Introduction and background
Island Hospice and Healthcare (Island) uses several models to deliver palliative care services namely (i) home-based care; (ii) hospital-based care iii) Rural and community outreach iv) Roadside services (v) therapeutic and comprehensive bereavement care, including for children; and (vi) capacity-building for doctors, nurses, community caregivers and others. The bereavement service offered by Island is aimed at those who are grieving after any death whether the family has lost a patient who died in our care, or a sudden unexpected death such as a car accident, suicide, or heart attack.
Intervention and outcomes
Between December 2022 and February 2023, Island continued its mission by providing care to individuals faced with life-threatening illnesses and the bereaved. To the bereaved and traumatised clients Island provided psychosocial support sessions, bereavement support, debrief sessions and organised partner loss support groups. Island conducted training and workshops to improve knowledge, skills and attitudes in palliative and bereavement care across its branches and other organizations. The training included nurse aide training and caregiver module training. Participants who attended module training highlighted that the modules were an eye opener that brought to light awareness and valuable information, especially on how they viewed death, how to deal with death and how to counsel clients. They added that they were empowered with skills necessary for the effective provision of care to patients and clients.
Between December 2022 and February 2023 Island provided care to 412 patients and clients through 2,411 contacts. Virtual contacts (2,411) continued to dominate Island’s means of delivering services followed by home visits (419) and office contacts (264).
The two stories below demonstrate typical changes to people’s lives because of Island interventions.
Story of Change 1:
Marcia is a 56-year-old lady who resides in Marondera suburb of Rujeko. She stays with her brother and his family. As the day breaks and the bustle and hustle of town life roars into action, Marcia remains bundled in her single bed with shredded linen only enough to cover her body lying with no hope of rising from bed. For Marcia, the bed that she sleeps on has become her all-weather friend as all other habitants leave for their different activities of the day while she remains stuck in that bed. Her sister, who stays about a kilometer from where she stays is about to come and offer her some assistance.
Marcia was referred to Island by community stakeholders/ partners in early November 2022 for pain and symptom control. Marcia is HIV positive and has hypertension. On the initial contact, the palliative care nurse and Clinical social worker learnt that the patient was very emotional as she was grieving the loss of her daughter who had died the previous month from breast cancer. Whilst the bereavement was already a tall order for her, the distress caused by her condition was also profound as the patient was bedridden, unable to move her legs and dependent on her sister for all activities of living. The sister would bath, clothe, feed, and offer a bed pan for Marcia to relieve herself. It was absolute nursing care for Marcia, and this coupled with a lot more other challenges made her remain in perpetual tears.
The team worked closely with Marcia to address her physical and psychosocial issues. While Marcia received some counselling, pain, and symptom management, she was quite distressed by being bedridden and unable to move her feet. The team managed to leverage on the relationship that existed between Island and Marondera Provincial Hospital (MPH). The MPH Rehabilitation department worked in conjunction with Island in conducting home visits and rendered her rehabilitation. The rehabilitation intervention packaged with psychosocial support, pain and symptom management and physiotherapy proved to be effective as evidenced by improvements that were verbalized by Marcia and her sister.
Progress has been noted in terms of the Marcia’s mobility as she is now able to perform a few routine activities like getting on and off the bed on her own. Marcia alluded that “I am in a much better state than what I was in the past months” as she attributed the positive changes to the physiotherapy that was rendered to her in conjunction with the MPH team.
Island works with patients but also places emphasis on working with families of patients living with a life-threatening illness. Marcia’s sister who is also a Community Health Worker (CHW) with Island testified her growing hope over the witnessed recovery of her sister as she mentioned, “The change that we are seeing is amazing and it is very encouraging for my sister because she has all along been distressed by being immobile.”
Family tensions which included her husband’s resentment, her daughter and granddaughter leaving her left her emotionally fragile. Through psychosocial support from Island, Marcia was able to cope with her family tensions
According to Marcia, Island has been her pillar of strength giving her hope and offering some practical support when she needed it most. “The medications that you have supplied me and the connections you did on my behalf have made me feel better and I’m very positive I’ll walk one day.” Jokingly, Marcia said, “one day you shall find me waiting for you at the gate” (with giggles).
