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Tearfund  Zimbabwe  Case  Study  

   

Family  AIDS  Caring  Trust  (FACT),  Chimanimani,  

Zimbabwe  National  Network  of  People  Living  with  HIV  (ZNNP+),  Chipinge    

And  

Island  Hospice,  Harare          

   

EXPLORATORY  STUDY  ON  ROLES  AND  ATTITUDES  TOWARDS  CAREGIVER  COMPENSATION  AND  SUPPORT  

 

 

 

October  2013  

This  report  was  produced  at  the  request  of  Tearfund.  It  was  prepared  by  Rodwell  Chaitezvi,  a  Zimbabwean  consultant.  The  author’s  views  expressed  in  this  report  do  not  necessarily  reflect  the  views  of  Tearfund.  

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Table  of  contents    Acknowledgments…………………………………………………………………………....................................  .0  Acronyms…………………………………………………………………………………………………………………………..0  Executive  summary……..  …………………………………………………………………………………………………….0  1. Introduction  and  background……………………………………………………………………………………...0  2. Purpose  of  the  study………………………………………………………………………………………………….  00  3. Research  team……………………………………………………………………………………………………………  00  4. Methods  of  the  study…………………………………………………………………………………………………  00  5. Pre-­‐FGD  interviews  with  current  caregivers   ……………………………………………………………..00  6. Interviews  with  past  caregivers………………………………………………………………………………….  00  7. Research  findings  (ZNNP+)…………………………………………………………………………………………  00  8. Discussion  (ZNNP+)  …………………………………………………………………………………………………..  00  9. Research  findings  (FACT)  ………………………………………………………………………………………….    00  10. Discussion  (FACT)  ……………………………………………………………………………………………………..  00  11. Findings  (Island  Hospice)  …………………………………………………………………………………………..  00  12. Recommendations   …………………………………………………………………………………………………..  00  13. Conclusions  ………………………………………………………………………………………………………………..00  14. References   ………………………………………………………………………………………………………………..00                                                  

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Acknowledgments  

I  wish  to  thank  the  Tearfund  Zimbabwe  team,  in  particular  Idzai  Marimba  for  linking  me  up  with  Family  AIDS  Caring  Trust  (FACT)  Mutare  and  Island  Hospice.  My  sincere  thanks  to  the  FACT  Mutare  team  who  were  forthcoming  and  timely  in  their  responses  to  questions  and  very  helpful  in  arranging  field-­‐based  data  collection.  To  FACT’s  past  and  current  caregivers  who  agreed  to  meet  me  and  share  their  time  and  experiences,  I  say  thank  you.  To  Zimbabwe  National  Network  of  People  Living  with  HIV  (ZNNP+)’s  district  focal  person,  current  caregivers  and  past  caregivers  drawn  from  other  caregiving  projects  who  took  part  in  this  study,  I  thank  you  all.  I  would  like  to  thank  the  World  Vision  Zimbabwe  team  in  Chipinge,  especially  the  Area  Development  Programme  (ADP)  manager  for  allowing  me  to  have  the  Focus  Group  Discussion  (FGD)  within  their  premises,  and  the  Health  Officer,  for  linking  me  with  ZNNP+’s  district  focal  person  and  for  giving  me  insight  into  how  World  Vision  Zimbabwe  and  ZNNP+  work  together.  My  thanks  go  to  Island  Hospice’s  training  coordinator  who  took  time  from  her  busy  schedule  to  participate  in  this  study.      

 

 

 

 

 

 

 

 

 

 

 

 

   

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Acronyms  

AIDS       Acquired  Immunodeficiency  Syndrome                                                                          ART       Anti-­‐retroviral  therapy  ARV       Anti-­‐retroviral  drugs  CBO       Community-­‐based  organisation  CHBC       Community  Home  Based  Care  DOT       Directly  Observed  Treatment  ECD       Early  childhood  development  FACT       Family  AIDS  Caring  Trust  FBO       Faith-­‐based  organisation  FGD       Focus  group  discussion  HBC           Home-­‐based  care  HIV       Human  immunodeficiency  virus  HOSPAZ     Hospice  Association  of  Zimbabwe  IGP       Income-­‐generating  project  ISAL       Internal  Savings  and  Lending  MoHCW     Ministry  of  Health  and  Child  Welfare  NAC       National  AIDS  Council  NGO       Non-­‐governmental  organisation  OVC       Orphans  and  other  vulnerable  children  PC       Palliative  care  project  PMTCT       Prevention  of  mother  to  child  transmission  TB       Tuberculosis  TEARFUND     The  Evangelical  Alliance  Relief  Fund  VCT       Voluntary  counselling  and  testing  centres    WFP       World  Food  Programme  ZNNP+       Zimbabwe  National  Network  of  People  Living  with  HIV              

       

       

 

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Executive  summary    Introduction  and  background  The  Evangelical  Alliance  Relief  Fund  (Tearfund)  is  a  United  Kingdom-­‐based  faith  organisation  that  is  funding  HIV-­‐related  work  in  many  countries  including  Zimbabwe,  through  its  HIV  unit.  In  Zimbabwe,  Tearfund  has  been  funding  Family  AIDS  Caring  Trust  (FACT),  a  Community  Home  Based  Care  (CHBC)  programme,  since  1987.  FACT  has  a  palliative  care  (PC)  project  in  three  districts  including  Chimanimani  funded  by  The  Diana,  Princess  of  Wales  Memorial  Fund  and  Tearfund.  The  Diana,  Princess  of  Wales  Memorial  Fund  and  Tearfund  have  also  been  funding  Island  Hospice,  a  non-­‐governmental  organisation  (NGO),  to  provide  training  to  caregivers.  Besides  training  caregivers,  Island  Hospice  has  its  own  caregiving  project  in  Harare,  Chitungwiza  and  Chikwaka  in  Goromonzi  district.  World  Vision  Zimbabwe  is  a  faith-­‐based  organisation  with  some  HIV-­‐related  activities  among  the  various  programmes  they  have  in  Zimbabwe.  World  Vision  Zimbabwe  operates  in  24  of  the  58  districts  of  Zimbabwe.  These  are  selected  by  the  national  and  provincial  government,  with  selection  of  wards  by  the  local  authorities.  World  Vision  Zimbabwe  provides  training  and  support  to  caregivers,  but  they  are  clear  that  the  government  ‘owns’  the  relevant  structures,  and  it  is  to  the  local  government  that  carers  must  report.  World  Vision  Zimbabwe  sees  itself  as  facilitating  the  work  of  others,  in  particular  the  Ministry  of  Health  and  Child  Welfare  (MoHCW).  World  Vision  Zimbabwe  does  not  fund  NGOs  or  CBOs  (community-­‐based  organisations),  in  respect  of  caregivers;  rather,  it  provides  sub-­‐grants  to  some  CBOs  and  supplies  some  of  them  with  material  for  caregiving  such  as  uniforms,  tennis  shoes,  bicycles  and  caregivers’  kits  to  all  carers.  World  Vision  Zimbabwe  does  not  provide  allowances  and  emotional  support  for  caregivers.  They  do  support  livelihoods  projects  such  as  gardening  and  poultry  in  some  areas.  Training  for  carers  is  provided  as  is  required  by  the  MoHCW,  but  carers  do  not  receive  certificates.  After  training,  caregivers  are  registered  under  the  local  health  facilities.  Tearfund  has  commissioned  an  exploratory  study  on  roles  and  attitudes  towards  caregiver  support.  The  research  aims  to  document  motivations  of  caregivers,  issues  around  support  given  to  caregivers  and  to  assess  different  ways  of  compensating  and  supporting  caregivers  in  Zimbabwe.  Background  research  was  carried  out  in  preparation  for  this  study  and  it  informed  the  choice  of  the  two  case  study  organisations,  namely  FACT’s  work  in  Chimanimani  district  and  the  World  Vision-­‐supported  (transport  supported)  Zimbabwe  National  Network  of  People  Living  with  HIV  (ZNNP+)  in  Chipinge  district.    Objectives  of  the  study  The  research  is  intended  to  investigate  and  document  roles  and  attitudes  towards  caregiver  support  and  compensation  in  Zimbabwe.    The  research  objectives  are:    

a) To  conduct  case  studies  on  two  identified  organisations  in  Zimbabwe.  • to  document  historical  and  current  programme  design  and  practices  towards  caregivers  • to  explore  programme  staff  perceptions  of  caregiver  support  and  strategies  

b) To  document  caregiver’s  perceptions  of  support  received  in  exemplar  programmes.  • to  explore  caregiver  perceptions  about  support  received  • to  identify  gaps  of  caregiver  support  • to  document  basic  costs  of  support  to  caregivers.  

 

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Research  team  Rodwell  Chaitezvi  was  responsible  for  the  research  in  Zimbabwe.  Rodwell  has  been  involved  in  research  work  for  more  than  15  years  working  with  local  and  international  NGOs,  donor  agencies,  government  departments  and  private  sector  companies.    Methods  of  the  study  The  research  employed  a  ‘mixed  methods’  methodology  that  included:  a)  semi-­‐structured  interviews,  b)  reading  background  research,  and  c)  focus  group  discussions  (FGD).  Notes  were  transcribed  the  same  day  to  avoid  recall  bias.  In  addition  to  interviews  and  FGDs,  the  consultant  also  received  brochures  and  annual  reports  related  to  caregiving  from  FACT.  Time  was  the  major  limitation  for  the  research.  Island  Hospice  had  gone  through  a  restructuring  exercise,  so  it  took  time  to  get  connected  to  the  right  people  and  to  secure  appointments.  ZNNP+  had  no  past  carers  so  the  consultant  had  to  recruit  past  carers  from  other  caregiving  projects  in  the  area.  Further  limitations  were  numerous  power  cuts  and  email  connectivity  challenges  which  were  faced  during  the  course  of  the  study.    Findings  Document  historical  and  current  programme  design  and  practices  towards  caregivers  The  two  case  study  organisations  came  into  being  in  response  to  the  HIV  and  AIDS  epidemic,  but  have  since  extended  their  scope  to  include  other  illnesses  such  as  tuberculosis  and  cancer,  epilepsy,  hypertension,  diabetes  and  caregiving  in  respect  of  prevention  of  mother  to  child  transmission  (PMTCT)  for  FACT.  ZNNP+  has  32  caregivers  in  Chipinge,  all  of  whom  are  people  living  with  HIV.  The  project  operates  in  eight  wards,  each  with  four  carers  (or  caregivers).  The  caregivers  operate  under  the  district  focal  person.  Activities  of  ZNNP+  are  coordinated  through  the  National  AIDS  Council  (NAC)  offices  as  they  do  not  have  offices  at  district  level.  Supportive  supervision  is  lacking  because  the  ZNNP+  does  not  have  structures  at  district  level.  The  caregivers  are  experienced  after  having  worked  in  other  caregiving  projects.  FACT  has  30  caregivers  under  the  PC  project  in  Chimanimani.  Eight  of  the  ten  carers  who  participated  in  the  FGD  were  drawn  from  the  CHBC  project  and  so  were  caring  for  patients  from  the  two  projects  since  2011.  The  caregivers  operate  in  clusters  and  each  cluster  is  under  a  cluster  supervisor  who  supervises  the  secondary  carers  (ie  caregivers  who  are  not  household  members  of  the  ill  person)  who  work  with  the  primary  caregivers.  Each  cluster  is  linked  to  a  government  clinic  for  ongoing  supervision,  mentoring  and  referrals.      Explore  caregiver  perceptions  about  the  support  they  receive  within  the  project  they  are  working  in  ZNNP+  Caregivers  do  not  receive  any  financial,  material,  ongoing  refresher  trainings  and  supportive  supervision  due  to  non-­‐availability  of  funding.  The  only  aspect  of  the  programme  funded  is  the  training  of  the  district  focal  person,  whose  training  is  sometimes  funded  by  the  Global  Fund.  This  training  takes  the  form  of  training  of  trainers  and  the  focal  person  has  to  make  sure  the  training  cascades  down  to  all  carers.  Carers  also  receive  gloves  from  the  local  clinics,  but  most  of  the  time  they  are  not  available.  Though  the  caregivers  are  not  supported  they  remain  committed  to  the  project  because  of  they  are  people  living  with  HIV.  Carers  used  to  get  material  support  at  the  height  of  the  HIV  epidemic,  but  now  they  feel  they  are  working  for  nothing.  Though  carers  are  not  getting  support  now,  financial  incentives,  uniforms,  kits,  medical  assistance,  foodpacks  and  income-­‐generating  projects  (IGPs)  are  considered  by  them  to  be  very  important,  but  missing  elements,  in  the  support  to  caregivers.  FACT  Caregivers  are  grateful  for  the  support  and  compensation  they  are  getting,  such  as  reimbursement  of  transport,  emotional  support,  refresher  trainings,  IGPs  and  uniforms,  but  they  still  expect  monthly  financial  allowances  to  take  care  of  their  immediate  needs.  Workshop  allowances  to  compensate  for  lost  

