In April 2016, we travelled to Zimbabwe for a monitoring visit by Hospice UK on the Big Lottery funded project led in-country by Island Hospice and Healthcare Service.
The COLLABORATE: Zimbabwe HIV Care Project is a joint initiative which aims to provide support and improve the quality of life for people living with and affected by HIV in Zimbabwe.
What is the COLLABORATE Project?
The COLLABORATE project was designed based on a comprehensive situation analysis which highlighted an overwhelming need for palliative care service provision in the Goromonzi district of Zimbabwe.
The core set of activities include: delivering HIV palliative care; provision of psychosocial support to bereaved and affected children; workshops for young carers; Internal Savings and Lending Schemes; the strengthening of community health centre committees; advocacy and mentorship to improve availability of the palliative care medications at district and community level; and to share learning.
The project centres on the idea of collaboration between different NGO, community and government partners, strengthening and supporting community resilience and building capacity to provide palliative care.
What has been achieved?
The success of the project was clear. We visited all the sites across Goromonzi, and met with community caregivers, people living with HIV, healthcare providers and young carers.
Positive experiences of the project were reiterated repeatedly, and the respect for the professionalism, skills and compassion of the Island Hospice staff was remarkable.
A key success has been building a strong cadre of caregivers who are bridging the gaps between communities and health facilities to provide comprehensive care.
The project has seen morphine being dispensed for the first time in the Makumbe hospital, enabling people to access this critical pain relief and tackling the fears of health professionals to stock and prescribe.
These are some of the things we heard:
- “Where before a family (of someone who was sick) was isolating the person, now they are seeing love from the caregiver and they are emulating it.” (Health Care Committee member).
- “Palliative care has united the community. It has brought unity among the people for the betterment of the patient.” (Male caregiver).
- “We face a lot of stress in our families, but now we get a place to get counselling and education.” (People Living with HIV support group member).
- “Everyone’s eyes have been opened, including the pharmacists. Palliative care is everybody business.” (Matron, Makumbe Hospital).
- “There has been remarkable improvement in health. Before people just died. People now know how to take their medication and there has been a decrease in mortality.” (Representative of community leaders).
- “We learned how to generate money and we took the knowledge to our patients.” (Caregiver on the ISALS scheme).
- “Children are learning and accepting their status and adhering to medications.” (Caregiver).
- “Since we have become caregivers we have been uplifted in the community. Thank you for palliative care. Many people feared disclosing their status before Island came. Now we have reduced (the number of) bedridden patients.” (Caregiver).
- “Now we understand palliative care, there is bereavement support and the relationship goes on.” (Caregiver).
What are the challenges?
Food
- “Hunger is the biggest challenge. They [the patients] don’t have anything to eat and so they can’t take their medications. But sometimes the caregiver doesn’t have food either.” (Caregiver).
With Zimbabwe experiencing its second drought in two years, one of the major challenges is the lack of food. We saw patches of maize, the staple diet of most Zimbabweans, which were wilting, bare and dying, when they should have been large, ripe and ready to harvest. While communities were able to get through one year on food stores, the fear following this second drought is palpable and real. Solutions are not forthcoming.
Lack of medications
- “Sometimes it is hard to go back to patients because there are no medications in the clinic. They are short of anti-biotics and pain killers.” (Caregiver).
The supply chain for medications is complex. From community health centres to the district hospitals, medications are in short supply if not funded by external bodies (like ARVs). There has been significant success in getting morphine to be stocked and dispensed from the district hospital in Makumbe. However, there are profound challenges in influencing the national system to ensure availability of medications across communities.
Distance and transport
- “The clinic doesn’t have a vehicle and some patients are bedridden. How will the nurse get there?” (Caregiver).
We witnessed first-hand the long distances caregivers have to travel to reach their patients and the health centres. Patients who need to go to healthcare centres or the district hospital face huge distances and costly transport, which will often be completely unaffordable.
Poverty
- “We are willing to continue [as a caregiver], but sometimes I need the money to buy food and a grinding mill. There are other pressing needs.” (Caregiver).
While the exact figures for unemployment in Zimbabwe are unclear and complicated by work in the informal sector, some have estimated that it may be as high as 95%. The poverty in Zimbabwe is acute. Some health centres now charge nominal fees for consultations, a situation which may make access to care prohibitive for many in the population.
Management of acute pain
- “Major problems are referred to Island e.g. patients with acute pain. Where will we refer when Island is gone?” (Caregiver).
The combination of the issue of access to medications alongside the distance to the district hospital creates challenges in patients with acute pain.
Island is doing a tremendous job in increasing access to morphine and building the skills and knowledge of caregivers and health providers to identify, refer and treat pain.
While the skills will remain at the end of the project, concern remains around availability and accessibility of medications for pain, particularly when people are unable to travel.
What we learnt
Community resilience and compassion
- “The topic of compassion is not at all religious business; it is important to know it is human business, it is a question of human survival.” (Dalai Lama).
Compassion exists within us and within our communities. It is latent and present from the moment our mothers hold us when we are born.
It is an asset which we can use, nurture and develop to benefit ourselves and those in our communities. Goromonzi showed an excellent example of what the term ‘compassionate communities’ actually means.
The communities we visited showed great resilience in the face of enormous challenges. The positivity, commitment, passion and energy, particularly of the community caregivers, is remarkable.
Dedication and expertise
- “Island Hospice is our mother, our husband, our friend, our everything.” (Female member of the support group for people living with HIV).
The profound respect and gratitude for staff at Island was heard everywhere we went. From the support groups, to the district officials, to the hospital healthcare professionals to the community leaders.
The care that Island provide is fantastic; developed to be sustainable and supportive, building on community assets and focusing on collaboration and meaningful partnerships.
A final note
Island Hospice and Healthcare Service – you rock. Thank you for being a fantastic partner to Hospice UK and the fabulous work you do to alleviate pain and suffering in Zimbabwe.
And we are grateful to the community caregivers, who are on the ground, day after day, providing care and support to people in the most difficult situations.
Without these amazing men and women, this project, and the successes it has seen so far, would not exist.
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