We are eager to incorporate Photovoice into the Transform Project in the Adjumani and Obongi districts of Uganda. Photovoice adds a deeper layer to the current data collection, helping us to better understand the lived experiences of severe health-related suffering (SHS) whilst staying in fragile communities. Photovoice is rather new in palliative care research in Africa, but on 22nd August we were able to receive a refresher training from Dr Jane Bates who utilised Photovoice with patients and their families and caregivers in Malawi.

What is Photovoice exactly? Perhaps we can first tell you what it is not: Photovoice is not when a medical researcher visits a new area, evaluates a patient while taking pictures of the setting, then shares a story of what they found. Rather Photovoice is a dialogue where the patients (and/or families and caregivers) use photography to express themselves and share what is most important to them. Photovoice is a great addition to advocacy and self-representation, for it allows the community to speak for themselves by removing the newcomer’s perspective in the storytelling. Dr Jane Bates includes the three goals of Photovoice in her article, Enhanced patient research participation: a Photovoice study in Blantyre Malawi: 
1.    To enable people to record and reflect their communities’ strengths and concerns.
2.    To promote critical dialogue and knowledge about important issues through large and small group discussion of photographs.
3.    To reach policymakers.

During the refresher training, Dr Jane Bates spoke about her experiences of using Photovoice among patients with palliative care needs and their families and caregivers. As palliative care, in itself, has a patient-centred approach, it was thought best to use this participatory method of research, allowing those being ‘researched’ in Malawi to become the ‘researcher.’ Conducting the study at a community-based palliative clinic, they recruited six patients and seven carers as co-researchers during a period of four months. Their co-researchers were given digital cameras and through some nine group sessions, they took pictures, selected, and analysed their printed photos, later captioning a few of them in their own words. This process was reported to aid in open dialogue and, at times, assist in clinical review. The third goal of reaching policymakers through Photovoice was achieved at the end of study when they held a photo exhibition and advocacy event, which was attended by the local leaders and media.

Dr Jane Bates also discussed some cautions or concerns raised from their Photovoice study. For instance, this method of research excluded some patients with severe palliative care needs who could either not attend the sessions or see the pictures well. For others who were able to work, the structure of the group meetings was a challenge and they ended up missing some sessions as they needed to work and provide for themselves. 

She challenged the leaders of the Transform Project to consider how we could bring Photovoice to Adjamani and Obongi districts, and how we could accommodate those who are more seriously ill and those who need time to work and make a livelihood. We then discussed our proposed research structure that may mitigate these challenges. For one, the trained Village Health Team members (VHTs) carry a smartphone with a camera, so they would work with the patients and their families individually to take photos, select and analyse them. VHTs also do travel to a patient’s home, giving those who are immobile an opportunity to participate and have a voice. Ideally, our VHTs could also liaise with those who are working outside the home and find times to meet and share in the Photovoice research. 

It is clear to the Transform Project leaders that Photovoice is a necessary addition in our data collection. We already have the backbone needed for this participatory research method; the VHTs hold smartphones and have been trained how to use the camera, we have a network of patients, families and other caregivers visited regularly by the VHTs, and now our leadership team has been trained in Photovoice methods and the process. The next step will be sharing what we have learned with the VHTs so they can begin the Photovoice process. 

Liz Nabirye, clinical lead of PcERC and a part of the Transform leadership found the training applicable to more than just our research in Adjumani and Obongi districts. “To me,” she said, “it is not just a methodology to use for this project, but to train our volunteers in the Kampala Hospitals to learn to use Photovoice and engage with our patients and our families. Photovoice is a strong method of getting quality, important information … [we can] work with the patients and their families and make meaning of the photos and what they are communicating to us.” We thank Dr Jane Bates for the invaluable mentorship she has given the team by sharing her own experiences and advising us in integrating Photovoice to our current research. Do stay tuned for more Photovoice updates, coming soon from Uganda!

Intitally shared on the AIDEM, 10th October 2022: On the eve of World Mental Health Day, Dr. Chitra Venkateswaran, Psycho-Oncologist and Clinical Director of Mehac Foundation, interviews Dr. Mhoira E.F. Leng, a renowned international palliative care expert from the United Kingdom. Dr. Mhoira has been instrumental in coordinating pain and palliative care work across the globe. Her vision of palliative care encompasses the values of compassion, dignity, hope, and community involvement.

