Diarrheal disease among the Batwa of Kanungu, Uganda: Emerging Research results

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Diarrheal disease among the Batwa of Kanungu, Uganda Summary of Emerging Research Results By: The Ugandan IHACC Research Team

INDIGENOUS

HEALTH adaptation to

CLIMATE

CHANGE

2015


Acute Gastrointestinal Illness (AGI) Acute  gastrointestinal  illness  (AGI)  â€”  diarrhea  and/ or  vomiting  â€”  can  be  caused  by  a  variety  of  pathogens  and  diseases.  Germs  that  cause  AGI  are  transmitted  by  contaminated  food,  water,  animals,  and  person-­to-­person  contact.  Past  research  indicates  that  over  1  billion  cases  of  AGI  occur  annually  around  the  globe.  In  developing  nations  AGI  remains  one  of  the  top  causes  of  child  illness  and  death.  AGI  has  a  particularly  high  impact  on  poor  and  rural  populations  in  Africa,  and  is  one  of  the  WRS ÂżYH OHDGLQJ FDXVHV RI GHDWK IRU FKLOGUHQ XQGHU ÂżYH years.   There  is  limited  AGI  research  among  vulnerable  populations,  particularly  Indigenous  peoples  in  Africa.  Indigenous  peoples  typically  experience  a  high  burden  of  infectious  disease  compared  to  their  non-­Indigenous  neighbours.  The  Batwa  of  Kanungu  District  are  an  Indigenous  population  who  formerly  lived  in  the  Bwindi  Impenetrable  National  Forest.  The  Batwa  suffer  from  poorer  health  than  their  non-­Indigenous  neighbours,  and  WKH %DWZD LGHQWLÂżHG $*, DV D KHDOWK FRQFHUQ

Indigenous Health Adaptation to Climate Change (IHACC) Project IHACC  is  a  research  project  working  in  the  Peruvian  Amazon,  Canadian  Arctic,  and  Uganda  to  identify  the  vulnerabilities  of  Indigenous  health  systems  to  the  health  effects  of  climate  change.  This  includes  understanding  how  current  weather  and  environments  affect  Batwa  health;Íž  in  particular,  climate-­sensitive  diarrheal  and  vomiting  diseases  are  a  key  focus  of  IHACC  research.  In  Uganda,  IHACC  is  working  with  the  10  Batwa  settlements  in  Kanungu  District:  Bikuto,  Buhoma,  Byumba,  Karehe,  Kebiremu,  Kihembe,  Kitahurira,  Kitariro,  Mukongoro,  and  Rulanagala. Â

IHACC Partners IHACC  in  Uganda  consists  of  an  interdisciplinary  and  international  team  of  epidemiologists,  health  and  human  geographers,  climatologists,  and  policy  makers  from  Makerere  University,  McGill  University,  the  University  of  Guelph,  and  the  Ugandan  Ministry  of  Health.  The  project  partners  closely  with  the  10  Batwa  communities  in  Kanungu  District,  the  Batwa  Development  Programme  (BDP),  Bwindi  Community  Hospital  (BCH),  the  District  of  Kanungu  Local  Government  (KLG),  and  the  Uganda  National  Health  Research  Organization  (UNHRO).  For  WKH SDVW ÂżYH \HDUV ,+$&& KDV ZRUNHG ZLWK DQG WUDLQHG community  members  in  quantitative  and  qualitative  data  collection,  including  survey  administration,  semi-­structured,  in-­depth  and  focus  group  interviews,  community  food  mapping,  Photovoice  techniques,  oral  histories,  and  Rapid  Rural-­Appraisal. Â