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income  during  workshops  (income  from  vending/buying  and  selling  and  other  piece  jobs),  medical,  funeral  and  educational  assistance  were  suggested  as  important  missing  elements  in  the  support  plan  for  carers.  Stopping  current  support  to  caregivers  would  greatly  affect  programming  and  the  participation  of  carers.      Explore  programme  staff  perceptions  of  caregivers’  compensation  ZNNP+  Carers  are  committed  to  the  project  because  they  themselves  are  people  living  with  HIV  more  than  the  compensation  aspect  because  they  want  to  make  sure  they  get  all  the  support  they  can.  If  they  were  not  living  with  HIV,  they  would  have  stopped  caregiving  long  ago  due  to  lack  of  motivation  and  support.  FACT  Carers  are  a  pool  of  hard-­‐working  and  dedicated  cadres  who  continue  working  even  though  they  are  not  paid.  What  they  receive  in  terms  of  compensation  does  not  in  any  way  reflect  on  the  work  they  do.  They  are  getting  far  less  than  they  should  for  the  work  they  are  doing.  They  continue  working  hard  but  remain  neglected.    Identify  gaps  in  provision  of  support  from  caregivers’  perspectives  ZNNP+  Caregivers  are  not  getting  any  support  but  identified  lack  of  regular  refresher  trainings,  no  uniforms,  non-­‐availability  of  financial  incentives,  no  training  and  money  to  start  IGPs,  non-­‐availability  of  free  medication  and  foodpacks  (as  caregivers  are  on  ARVs  –  anti-­‐retrovival  drugs)  as  key  gaps.  None  of  the  carers  has  thought  of  stopping  caregiving  regardless  of  not  getting  any  support,  because  of  the  bond  they  have  with  the  project.    FACT  Workshop  allowances  to  compensate  for  lost  income  during  workshops,  monthly  financial  incentives  and  assistance  in  medical,  education  and  funeral  expenses  emerged  as  the  main  gaps  in  support  to  carers.  Most  caregivers  had  at  one  point  thought  of  stopping  caregiving  due  to  non-­‐  availability  of  financial  incentives  found  in  the  CHBC  (another  FACT  project),  non-­‐availability  of  workshop  allowances  and  non-­‐refundable  economic  costs  incurred  while  caregiving.  One  carer  had  left  for  South  Africa  where  she  is  caregiving  for  a  salary.  Some  carers  had  left  the  CHBC  after  realising  that  the  project  was  not  able  to  provide  for  their  families.    Identify  basic  costs  of  support  to  caregivers  Caregiving  work  is  done  on  a  voluntary  basis,  so  carers  are  not  expected  to  work  for  a  specified  number  of  hours  per  day.  They  plan  their  day  in  such  a  way  that  they  have  enough  time  to  work  for  their  families  before  they  start  helping  others.  Basic  costs  of  support  to  caregivers  could  not  be  established  and  the  same  applied  to  costs  incurred  by  carers  while  caregiving,  due  to  non-­‐availability  of  records.  It  was  clear  from  the  interviews  that  carers  do  incur  unrefunded  costs  while  providing  care.    ZNNP+  One  to  two  days  per  week  are  reserved  for  visiting  patients,  with  each  carer  having  between  three  to  ten  patients.  Caregivers  also  take  advantage  of  other  community  gatherings  and  busy  days  at  the  opportunistic  infection  clinic  to  engage  with  patients,  further  reducing  the  number  of  visits  to  clients.    FACT  Carers  have  between  two  to  six  home-­‐bound  clients  whom  they  visit  twice  a  week  depending  on  their  conditions,  and  between  six  to  thirty  ‘up  and  about’  clients  whom  they  meet  once  a  month  through  their  support  groups.  Carers  take  advantage  of  ‘chisi’  day  (a  day  on  which  people  are  not  allowed  to  work  in  their  fields)  to  visit  patients  so  that  productive  days  are  reserved  for  economic  activities.    Island  Hospice    Island  Hospice’s  caregivers  used  to  provide  care  to  cancer  patients  only,  but  now  care  has  been  extended  to  include  HIV,  motor  neuron  disorder  and  renal  failure  patients.  The  project  has  changed  over  

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time  because  it  used  to  focus  on  adult  carers  only,  but  now  they  are  also  focusing  on  younger  carers  who  look  after  their  sick  relatives.  These  are  given  appropriate  training  necessary  to  provide  care  within  the  family  set-­‐up.    Caregiving  is  not  well  supported  in  Zimbabwe.  Some  organisations  such  as  FACT  and  Island  Hospice  did  not  pay  financial  incentives  before,  but  instead  only  reimbursement  on  transport  expenses,  uniforms  and  trainings.  However,  now  through  the  Global  Fund  some  carers  are  getting  US$14  per  month.  Even  though  the  figure  is  too  low,  it  is  a  positive  move  because  carers  are  no  longer  willing  to  work  for  nothing,  according  to  the  Island  Hospice  training  coordinator.  They  always  require  financial  incentives.  Island  Hospice  caregivers  also  have  uniforms,  kits  (for  needy  patients  only),  ongoing  trainings,  wheelchairs,  walking  sticks  (available  for  needy  patients),  emotional  support  and  community  gardens.  Island  Hospice  provides  training  to  caregivers  from  local  and  international  NGOs,  CBOs,  Faith-­‐based  organisations  (FBOs),  government  departments,  faith  healers  and  the  clergy.    Recommendations  The  key  recommendations  provided  here  are  relevant  for  strengthening  caregiver  compensation  across  the  case  study  organisations.  They  consist  of  actionable  recommendations  to  encourage  and  improve  partnerships  meant  to  support  caregivers.    

• Implement  supportive  supervision  and  mentoring  approaches  that  allow  carers  to  learn  from  experienced  colleagues;  investigate  possible  use  of  retired,  certified  social  workers  to  provide  supportive  supervision.  

• Given  that  most  caregivers  rely  on  vending/buying  and  selling  and  other  piece  jobs  for  survival,  consider  a  workshop  allowance  to  compensate  for  the  lost  income  during  workshops.  

• For  sustainability,  explore  possible  funding  for  IGPs  to  assist  caregivers  in  getting  an  economic  foothold.  

• Investigate  possible  links/partnerships  with  organisations  providing  training  services,  for  ongoing  refresher  trainings  for  caregivers.  

• Provide  compensation  that  enables  carers  who  are  not  gainfully  employed  to  be  able  to  provide  for  their  families  and  at  the  same  time  go  to  work  motivated  (eg  stipends  and  travel  reimbursement).  Seek  a  careful  balance  between  compensation  and  responsibilities.  

• Explore  possible  links  with  organisations  for  the  provision  of  material  support  such  as  uniforms,  bags,  hats,  kits  and  assistance  with  general  coordination  of  activities  at  district  level.  

• Given  that  caregiving  is  vital  not  only  to  care  recipients  but  also  to  the  broader  economy,  consider  exploring  possibilities  of  offering  medical,  educational  and  funeral  assistance  for  carers  through  joint  partnerships.  

• Consider  putting  in  place  a  tracking  mechanism  to  document  cost  of  support  to  caregivers  and  the  economic  costs  incurred  by  carers  while  caregiving  (out-­‐of-­‐pocket  expenses).  

   

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1.  Introduction  and  background  Tearfund  is  a  faith-­‐based  organisation  based  in  the  United  Kingdom.  Through  its  HIV  unit,  Tearfund  does  HIV-­‐related  work  in  many  countries,  including  Zimbabwe.  Tearfund  UK  started  funding  work  in  Zimbabwe  in  1987  through  FACT,  a  CHBC  programme  based  in  Mutare.  FACT  is  running  the  PC  project  in  three  sites  in  Manicaland,  including  Chimanimani  district.  Besides  FACT,  Tearfund  is  also  funding  Island  Hospice,  a  local  NGO  to  provide  palliative  care  training  to  caregivers.  Tearfund’s  funding  to  FACT  and  Island  Hospice  depends  on  how  much  is  sourced  from  external  donors.  For  the  2013–14  financial  year,  FACT  is  receiving  US$150,000  from  Tearfund  Zimbabwe.  Island  Hospice  has  provided  facilitation  of  training  in  Zimbabwe  and  the  region.  Besides  facilitating  trainings,  Island  Hospice  has  a  caregiving  project  in  Mabvuku  and  Tafara  (Harare),  Chitungwiza  (all  funded  by  the  Global  Fund)  and  Chikwaka  in  Goromonzi  district  (where  carers  are  not  funded).  Island  Hospice  works  with  the  MoHCW,  NAC,  University  of  Zimbabwe’s  Medical  School,  the  Hospice  Association  of  Zimbabwe  (HOSPAZ)  and  other  parties  in  the  promotion  of  its  palliative  care  programme.  Background  research  (a  consolidated  interim  report  on  interviews  with  international  NGOs)  was  done  in  preparation  for  this  case  study  and  the  research  informed  the  choice  of  the  case  study  organisations.  STOPAIDS,  previously  known  as  the  UK  Consortium  on  AIDS  and  International  Development,  is  a  partner  in  this  research  project  and  has  the  largest  number  of  members  operating  HIV  care  and  support  programmes  in  Zambia  and  Zimbabwe.  This  is  the  reason  why  Zimbabwe  was  selected.  On  the  basis  of  this  background,  Tearfund,  in  partnership  with  the  STOPAIDS’s  Care  and  Support  Initiative,  agreed  to  carry  out  a  case  study  on  caregiver  compensation  and  support  in  two  organisations  in  Zimbabwe,  namely  FACT  Mutare  with  the  PC  project  in  Chimanimani  and  ZNNP+  in  Chipinge.  Island  Hospice  has  caregivers  of  its  own.  The  findings  about  the  caregiving  project  are  presented  in  this  report  but  no  discussion,  conclusion  and  recommendations  are  provided  since  Island  Hospice  was  not  part  of  the  case  study  but  only  an  ‘intermediary’  partner  to  provide  training.  Two  case  studies  of  caregiver  compensation  and  support  on  projects  funded  by  other  international  NGOs  are  being  done  in  Zambia.    

2.  Purpose  of  the  study  The  research  is  intended  to  investigate  and  document  roles  and  attitudes  towards  caregiver  support  and  compensation  in  Zimbabwe.    The  research  scope  was  framed  to  document  the  motivations  of  caregivers,  issues  around  support  given  to  caregivers  and  assess  the  different  ways  of  incentivising  caregivers.  The  objectives  of  the  research  are:    

a) To  conduct  case  studies  on  two  identified  exemplar  programmes  in  Zimbabwe.  • to  document  historical  and  current  programme  design  and  practices  towards  caregivers  • to  explore  programme  staff  perceptions  of  caregiver  support  and  stategies  

b) To  document  caregivers’  perceptions  of  support  received  in  exemplar  programmes.  • to  explore  caregiver  perceptions  about  support  received  • to  identify  gaps  of  caregiver  support  • to  document  basic  costs  of  support  to  caregivers  

 3.  The  research  team  

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Rodwell  Chaitezvi  was  responsible  for  the  research  in  Zimbabwe.  Rodwell  has  been  involved  in  research  work  for  more  than  15  years,  working  with  local  and  international  NGOs,  donor  agencies,  government  departments  and  private  sector  companies.      

4.  Methods  of  the  study  The  research  employed  a  ‘mixed  methods’  methodology  that  included:  a)  semi-­‐structured  interviews  with  the  district  focal  person  (ZNNP+),  PC  project  coordinator  (FACT),  training  coordinator  (Island  Hospice),  short  pre-­‐FGD  interviews  with  17  current  secondary  carers  (ten  from  FACT,  eight  females  and  two  males  and  seven  from  ZNNP+,  six  females  and  one  male),  and  seven  past  secondary  caregivers  (three  from  FACT,  all  females  and  four  from  other  caregiving  projects  from  Chipinge,  all  females),  b)  reading  of  a  consolidated  interim  report  on  interviews  with  international  NGOs  (background  research)  and  c)  FGDs  with  the  17  current  secondary  caregivers.  Notes  were  transcribed  the  same  day  to  avoid  recall  bias.  In  addition  to  interviews  and  FGDs,  the  consultant  also  received  brochures  and  annual  reports  with  information  related  to  caregiving  from  FACT.  Time  was  the  major  limitation  for  the  research.  Island  Hospice  had  gone  through  a  restructuring  exercise  and  the  contacts  given  to  the  consultant  were  no  longer  with  the  organisation  so  it  took  time  to  get  connected  to  the  right  people  and  to  secure  appointments.  For  ZNNP+,  past  caregivers  could  not  be  identified  so  the  organisation  had  to  recruit  past  caregivers  from  other  caregiving  projects  in  the  area  for  these  interviews.  A  further  limitation  was  numerous  power  cuts  and  email  connectivity  challenges  faced  during  the  course  of  the  project.    

