Ann Marie* has been feeling anxious since the day she was first told about her late-stage cancer. Uncertainty about her health is a constant in her life and symptoms as trivial as a running nose can unnerve her. Lately, her visits to the doctor haven’t been helpful either as information about her disease only makes her feel more isolated, as though no one else can relate to the daily struggle of living with cancer.
Ann Marie’s experience is unfortunately very common as many women suffering
from late-stage cancer receive no services, referral or guidance to help them with their emotional distress. Studies show that up to half of women with advanced breast cancer stage 3 or stage 4 cancer suffer from anxiety or clinical depression.
There is also a stigma attached to having breast cancer that leads to women like Ann Marie choosing to be reserved even though they are eagerly searching for relevant health advice and support services. Such delays in accessing information prolongs the anxiety of patients and can also lead to a lack of awareness about symptoms that require further care.
“The presence of social support resources and information that’s relevant to emotional needs has a strong influence on a patient’s quality of life and the speed of their recovery. Making these resources available can go a long way towards tackling the emotional toll of living with cancer,” said Dr Asim Jamal Shaikh, assistant professor in the department of internal medicine at Aga Khan University and head of medical oncology division at Aga Khan University Hospital, Nairobi.
Dr Shaikh, an alumnus from the AKU’s fellowship programme in medical oncology, has recently won a global grant that will enable him to create a customised website and mobile application that will improve access to information for advanced breast cancer patients in Kenya.
The initial stages of the project will see Dr Shaikh collaborate with the oncology sections of four public and private hospitals in urban and rural parts of Kenya to assess the specific needs of cancer patients through a needs assessment and quality of life survey. Doctors and caregivers at the hospitals will also be interviewed to ensure that the specific cultural and geographic challenges faced by patients are reflected in the website.
Over time, staff will be hired to create and maintain the website which will include features such as virtual support groups, forums to ask doctors questions, news about clinical trials, educational videos, and advice columns on exercise, diet and lifestyle. Patients will be able to download important educational material and the website will also act as a forum which collates links to relevant local and regional resources for cancer patients.
“We aim to address stigmas, taboos and myths that impede the treatment process through the website. By designing a website that is centered on user needs we will provide relevant information that empowers patients and enables them to cope with their particular challenges,” Dr Shaikh adds.
The project has received grant funding through a SPARC grant: a global competition run by the
Union of International Cancer Control, an advocacy group which represents the world’s major cancer societies, ministries of health and patient communities.
The initiative’s goals are in line with the vision of the
National Cancer Control Strategy 2017–2022 prepared by Kenya’s ministry of health. The plan’s strategic objectives call for special efforts to raise awareness of cancer among the public, to conduct research on how to improve the effectiveness of cancer treatment, and to understand the impact of communication tools and platforms on cancer prevention, early diagnosis and screening.
The grant also corresponds with targets related to
goal 3 in the global Sustainable Development Goals: ensure healthy lives and promote well-being for all at all ages. Targets under the goal support efforts to improve mental health and to tackle the burden of non-communicable diseases such as cancer.
*The patient’s name has been changed to protect her identity.