AGI Research Methods To  evaluate  the  burden  of  AGI,  IHACC  has  carried  out  six  longitudinal  individual  and  household-­level  surveys  from  January  2013  -­  April  2014.  The  questionnaires  captured  baseline  quantitative  information  on  self-­reported  AGI,  possible  risk  factors  for  AGI,  healthcare  access  and  use,  perceived  causes  of  AGI,  and  socio-­demographic  and  KRXVHKROG LQIRUPDWLRQ $*, ZDV GH¿QHG DV DQ\ VHOI reported  vomiting  and/or  diarrhea  symptoms  (3  or  more  loose  stools)  that  occurred  over  the  past  14-­days.  We  excluded  any  vomiting  or  diarrhea  due  to  pregnancy,  chronic  conditions,  medication,  and  drug  or  alcohol  use.   Qualitative  interviews  with  local  key  informants  and  focus  group  discussions  with  Batwa  community  members  gathered  insights  into  the  lived  experience,  barriers  to  prevention,  health  seeking  behaviours,  and  seasonality  of  AGI. 1


“...for the children, they get stomach swellings and they start going to the toilet many times – if you don’t get medication to them, they get worse with the illness.” -Batwa father Photo by Sierra Clark

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“…[AGI is] common during the rainy season when there is surface runoff with dirty and contaminated water that we get in contact with and that triggers the illness.” -Batwa young adult

Photo by Sierra Clark

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Burden and Seasonality of AGI

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Occurrence of AGI is higher at some times of the year than others

Food: How do seasonal changes in food availability affect rates of AGI?

The  overall  annual  incidence  rate  of  AGI  was  1  case  per-­person-­year.  The  survey  data  showed  that  AGI  prevalence  was  higher  in  some  seasons  (Figure  1).  This  VHDVRQDO GLIIHUHQFH PD\ EH GXH WR VHDVRQ VSHFLÂżF ULVN factors.  Community  members  and  local  experts  had  a  range  of  perspectives  on  why  AGI  differed  between  seasons.  Some  community  members  suggested  that  AGI  â€œbecomes  severe  during  the  dry  season,â€?  while  others  indicated  that  â€œit’s  common  during  the  rainy  seasonâ€?.  Ideas  about  the  seasonality  of  AGI  were  generally  related  to  three  themes:  food,  water,  and  vulnerable  populations.  It  is  important  to  look  more  closely  at  the  risk  factors  described  by  Batwa  community  members  to  determine  whether  or  not  these  risk  factors  differ  between  seasons.  This  will  allow  organizations  to  tailor  health  promotion  strategies  to  make  them  more  relevant  for  different  seasons. Â

14-­â€?day  Prevlance  of  AGI

Some  community  members  said  that  during  the  season  of  harvest,  â€œeating  [certain  foods]  frequentlyâ€?  (such  as  â€œmaize,â€?  â€œmangoes,â€?  â€œmillet,â€?  or  â€œfresh  beansâ€?)  â€œcan  cause  diarrhea  and  vomiting.â€?  In  contrast,  during  periods  of  drought  and  crop  shortages,  community  members  must  â€œeat  whichever  food  they  ¿QG DURXQG HYHQ LI LWÂśV RI SRRU TXDOLW\ DQG PLJKW FDXVH WKH illness.â€? Â

Water: How is water quality and accessibility affected by changes in season, and how does this relate to AGI? For  some  communities,  AGI  was  seen  by  members  as  more  severe  during  the  rainy  season,  due  to  â€œsurface  runoffâ€?  and  mixing  of  â€œfecal  materialsâ€?  leading  to  â€œhigher  water  contamination  levels.â€?  Other  community  members  said  â€œduring  the  dry  season,  our  water  source  gets  affected;Ížâ€?  one  key  informant  explained  that  for  communities  without  a  protected  water  source,  in  the  rainy  season  â€œthe  level  of  contamination  is  diluted  because  there  is  more  water  WKHUH EXW LQ WKH GU\ VHDVRQ LW LV WKH RSSRVLWH â€?

Vulnerable Populations: Who is at greatest risk of AGI and when?

