Patients with life threatening illnesses are often left to wonder why God decided to limit their voices. The doctor says this illness cannot be treated and send them home. Interventions like Chemotherapy, Radiotherapy and Dialysis are expensive and the poor in Kenya cannot afford. Relatives shy away and live them in agony. Their voices are suppressed and there is no one to talk to. Palliative Care providers attend to them, support them and listen to their stories but rarely do they voice them out. These stories are touching and voicing them through stories would direct help their way.
Topical focus:
Country:
What locality or neighborhood will your project focus on?
Nairobi, Thika and Nyeri
Describe the specific population with whom you will be working.
There is ample evidence that a caring approach that embraces psychological, psychosocial and spiritual support is highly effective and is valued by patients and families and this is what palliative care (PC) nurses offer.
Today, nurses are stepping out of their comfort zones and are now leading the way for their patients.
Nurses have an opportunity to hear dying patients and voice their pain if empowered. They are fully trained and specialized in Palliative Care with IT skills and internet usage for reporting that can be used to voice the challenges facing such patients. The project targets PC nurses to record patients concerns and bring out a story that calls for “quality of life” and the importance of care and genuine concern for patients and close relatives to the end.
Who else will be on your team to help implement the project?
Dr Zipporah Ali, a palliative care specialist and CEO of Kenya Hospices and Palliative Care
https://twitter.com/zippyali
Patrick Bowen; IT Officer professional
https://twitter.com/bowenpat
Aquinas Nyakundi; Communication Specialist
https://twitter.com/AquinasNyakundi
David Musyoki; a palliative care nurse and Programs Officer
https://twitter.com/davidmusyoki
Miriam Igobwa; a finance and administrator expert to assist in financial reporting
https://www.facebook.com/miriam.igobwa
Steven Shiyuka; Support Staff
https://www.facebook.com/stephen.shiyuka
What kinds of news, stories and other content will be created?
Kenya Hospices and Palliative Care Association (KEHPCA) seeks to have these voices heard beyond the nurse's and doctor's room to the world and generate interest for support for these patients. This project aims at collecting stories from patients suffering from life threatening illnesses like cancer, HIV/AIDS and advanced Diabetes among others. Nurses will be empowered to record patient stories using digital gadgets (phones/recorders) and submit them via internet for transcription and translation for final editing and publishing on ehospice, a palliative care news website already in place and read globally. These stories will also be shared on the association's website and social media platform to generate positive impact through story telling.
What technologies and digital tools do you plan to use in the trainings?
Describe the connections that you or your organization have already established or plan to establish that will contribute to the success of the project.
KEHPCA manages the Kenyan edition of ehospice www.ehospice.com/kenya a global palliative care news website, a platform that we have used to share palliative care news but wish to enrich it to bring out the voices of those ailing from life threatening illnesses to influence policy at government level and the international community. We wish to use the audio for advocacy purposes as well. All hospices in the country are KEHPCA members and most hospices have established internet and at least a computer. These will come in handy in downloading the audio and sending it for transcription.
How many participants do you think will be trained in your project?
Three participants will be trained through a visit to the hospices (Nyeri, Thika and Nairobi) to offer extensive training on interviewing skills and how to help bring the stories to life. Given that most of them have a medical/nursing background, getting information from a patient is relatively easy, tailoring it towards a comprehensive story that can create impact all the time they are offering services to patient now and in the future. We intend to continually recognize them through certification from the association to motivate them.
Describe which technologies, tools, and media you will focus on when training participants.
Technologies: Recording and saving of audio on a mobile phone, downloading the same using either Bluetooth or USB cable to a computer and sending the audio via internet to the project organizer
The organizing team brings on board communication skills that include interviewing for detail, transcription, translation, editing and publishing as well as finance management and program implementation
Tools: Phones and recorders for recording the actual interview
Media: Internet to transmit the stories to the project organizers for transcription, translation and final publishing on the internet
Describe the facilities where you will hold the workshops.
KEHPCA will visit the team at their hospices and offer the training using available facilities within the hospices. This will provide an exact working environment for easier grasp of the concepts. Demonstration will be key in this project.
What is your current relationship with the community with whom you plan to work? What makes you the most appropriate individual or organization to implement this project?
KEHPCA has offered technical support and mentored teams in hospices and the teams have been very dedicated towards offering palliative care. It is with this dedication that KEHPCA wishes to empower them to raise the voice and plight of patients through stories to be published in an already established platform with global readership. With indication of funding in the near future from the government, this project hopes that such an initiative will attract funding through government budget in future to include even more technology.
What specific challenges do you expect to face when planning and implementing your project?
Work Burden given that there is increased demand for palliative care service as well as staff shortage but staff have always been able to go out of their means to deliver reports on time. Being part of their day to day work, KEHPCA believes that adding to them a task that will promote the work they are doing by voicing the plight of their clients will not be much of a challenge to the project and with future prospects of additional staff; the project hopes to achieve 90% success.
How will you measure and evaluate the project’s impact, specifically: your primary participants, the wider regional community, or the global digital community?
The number of stories submitted and actually published on ehospice will indicate the level of success from the part of the implementing team. Increased support for palliative care in Kenya from the government, supporters and donors with policies, funding, empowerment and additional workforce in response to these stories will be a measure of the impact of the project as such support will go a long way in alleviating suffering from patients with life limiting illnesses through increased supply of pain relieving drugs, equipping palliative care units and empowering them to carry out home care through visits to patients and ensuring better diet for these patients to make their life as comfortable as possible.
If your project were to be selected as a Rising Voices grantee, what would be the general timeline of project activities in 2014?
Time line would be within three months from receiving of funds from Rising Voices
1st Month: Organizing training for training 3 Hospices
2nd Month: Actual Training of the three teams at selected hospices
3rd Month: Received stories for transcription and publishing on ehospice. Follow up to for any challenges faced by the trained team
Detail a specific budget of up to $2,500 USD for operating costs.
Travel $1412
Recorders $529
Admin costs $250
ICT Support $296
Besides the microgrant funding, what other support can Rising Voices provide for your project to ensure its success?
Connecting KEHPCA to other organizations globally with interest in funding palliative care in other innovative projects
Contact name
Aquinas Nyakundi
Organization
Kenya Hospices and Palliative Care Association
