Empowering communities and health systems to address health related suffering in host and humanitarian settings through capacity building and integration funded by UKAID.

Background

Palliative care (PC) is rarely prioritised or integrated in humanitarian settings and so evidence is needed from field settings to inform integration of PC in health systems. Uganda is the 3^rd largest host for refugees globally, and previous work with Ministry of Health of Uganda (MOH), Peace Hospice Adjumani (PEACHOA), Palliative Care Education and Research Consortium (PcERC) and Cairdeas (IPCT) to integrate PC in Adjumani district, with a population of 210,000 refugees, 240,000 hosts) included training of Village Health Teams (VHTs) and Healthcare Workers (HCWs). This is now being extended to the new Obongi district with a population of 120,000 refugees and 50,000 hosts.

Rapid Systems Appraisal (RSA):

A RSA was conducted with the aim to evaluate the setting and systems affecting chronic diseases and health related suffering for refugees and host populations in both Adjumani and Obongi districts.

The methods:

This included documentary review, mapping of key stakeholders, observing of practice, qualitative interviews with 4 groups of informants: patients and their caregivers, palliative care providers, key opinion leaders; MOH, humanitarian stakeholders, community and healthcare workers. 

The broad themes following thematic coding and analysis of 40 interviews included

• Health system issues; planning, resources, capacity, pathways of care, integration
• Understanding of palliative care
• Education and training
• Impact of palliative care
• Challenges and gaps
• Community and HCW experience
• Culture and stigma

Results: 

Health system issues; these included issues relating to planning, resources, capacity building, pathways of care, integration

“There are a few things that can make you be able to integrate palliative care; One is ownership...it is not a peace hospice project but an Obongi district government programme. Ownership goes with leadership... the members for health need to take the leadership.”  Hon Dr.  MP 

“At community level it is only one person and this remains a challenge. …plan for the future of palliative care strategically… so that there is no gap in patients care” UNHCR

“At the Humanitarian aspect, the time of making proposals to the funders on what they are going to implement, the picture is of comprehensive health care, which is always sent out but palliative care may not come out pronounced and there is need to have that strong advocacy of this component. There is time for all this to change through advocacy and training”   Dr MTI

Understanding of palliative care and planning

"I thought palliative care was last office. Where there is nothing we can do and we just care for them, as they wait for their own death and I never thought this would need any technical person." Health worker

"Palliative care is like manna from heaven’ ‘I pledge to include it in district strategic planning’" RDC

"Palliative care is very important...it has touched my heart…this programme is the best investment for so far because it prepares the heart of the people ...we are answerable in future, when I was sick and bedridden you gave me care....’" Community leader

"There are so many people in the community with chronic illness but by the time we discover them, it is too late so we need to create awareness and also embrace palliative care’" DHO

Education and training

“One of the challenges is the skilled staff to give the services, a few staff who have been trained and even commitment is a challenge

Doing capacity building training is very important....training and skilling primary and secondary care ...but also include leaders so they know what is being implemented.” Health worker

"VHTs, they are really so useful in the community because they can identify any condition, report and refer. So building the capacity of the VHTs is very important, and the component of research is equally very good, it gives evidence.’"Health care leader

Community experience

"We need to work together and be on radio to share. People can be abandoned mostly because of ignorance...people think someone who is sick can infect them...such as cancer. This programme is the best investment, so far because it prepares the heart of the people’"Community leader

"But our communities here thinks that when someone is very sick, they should be cared for in the hospital and die from hospital, so taking them home is considered to be a taboo’" Health care leader

"We thank our Almighty God to have given heart to the people of this organisation to come and us...this is God’s love to our district...without God’s love they would not come this way’" Faith leader

Impact of Palliative care

"So whenever I pay a visit, it’s like am bringing glory to their home. We really smile, we really laugh so whenever we are in that community, they are really appreciating our service and always tell us that without us, they would have not lived up to this time. That is encouraging. So they are really pleasing me so much, I bring hope to them, but when I lose one, I’ve also lost hope too.’" PC worker

Challenges and gaps

"Facilities don’t have morphine and other drugs but also health workers need to be trained to be able to assess these patients and manage their symptoms." Health worker at health centre III

"Because I lack the knowledge, I just don’t even attend to them,  I just refer them to other Health care workers As health workers we sometimes do little to help these patients with chronic illness, for example at times their symptoms are so complex that we can’t manage them because of knowledge gap."  Health worker at health centre II

"These patients have a lot of symptom burden especially pain which is always uncontrolled with available pain killer that we give them. Available pain killers include Paracetamol and diclofenac at times ibuprofen.  We don’t have morphine at our facility. " Medical Clinical Officer

Culture and stigma

"But our communities here thinks that when someone is very sick, they should be cared for in the hospital and die from hospital, so taking them home is considered to be a taboo that is the other challenge " Doctor

"When they have chronic illness they can’t support themselves, but also the refugees have different cultures and this can be a problem taking care of them, some use their local herbs." Nurse

 Conclusions:

PC service integration is needed and previous interventions were effective but we need to extend to all aspects of planning and implementation.