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Many  community  members  and  key  informants  believed  children  are  at  a  heighted  risk  of  developing  AGI;Íž  one  community  member  said:  â€œIt’s  during  the  rainy  season  and  it  affects  children  mostly  because  water  runs  different  SODFHV DQG FKLOGUHQ FDQ WRXFK DQ\WKLQJ DW DQ\ WLPH DQG JHW JHUPV RQ WKHLU ERGLHV HVSHFLDOO\ WKHLU KDQGV.â€?

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Average  AGI  symptoms  for  Batwa  were  more  severe  than  reported  elsewhere  in  the  world  (Figure  2).  The  duration  of  vomiting  lasted  3  days  on  average,  with  approximately  2.6  episodes  of  vomiting.  The  diarrheal  symptoms  lasted  3.6  days  on  average,  with  approximately  4  episodes  of  diarrhea.  Batwa  children  had  similar  severity  of  symptoms  compared  to  Batwa  adults.  For  Batwa  women,  vomiting  lasted  longer  (~3.8  days)  than  for  Batwa  men  (~2.4  days).  Community  members  described  that  they  get  â€œaffected  all  the  timeâ€?  by  AGI  and  episodes  could  last  a  â€œlong  time,â€?  â€œeven  the  length  of  a  week,â€?  with  â€œlittle  reliefâ€?  from  symptoms.  One  community  member  explained,  â€œyou  go  to  the  latrine  three  or  more  times  a  day.  When  you’re  over  the  latrine,  you  don’t  feel  like  moving  off.â€?  Community  members  expressed  concern  over  the  possible  health  impacts  of  AGI,  particularly  for  young  children;Íž  â€œsometimes  if  the  children  are  not  treated  earlier,  they  get  malnourished  and  the  illness  gets  so  bad.â€?  Key  informants  agreed  that  â€œSHUVLVWHQWâ€?  AGI  symptoms  were  a  concern  because  it  could  lead  to  potential  under  development  for  Batwa  children.   Â

AGI can negatively impact households nutritionally, emotionally, and economically

HQRXJK PRQH\ WR NHHS UXQQLQJ WKH IDPLO\ â€?  AGI  was  also  perceived  to  cause  â€œmuch  stress,â€?  particularly  when  young  children  were  ill,  as  one  Batwa  explained:  â€œwhen  we  have  VRPHRQH VLFN ZH DOZD\V JHW IHDUV DQG ZH FDQÂśW KDYH SHDFH of  mind.â€? Â

Poverty is a constraint to Batwa engaging in preventive measures for AGI

Poverty  and  lifestyle  constraints  were  reported  as  barriers  for  Batwa  in  taking  preventative  measures  to  reduce  the  risk  of  AGI.  For  instance,  a  lack  of  money  was  reported  as  a  barrier  for  purchasing  certain  resources,  such  as  soap:  one  Batwa  Elder  explained,  â€œJHWWLQJ LW >VRDS@ IURP ZKHUH" 6RDS LV H[SHQVLYH D SLHFH RI VRDS LV VRPHWKLQJ ZH FDQQRW afford.â€?  Community  members  also  explained  that  lifestyle  restrictions,  such  as  long  hours  of  work  and  household  chores  limited  their  ability  to  take  the  time  to  practise  hygiene  behaviours  that  may  reduce  the  risk  of  AGI.  For  example,  one  male  Batwa  said  â€œ, ZRXOG OLNH WR NHHS JRRG K\JLHQH E\ FOHDQLQJ DURXQG P\ KRXVH EXW , FDQÂśW ÂżQG WKH WLPH EHFDXVH , ZDNH XS DQG , WKLQN DERXW JRLQJ WR ZRUN for  money.â€? 6

Mean  duration  of  symptomatic  days

The Lived Experience of AGI The severity of AGI among Batwa is among the highest reported in the world