5.  Pre-­‐FGD  interviews  with  current  caregivers  A  total  of  17  caregivers  took  part  in  the  FGDs  across  the  two  organisations,  14  females  and  3  males.  Their  ages  ranged  from  30  to  62  years.  Four  had  gone  up  to  standard  six,  four  had  gone  through  primary  school  only,  one  had  not  completed  secondary  schooling,  and  eight  had  completed  secondary  schooling.  All  caregivers  from  FACT  had  started  working  on  the  PC  project  in  2011,  eight  of  them  coming  from  the  home-­‐based  care  (HBC)  project.  Carers  under  ZNNP+  started  caregiving  for  the  project  from  2007  to  2012,  having  worked  with  organisations  such  as  Action  Aid,  Médecins  du  Monde  (MDM),  St  James,  Stepping  Ahead  and  FACT  previously.    All  carers  under  FACT  were  involved  in  some  income-­‐earning  activities  before  caregiving.  The  activities  included:  owning  a  store,  making  mats,  bricklaying,  poultry,  vending,  gardening,  Early  Childhood  Development  (ECD)  teacher,  adult  education  facilitator.  While  caregiving,  carers  were  involved  in  vending/buying  and  selling,  a  poultry  project,  a  goat-­‐rearing  project,  mat  making,  farming,  owning  a  store  and  allowances  from  pastoring.  Carers  under  ZNNP+  were  involved  in  vending/buying  and  selling,  ECD  teaching,  poultry  and  farming.  Caregivers  had  gone  into  caregiving  due  to  a  number  of  reasons.  Below  are  the  reasons  given  by  carers:    

• lost  close  relatives  to  HIV  so  decided  to  fight  it  • used  to  collect  ARVs  for  patients  who  could  not  walk,  and  that  pulled  the  carers  into  it  • used  to  take  care  of  sick  relatives  so  decided  to  do  caregiving  to  help  others  • went  into  caregiving  to  get  knowledge  about  HIV  • to  help  others  • left  with  three  kids  after  husband  died  so  developed  interest  to  help  orphans  • encouraged  by  the  district  focal  person  • taking  care  of  sick  parents  motivated  the  caregiver  into  caregiving  • challenges  faced  by  orphans  motivated  the  caregiver  to  find  ways  of  helping  them  

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 6.  Interviews  with  past  caregivers  

A  total  of  seven  past  caregivers,  all  females,  were  interviewed  across  the  two  case  study  organisations.  FACT  provided  the  names  of  three  while  ZNNP+  could  not  supply  any  because  their  turnover  rate  is  zero,  so  the  consultant  recruited  past  carers  from  other  projects.    Their  ages  ranged  from  39  to  67  years,  and  the  educational  background  ranged  from  standard  six,  some  primary  school  to  completed  secondary.  Only  one  had  been  formerly  employed  as  a  state-­‐registered  nurse  before  caregiving  and  did  vending  while  giving  care.  Two  caregivers  had  no  income-­‐earning  activities  before  and  while  caregiving.  Four  others  had  had  been  working  on  a  gardening  project,  making  and  selling  jerseys  and  piece  jobs.  The  past  carers  started  practising  between  1999  and  2005.  They  started  caregiving  because  one  wanted  to  take  the  lead  in  helping  people  with  HIV,  another  got  into  it  to  help  orphans,  and  yet  another  one  wanted  to  get  knowledge  about  HIV.  One  had  her  sick  relatives  helped  by  carers  so  wanted  to  help  others  as  well.  Carers  stopped  caregiving  between  2009  and  2011  after  working  with  organisations  such  as  Action  Aid,  FACT,  MDM  and  St  James’s  Franciscan  sisters.    The  reasons  given  for  stopping  include:  the  NGO  stopped  operating  in  Chipinge,  carers  were  sidelined  by  FACT  (being  left  out  for  refresher  training  and  ‘when  I  stopped  caregiving  no  one  from  FACT  bothered  to  ask  why  I  decided  to  stop’),  the  organisation  was  accused  of  political  interference  (supporting  the  opposition’s  agenda  of  regime  change)  and  therefore  the  organisation  had  to  cease  its  work.    6.1  Best  part  of  caregiving  Past  carers  gave  the  following  as  their  best  part  of  caregiving:    

• helping  bedridden  patients  recover  • offering  to  help  others  without  expecting  payment  • strong  bond  with  the  community  • giving  one’s  life  to  helping  others  

 6.2  Worst  parts  of  caregiving  These  included:    

• not  being  appreciated  by  the  community  • being  sidelined  by  FACT  • rejection  by  the  community  after  the  organisation  was  accused  of  political  interference  • no  token  of  appreciation  for  caregivers  • losing  a  patient  after  trying  so  hard  to  save  their  life  

 6.3  Coming  back  to  caregiving:  Only  one  out  of  the  seven  interviewed  past  caregivers  ruled  out  any  chances  of  a  coming  back  to  caregiving  due  to  poor  health  (poor  eyesight).  Five  were  ready  for  a  comeback  anytime,  while  one  was  already  back  under  the  Towards  Sustainable  Use  of  Resources  Organisation.    

7.  Research  findings  a)  ZNNP+  Introduction  ZNNP+  is  a  CBO  based  in  Chipinge  district  of  Manicaland  and  was  established  in  1992.  The  district  focal  persons  (representatives)  were  selected  in  2006  through  the  District  AIDS  Action  Committees  during  the  

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organisation’s  first  congress  in  Shamva  district  of  Mashonaland  Central  province.  ZNNP+  does  not  have  offices  at  district  level  and  their  activities  are  coordinated  through  the  NAC’s  offices.  According  to  the  NAC’s  representative  in  Chipinge,  ZNNP+  is  like  a  ‘pressure  group’  at  district  level  that  ensures  the  full  and  meaningful  participation  of  people  living  with  HIV  in  HIV  activities  and  programmes.  World  Vision  International’s  (WVI)  health  officer  regards  ZNNP+  as  a  key  stakeholder  because  of  their  involvement  in  helping  set  up  support  groups,  IGPs,  and  HIV  awareness  campaigns  and  provision  of  psychosocial  support.  According  to  him,  WVI  does  not  fund  any  of  ZNNP+’s  activities  but  at  times  contributes  to  transport  assistance.    The  ZNNP+’s  caregiving  project  does  not  receive  any  funding  for  its  programming;  however,  the  Global  Fund  has  been  funding  the  training  of  trainers  for  the  district  focal  person  such  as  the  palliative  care  training  of  trainers  offered  by  the  University  of  Zimbabwe  in  October  2012.  The  focal  person  then  has  to  make  sure  that  the  training  cascades  down  to  other  caregivers  under  her  organisation.    7.1  Document  historical  and  current  programme  design  and  practices  towards  caregivers  7.1.1  Functioning  of  the  project  at  CBO  level  ZNNP+  operates  in  eight  wards  of  Chipinge  with  a  team  of  32  caregivers  (four  in  each  ward).  All  the  caregivers  are  living  with  HIV,  with  limited  participation  of  males  because  most  do  not  want  to  share  their  HIV  status  with  others  and  are  not  interested  in  doing  voluntary  work.  Caregivers  use  their  life  experience  and  knowledge  to  support  patients  in  the  community,  through  home  visits,  support  groups  and  community  meetings.  Carers  provide  information  and  counselling  to  reduce  stigma  and  assist  patients  to  adhere  to  treatment.  Lack  of  coordination  and  supervision  in  caregiver  activities  was  evident  due  to  the  absence  of  organisational  structures  at  district  level.  Even  though  the  NAC  is  assisting  with  coordination,  it  was  not  felt  that  they  were  doing  enough  as  they  had  their  own  activities  and  projects.  The  operational  guidelines  and  standards  for  ZNNP+  are  different  from  other  projects,  which  have  funders,  as  funders  dictate  how  projects  are  run.  ZNNP+  caregivers  themselves  agree  on  how  things  are  done  in  the  caregiving  project.  

7.1.2  Types  of  people  for  whom  care  is  provided  ZNNP+  came  into  being  in  response  to  HIV,  but  the  focus  has  shifted  to  include  tuberculosis  (TB)  patients.  For  these  two  categories,  carers  help  with  screening  for  infection  within  the  family  (through  a  symptoms  check  for  TB)  then  refer  to  health  institutions  for  testing,  ensure  constant  supply  of  condoms,  monitor  adherence  for  both,  provide  counselling  and  registering  patients  for  food  aid  where  it  is  available  through  programmes  such  as  the  World  Food  Programme  (WFP).      7.1.3  Levels  of  caregivers  Primary  caregivers  These  are  family  members  who  are  trained  to  provide  care  to  their  sick  family  members.  Primary  caregivers  have  direct  physical  contact  with  patients  on  a  day-­‐to-­‐day  basis.  They  make  sure  patients  are  taking  their  drugs  on  time,  and  carry  out  tasks  such  as  dressing  of  wounds,  bed  bathing  and  feeding  the  patients.  Primary  carers  provide  updates  on  the  patient’s  condition  to  secondary  caregivers,  take  patients  to  health  institutions  and  provide  counselling  to  the  sick,  including  other  family  members.  Secondary  caregivers  These  are  non-­‐family  members  who  visit  patients  in  their  homes  to  give  support.  This  category  of  carers  is  responsible  for  keeping  records  of  patients  on  first  and  second  line  of  treatment,  and  the  number  of  bedridden  and  housebound  patients.  They  provide  counselling  to  the  family,  monitor  adherence  to  drugs  including  ARVs,  refer  patients  to  health  facilities  and  submit  reports  to  clinics/hospitals.  

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7.1.4  How  are  caregivers  selected?  From  the  interview  with  the  district  focal  person,  it  was  clear  that  the  selection  of  ZNNP+  caregivers  is  done  in  a  transparent  manner,  through  the  various  support  groups.  Because  they  are  people  who  live  with  HIV,  carers  belong  to  support  groups,  and  it  is  from  these  groups  that  they  are  selected.      7.1.5  Criteria  for  caregiver  selection  Carers  should  be  able  to  manage  confidentiality,  as  they  will  have  access  to  patients’  health  information.  Some  writing  skills  are  required  because  they  will  be  expected  to  write  reports  and  to  keep  records.  One  has  to  be  committed  to  helping  others,  must  be  available  in  the  area  most  of  the  time,  must  be  aged  between  30  and  50  years  old  and  have  an  outgoing  personality.      7.1.6  How  has  work  by  caregivers  changed  over  time?  According  to  research  participants,  the  increased  engagement  of  primary  caregivers  changed  the  roles  of  secondary  caregivers  as  their  work  has  become  relatively  easy  because  the  primary  carers  are  now  doing  most  of  the  work,  leaving  the  secondary  caregivers  to  do  the  supervisory  roles.  The  availability  of  information  about  HIV  has  also  transformed  caregiving  work.  Family  members  used  to  neglect  their  sick  relatives  because  they  did  not  have  adequate  information  about  HIV  and  HIV-­‐related  illnesses.  The  caregiving  role  was  left  on  the  shoulders  of  the  secondary  caregivers,  who  were  already  overwhelmed.  Knowledge  has  made  it  easier  for  secondary  caregivers  to  visit  more  patients  because  their  workload  has  been  made  lighter.  The  availability  of  ARVs  helped  reduce  the  number  of  bedridden  patients  –  now  there  are  people  living  with  HIV  who  do  not  require  regular  visits  and  monitoring.      7.2  Explore  caregiver  perceptions  about  the  support  they  receive  within  the  project  they  are  working  in  What  compensation  does  the  project  provide  to  caregivers?  Is  it  provided  for  all  caregivers,  or  only  some  of  them?  The  table  below  summarises  the  compensation  provided  by  the  project  (ZNNP+)  to  caregivers.  

Table  1  

Type  of  Support  

                                                                                                 Description   All/Some  

Financial  Support  

No  financial  incentives  for  caregivers.    Training  allowances  received  years  back.  

All    Some  

In-­‐kind  support  for  caregivers  

No  in-­‐kind  support  for  caregivers.    As  people  living  with  HIV,  carers  used  to  get  foodpacks  years  back.  

All    Some  

Equipment  support  

Only  get  gloves  from  the  clinic  but  not  always  available.   All  

In-­‐kind  support  for  the  cared-­‐for  

Reading  material  from  the  clinics.    Medication  including  ARVs  from  the  local  clinic  unless  unavailable.      Patients  with  HIV  used  to  get  foodpacks  in  previous  years  from  WFP.  Soap  and  Vaseline  were  also  provided.  

Some    Some    Some  

Emotional   Caregivers  get  support  from  the  NAC  ward  person,  the  MoHCW  and    

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support   from  other  carers.   Some  Other   Some  organisations  used  to  pay  school  fees  for  children  whose  parents  

were  living  with  HIV  in  previous  years  when  a  lot  of  NGOs  used  to  support  people  with  HIV.  

   Some  

 

7.2.1  Financial  support  Table  1  above  shows  that  ZNNP+  does  not  provide  financial  support  and  compensation  to  its  caregivers  due  to  non-­‐availability  of  funding.  Though  caregivers  are  aware  that  they  work  on  a  voluntary  basis,  they  expect  meaningful  compensation,  especially  financial  incentives  to  prevent  compassion  fatigue  that  arises  from  accumulative  exposure  to  distress  and  the  suffering  of  others,  as  this  can  result  in  burnout.  The  long-­‐term  effects  of  burnout  can  be  permanent  and  can  also  prevent  continuation  of  the  caregiving  role.  These  findings  show  that  support  by  ZNNP+  to  carers  is  not  adequate  and  carers’  efforts  are  not  being  recognised.  There  is  a  need  to  come  up  with  strategies  to  link  up  with  other  partners  for  the  provision  of  support  and  compensation  to  motivate  caregivers.    

7.2.2  In-­‐kind  support  to  caregivers  The  research  shows  no  in-­‐kind  support  for  caregivers  now,  even  though  they  used  to  get  foodpacks  and  cooking  oil  before,  when  some  other  organisations  used  to  assist  people  living  with  HIV.  According  to  the  focal  person,  caregiving  was  better  back  in  the  years  when  carers  used  to  get  foodpacks,  because  now  they  really  feel  that  they  are  working  for  nothing.  Caregiving  workload  has  become  easier  but  in  terms  of  compensation  and  support,  it  has  become  less.  

7.2.3  In-­‐kind  support  to  the  cared-­‐for  Those  receiving  care  are  now  getting  only  reading  material  collected  from  the  clinics  even  though  they  used  to  get  foodpacks,  medicine,  laundry  soap  and  Vaseline  some  years  ago.    

