentiated between “physical” and “psychosocial’ needs.(32, 33) From that perspective, personalised medicine (PM) offers hope for patients with NDDs by encouraging active monitoring in pre-disaster environments, allowing for disorder or comorbidities prevention for patients experiencing disaster-related trauma, and guiding treatment selection.(14, 15, 20) However, two points of caution should be raised.
First, proper attention should be dedicated to the organization of local health systems in relation to local aetiologies mediating adequacy of care. Emergency responders in both locations conceptualized health as “the state of being alive” and organised operations in clusters; distinguishing between “physical” and “mental” health, however, does not account for the complexities of psychiatry.(33) Similarly, PM has been criticized for leading to an excessive specialisation of care.(50) By contrast, the management of chronic diseases through primary care, with periodical involvement of a specialist physician, would be more beneficial to affected patients. This is particularly true in LMICs, where shortages of trained health workers are a major impediment to accessing care.(3)
Second, PM is based on the premise that a better understanding of individual genetic information will lead to more effective treatment.(51, 52) The analysis has shown that a variety of other factors mediate health outcomes for patients with NDDs and should be considered alongside biomedical information as clinicians assess treatment options. More specifically, a combination of biomedical and ethnomedical care in country contexts where different aetiologies co-exist might improve comorbidities prevention in patients with NDDs, especially by encouraging multi-level cooperation and strengthening community support networks.
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