Refugee and host communities must have ownership and the services should be tailored to the community needs.

Further evidence on the PC needs will be collected including novel tools to understand community experience.

A comprehensive education package for HCW, VHTs and family caregivers and community mentors will be implemented and evaluated.

Acknowledgement

Many thanks to those who participated in this RSA which was led by Dr. Mhoira Leng, Elizabeth Nabirye, Vicky Opia, Godfrey Oiti and the entire PEACHOA team. Special thanks to all our participants (patients and families, VHTs, Health works, opinion leader) and funders.

Mehac team received a call from a mother informing about shortage of her daughter’s medicines during the end of the first wave of the Covid-19 pandemic. As she sounded frantic over the phone, enquiries were made about her wellbeing. She was in tears and reported that she was in pain as she had met with an accident that day. Although she was advised X-Ray by the local hospital she had rushed back home as she was worried about her daughter, living with chronic mental illness, being alone at home.  Mehac team visited their house taking precautions and following Covid-19 guidelines, delivered medicines and oversaw arrangements for mother’s consultation. Though in pain, she was grateful that medicines had reached home, as she could not have gone for her own consultations without being assured about her daughter’s wellbeing.

Mehac Foundation, a partner of Cairdeas IPCT, aims at improving the quality of lives of people with chronic mental illnesses and their families.  

The Covid-19 pandemic came up with a unique set of challenges for everyone and Mehac like other organisations had to plan and bring many changes in the way that care was delivered. 

Our models were based in the community, with clinics and home visits run regularly for providing care and ensuring availability of medications. The complete lockdown of the first wave made us reflect thoroughly and adapt to the changes. 

We had started early in February 2020, as Kerala, the state that we are based in, was the first state affected by Covid-19 in India. We started with strengthening our database regarding people under care, the information on vulnerable groups especially the migrants, those who were old and bedridden, single women and men, those with other chronic illnesses were marked to pay extra attention. So when the complete lockdown was announced in March 2020, we were quite ready to keep focus on the care programs.  Out of 2852 people who were on long-term care, we identified people who were stable and needed only voice calls. Out of those who required follow up, we were able to provide tele follow up directly for 78% and indirectly for 22% through voice calls. The network built over years of work on ground proved to be extremely useful. Medications were distributed by community health workers and neighbors of people who needed care took the responsibility as well. We also partnered with governmental agencies and other NGOs to provide psychosocial support especially to migrants and those who were Covid-19 positive and/or in quarantine.

This was a big learning for us, care could be provided using technology enabled gadgets and apps. This helped us by the second wave which was more severe in India with enormous losses and mental health issues as a consequence. We were able to find funds for a helpline for people under our care to reach us easily as well as the public, the youth and adolescents in particular. In that specific time frame we were able to engage in 500 sessions and help at least 100 persons to register for continuous services.

Loss of jobs, unemployment and income issues posed hurdles in people's lives. They were struggling to meet their daily needs let alone think of attending to needs of the illnesses they had. The Government of Kerala had initiated strong support measures, still many struggled to reach those support systems, because of the lockdown and fear of Covid-19 infection. Mehac did extra fundraising for the social needs, providing ration kits, monetary support, helping people to make hospital visits, consolations and also facilitating admissions. 

We know that healthcare workers in particular were at risk for distress, burn out during the pandemic. We took proactive measures to address these with regular team meetings, sharing and discussing issues. Skill enhancement like planning, communication during crises, and strategy were few of the important areas of focus.

This whole experience in 18 months has led to several reflections and discussions on the future of the care services, the need for change, preparedness and measures to be in place for adaptation. Change is inevitable and we need to be ready without losing focus on our goals.

Hello all Cairdeas supporters! 

I humbly would like to take this opportunity to express gratitude to Cairdeas International Palliative Care Trust in a very special way, from the bottom of my heart.  I am grateful for the gracious opportunity to pursue a Bachelor’s Degree in Social work and Social Administration from Uganda Christian University.  

My greatest achievements during my studies have been excelling with good grades and becoming  a professional Social Worker. I can now apply the theoretical social work knowledge and skills so as to support and help the patients and families with palliative care needs better.

It has been a wonderful experience for me where it has broadened my knowledge base in applying the practical skills, procedures, techniques and methods being used in assessing social needs of patients with palliative care needs. 

It has also contributed to my development as a person where I have been able to demonstrate abilities in problem solving, communication and counselling of clients’ with palliative care needs thus making a difference in the lives of patients and families. 

“You are indeed very unique and special to me. I had never thought I would ever have the opportunity of going back to further my education but through your support this has been possible and a success! May God bless each one of you for contributing towards my studies.  Thank you for loving me, you are God sent”. 

I now await my graduation which will take place on the 22nd October 2021.