Highlights from the interview:

[Regarding palliative care]: “we recognize that it's something that needs to be connected deeply, to individuals; individuals affected by palliative care need, individuals who are offering palliative care need, but actually, they together form communities. And if we can connect with meaning, and hope, and values, and what we're going to say about the most marginalized in our communities, to our core humanity, then I think palliative care begins to make sense. If we see it simply as a medical specialty, it stays in the hospital setting and the medical setting.” – Dr Mhoira Leng

“We have a role as a doctor as, as medical professionals, as healthcare professionals, to take care of people who need palliative care. That is probably one of the most important sections of palliative care. But I believe that palliative care as a philosophy has much more relevance in the dimensions of people's lives or in communities.” – Dr Chitra Venkateswaran

“At the core of everything we do are our values, and the values that are distilled out in palliative care, because it deals with such crucial issues such crucial times in our lives, it makes us reflect on and maybe even challenge and develop our values. And I think we've seen this in these last few years with the pressures of a pandemic. We've seen it in Kerala [India] with the floods, and the pressures and challenges that came from that, and different parts of the world different ways. But it brings us back to what's important, what gives our life meaning.” – Dr Mhoira Leng

“Access to medicines like morphine as painkiller [are] absolutely vital. But why is it vital? It's so that when we have our pain controlled, we can have those conversations with our loved ones, we can make the decisions we want to make for our families. And I think it's that transformational ability that palliative care has. And there's one value I think we talk about a lot: compassion, yes. There's … an equation, people are talking about at the moment that compassion is awareness, plus empathy, plus action. And that equals compassion. And I think that's something that we see in the journey of palliative care.” – Dr Mhoira Leng

“That sense of being there for people, even when you don't have all the answers … and you're walking alongside that presence and holding that presence. Again, you can describe it almost like a candle, and you're holding those places between fear and doubt and hope and despair, those you're holding those places, not necessarily with all the answers, but saying ‘we are there,’ ‘we are going to do all we can to improve the quality of what's happening for you.’ But most of all, ‘we won’t abandon you.’ – Dr Mhoira Leng 

“I think that [there is a] balance between all these domains, you know; having a good symptom control, taking care of all the physical symptoms that a person has, but as well as looking into all those spiritual, these emotional aspects, the mental health issues, which again, came up really visibly, you know, noted during the COVID pandemic. I mean, we saw so much of a surge of mental health issues. We saw, you know, the grief that came in; the cumulative grief due to the losses.” – Dr Chitra Venkateswaran

“We're seeing it in different ways, where we are kind of defining ourselves by who we are and who somebody else is not. You know, we're increasingly defining ourselves, we're this and you're this. And I think what palliative care teaches us isn't the end of the day do these things matter? They don't. What matters is me as a human being connecting to you as a human being, at times in our lives, which are, are some of the most meaningful, the most difficult, but also the most precious. So I think more than ever, we should say to societies and settings, what is it that unites us? … perhaps palliative care brings us right back to that. It's about our common suffering, or common humanity and the compassion that we, we as individuals, but we as societies, and we as a global community, and need to remember, discover, celebrate, [and] develop to respond to the need.” – Dr Mhoira Leng

“If we just take end of life care: it's such a precious time, it's the last time we spend with loved ones. It's such an important time to make sure that things like pain is controlled, that people are not distressed … there's everything we can do, to support families, to support the process. So that, that, that can be as meaningful and gracious as possible so that the loved ones can hold their hand and be there together, they can say the things that are important to them. That things like saying, ‘I'm sorry,’ reconnecting, building relationships, seeing priorities can happen. And perhaps we need to bring that into our conversations.” – Dr Mhoira Leng

“The clinical or the, the medical fraternity also perceives death as a failure. Isn't it like, when somebody dies, someone with a chronic illness (or even any illness dies), they perceive it as their own failure to cure them, because cure is the ultimate success. So to gently let go, you know, for the physicians or for the medical professionals, as well, to know when to stop …” – Dr Chitra Venkateswaran