Such has been the story of Marcia, and the positive changes are evident for one to acknowledge as she has demonstrated emotional, social, and physical improvements. Island Hospice and Healthcare (Island) uses the Integrated African Palliative Care Outcome Scale (IAPOS) tool which is used to assess progress made regarding patient and family well-being. The tool has been used to track the progress of Marcia’s condition, and it has shown that she has improved physically as she now reports reduced pain which used to be 9/10 on the numerical pain rating scale but now, she reports 2-3/10. Emotionally, she used to be very worried about her sickness but has now come to terms with the illness. This has enabled her to be positive and look forward to walking one day.
Although there is still a considerable amount of work that needs to be done, Marcia looks to better days ahead and Island will assist her to walk through the journey until such time when she feels able to cope with any eventualities of her life experiences.
Story of Change 2
*Pseudo name has been used
My name is Mercy, I am 12 years old, and I am a form 1 pupil at a private school in Mutare. I live with my parents and am blessed with 2 brothers and a very caring older sister.
When I was about 8 years old, I discovered that something was wrong with me although I could not figure out what it was. Compared to other children around me at school I felt uneasy, I could not make friends and kept to myself all the time. This went on as the years progressed and I developed uncontrollable fear. Although I am a highly intelligent girl, I became so withdrawn from everyone else around me and only felt comfortable around my immediate family members only. When I was in grade 6, I developed some involuntary neck muscle twitching whereby whenever I was overwhelmed with schoolwork I would either shake my head involuntarily or pass out for some minutes. At first, my family, teachers and schoolmates thought I was faking everything to evade school assignments, and this resulted in other children calling me names and bullying me. Everything changed when I passed out after my name was called out at assembly that I was nominated as a prefect, my teachers then realized something was indeed wrong with me.
My parents then took me to a doctor and later to a psychologist who confirmed I have an anxiety disorder. This is a mental health condition whereby an affected person usually has excessive fear, recurring intrusive thoughts, or concerns. They may avoid certain situations out of worry and at times develop physical symptoms such as sweating, trembling, dizziness, muscle twitching or a rapid heartbeat. This revelation about my condition helped ease things a bit at home as my family now understood what was happening to me. Although I was given the assurance that I would get better with time, the opposite was true as I progressed to High School where I went to a boarding school away from familiar people and environment. As my twitching and passing out episodes increased, I was deemed as possessed by demons by my schoolmates and very few people wanted to be associated with me. This resulted in my parents transferring me to a day school closer to home. Sadly, all these efforts brought extraordinarily little relief.
One day in early February 2023 one of my teachers approached me and asked if I were willing to talk to a social worker from Island Hospice so that I could get help to boost my self-esteem as she noticed that my school grades were dropping rapidly. I agreed and a social worker was called to the school where we had a lengthy discussion about my life and condition. This had blessings from my mom who was contacted by my teacher. After getting assurance that our discussions were confidential, I opened up and shared all my fears and the struggle and pain that I have had to go through alone, most of this emanating from the tense surroundings at home as my parents quarreled most of the time and had little time for my siblings and me. This was the first time that someone had asked for my opinion in matters regarding my education and preferences as I was just used to getting instructions from parents who seemed to have everything planned for me and never had time to sit down with me and hold meaningful discussions because of their busy work schedule. It felt so good to have someone listening to me without judging me and I realized it is something I had always yearned for but did not get. The Social Worker helped me to have a positive mind and be mindful of the good in other people instead of the negative thoughts which had become part of my life. I was encouraged to communicate with my teachers and parents whenever I felt low and was given tasks to do at home on self-retrospect which the social worker would constantly check on for improvement.
When I got home, I excitedly told my mom everything we had discussed and asked her to take me to Island Hospice for my next session. This was granted as both my parents gladly escorted me for a session after 3 weeks. We received a very warm welcome and I was incredibly happy to meet the rest of the team and interacted with all of them. My mom also had a private session with the clinical team to pave the way on the way forward. Whatever they discussed worked wonders because from that day our communication improved tremendously, and we now have time to discuss matters relating to my well-being.
I am very thankful to the Island Hospice team as my life is improving and I now have a positive mind. I am now mindful of my anxiety triggers and communicate whenever I sense trouble. Although I understand my discomforts will not all disappear soon, I strongly believe I am on the road to recovery. I have always had a passion for a profession in beauty therapy but now I am contemplating a social care-related profession so that I help people conquer their fears. Only time will tell.