7.2.4  Emotional  support  Lack  of  emotional  support  among  ZNNP+’s  caregivers  was  noted  by  the  consultant  and  this  observation  was  confirmed  by  carers  who  felt  that  emotional  support  in  the  form  of  supportive  supervision  was  rarely  available,  though  the  focal  person  said  it  was  provided  for  through  MoHCW’s  ward-­‐based  health  technicians,  NAC  ward-­‐based  focal  persons  and  among  carers  themselves.  

7.2.5  Training  Lack  of  funding  is  challenging  the  provision  of  regular  refresher  training  and  there  was  no  evidence  of  training  follow-­‐ups.    The  study  shows  us  that  all  caregivers  receive  the  National  Home  Care  training  which  is  the  minimum  requirement  from  the  MoHCW  before  they  start  caregiving.  This  should  be  followed  by  refresher  courses,  which  are  informed  by  needs  assessments.  Nurses  from  local  clinics/hospitals,  the  NAC,  and  the  ZNNP+  district  focal  person  have  facilitated  training  for  ZNNP+  carers.  No  certificates  are  given  after  training  due  to  lack  of  funding.      7.2.6  What  aspects  of  the  compensation  are  important  to  you?  The  majority  of  caregivers  said  though  they  are  not  getting  any  compensation  now,  but  they  would  be  grateful  to  have  a  monthly  financial  incentive,  regular  training,  protective  clothing,  uniforms  and  infection  control  kits.  This  finding  indicates  that  caregivers  expect  compensation  and  support  in  order  to  be  motivated  to  work.  Even  though  they  continue  providing  care,  they  are  not  motivated  due  to  the  absence  of  compensation  and  support  mechanisms  within  ZNNP+.    7.2.7  What  would  happen  if  compensation  is  stopped?  From  interviews  and  the  FGD  it  emerged  that  nothing  would  change  if  compensation  for  caregivers  is  stopped  because  they  have  been  caregiving  without  support.  Carers  expressed  confidence  that  they  would  continue  with  or  without  compensation  although  they  are  not  motivated.  This  shows  how  

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dedicated  the  carers  are  to  the  project  in  that  they  are  willing  to  help  others  even  without  getting  payment.      7.2.8  Any  changes  noted  over  time  in  terms  of  caregiver  compensation?  The  case  study  shows  that  ZNNP+  has  not  been  funded,  making  it  difficult  to  talk  about  any  changes  in  the  compensation  of  caregivers.  However,  carers  say  that  when  HIV  was  at  its  peak,  they  used  to  work  with  a  number  of  NGOs  and  used  to  get  a  lot  of  reading  material,  at  times  training  allowances,  and  soap,  and  they  received  foodpacks  as  people  living  with  HIV.  Some  organisations  even  paid  school  fees  for  children  whose  parents  were  living  with  HIV.  A  lot  of  these  organisations  have  since  left  because  of  political  pressure,  as  they  were  accused  of  political  interference  (supporting  the  regime-­‐change  agenda  and  siding  with  the  opposition)  and  because  there  were  fewer  people  requiring  care  because  ARVs  were  being  provided.    7.2.9  What  makes  you  proud  of  the  caregiving  project?  The  FGDs  with  carers  showed  that  they  are  proud  of  what  they  are  offering  patients  and  how  they  are  complementing  the  efforts  of  health  institutions.  The  following  were  suggested  by  carers  as  aspects  that  make  them  proud  of  the  caregiving  project:    

• Caregivers  have  been  able  to  help  patients,  especially  the  bedridden  ones,  to  recover  and  to  go  back  to  their  normal  life.  

• Carers  have  managed  to  convince  many  people  to  go  for  HIV  testing  and  counselling  through  sharing  their  own  experiences,  and  those  that  they  have  helped  are  now  living  positively.  

• They  lobbied  for  the  opening  of  the  opportunistic  infection  clinic  at  the  hospital  because  people  living  with  HIV  were  facing  a  lot  of  discrimination  when  they  went  to  collect  their  medication.  This  was  done  and  the  group  is  very  proud.  

• The  fact  that  clients  are  able  to  get  their  drugs  at  the  local  clinic  is  very  encouraging  even  though  half  the  time  drugs  including  ARVs  are  not  available.  

• The  availability  of  HIV  and  HIV-­‐related  illnesses  information  on  all  platforms  is  making  caregiving  work  very  easy  because  clients  are  already  well  informed  and  are  prepared  to  accept  help.  

• Caregiving  work  has  become  relatively  easy  because  of  the  presence  of  primary  caregivers,  who  have  taken  over  some  duties  from  secondary  caregivers,  such  as  meal  preparation,  personal  hygiene,  bathing  and  housekeeping.    

7.3.0  Main  concerns  about  caregiving  project  The  responses  from  the  interviews  and  the  FGD  suggested  the  following  as  concerns  of  caregivers  on  the  project:    

• The  non-­‐availability  of  tablets  (ARVs)  for  young  children  living  with  HIV  in  the  right  sizes.  Breaking  the  tablets  is  not  only  unhealthy,  but  it  does  not  result  in  the  right  quantities  being  taken.  

• Some  caregivers  living  with  HIV  get  tempted  to  go  back  to  their  risky  old  behaviours,  such  as  the  sale  of  sexual  services,  after  realising  that  they  are  not  getting  any  compensation  from  caregiving.  

• Lack  of  refresher  training  to  keep  caregivers  up  to  date  with  new  developments  may  render  the  efforts  of  caregivers  irrelevant.  

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• Some  people  still  do  not  accept  that  HIV-­‐related  illnesses  are  for  real  and  that  they  kill.  They  still  hide  behind  some  diseases  such  as  malaria  and  cancer  while  HIV-­‐related  diseases  continue  to  kill  them.  This  defeats  the  whole  purpose  of  caregiving.  

• Lack  of  incentives  to  keep  caregivers  motivated.  Caregivers  are  aware  that  they  work  on  voluntary  basis  but  they  expect  some  uniforms,  financial  incentives  and  protective  clothing  to  keep  them  motivated.  

 7.3  Explore  programme  staff  perceptions  of  caregiver  compensation  Staff  report  that  ZNNP+  caregivers  are  living  with  HIV  and  very  committed  to  the  project.  Their  HIV  status  binds  them  to  the  project.  The  wish  of  the  focal  person  is  to  have  organisations  coming  in  to  support  caregivers  to  keep  them  motivated.    7.4  Identify  gaps  in  provision  of  support  from  caregivers’  perspectives  It  was  evident  from  the  interviews  and  the  FGD  that  the  current  caregiving  project  was  not  providing  adequate  support  for  the  caregivers.  The  following  were  gaps  of  support  identified  by  carers:      

• Lack  of  regular  refresher  training  to  keep  caregivers  up  to  speed  with  new  developments.  This  is  due  to  lack  of  funding.  This  results  in  knowledge  gaps  to  caregivers.    

• Non-­‐availability  of  regular  contact  for  supportive  and  mentoring  supervision  as  a  result  of  the  lack  of  organisational  structures  within  ZNNP+  at  district  level.  

• Absence  of  training  and  seed  money  for  IGPs,  such  as  sewing  and  poultry,  to  help  caregivers  gain  an  economic  foothold.  

• Non-­‐availability  of  material  support  for  the  carers  in  the  form  of  uniforms,  tennis  shoes,  bags,  infection  control  kits  and  bicycles.    

• Non-­‐availability  of  financial  allowances/incentives,  no  matter  how  small,  to  enable  caregivers  to  buy  soap  and  other  necessities  for  their  families.  

• Lack  of  free  medication  for  other  health  problems  and  lack  of  foodpacks  (as  were  received  before  ARVs  were  introduced),  despite  the  fact  that  most  of  the  caregivers  and  patients  are  on  ARVs  and  need  to  eat  before  taking  their  medication.  

 7.4.1  Have  you  thought  of  stopping  caregiving?  All  FGD  participants  had  not  thought  of  stopping  caregiving  at  all  because  of  the  attachment  they  have  to  the  project.  Their  HIV  status  has  created  a  bond  between  them  and  the  project,  so  they  feel  they  cannot  afford  to  stop.  From  the  interviews  with  carers,  it  was  their  wish  to  get  recognition  and  financial  incentives  to  be  able  to  provide  for  their  families.    7.4.2  Do  you  know  people  who  have  stopped  caregiving?    All  participants  in  this  study  did  not  know  of  anyone  who  had  stopped  caregiving  under  ZNNP+  but  knew  people  from  other  projects  who  have  done  so.  Caregivers  had  left  other  projects  after  realising  that  the  projects  were  not  able  to  provide  them  with  money  to  send  their  children  to  school.  Some  carers  who  had  worked  under  projects  such  as  MDM  who  used  to  get  paid  could  not  suddenly  work  for  nothing  after  MDM’s  withdrawal.    7.4.3  Turnover  rate  at  ZNNP+    From  the  interviews  and  the  FGD,  it  can  be  seen  that  ZNNP+  carers  are  all  living  with  HIV  and  all  are  on  ARVs,  hence  their  commitment  to  the  project,  because  they  want  to  make  sure  they  get  all  the  support  they  can.  Therefore,  the  turnover  rate  is  zero.  It  was  apparent  from  the  study  that  the  only  time  one  leaves  ZNNP+  is  as  a  result  of  relocation  or  death.  

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Though  the  turnover  rate  is  zero,  lack  of  motivation  was  evident  due  to  lack  of  incentives,  especially  financial.  Carers  confirmed  that  if  it  was  not  for  their  HIV  status,  they  would  have  left  long  ago  due  to  lack  of  motivation.      7.5  Identify  basic  costs  of  support  to  caregivers  Both  current  and  past  caregivers  could  not  be  drawn  into  coming  up  with  costs  of  support  to  carers  and  costs  incurred  by  carers  because  there  are  no  records  kept  (tracking  mechanism)  and  the  fact  that  the  work  is  done  voluntarily,  making  it  difficult  to  track.    7.5.1  Time  for  caregiving  Time  taken  to  perform  caregiving  is  time  away  from  a  person’s  own  family  responsibilities,  even  though  caregiving  is  not  considered  a  full-­‐time  job.  According  to  FGD  participants,  carers  must  plan  their  work  in  such  a  way  that  they  leave  adequate  time  to  do  household  chores  and  income-­‐earning  activities.  This  was  confirmed  by  the  district  focal  person,  who  said  the  idea  of  having  four  caregivers  per  ward  is  to  try  to  make  sure  that  carers  do  not  walk  long  distances  so  as  to  free  them  for  paid  work.  Caregivers  confirmed  that  they  look  after  between  three  and  ten  patients;  the  number  of  visits  depends  on  the  conditions  of  patients,  although  one  to  two  days  are  recommended  per  week  for  visits.  ‘Up  and  about’  clients  are  met  once  a  month  through  their  support  groups.  Caregivers  are  also  taking  advantage  of  other  community  gatherings  to  provide  community  members  with  information  on  HIV,  as  well  as  addressing  engaging  with  patients  at  the  opportunistic  infection  clinic  on  busy  days  when  they  go  to  collect  their  ARVs.  This  helps  reduce  the  number  of  visits.    7.5.2  Costs  incurred  by  caregivers  According  to  Cranswick  (2003),  based  on  research  in  Canada,  carers  may  incur  economic  costs  in  the  process  of  maintaining  the  health  and  the  well-­‐being  of  their  patients.  They  may  miss  either  full  or  part  of  a  day’s  work  due  to  unpaid  caregiving  duties.  Instead  of  caregivers  benefiting  from  the  project,  they  may  pay  out-­‐of-­‐pocket  expenses  to  assist  the  care  receivers.  Caregivers  who  were  interviewed  confirmed  that  they  have  given  out  soap,  food  handouts  and  even  cash  to  assist  patients  because  they  felt  they  could  not  just  walk  away  when  a  patient  was  desperate  for  help.  This  finding  shows  that  it  is  not  only  the  carers  who  require  support,  but  those  requiring  care  as  well.  Caregivers  cannot  be  expected  to  visit  households  as  secondary  caregivers  without  any  form  of  support  for  the  needy  cared  for  who  may  be  encountering  a  range  of  situations  including  illness,  poverty,  depression  and  bereavement.  This  is  not  an  easy  task,  even  for  a  well-­‐qualified  social  worker.  One  carer  had  to  buy  sugar  for  a  patient  who  had  diarrhoea  and  wanted  a  salt  and  sugar  solution  but  did  not  have  sugar.  Cranswick  (2003)  said  more  than  a  third  of  caregivers  report  extra  expenses  due  to  their  caregiving  responsibilities.    The  consultant  could  not  get  reliable  estimates  of  costs  incurred  by  carers  because  of  the  absence  of  records.      

8.  Discussion  ZNNP+    The  purpose  of  the  study  was  to  investigate  and  document  roles  and  attitudes  towards  caregiver  support  and  compensation  in  Zimbabwe.    The  findings  clearly  show  that  caregivers  who  play  a  crucial  role  in  maintaining  the  health,  well-­‐being  and  quality  of  life  of  patients/clients  are  not  adequately  compensated,  but  despite  this  they  continue  to  do  caregiving  because  they  live  with  HIV  themselves.  It  is  their  HIV  status  that  binds  them  to  the  project  now,  because  there  is  no  compensation  being  offered.  Despite  their  HIV  status,  their  attachment  to  the  project  and  knowing  that  they  work  on  a  voluntary  basis,  caregivers  still  expect  to  be  compensated.  