“When we talk about clinicians, you know, changing their perspective about how to manage, I think the start should be also discussion about death openly in the society. And I have seen it, there's been a lot of efforts from colleagues and friends across India, they, they have these death cafes, where people talk about it talk about death and dying in a much more open way. Because we usually do not—that is a taboo word isn’t it—you do not talk about that. It's as if that it has not happened to me, it happens to somebody else.” – Dr Chitra Venkateswaran

“Palliative care allows us to move back again. Maybe countries like India, or many other countries in Africa, and Palestine can teach also about what it means to be a collectivist, absolutely collectivist community orientated. But still, we need to make sure we're discussing life and death and all its glory, and its joys, and also its pains and its challenges. So I think it's important to also remember that palliative care and being human is something that brings laughter and joy, as well as tears and sorrow—and it's that whole package that makes us human.” – Dr Mhoira Leng

Feedback from the interview:

“Dr. Chitra and Dr. Mhoira,
It was really an excellent conversation. Really everyone needs to listen to this, within a short time what is palliative is clear. Hats off to both of you.
Watched the whole interview.” 
– Stella Alice Verginia

“Great to hear such a comprehensive, global, yet relatable aspects of Palliative Care from Mhoira. Thank you for that.
Excellent conversation Dr. Chitra. You should do this more often.”
– Dr Biju Rhagavan

“Beautiful, explained the profound philosophy of palliative care.
Congrats Mhoira and Chitra.”
– Dr Geetha Vijay

“Mhoira, I just listened to your excellent talk with Chitra about compassion & dignity. I found myself taking notes again! 
I loved your expansion of ‘compassion’. Many in my circle had awareness but lacked empathy & action.
Thank you for your Gaza stories, a situation that distresses me greatly.”
– Dr Ann Thyle

Phillip Amol Kuol is all about giving back; as a South Sudanese refugee living in Northern Uganda, he opted to assist as a translator then volunteer in a village health team (VHT), where he received palliative care training through the Transform Project. Phillip is now a Cairdeas Scholar and pursuing a bachelor’s degree in social work as he continues to serve his community. Below is the summary and quotes from a phone interview with Phillip, as told to Hannah Ikong on 19th October 2022. 

There is so much to tell, it is hard to know where to begin! I think Phillip could write a book one day on his experiences and lessons learnt. We agreed though to start the conversation with the item that connects Phillip to Cairdeas, and that is palliative care.

Phillip’s first encounter with palliative care healthcare providers was in Adjumani camp, where he was working as a translator for South Sudanese refugees at a community health centre. Vicky Opia, from Peace Hospice Adjumani, visited the health centre to see a child who had previously even gone to Kampala due to their chronic illness, and she needed Phillip’s assistance in communicating to the family. Phillip’s interactions with Vicky Opia continued and she referred him to other staff of the Mulago Palliative Care Unit and Cairdeas IPCT. Soon after, Phillip was invited by the team of the Transform Project for the Volunteer Health Team (VHT) palliative care training in 2019. 

Phillip remembers fondly the times of training for palliative care as a VHT and the ongoing discussions between himself and the trainers. “I am so proud of the [palliative care] training, and that is why I am so thankful to them. So that training has really opened up my mind and it has helped me to change the lives of the adolescents, to change the life of the elderly, and I still hoping to change more in the lives of the refugees. That is, in the life of my countrymen.”

With one person in particular, Dr Mhoira Leng, he shared about his course in child protection at Nsamizi Training Institute at Adjumani, as well as his dream to become a social worker. “She told me that, we are going to look for a chance for you to go and study,” recounts Phillip, “What do you want to do, actually, that’s the question that she offered to me. I told her that I wanted to be a social worker, I am interested in doing social work to back my child protection paper up (because child protection was for two years). And she said it was okay.”

Through a Cairdeas scholarship, Phillip started attending Uganda Christian University (UCU) in September 2021. He initially was able to attend the Adjumani Teaching Centre branch of UCU but as it has since closed (due to reasons unknown to Phillip), his studies have come through the UCU Arua Campus in Northwest Uganda. He is already in his third semester of school, where his current classes are preparing him for not only social work, but social administration and community health.

