More often than not, care is given to Persons Living with Palliative Care Needs and we forget about their Care givers and close family members & the community are left with the huge burden of being Caregivers. This leaves them financially, emotionally and mentally strained.
Joseline Nekesa, a cancer awareness advocate in Uasin Gishu County has been the primary care giver to her sick cousin who was diagnosed with stage 4 cervical cancer and accounts of the hardship tales she has gone through as a caregiver for almost a year while the cousin has been undergoing chemotherapy at Moi Teaching and Referral Hospital (MTRH) in Eldoret.
“She would cry because of the pain. I used to feel sorry for her and even wished I take away that pain,” Nekesa says. “Also the situation at the facility where she was being treated was overwhelming as most patients came with a similar condition, making one feel helpless” Nekesa recounts. Lack of resources to undergo through chemotherapy has been big challenge too for the family. Having taken a mental toll on her, Nekesa ran home leaving the patient alone for days.
This is the same story with many care givers out there, Jared Biwott, started his Journey of being a care giver to his father in 2021. After a long journey of misdiagnosis it was discovered that he had stage 4 lung cancer and the journey began. “Giving care is not an easy job. You are affected while taking care of the patient and the feeling is worse if you, unfortunately, lose the patient. Psychological support is very important,” he narrates. Despite losing his father, Biwott has devoted himself to reaching out to other cancer patients within Uasin Gishu County and supporting them through providing care while sensitizing the public on cancer and palliative Care
Through the Collective Hope and Quality Life for Lung Cancer Patients project, Kenya Hospices and Palliate Care Association (KEHPCA) and Non-Communicable Diseases Alliance of Kenya (NCDAK) have been working on improving the quality of lives for lung cancer patients (and their families) by: (i) Creating awareness on Lung Cancer, (ii) Building the capacity for health care workers at primary care health level to diagnose, refer & provide palliative and supportive care (iii) Strengthening referral systems, (iv) Building capacity for caregivers to be able to support their loved ones (v) Collecting data for advocacy to scale up quality services and (vi) Forming Lung Cancer Support Groups.
This resulted in training of 102 healthcare providers from various health facilities within Uasin Gishu County on lung cancer care, treatment, palliative care & survivorship. Over the project period, more than 30,000 community members within and without Uasin Gishu County have been reached with lung cancer awareness messages. This was achieved by utilization of various modes of communication including mainstream media, social media, awareness talks, among others. The training of the members like Jackline Nekesa and Biwott of the Uasin Gishu NCD support has enabled them to become advocates in the field and at community levels. “After training, I realized I was affected and the patient was the one infected. I felt sorry for myself because I had not handled her the way I should. I went back, asked for forgiveness and continued giving care based on the training received,” she said. Nekesa also narrated on how she landed on the training details through a WhatsApp group.
The greater burden left is to ensure that such interventions are scaled up in other Counties and a call to us all to be champions of Palliative care by supporting & caring for Persons Living with Palliative Care Needs and their care givers within our places of influences.
This article was originally published by the standard newspaper; https://www.standardmedia.co.ke/national/article/2001456493/taking-care-of-cancer-patients-is-a-painful-task
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