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They  expect  financial  allowances  to  prevent  fatigue  that  arises  with  cumulative  exposure  to  the  distress  and  suffering  of  others  that  can  lead  to  burnout.  ZNNP+  carers  are  not  motivated  because  they  do  not  get  regular  refresher  trainings  due  to  lack  of  funding  and  absence  of  coordination  and  supervision  due  to  the  non-­‐availability  of  organisational  structures  at  district  level.  Training  for  the  focal  point  person  is  sometimes  sponsored  by  the  Global  Fund  and  has  to  be  cascaded  downwards.  Caregivers  also  lack  uniforms,  tennis  shoes,  infection  control  kits  and  even  gloves,  which  are  not  always  available  at  the  local  clinics.  Carers  have  no  access  to  capital  and  training  to  start  IGPs,  so  they  feel  they  are  working  for  nothing.  Male  participation  is  minimal  as  males  do  not  want  to  share  their  problems  with  others  and  are  not  prepared  to  do  voluntary  work.  This  supports  one  of  the  findings  from  the  background  research  that  participation  of  males  was  not  common  and  that  women  were  seen  as  natural  carers,  who  are  prepared  to  work  even  without  payment.  It  was  not  clear  from  the  study  whether  the  carers  who  live  with  HIV  would  put  in  more  or  less  effort  if  provided  with  other  forms  of  support  and  compensation.      

9.  Research  findings  b)  FACT  9.0  Introduction    FACT  is  a  Christian-­‐based  private  voluntary  organisation  established  in  Mutare  in  1987.  It  came  into  being  as  a  response  to  HIV  and  HIV-­‐related  diseases,  which  were  wreaking  havoc  at  the  time.  It  was  made  up  of  a  pool  of  volunteers  from  different  churches,  who  were  trained  in  basic  nursing  care.  FACT’s  programmes  started  in  an  urban  part  of  Mutare,  moved  out  to  a  rural  part  of  Mutare  and  now  covers  the  whole  of  Manicaland  province  and  beyond.    In  Chimanimani,  FACT  has  two  caregiving  projects  running,  namely  the  CHBC  programme  funded  by  the  Global  Fund  through  HOSPAZ,  with  60  carers  and  the  palliative  care  programme  with  30  carers  funded  by  Tearfund.  Twenty-­‐two  of  the  thirty  caregivers  under  the  PC  project  were  drawn  from  the  CHBC  project.  The  PC  project  managed  to  engage  the  MoHCW,  which  is  a  positive  move  towards  policy  persuasion  and  this  has  made  it  possible  for  caregivers  to  work  with  local  health  institutions.  The  project  has  also  managed  to  provide  quality  palliative  care  education  to  its  caregivers,  thereby  ensuring  a  well-­‐informed  health  workforce,  equipped  with  the  skills  required  to  provide  palliative  care  services.      9.1  How  the  PC  project  is  functioning  at  district  level  FACT’s  PC  project  has  done  well  in  the  establishment  of  prerequisite  structures  to  ensure  delivery  of  an  effective  palliative  care  service.  Caregivers  are  organised  into  clusters  and  each  cluster  is  linked  to  a  local  health  institution.  The  sisters  in  charge  of  the  health  facilities  coordinate  with  the  caregivers,  monitoring  and  supervising  their  activities  and  providing  emotional  support.  The  caregivers  and  the  local  clinic  nurses  work  as  a  team.  The  caregivers  refer  patients  to  the  clinic  where  they  are  given  priority  to  get  treatment,  and  nurses  refer  patients  to  caregivers  for  follow-­‐up.  Teamwork  is  important  for  the  success  of  the  PC  project.    9.2  Document  historical  and  current  programme  design  and  practices  towards  caregivers  9.2.1  Type  of  people  cared  for  under  the  PC  project  According  to  the  project  coordinator,  the  CHBC  project  came  into  being  as  a  response  to  the  AIDS  pandemic.  The  project  targeted  the  HIV  bedridden  and  housebound  patients.  Now  people  are  living  positively  with  HIV  as  a  result  of  ARVs,  and  the  PC  project  scope  has  widened  to  provide  care  to  cancer,  diabetes,  hypertension  patients  and  people  with  other  chronic  conditions  such  as  epilepsy.  Caregiving  is  also  being  provided  for  under  the  PMTCT  project,  where  pregnant  mothers  are  encouraged  to  receive  antenatal  care  and  to  use  voluntary  counselling  and  testing  services.  TB  patients  are  being  cared  for  and  

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carers  help  with  TB  screening  within  the  family  through  symptom  checking  before  referring  to  clinics  for  testing  as  well  as  supervising  patients  under  Directly  Observed  Treatment  (DOT).      9.2.2  Levels  of  caregivers  The  PC  project  caregivers  are  grouped  into  clusters  and  each  cluster  is  under  a  cluster  supervisor,  who  supervises  the  secondary  caregivers  who  work  with  primary  caregivers  at  the  family  level.  Intercare  referrals  between  caregivers  are  common.  Carers  identify  among  themselves  which  carers  are  gifted  in  certain  skills,  such  as  counselling.  They  tend  to  refer  patients  requiring  such  services  to  these  caregivers.  Cluster  supervisors  are  responsible  for  organising  cluster  meetings;  assessing  the  needs  of  patients  and  making  referrals,  submitting  cluster  reports  and  making  sure  that  IGPs  are  working  well.  They  provide  emotional  support  to  both  secondary  and  primary  carers  and  they  disseminate  project  information  to  caregivers.  Secondary  caregivers  monitor  adherence  to  treatment  (for  example,  through  pill  counts),  provide  counselling  to  patients  and  other  family  members  including  primary  carers,  encourage  pregnant  mothers  to  use  voluntary  counselling  and  testing  centres  (VCT)  and  to  receive  antenatal  care  (and  possibly  to  utilise  PMTCT  if  applicable),  keep  track  of  patients’  health  records  and  inform  cluster  supervisors  of  any  changes,  as  well  as  infection  control.      9.2.3  Caregiver  selection  The  coordinator  says  the  selection  of  caregivers  is  carried  out  on  two  levels,  namely  the  community  and  the  church  levels.  At  the  church  level,  pastors  from  different  churches  are  asked  to  provide  carers.  Mainstream  churches  such  as  the  Methodist,  the  Roman  Catholic,  the  Salvation  Army  and  others  support  the  project  because  they  have  an  arm  within  their  structures  looking  at  health  issues,  but  the  white  garment  churches  and  other  new  Pentecostal  churches  are  against  it.  So  it  is  possible  to  have  some  churches  with  many  carers  while  others  have  none.  In  addition,  village  heads  are  asked  to  provide  the  names  of  people  who  could  work  as  caregivers.  The  selected  carers  then  go  through  the  final  selection/vetting  by  the  nursing  sisters  of  the  local  clinics.    9.2.4  Criteria  for  caregiver  selection  (Required  Characteristics)  The  following  were  given  as  required  characteristics  of  caregivers  by  participants  in  this  research:  the  selected  person  should  be  a  role  model  in  the  community,  have  good  morals  and  be  of  sound  health  because  caregiving  is  hard  work  and  requires  a  lot  of  walking.  One  must  be  able  to  maintain  patient  confidentiality  and  be  aged  between  30  to  40  years  (that  is  be  mature).  Carers  also  need  to  be  able  to  read  and  write,  be  committed  to  assisting  others  and  be  available  in  the  community  most  of  the  time.  Desired  characteristics,  according  to  the  project  coordinator,  include  owning  a  cellphone  and  being  able  to  send  an  SMS,  being  computer  literate  so  as  to  be  able  to  write  reports  and  do  research,  and  being  able  to  speak  at  least  two  languages,  English  and  a  local  language,  with  preference  for  Shona  speakers.    9.2.5  How  has  the  work  of  caregivers  changed  over  time?  It  was  clear  from  the  interviews  and  the  FGD  that  the  work  of  carers  has  changed  over  time.  Originally,  secondary  caregiving  work  primarily  involved  physical  contact  with  patients.  This  has  shifted  because  of  the  participation  in  the  caregiving  process  of  primary  caregivers  who  are  part  of  the  family.  Primary  caregivers  have  taken  over  some  of  the  roles  from  secondary  carers  such  as  bathing,  feeding,  making  sure  they  are  taking  their  medication  and  ensuring  they  are  comfortable.  Secondary  caregivers  are  now  coming  in  to  monitor  and,  where  necessary,  refer  patients  to  clinics.    9.3  Explore  caregiver  perceptions  about  the  support  they  receive  within  the  project  they  are  working  in  

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Caregivers  are  individuals  who  provide  ongoing  care  and  assistance  to  people  in  need,  without  pay.  They  need  all  the  support  they  can  get  to  make  sure  they  are  motivated  to  continue.  According  to  George  and  Gwyther  (1986),  caregivers  are  more  likely  to  experience  psychological  symptoms  when  compared  to  non-­‐carers,  as  caregiving  responsibilities  correlate  with  an  increased  vulnerability  to  anxiety,  guilt,  grief,  rage  and  substance  abuse.    What  compensation  does  the  project  provide  to  caregivers?  Is  it  provided  for  all  caregivers,  or  only  some  of  them?  The  table  below  captures  the  compensation  and  support  given  to  carers  under  FACT’s  PC  project.    Table  2  

Types  of  support   Description   All/some  Financial  support   Carers  are  reimbursed  for  transport  costs  to  workshops/training  and  

travelling  with  visitors  from  outside  Zimbabwe.  Seed  money  given  in  groups  for  IGPs  to  all  PC  caregivers.  Site  managers  under  palliative  care  receive  US$10  monthly  for  airtime  and  transport  to  visit  clusters  and  take  reports  to  Mutare.    Some  caregivers  drawn  from  CHBC  receive  UK$14  monthly,  though  they  are  still  to  get  the  money.    

All    All    All    Some  

In-­‐kind  support  for  caregivers  

Carers  have  uniforms,  T-­‐shirts,  bags,  trousers  for  men  and  skirts  for  women,  umbrellas,  tennis  shoes.  They  receive  soap,  Vaseline.    Regular  refresher  trainings  for  all  caregivers  under  PC  project.  Carers  get  preferential  treatment  at  local  clinics  as  a  way  of  recognising  their  efforts.  

All    All  All    All    

Equipment  support  

Carers  get  kits  but  replenishing  them  is  a  challenge  for  organisations.  Carers  from  ward  eight  got  kits  comprising  of  gloves,  soap,  Vaseline  and  JIK,  while  others  carers  are  still  to  get  these.  

All    Some  

In-­‐kind  support  for  cared-­‐for  

Get  treatment/drugs  including  ARV  during  home  visits.  Soap  and  Vaseline  had  been  handed  out  to  some  patients.  

Some  Some  

Emotional  support  

This  was  offered  during  debriefing  sessions  at  cluster  level  by  cluster  supervisor,  pastor,  nursing  sisters,  and  among  carers  themselves.  Nursing  sisters  coordinate,  supervise  and  support  carers.  

 All  

Other     Some  carers  are  included  in  the  health  centre  committees  and  make  decisions  for  the  health  centre.  Carers  are  given  the  opportunities  to  address  villagers  on  health  matters  at  village  meetings.  Supportive  supervision  and  mentoring  home  visits  are  provided.  Accompanied  by  the  trainers,  carers  visit  patients  so  that  the  trainers  can  assess  and  help  them.  Caregivers  get  preferential  treatment  at  local  clinics  as  a  way  of  recognising  their  efforts.    