“I am doing social work and social practice theories,” Phillip explained to me over our phone call, “and at the same time I am doing what they call worldview … where I am supposed to search out for the social problem and I am supposed to write some report about it.” In addition to course work, Phillip has been active in the UCU internships and has some upcoming fieldwork to complete. He plans to graduate with his diploma in social work and social administration in September 2023, then he will continue with a two year course to obtain a bachelor's degree in social work and social administration.

Phillip shared a few stories with me, which reflected his heart towards reaching the whole community, both young and old, male and female, regardless of their condition or chronic illness. As he explained to me later – “I do see everyone as a family member.” Early in his service at the Adjumani camp health centre, he vividly remembers counselling a distraught young woman who was considering an abortion. He was able to find out the reasons why she was so distressed and talk about all her options with her. Through their conversations, he recalled, she began to feel more confident and at peace and later she decided to keep her pregnancy. They still stay in touch to this day, and Phillip reports that she has a growing, handsome boy and greatly appreciates his continued listening ear, compassion, and guidance. 

He told me about being a VHT and providing palliative care services to an elderly “Mzee” (gentleman) living with his son. Phillip brought the Mzee medicine, and he counselled, encouraged, and prayed with both the Mzee and his son. Initially the son did not know how nor want to tend to his father and was distant, but with Phillip’s guidance he began an active carer for Mzee. Phillip then told me about his last visit with them both, and he recalls that Mzee was smiling, laughing and chatting with Phillip and his son. “It was around 6 in the evening when the son was taking him inside,” he narrated. “He told the son, ‘My son, I never know when I am going to die. So take this goat … you pick it when I die and you slaughter it, the people who are going to bury me are the ones going to eat that goat.’” Little did anyone know that within the same night, the Mzee would pass away. With the holistic approach of palliative care—counselling, medications, spiritual and social support—the Mzee had a good end of life experience and peaceful death. “When you take care of someone very well,” Phillip concluded, “the person will leave you with his blessings and die comfortably.”

The work that Phillip does as a VHT as well as the classwork and internships for social work can become demanding at times. I asked Phillip if he had any mentors or people who encouraged him.  “My elder brother is one of my mentors, and Dr Mhoira is one of the mentors who have really kept me ‘up’ and Madame Vicky Opia.”

He shared that there has been so many who have shared with him and sharpened him along the way, as well as those who have confirmed his call of social work. When he was studying child protection at Nsamizi, for example, he had a teacher called Peter who would talk with him individually and explain how he could make a difference. Phillip also cites the palliative care trainings as a VHT that have encouraged him in social work, with an emphasis on the heart of the social worker (or carer) to stand together with those in their suffering. 

As a refugee, Phillip is well acquainted with suffering: he grew up in a warzone, like many others have in his community. As he draws closer to finishing his studies a social worker, he both feels and see the great need of counselling, education, and the open sharing of ideas in such areas as his own. These needs further compel him to do social work and even to pursue higher education, when possible, to better serve those around him.

When I asked him whether he wanted to work more with South Sudanese refugees (like himself) or with Ugandan host communities, he replied yes, and even more; in time, he wants to be an international social worker. He looks forward to collaborating with other social workers and change agents, including the palliative care units and other healthcare teams, to reach more people. After he described his dreams and what he hopes to achieve in his community and other places, I remarked that, “Sounds like your dream is about making the world a better place,” and Phillip could not agree more. “Social work needs commitment, it needs a lot of time, and it needs that kind heart and good heart to sacrifice yourself,” Phillip told me. “And I am ready to sacrifice myself for that.”

As we finalised the interview, I inquired about his version of a perfect day. Would it be a workday or a weekend? What would you do or where would you go? Phillip responded that “his perfect day” would not come until more things would be made right around the globe. “My perfect day would be,” he shared, when “all the world will have most of the social workers who are trained, so that world and every community will have knowledge of palliative care, socialisation, and peace … this would be to solve most of the injustice, criminal activities, and crimes against humanity, war and the suffering of the refugees all over.”

Phillip then thanked me for the time spent interviewing as well as for Cairdeas’ scholarship towards his social work education. He concluded, “That’s what I am so interested also to offer to others; to change others’ lives like the way people are giving their time towards my life. I am really thankful.”