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diarrheal  duration

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&RPPXQLW\ PHPEHUV DQG NH\ LQIRUPDQWV LGHQWLÂżHG 1 household-­level  economic,  emotional,  and  nutritional  0 Batwa Batwa  Rigolet Iqaluit Systematic  Jamaica Chile Trinidad Malaysia Barbadoes Cuba consequences  of  AGI.  A  missed  day  of  work  for  Batwa  â€”  review  (all  ages) (children  and чϹͿ (children  Tobago чϹͿ generally  involving  subsistence  farming  or  manual  labor  Indigenous  Batwa  in Indgienous  Inuit Low  and  middle-­â€?income  countries southwestern  Uganda communities  in  the —  could  result  in  a  lack  of  income  and  food  for  the  ill  Canadian  Arctic individual,  and  sometimes  the  entire  family.  One  woman  )LJXUH 'XUDWLRQ RI YRPLWLQJ DQG GLDUUKHDO V\PSWRPV IRU explained,  â€œI  become  so  weak  and  lose  energy  and  lack  %DWZD DQG FRPSDUDEOH SRSXODWLRQV XVLQJ D DQG GD\

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“...most of the time, other children will miss food because the [sick] child is brought to the hospital with the mother, and the mother has been going out to work for food every day, if one child falls sick, and he [she] is admitted, that means that the other children at home are likely to not get food.” -Batwa mother

Photo by Kaitlin Patterson

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“…in the forest, we used to eat herbs that would prevent us from getting ill and other foods like meat and honey – we were just used to such kinds of foods that would keep us strong and we would never get any disease including diarrhea and vomiting.” -Batwa Elder

Photo by Sierra Clark

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What do Batwa do when they have AGI? Research  found  that  approximately  70%  of  Batwa  with  AGI  seek  medical  help  (e.g.  doctor,  nurse,  medicine).  The  most  common  activity  was  to  visit  a  nurse  or  a  GRFWRU %DWZD FRPPXQLW\ PHPEHUV LGHQWLÂżHG WKDW ERWK traditional  and  biomedical  treatments  were  used  to  address  AGI  symptoms.  Some  Batwa  (~20%)  took  prescription  medicines  when  sick,  such  as  antidiarrheal  therapies  (19%),  painkillers  (39%),  rehydration  therapies  (3%),  or  traditional,  herbal  remedies  (47%).  Deciding  which  type  of  AGI  treatment  to  use  depended  on  economic,  social,  and  knowledge-­based  factors. Â

Having knowledge of traditional remedies can affect treatment choice

6RPH %DWZD GHVFULEHG GLIÂżFXOWLHV DFFHVVLQJ DQG XVLQJ traditional  medicines  (i.e.,  herbs)  to  treat  AGI.  This  was  due  to  limited  access  to  the  forest,  a  lack  of  time  to  search  for  herbs,  and  the  increasing  availability  of  biomedical  treatments  (e.g.  pills).  The  Batwa’s  knowledge  of  traditional  remedies  was  very  high:  many  Batwa  were  familiar  with  the  names  and  uses  of  many  medicinal  herbs.  In  contrast,  many  Batwa  reported  being  unfamiliar  with  the  names  and  uses  of  medicines  from  the  hospital  or  clinics  (from  nurses  and  doctors).  One  Batwa  explained,  â€œI  Distance from the clinic can affect choice of just  take  the  drugs  but  I  don’t  know  what  they  are  called.â€?  treatment Unfamiliarity  with  hospital  medicines,  what  they  are  used  The  distance  to  a  healthcare  facility  were  important  IRU DQG ZKDW WKH\ FDQ GR ZDV LGHQWLÂżHG DV D UHDVRQ IRU reasons  for  some  Batwa  to  choose  traditional  herbs  over  Batwa  to  use  traditional  herbs  instead  of  seeking  help  from  hospital  medicine.  As  one  community  member  explained,  a  hospital  or  clinic. “if  the  health  center  was  close  by  we  would  go  there  for  PHGLFDWLRQ EXW ZH DOZD\V ÂżQG WURXEOHV JHWWLQJ WR WKHUHâ€?,  Perceived effectiveness of treatment options and  another  noted,  â€œI  use  herbs  mostly  when  I  get  any  can affect choice of treatment illness  â€” KRZ FDQ , OHDYH D KHUE LQ P\ RZQ FRPSRXQG In  many  cases,  community  members  reported  that  the  ZKHQ , KDYH LW VR HDVLO\"â€?  medications  at  the  health  facilities  were  very  effective, Â