 Some    Some  Some    Some    All  

 

9.3.1  Financial  support  

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It  was  clear  from  all  participants  that  the  PC  project  does  not  provide  financial  allowances  outside  of  reimbursements  for  transport  expenses.  Although  caregivers  were  very  grateful  for  the  compensation  and  support  they  are  getting  under  the  PC  project,  they  expect  a  monthly  financial  incentive  from  the  project.  All  carers  under  the  PC  project  received  a  one-­‐off  payment  of  seed  money  in  groups  for  livelihoods  projects.  First  they  received  training  on  IGPs,  after  which  they  were  asked  to  write  project  proposals  for  the  IGPs  they  wanted  to  do.  Each  group  was  given  seed  money  for  their  proposals.  They  received  money  ranging  from  US$250  to  US$735  and  started  goat-­‐rearing  and  poultry  projects.  Some  FGD  participants,  however,  raised  concern  about  the  amounts  that  were  distributed.  Some  felt  the  money  was  not  enough  for  their  project  because  they  were  given  US$300  as  the  ceiling  for  the  seed  money,  only  to  learn  through  the  FGD  that  one  group  got  US$735.    FGD  participants,  especially  those  involved  in  the  Internal  Savings  and  Lending  (ISAL)  project,  spoke  highly  of  this  innovative  livelihoods  strategy  for  sustainability.  One  participant  had  this  to  say  about  ISAL:  ‘The  seed  money  for  IGPs  is  the  best  thing  that  has  ever  happened  to  us  so  far.  Our  group  got  US$735  and  we  started  a  poultry  project  but  felt  it  was  not  doing  well  so  start  the  ISAL  scheme…’  The  consultant  met  with  members  of  the  ISAL  that  is  doing  well  and  members  from  other  projects  such  as  the  goat-­‐rearing  project  that  takes  time  to  yield  benefits.  Caregivers  in  the  goat-­‐rearing  project  said  that  a  monthly  token  of  appreciation  would  assist  them  in  taking  care  of  their  immediate  needs  while  they  wait  to  benefit  from  their  project.  Most  caregivers  were  concerned  about  the  non-­‐availability  of  cash  incentives  and  felt  that  their  efforts  were  not  being  recognised.  One  caregiver  commented:  ‘It  is  sad  to  know  that  village  health  workers  who  are  doing  the  same  type  of  work  are  paid  by  the  government  yet  we  do  not  get  anything.’    9.3.2  In-­‐kind  support  to  carers  This  is  divided  into  two  categories,  material  support  and  non-­‐material  support.  Material  support  Caregivers  were  grateful  for  the  uniforms,  as  these  gave  them  an  identity  and  made  them  look  the  same  despite  differences  in  social  status.  According  to  one  FGD  participant,  tennis  shoes  and  uniforms  helped  them  get  through  the  cold  winter  months.  The  project  coordinator  stated  that  plans  were  underway  to  procure  uniforms  and  kits  with  basic  infection  control  items  including  gloves,  notepads,  and  reportedly  discussions  were  underway  with  clinics  to  see  whether  to  include  painkillers  in  the  kits.  Non-­‐material  support  The  study  shows  that  knowledge/education  is  the  main  non-­‐material  support  they  are  getting  from  the  PC  project.  This  prepares  them  to  adequately  deliver  services  under  the  palliative  care  programme.  Caregivers  are  expected  to  go  through  the  MoHCW-­‐recommended  National  Home  Care  training  before  they  start  caregiving.  This  is  then  followed  by  regular  refresher  courses  informed  by  gaps  noted  by  the  project  coordinator.  Caregivers  interviewed  during  the  study  expressed  positive  appreciation  for  the  knowledge  and  skills  received  during  various  types  of  training.  The  coordinator  highlighted  that  training  offered  under  the  PC  project  is  different  from  other  caregiving  projects  because  of  the  prevention  and  the  anti-­‐retroviral  therapy  (ART)  components  found  in  palliative  care.  Other  caregivers  viewed  palliative  care  as  a  specialised  project  with  specialised  training,  and  all  carers  want  to  have  the  training.  For  monitoring  under  palliative  care,  caregivers  get  infection  control  kits  and  carers  are  accompanied  by  trainers/consultants  and/or  nurses  so  their  patients  get  treatment  which  is  not  carried  out  in  other  projects.    According  to  the  programme  coordinator,  the  differences  in  training  are  a  source  of  potential  conflict  among  caregivers,  if  not  professionally  handled.  She  said  caregivers  under  other  projects  at  first  felt  inferior  to  palliative  care  carers.  FACT  had  to  explain  to  them  how  different  projects  are  funded.  They  then  understood,  and  this  does  not  impact  on  FACT’s  programmes.  She  highlighted  the  low  turnover  rate  per  caregiver  in  the  PC  project  as  proof  that  things  are  working  well  within  FACT  and  the  PC  project  in  particular.  

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Training  for  livelihoods  under  the  PC  project  is  provided  by  FACT’s  field  officers  with  support  from  Agritex  officers  from  the  Ministry  of  Agriculture.  MoHCW,  through  sisters  in  charge  of  local  health  centres,  is  involved  in  the  health  component  of  caregiving.  Island  Hospice  is  heavily  involved  in  the  training,  mentoring  and  supervision  of  the  PC  carers.  All  PC  caregivers  received  certificates  of  attendance  and  these  can  be  used  to  seek  caregiving  employment  in  other  districts  or  projects.  As  a  way  of  motivating  and  recognising  them,  caregivers  are  represented  in  health  centre  committees  where  they  participate  in  decision-­‐making  about  health  centres.  FACT  also  supports  caregivers  by  allowing  them  to  attend  celebrations  to  mark  the  World  Day  of  Volunteers  and  with  Christmas  parties.  Caregivers  also  get  preferential  treatment  at  local  clinics  and  are  always  encouraged  to  have  good  working  relationships  with  them.    9.3.3  Equipment  support  The  study  shows  that  PC  caregivers  receive  kits  but  replenishing  them  was  a  challenge  for  organisations  such  as  FACT  and  Island  Hospice.  Carers  from  ward  eight  got  kits  comprising  of  gloves,  soap,  Vaseline,  JIK  and  painkillers  (the  painkillers  are  not  kept  by  carers,  but  by  health  institutions;  patients  get  referred  to  the  clinics  to  access  them).    9.3.4  In-­‐kind  support  to  the  cared-­‐for  According  to  the  programme  coordinator,  patients  get  treatment  and/or  drugs  during  mentoring  and  supervision  home  visits.  At  one  time,  some  patients  under  the  PC  project  got  soap  and  Vaseline  during  the  home  visits.      9.3.5  Emotional  support  The  interviews  confirmed  that  all  caregivers  in  the  PC  project  get  emotional  support  at  all  levels.  According  to  the  coordinator,  FACT  has  employed  a  social  worker  to  work  with  carers;  their  plan  is  to  have  him  based  in  Chimanimani,  closer  to  the  caregivers.  The  sisters  in  charge  of  clinics,  a  pastor  who  is  a  caregiver  and  cluster  supervisors  provide  emotional  support  during  debriefing  sessions  with  caregivers.  These  sessions  are  meant  to  provide  updates  and  feedback  as  well  as  emotional  support.  All  caregivers  who  participated  in  the  FGD  agreed  that  the  nature  of  their  work  requires  a  lot  of  emotional  support  and  were  grateful  that  it  was  being  provided.    9.3.6  Important  aspects  of  support  to  caregivers  According  to  study  participants,  IGPs,  training  and  uniforms  were  considered  very  important  aspects  of  caregiver  support.  IGPs  bring  food  and  money  to  carers.  The  knowledge  acquired  through  training  has  given  caregivers  power  and  skills  to  perform  their  caregiving  services  while  uniforms,  T-­‐shirts  and  tennis  shoes  were  viewed  as  important,  especially  in  winter,  and  also  make  carers  look  the  same  regardless  of  their  social  status.  Financial  incentives,  though  not  being  offered,  were  considered  important  as  well.    9.3.7  What  would  happen  if  compensation  stops?  The  general  agreement  from  the  FGD  was  that  stopping  the  current  support  to  caregivers  would  have  a  serious  impact  on  the  project.  One  carer  had  this  to  say:  ‘If  IGPs  are  stopped,  work  will  be  greatly  affected.  Without  IGPs,  we  will  put  more  effort  on  working  for  our  families  rather  than  helping  others.’  Others  thought  stopping  the  reimbursement  of  transport  would  affect  programming.  Stopping  such  support  would  result  in  fewer  people  attending  workshops  and  trainings,  thereby  affecting  the  project.  Uniforms  are  viewed  as  a  key  aspect  in  the  compensation  of  caregivers.  Most  felt  that  without  uniforms  some  will  drop  out  because  they  cannot  afford  decent  clothes  to  look  presentable.  

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One  caregiver  felt  nothing  would  change  because  they  have  been  working  for  years  without  adequate  compensation.  She  was  of  the  view  that  caregivers  who  work  in  other  projects  that  have  stipends  would  be  affected  because  they  are  not  used  to  working  without  payment.    9.3.8  Changes  in  caregiver  compensation  over  time  Changes  to  the  compensation  and  support  to  caregivers  had  been  noted  over  time,  according  to  carers.  Caregivers  used  to  get  both  material  and  financial  compensation  in  the  form  of  cash  incentives,  foodpacks  and  nutritional  hampers  because  there  were  many  players  supporting  them  during  these  times.  According  to  the  project  coordinator,  the  support  is  no  longer  provided  because  projects  are  now  moving  towards  the  group  concept  where  caregivers  are  trained  to  do  self-­‐help  projects.  Projects  can  no  longer  sustain  the  support  that  was  previously  provided  because  most  projects  are  ‘bleeding’.    9.3.9  What  makes  you  especially  proud  of  the  caregiving  project?  According  to  the  coordinator,  the  PC  project  has  given  the  sick  a  new  lease  of  life.      9.4.0  Caregivers’  best  aspects  of  caregiving  FGD  participants  said  that  working  with  bedridden  patients  and  helping  them  recover,  seeing  many  people  getting  tested  because  of  the  introduction  of  treatment/ARVs,  and  the  fact  that  people  are  adhering  to  drugs  are  the  best  elements  of  the  PC  project.  Carers  also  spoke  highly  of  the  education/knowledge  that  carers  are  getting  from  the  PC  project  and  the  respect  they  command  because  of  their  involvement  in  it.    9.4.1  What  are  your  main  concerns  about  the  caregiving  project?  The  coordinator  had  this  to  say  about  her  concerns:  ‘I  have  one  major  question  I  always  ask  myself  and  the  question  is:  “If  this  group  of  caregivers  is  gone,  are  we  ever  going  to  get  other  people  like  them?  What  is  going  to  happen  to  caregiving?”’  She  strongly  felt  that  the  older  generation  of  caregivers  is  dedicated  and  continues  to  work  with  or  without  adequate  compensation.  She  said  though  policies  are  in  place  to  support  caregivers,  they  do  not  translate  into  any  benefits.  She  feels  they  need  more  benefits  than  they  are  getting.  FGD  participants  were  concerned  about  the  white  garment  churches  who  continue  to  discourage  their  members  from  taking  medication  including  ARVs,  as  this  is  working  against  their  efforts.  They  were  also  concerned  that  clinics  at  times  run  out  of  drugs  including  ARVs,  further  complicating  the  condition  of  patients  on  the  recovery  path.  Some  families  totally  ignore  their  sick  relatives  and  leave  everything  to  secondary  caregivers  who  might  be  overwhelmed.  Lack  of  financial  incentives  was  a  concern  to  caregivers,  as  one  had  this  to  say:  ‘We  do  not  receive  any  form  of  payment  and  sometimes  visit  patients  dirty  because  we  cannot  afford  to  buy  soap.’  Caregivers  said  they  would  appreciate  a  monthly  allowance  to  help  them  look  presentable.    9.4  Explore  programme  staff  perceptions  of  caregivers’  compensation  According  to  the  project  coordinator,  the  PC  project  has  a  pool  of  hard-­‐working  caregivers,  who  remain  dedicated  to  their  cause  even  though  they  are  not  paid  for  their  efforts.  She  said  what  they  are  getting  as  compensation  does  not  reflect  the  value  of  the  work  that  they  are  doing,  citing  the  example  of  village  health  workers  who  are  paid  by  the  government  while  carers  who  work  harder  remain  neglected.  She  said  carers  who  are  qualified  and  who  show  interest  in  up-­‐scaling  their  skills  by  going  for  further  training,  even  beyond  caregiving,  such  as  nurse  training,  should  be  given  the  platform  and  support  to  do  so.  

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 9.5  Identify  gaps  in  provision  of  support  from  caregivers’  perspectives  9.5.1  Important  forms  of  compensation  not  available  to  caregivers  According  to  responses  from  the  study  participants,  the  following  are  gaps  in  the  provision  of  support  to  caregivers:    

• Most  caregivers  rely  on  vending  for  their  survival  and  expressed  concern  that  workshops  take  away  time  from  their  income-­‐earning  activities.  They  are  of  the  view  that  a  workshop  allowance  would  help  compensate  for  the  lost  income.  

• All  caregivers  were  aware  that  they  do  caregiving  on  a  voluntary  basis  and  would  appreciate  a  token  of  appreciation/stipend  to  enable  them  to  buy  soap  and  other  necessities.  They  valued  the  IGPs,  especially  the  ISAL,  but  expressed  concern  with  some  IGPs  such  as  goat-­‐rearing  which  take  a  long  time  before  the  members  start  benefiting.  

• Bicycles  were  viewed  as  very  important  equipment  for  caregiving  work  because  they  enable  caregivers  to  visit  patients  faster,  and  free  them  to  do  income-­‐earning  activities  as  well  as  cut  travel  expenses  to  submit  reports.  

• Medical,  education  and  funeral  assistance  were  all  considered  important  but  missing  elements  in  the  compensation  and  support  of  caregivers.  

• Caregivers  who  are  qualified  and  are  interested  in  up-­‐scaling  their  skills  such  as  nurse  training  should  be  given  career  guidance  and  encouragement  to  achieve  their  dreams.  

• One  participant  had  this  to  say:  ‘Housemaids  do  not  work  hard  but  get  about  US$180  a  month.  We  work  harder  and  we  get  nothing.  I  do  not  think  our  children  will  be  able  to  do  what  we  are  doing,  because  one  thing  for  sure  is  they  will  not  be  willing  to  work  for  nothing.  It  is  better  to  get  US$10  a  month  than  nothing  at  all.’    

9.5.2  Have  you  ever  thought  of  stopping  caregiving?  The  majority  of  caregivers  said  they  had  thought  of  stopping  caregiving  because  of  a  number  of  factors.  They  noted  that  workshops  are  eating  into  their  income-­‐earning  time,  non-­‐availability  of  financial  incentives  in  the  PC  project  and  the  transport  costs  related  to  the  submission  of  reports.  An  example  is  one  carer  who  requires  US$2  every  month  for  bus  fares  to  submit  reports.  Some  carers  had  thought  of  stopping  because  of  the  costs  incurred  in  assisting  care  receivers  (with  food  handouts  and  soap).  The  main  reason  why  caregivers  have  not  stopped  is  because  they  are  hopeful  that  one  day  they  will  get  recognition  and  rewards  for  their  hard  work,  while  some  say  they  cannot  turn  their  backs  on  the  patients  who  have  relied  so  much  on  them  for  assistance.    9.5.3  Do  you  know  people  who  have  stopped  caregiving?  The  project  coordinator  said  she  knew  of  one  female  caregiver  from  the  PC  project  who  had  left  for  greener  pastures  in  South  Africa.  The  project  coordinator  was  not  sure  what  she  was  doing  in  South  Africa.  Caregivers  were  aware  of  caregivers  who  had  left  the  palliative  care  and  other  projects.  The  table  below  shows  caregivers  who  had  left  the  palliative  care  and  the  CHBC  projects,  according  to  FGD  participants.    Table  3  

AGE   SEX   EDUCATION   PROJECT   WHAT  THEY  ARE  DOING  NOW  34   F   Completed  secondary   PC   Caregiving  in  South  Africa  30s   F   Not  known   GF/HOSPAZ   Domestic  work  in  Bulawayo  

 

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30s   M   Completed  secondary   GF/HOSPAZ   Working  in  a  diamond  mine    

 

Unconfirmed  reports  from  carers  say  one  young  caregiver,  32  years  old  (education  not  known),  had  gone  back  to  sex  work  after  failing  to  get  financial  incentives  from  caregiving.  Two  other  females  were  rumoured  to  have  left  CHBC;  one  was  said  to  be  doing  vegetable  vending  in  Mutare  town  and  the  whereabouts  of  the  second  woman  were  not  known.    

 9.6.  Identify  basic  costs  of  support  to  caregivers  9.6.1  Time  for  caregiving  The  study  shows  that  caregiving  is  done  on  a  voluntary  basis,  and  as  such  caregivers  have  to  plan  their  day  in  such  a  way  that  they  work  for  their  families  and  then  use  the  remaining  time  helping  others.  This  is  in  line  with  information  from  Tearfund’s  Roots  Guides  publication  series  (background  research)  that  says  carers  must  have  time  to  support  their  families.  According  to  the  project  coordinator,  hours  of  work  for  caregivers  are  not  clearly  specified  but  carers  generally  work  more  than  expected.  Caregivers  take  advantage  of  the  ‘chisi’  day  (a  day  that  people  are  not  allowed  to  work  in  their  fields.  This  is  a  traditional  practice  and  the  day  is  selected  by  the  chief  with  guidance  from  the  spirit  media  of  the  area)  to  visit  their  patients,  to  make  sure  productive  (in  the  sense  of  income-­‐earning)  days  are  reserved  for  income-­‐generating  activities.  It  was  clear  from  the  FGD  that  time  for  caring  is  different  for  each  caregiver  depending  on  the  number  of  patients  one  is  caring  for  and  their  conditions.  Carers  and  the  coordinator  say  they  care  for  an  average  of  between  two  and  six  bedridden  and  housebound  clients,  visited  twice  a  week  (time  with  one  patient  should  be  between  30  and  45  minutes)  and  between  six  and  thirty  up-­‐and-­‐about  clients  who  are  met  once  a  month  through  their  support  groups.      9.6.2  Cost  incurred  by  caregivers  It  was  evident  from  the  FGD  that  caregivers  continue  to  assist  their  patients  in  cash  and  in-­‐kind  so  that  they  can  travel,  have  food  or  buy  basic  commodities  such  as  soap  and  sugar.  One  carer  had  to  sell  a  chicken  to  raise  money  for  her  patient  to  go  and  collect  ARVs  from  the  hospital  because  the  local  clinic  was  out  of  stock.  However,  caregivers  could  not  be  drawn  into  coming  up  with  amounts  they  give  out  to  their  patients.  They  indicated  that  it  is  not  refundable  so  they  do  not  bother  keeping  records.    

10.  Discussion  FACT  The  purpose  of  the  study  was  to  investigate  and  document  the  roles  and  attitudes  towards  caregiver  support  and  compensation  in  Zimbabwe.    From  the  findings  it  was  evident  that  caregivers  under  the  FACT  PC  project  receive  adequate  training  and  refresher  courses  to  enable  them  to  perform  their  roles  well.  They  are  receiving  supportive  and  mentoring  supervision.  They  have  uniforms,  bags,  kits,  umbrellas  and  IGPs.    They  are  very  grateful  for  all  the  support  they  are  getting,  but  they  expect  more  in  terms  of  compensation,  especially  financial  incentives.  Most  caregivers  who  took  part  in  the  study  do  not  have  permanent  employment  so  rely  on  piece  jobs  and  vending.  Workshops  take  time  out  of  their  income-­‐  earning  time  so  they  would  appreciate  a  workshop  allowance  to  compensate  for  the  lost  income.  Since  carers  do  not  have  a  financial  allowance  they  would  appreciate  assistance  with  funeral,  education  and  medical  expenses.  Although  caregivers  are  involved  in  IGPs,  some  are  doing  well  while  others  projects  (such  as  the  goat  rearing)  take  a  long  time  before  members  start  enjoying  benefits.  Carers  suggested  

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that  a  financial  incentive  would  help  cover  them  for  their  immediate  needs  while  they  wait  for  IGP  benefits.    The  majority  of  caregivers  who  took  part  in  the  study  had  at  one  time  thought  of  stopping  caregiving  due  to  of  a  number  of  reasons  that  include  the  non-­‐refunded  transport  costs  they  incur  while  caregiving  and  the  non-­‐availability  of  cash  incentives.  One  carer  had  stopped  caregiving  after  realising  that  caregiving  was  not  able  to  provide  for  her  needs  and  she  is  working  as  a  caregiver  for  a  salary  in  South  Africa.  If  the  existing  compensation  of  carers  is  stopped  the  project  will  be  seriously  impacted.  Stopping  IGPs  would  mean  carers  spending  more  time  working  to  raise  income  rather  than  helping  others.  Should  reimbursements  of  transport  be  stopped  it  will  mean  fewer  people  attending  workshops,  resulting  in  a  deterioration  of  the  quality  of  caregiving.    From  the  interviews  it  was  found  that  the  older  generation  of  caregivers  was  dedicated  and  remained  committed  to  the  project  with  or  without  adequate  compensation.  It  was  not  clear  from  the  study  whether  the  younger  generation  of  caregivers  would  be  willing  to  work  on  a  voluntary  basis,  though  some  participants  in  the  study  confirmed  that  the  younger  generation  of  carers  would  not  be  willing  to  work  for  no  payment.  There  is  a  need  for  further  research  to  look  at  what  would  happen  to  the  caregiving  project  after  the  older  generation  of  caregivers  is  gone.    

11.  Findings  (Island  Hospice)  Island  Hospice  is  a  local  NGO  that  was  established  in  1979.  It  was  the  first  hospice  in  Africa  and  a  well-­‐known  centre  of  excellence  in  the  provision  of  palliative  care  in  Zimbabwe  and  in  the  region.  

11.1  How  has  the  work  that  Island  Hospice  does  on  HBC  changed  over  time?  It  was  evident  from  the  interview  with  the  training  coordinator  that  a  lot  has  changed  in  terms  of  caregiving  work.  Island  Hospice  used  to  provide  home  and  hospital  visits  to  clients  but  now  can  no  longer  afford  hospital  visits  due  to  a  lack  of  funding,  as  this  has  forced  them  to  restructure  and  as  a  result  their  office  staff  is  limited.  The  project  used  to  provide  care  to  cancer  patients  only  but  later  care  was  extended  to  HIV,  motor  neuron  disorder  and  patients  with  renal  failure,  plus  bereavement  services.  This  extension  happened  after  the  realisation  that  cancer  was  not  the  only  terminal  illness  people  were  facing.    The  CHBC  project  used  to  focus  on  adult  carers  only  but  now  includes  younger  carers  after  it  was  realised  that  there  were  young  people  who  were  taking  care  of  their  sick  relatives.  After  young  carers  are  identified  by  adult  carers  (secondary  caregivers),  they  are  given  appropriate  training  not  to  become  community  carers  but  to  be  able  to  provide  care  to  their  relatives.  The  interview  also  revealed  that  caregivers  are  no  longer  willing  to  work  for  nothing;  they  require  compensation,  especially  financial,  to  provide  for  their  families.  This  finding  means  that  carers  are  always  expecting  financial  payment  for  the  caregiving  responsibilities  they  perform  regardless  of  whether  payment  was  promised  or  not  when  they  enrolled.  They  are  working  in  the  hope  that  some  day  they  will  get  paid.      11.2  Forms  of  training  offered    Most  of  the  training  offered  by  Island  Hospice  is  not  initial  training  to  caregivers.  Instead  Island  Hospice  provides  the  palliative  care  component  to  carers  who  are  already  working  as  caregivers.  Training  is  provided  to  Island  Hospice’s  own  caregivers  as  well  as  those  of  other  organisations.  The  forms  of  training  vary  according  to  the  group.  The  commonly  used  forms  are  the  lecture  method,  PowerPoint  presentations,  discussions  and  case  studies.    

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For  Tearfund  partners,  the  training  offered  covers  hypertension,  epilepsy,  TB,  cancer,  HIV,  ART,  disclosure,  end  of  life,  bereavement,  self-­‐care,  needs  of  a  dying  child,  roles  of  a  caregiver,  recording  and  report  writing,  pain  assessment  and  ethical  issues.      11.3  For  how  many  organisations  does  Island  Hospice  provide  training  for?  Island  Hospice  provides  training  in  Zimbabwe  and  in  the  region.  According  to  the  training  coordinator,  Island  Hospice  has  facilitated  training  in  Botswana,  Mozambique,  Namibia  and  Tanzania.  In  Zimbabwe  they  have  facilitated  training  for  government  ministries/departments,  the  University  of  Zimbabwe’s  medical  school,  health  professionals,  faith  healers  and  the  clergy,  international  and  local  NGOs  and  FBOs.  Names  of  organisations  for  which  training  has  been  facilitated  include  but  are  not  limited  to  the  following:  CARE  International  in  Zimbabwe,  World  Vision  International,  Action  Aid,  Catholic  Relief  Services,  UNICEF,  Zimbabwe  AIDS  Network,  Catholic  Agency  for  Overseas  Development,  Zimbabwe  Prison  Services  and  FACT.    11.4  How  has  Island  Hospice’s  work  on  training  caregivers  changed  over  time  in  five  to  seven  years?  The  content  of  training  has  not  changed  much;  it  is  still  the  same  PC  with  the  exception  of  additional  information.  The  forms  of  training  are  varied  depending  on  the  background  of  the  group.  Forms  of  training  used  for  medical  students  will  be  different  from  forms  used  with  caregivers.  While  PowerPoint  presentations  and  case  studies  may  be  used  with  health  professionals,  flipcharts  and  the  lecture  method  could  be  appropriate  for  caregivers.  Varied  training  forms  are  employed  for  better  understanding.    11.5  What  practices  has  Island  Hospice  seen  in  organisations  for  which  it  trains  in  respect  of  compensation  of  caregivers?  Table  4  below  shows  practices  noted  by  Island  Hospice  in  respect  of  caregiver  compensation  in  organisations  for  which  it  trains  carers.    Table  4  Types  of  support                                                  Description   All/some  Financial  support   Caregivers  not  well  supported  in  Zimbabwe.  

For  most  organisations  reimbursement  of  transport  costs  only.  

Bad  practice:  reasonable  support  needed  

In-­‐kind  support  for  caregivers  

Organisations  provide  uniforms  to  caregivers.  Caregivers  are  trained  and  get  seed  money  for  IGPs.  

IGPs:  good  practice,  as  carers  will  have  something  to  fall  back  on  

Equipment  support  

Kits  are  available  only  for  deserving  patients.    

Good  practice  

In-­‐kind  support  to  cared-­‐for  

They  get  drugs  from  the  local  clinics,  though  they  are  not  always  available.  

Bad  practice    

Emotional  support   Caregivers  are  encouraged  to  join  support  groups  in  order  to  share  information  and  experiences.  Emotional  support  provided  through  debriefing  sessions,  and  some  organisations  such  as  FACT  have  employed  a  social  worker  to  work  with  carers  to  make  sure  there  is  someone  to  assist  carers  at  all  times.  

     Good  practice    

Other   Nothing  given.    