Lack of money for transportation or treatment can affect treatment choice For  many  Batwa,  lack  of  money  prevented   them  from  ¿QGLQJ WUDQVSRUWDWLRQ WR KHDOWK FOLQLF DQG SD\LQJ IRU treatment  or  medicine.   Batwa  community  members  must  choose  between  important  household  costs  (food,  school,  clothes)  and  the  costs  of  accessing  formal  health  services.  For  one  community  member,  the  cost  of  health  services  was  â€œa  lot  of  money  which  I  could  use  to  get  other  items  for  my  family  like  clothing.â€?  Â

as  â€œwe  always  take  the  drugs  and  get  cured,â€?  while  other  Batwa  maintained,  â€œthe  herbs  are  so  effective  and  we  get  cured  when  we  take  them.â€?  Perceptions  about  treatment  HIIHFWLYHQHVV LQĂ€XHQFHG KHDOWK VHHNLQJ EHKDYLRXUV IRU AGI;Íž  however,  perceptions  about  the  effectiveness  of  different  types  of  treatment  varied  among  community  members. *Quantiative  results  based  on  data  from  a  cross  sectional  census  survey  among  Batwa  in  January  2013

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Next Steps in AGI Research in Uganda

Batwa  Settlements  in  Kanungu Â

The  World  Health  Organization  (WHO)  projects  that  one  of  the  largest  climate-­related  disease  burdens  over  the  next  century  will  be  due  to  diarrhea  and  vomitting.  IHACC  plans  to  continue  conducting  research  on  AGI  among  the  Batwa  and  some  of  our  upcoming  research  interests  include: ‡ 7R EHWWHU XQGHUVWDQG WKH VSHFLÂżF SDWKRJHQV UHVSRQVLEOH IRU $*, ‡ 7R EHWWHU XQGHUVWDQG KRZ WKH EXUGHQ RI $*, IRU %DWZD      compares  to  neighboring  Bakiga.  Â‡ ,GHQWLI\ KRZ SXEOLF KHDOWK SURJUDPPLQJ FDQ UHGXFH WKH EXUGHQ     of  AGI  for  Batwa. ‡ 8QGHUVWDQG KRZ ZHDWKHU HYHQWV OLNH UDLQIDOO VWRUPV DQG KRW     weather,  impact  AGI  rates. ‡ 8QGHUVWDQG KRZ FOLPDWH FKDQJH FXUUHQWO\ LPSDFWV $*, DQG     understand  how  climate  change  will  impact  AGI  in  the  future. Â