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 11.5.1  Financial  support  It  is  clear  that  caregivers  are  no  longer  willing  to  work  for  nothing;  they  expect  payment,  especially  financial  payment.  Without  financial  payment  burnout  increases,  leading  to  dropping  out  or  less  effort  being  put  into  caregiving.  According  to  the  training  coordinator,  there  is  a  need  to  learn  from  Namibia  and  Botswana  on  how  they  compensate  their  secondary  caregivers.    11.5.2  In-­‐kind  support  Most  organisations  offer  uniforms  to  all  caregivers.  IGPs  are  often  used  to  generate  income  for  carers  and  to  motivate  them.  FACT  has  IGPs  for  carers.    11.5.3  On  equipment,  the  training  coordinator  mentioned  kits  as  the  commonly  used  equipment,  however  it  was  clear  that  replenishing  the  kits  was  a  challenge  for  most  organisations.  She  recommended  that  all  caregiving  organisations  should  have  access  to  wheelchairs  and  walking  sticks  to  lend  out  to  needy  patients.    11.5.4  In-­‐kind  support  to  care  receivers  Patients  are  supposed  to  be  getting  drugs  from  the  local  clinics  but  these  are  not  always  available.  No  organisation  was  offering  foodpacks  to  patients.    11.5.5  Emotional  support  The  coordinator  said  that  caregivers  are  encouraged  to  be  part  of  support  groups,  and  to  work  as  a  group  helping  and  sharing  with  each  other.  Organisations  provide  group  debriefing  sessions  to  provide  emotional  support  to  carers.  FACT  has  employed  a  social  worker  to  help  carers  and  this  is  good  because  there  will  be  someone  to  help  carers  at  all  times.  From  her  experience  she  said  that  she  had  seen  organisations  employing  health  professionals  doing  well  in  providing  emotional  support  because  the  professionals  are  well  informed  and  better  equipped  to  deal  with  such  issues.    11.6  Have  you  seen  any  changes  over  time  in  what  organisations  provide  in  respect  of  compensation  of  caregivers?  The  coordinator  pointed  out  that  caregivers  used  to  work  voluntarily  (for  nothing).  Now  efforts  are  underway  to  try  to  provide  financial  incentives,  though  the  figures  being  offered  are  still  low.  For  example,  FACT  and  Island  Hospice  are  being  funded  by  the  Global  Fund  at  UK$14  per  caregiver  per  month.  This  is  a  small  amount;  nevertheless,  a  step  in  the  right  direction.  Donors  are  also  coming  with  IGPs  to  support  carers,  which  is  good  for  sustainability.      11.7  Has  Island  Hospice  ever  employed  caregivers?  Island  Hospice  has  always  employed  carers:  the  Global  Fund  selected  to  work  with  them  because  they  knew  they  had  caregivers.  The  coming  in  of  the  Global  Fund  was  a  blessing  to  them  because  they  were  previously  not  paying  the  carers.  Island  Hospice  has  caregiving  projects  in  Mabvuku  and  Tafara  in  Harare  and  in  Chitungwiza,  funded  by  the  Global  Fund,  while  carers  in  Chikwaka  in  Goromonzi  district  are  not  funded.    11.8  For  what  type  of  people  did  Island  Hospice  provide  care?  Care  has  been  provided  to  patients  with  cancer,  HIV,  motor  neuron  disorder  and  renal  failure.    11.9  Hours  of  work  for  caregivers  The  general  rule  is  that  caregivers  should  not  spend  too  much  time  with  the  sick;  instead,  more  time  should  be  spent  on  income-­‐earning  activities  for  their  own  family.  It  is  recommended  that  they  put  aside  two  or  three  days  per  week  for  caregiving,  but  at  times  the  demands  by  the  Global  Fund  that  one  carer  

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should  have  about  eight  patients  may  mean  more  or  less  time  in  the  field  depending  on  the  conditions  of  the  patients.    11.10  Are  caregivers  permitted  to  support  patients  from  their  own  pocket?  According  to  the  coordinator,  caregivers  are  not  allowed  to  support  patients  from  their  own  pocket.  She  said  carers  should  report  patients  requiring  assistance  to  social  services.  Some  carers  end  up  doing  it  in  order  for  them  to  be  accepted  by  the  patient  or  the  family,  which  is  wrong  in  the  eyes  of  the  training  coordinator.    11.11  Level  of  caregivers  Caregivers  operate  at  three  levels.  There  is  the  focal  point  person  at  the  top,  one  in  each  area  where  Island  Hospice  has  projects.  He/she  is  responsible  for  communicating  with  carers,  coordinating  all  activities,  mobilising  caregivers  for  meetings  and  projects  activities,  and  assisting  at  Island  Hospice  clinics  in  their  area  of  operation.  The  team  leaders  are  responsible  for  coordinating  with  a  number  of  carers  in  the  team,  mobilising  for  meetings  and  other  activities,  communicating  with  the  focal  point  person,  supervising  and  motivating  carers  under  them.    Secondary  caregivers  monitor  patients’  conditions,  keep  records  and  refer  them  to  clinics.  They  impart  communication  skills,  bed  bathing  and  feeding  tips  to  primary  care  givers.    11.12  Briefly  describe  compensation  of  caregivers  under  Island  Hospice  Table  5  below  describes  the  compensation  of  carers  under  Island  Hospice.  .  Table  5  Types  of  support                                                                                        Description   All/some  Financial  support   A  monthly  financial  allowance  of  UK$14  for  carers  in  Harare  and  

Chitungwiza  from  the  Global  Fund  (money  still  to  be  received).  Carers  are  not  happy  about  the  delays  in  payment  since  the  end  of  2012  or  early  2013  when  the  Global  Fund  came  on  board.  

   Some    

In-­‐kind  support  for  caregivers  

All  carers  have  blue  uniforms  and  bags.  Symptom  management  done  for  carers  who  are  living  with  HIV  by  Island  Hospice,  then  referred  to  clinics  for  ARVs.  Staff  contributions  in  the  event  of  a  bereavement  to  assist  the  unfortunate  caregiver.  

All    Some    Some  

Equipment  support  

Island  Hospice  has  wheelchairs  and  walking  sticks  to  lend  to  needy  clients.  

Some  

In-­‐kind  support  for  cared-­‐for  

Nothing  now.  Used  to  get  foodpacks  and  cooking  oil  through  John  Snow  International  (international  NGO)  but  they  stopped  operating  in  Zimbabwe.  

All    Some  

Emotional  support   Debriefing  sessions,  supervisory  group  sessions,  and  mentoring  sessions  are  platforms  for  providing  emotional  support.  Carers  taught  about  self-­‐care  and  encouraged  to  take  time  out.  

   All    

Other   Community  gardens  for  caregivers  with  assistance  from  the  Global  Fund  (training  and  seeds).  In  Chikwaka,  a  solar  dryer  was  donated  for  drying  vegetables.  Carers  are  getting  food  and  income  from  the  

   Some  

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gardens.    11.12.1  Financial  incentives  Caregivers  in  Mabvuku,  Tafara  and  Chitungwiza  are  under  the  Global  Fund  and  are  meant  to  get  UK$14  a  month  but  are  yet  to  get  the  money  since  late  2012  or  early  2013  when  the  funding  agreement  started.  Caregivers  are  not  happy  about  not  yet  receiving  the  promised  payments.  Carers  in  Chikwaka  are  not  getting  any  financial  incentives.  OAK  Foundation  has  promised  to  come  in  and  pay  some  caregivers  about  UK$8  per  month.    11.12.2  In-­‐kind  support  All  caregivers  have  uniforms,  bags  and  a  HBC  kit  provided  by  the  Global  Fund  through  HOSPAZ,  but  kits  are  not  given  to  all  carers,  only  to  carers  with  needy  patients.  Some  of  the  carers  are  living  with  HIV  so  Island  Hospice  does  symptom  management  and  referrals  for  ARVs.  The  coordinator  said  in  the  event  of  bereavement,  Island  Hospice  staff  makes  contributions  to  support  the  unfortunate  caregiver.    11.12.3  Equipment  Island  Hospice  has  wheelchairs  and  walking  sticks  for  needy  patients  but  these  remain  the  property  of  Island  Hospice.  The  coordinator  encourages  all  caregiving  organisations  to  have  these.    11.12.4  In-­‐kind  support  to  patients  Island  Hospice  used  to  provide  foodpacks  and  cooking  oil  to  patients  through  John  Snow  International,  which  provided  food  for  people  living  with  HIV,  before  they  stopped  operating  in  Zimbabwe.      11.12.5  Emotional  support  The  coordinator  was  upbeat  about  this.  She  said,  ‘This  is  our  business;  this  is  what  we  do  best  for  our  caregivers.’  Emotional  support  was  being  provided  for  caregivers  through  debriefing  sessions,  supervisory  sessions,  group  sessions  and  mentorship  sessions.  Carers  are  taught  about  self-­‐care  and  encouraged  to  take  time  out  for  themselves.    11.13  Other  forms  of  support  to  caregivers  Island  Hospice  established  community  gardens  with  the  assistances  of  the  Global  Fund  in  respect  of  training  and  seeds  to  allow  caregivers  to  have  something  to  fall  back  on.  Caregivers  are  getting  money  and  food  from  the  project,  and  orphans  and  other  vulnerable  children  (OVCs)  are  also  getting  vegetables  from  the  gardens.  For  the  Chikwaka  garden,  solar  dryers  were  provided  years  back  for  drying  vegetables  but  the  coordinator  was  not  sure  whether  they  are  still  there.    11.14  What  are  your  mains  concerns  about  caregiving  in  Zimbabwe?  The  coordinator  said  that  caregivers  do  not  get  the  support  they  deserve,  and  that  organisations  fail  to  assist  caregivers  in  need  of  help  because  they  cannot  afford  to  do  so.  Carers  have  children  who  want  food  and  want  to  go  to  school  like  other  children  so  need  to  be  supported.  The  coordinator  was  in  favour  of  caregiver  compensation  even  if  it  meant  putting  their  children  under  the  government’s  Basic  Education  Assistance  Module,  as  a  way  of  helping  them.  This  finding  means  carers  are  not  getting  adequate  compensation  and  deserve  more  than  they  are  getting  now.    11.15  Additional  information?    The  coordinator  felt  that  caregivers  who  are  intelligent  and  are  qualified  should  be  recommended  for  further  training,  such  as  nurses  training.  They  need  to  be  guided  towards  achieving  such  dreams.    

12.  Recommendations  

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The  key  recommendations  provided  here  are  relevant  for  caregiver  compensation  strengthening  across  the  case  study  organisations  and  represent  actionable  recommendations  to  encourage  and  improve  partnerships  meant  to  support  caregivers.    

• Implement  supportive  supervision  and  mentoring  approaches  that  allow  carers  to  learn  from  experienced  colleagues;  investigate  possible  use  of  retired,  certified  social  workers  to  provide  supportive  supervision.  

• Given  that  most  caregivers  rely  on  vending  and  piece  jobs  for  survival,  consider  a  workshop  allowance  to  compensate  for  the  lost  income  during  workshops.  

• For  sustainability,  explore  possible  funding  for  IGPs  to  assist  caregivers  in  getting  an  economic  foothold.  

• Investigate  possible  links/partnerships  with  organisations  providing  training  services  for  ongoing  refresher  trainings  for  carers.  

• Provide  compensation  that  enables  carers  who  are  not  gainfully  employed  (ie  in  paid  employment)  to  be  able  to  provide  for  their  families  and  at  the  same  time  go  to  work  motivated  (eg  stipends  and  travel  reimbursements).  Seek  a  careful  balance  between  compensation  and  responsibilities.  

• Explore  possible  links  with  organisations  for  the  provision  of  material  support  such  as  uniforms,  bags,  hats,  kits  and  assistance  with  general  coordination  of  activities  at  district  level.  

• Given  that  caregiving  is  vital  not  only  to  care  recipients,  but  also  to  the  broader  economy,  consider  exploring  possibilities  of  offering  medical,  educational  and  funeral  assistance  for  carers  through  joint  partnerships.  

• Consider  putting  in  place  a  tracking  mechanism  to  document  the  cost  of  support  to  caregivers  and  the  costs  incurred  by  carers  (out-­‐of-­‐pocket  expenses).  

 13.  Conclusions  

As  can  be  seen  from  the  information  presented,  caregivers  are  vital  not  only  to  those  to  whom  they  provide  care,  but  also  to  the  formal  health  system  and  the  broader  economy.  They  are  a  pool  of  dedicated  cadres  who  are  committed  to  their  work.  Even  though  the  carers  know  that  they  work  as  volunteers,  they  always  expect  meaningful  compensation,  especially  financial  incentives.  Besides  financial  incentives,  carers  also  expect  to  have  adequate  training  (initial  and  refreshers),  supportive  and  mentoring  supervision,  kits,  uniforms,  tennis  shoes,  bags,  bicycles,  IGPs,  assisted  funeral  cover  and  educational  assistance.  They  also  expect  compensation  for  income-­‐earning  time  lost  through  attending  workshops  (workshop  allowance).    The  two  case  study  organisations  came  into  being  in  response  to  HIV,  but  since  this  time  the  scope  has  expanded  to  include  other  chronic  illnesses  such  as  TB,  cancer,  diabetes,  epilepsy  and  hypertension.  The  selection  of  carers  is  done  transparently  and  male  participation  is  very  low.  Carers’  roles  have  changed  because  of  the  presence  of  primary  caregivers  who  have  taken  over  some  roles  previously  performed  by  secondary  carers.  One  interesting  observation  was  that  the  majority  of  carers  who  are  compensated  and  supported  had  thought  of  stopping  caregiving,  while  carers  who  are  not  compensated  but  live  with  HIV  had  not  thought  of  stopping  because  of  the  attachment  they  have  to  the  project.    There  is  a  need  for  further  research  to  investigate  the  future  of  caregiving  projects,  taking  into  account  the  needs  of  the  new  generation  of  caregivers  who  might  not  be  willing  to  work  for  no  payment.    

14.  References  Cranswick,  K.  (2003).  General  Social  Survey  Cycle  16:  Caring  for  an  Aging  Society.  Ottawa:  Statistics  Canada.  

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George,  L.  K.  and  Gwyther,  L.  P.  (1986).  Caregiver’s  well-­‐being:  a  multidimensional  examination  of  family  caregivers  of  demented  adults.  Gerontologist,  26  (3),  253–259.  Tearfund.  Consolidated  interim  report  on  interviews  with  international  NGOs.