Publications IHACC – Uganda

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Berrang-­Ford,  L.,  Dingle,  K.,  Ford,  J.  D.,  Lee,  C.,  Lwasa,  S.,  Namanya,  D.  B.,  Henderson,  J.,  Llanos,  A.,  Carcamo,  C.,  &     Edge,  V.  (2012).  Vulnerability  of  indigenous  health  to  climate  change:  A  case  study  of  Uganda’s  Batwa  Pygmies.     Social  Science  &  Medicine,75(6),  1067-­1077. Clark,  S.,  Berrang-­Ford,  L.,  Lwasa,  S.,  Namanya,  D.  B.,  Edge,  V.  L.,  IHACC  research  team  &  Harper,  S.  (2014).  The     burden  and  determinants  of  self-­reported  acute  gastrointestinal  illness  in  an  Indigenous  Batwa  Pygmy  population  in    southwestern  Uganda.  (SLGHPLRORJ\ DQG ,QIHFWLRQ,  1-­12. Clark,  S.,  Berrang-­Ford,  L.,  Lwasa,  S.,  Namanya,  D.  B.,  Twebaze,  F.,  Patterson,  K.,  IHACC  research  team  &  Harper,  S.  (In    preparation).  Acute  gastrointestinal  illness  in  an  African  Indigenous  population:  the  lived  experience  of      Uganda’s  Batwa. Harper,  S.L.  (2012)  Managing  climate  change  impacts  on  waterborne  disease  in  Uganda.  Africa   Portal.  March  2012:25. Harper,  S.L.  (2012)  Social  determinants  of  health  for  Uganda’s  Indigenous  Batwa  population.  Africa  Portal.  June  2012:  32. IHACC  project.  (2014).  Indigenous  Health  Adaptation  to  Climate  Change  (IHACC)  â€“  Uganda:  summary  of  emerging  research    results.  Accessed  at  <http://issuu.com/fordlab/docs/  ihacc_uganda>. Namanya,  D.B.  (2013)  Community  health  insurance  a  policy  option  for  climate  change   adaptation.  Africa  Portal.  March  12:    2013 Sumner,  A.,  Berrang-­Ford,  L.,  Clark,  S.,  Lwasa,  S.,  Namanya,  D.  B.,  Edge,  V.  L.,  Patterson,  K.,  Twebaze,  F.,  IHACC  research    team  &  Harper,  S.L.  (In  preparation).  Seasonality  of  acute  gastrointestinal  illness  for  Ugandan  Batwa. Â

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“...our parents and grandparents used to take herbs whenever they were sick [with AGI], so we have to take up the tradition – even before hospitals were set up we would take herbs to treat certain illnesses and we would actually get well.” -Batwa adult

Photo by Kaitlin Patterson

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Acknowledgements

Contacts

First and foremost we would like to thank the 10 Batwa communities in Kanungu District: Buhoma, Byumba, Bikuto, Karehe, Kitahurira, Kihembe, Kebiremu, Mukongoro, Rulangala, and Kitariro, and all the Batwa community members for engagement with the project. Thank you to all the surveyors from Kanungu District and other members of the IHACC Team for all of your hard work and dedication in making the surveys and qualitative interviews happen. Thanks to those contributors from the Batwa Development Programme, Bwindi Community Hospital and the Kanungu District Local Government, for your instrumental roles in contributing to study design and implementation. Thanks to Sierra Clark and Alison Sumner for their contributions in putting this booklet together. This work was supported by CIHR/NSERC/SSHRC and IDRC Tri-­Council Initiative on Adaptation to Climate Change, Indigenous Health Adaptation to Climate Change (IHACC), CIHR Open Operating Grant, Adaptation to the health effects of climate change among Indigenous peoples in the global south (IP-­ADAPT).

Dr. Shuaib Lwasa Associate Professor, Makerere University shuaiblwasa@gmail.com

IHACC Partners

Mr. Didacus Namanya Geographer, Uganda Ministry of Health didamanya@yahoo.com Dr. Lea Berrang Ford Associate Professor, McGill University lea.berrangford@mcgill.ca Dr. Sherilee Harper Assistant Professor, University of Guelph harpers@uoguelph.ca

Key IHACC-Uganda Partners

Designed by Sierra Clark and Stephanie Austin Compiled by Sierra Clark and Alison Sumner Cover Photo by Sierra Clark Any individuals shown in these photographs have provided consent for it to be used in IHACC publications For more information, visit: http://www.ihacc.ca or email: sierra.clark@mail.mcgill.ca

Uganda National Health Research Organization (UNHRO)

Booklet Citation: Uganda IHACC Research Team (2015). Diarrheal disease among the Batwa of Kanungu, Uganda. 11


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