Caregiving burden among family members/informal caregivers of cancer patients in Nur-Sultan city, Kazakhstan: A Qualitative Research Study

Abstract

Introduction: When a person develops cancer, it is family members who provide the context for this experience, but they themselves are often profoundly affected by the disease. In Kazakhstan, a post-Soviet state, accessing quality services and effective interventions for caregivers of cancer patients is challenging due to the shortage of support services, and lack of research in this area. So, to better facilitate adequate and effective interventions, it is crucial to unravel caregivers’ burden experiences of caring for cancer patients. Aims: 1) To determine what burdens caregivers of cancer patients carry due to their caregiving responsibilities in Nur-Sultan; 2) To define what kind of social support caregivers perceive in Nur-Sultan; 3) To understand caregivers’ needs of informal caregivers in Nur-Sultan; 4) To examine the caregiver perceptions regarding the healthcare and patient management for cancer patients in Kazakhstan. Methods: A qualitative research study was conducted with two male and seven female informal caregivers of cancer patients in Nur-Sultan city. The sample size was determined through achieving saturation. Each participant was involved in 30-45 minutes semi-structured in-depth interview. Each interview was audio-taped, transcribed, translated from Russian and Kazakh languages to English, and analyzed using the framework approach, which is based on thematic analysis. The research was approved by Institutional Research Ethics Committee of the Nazarbayev University School. Informed consent was taken from each participant before the interview. Results: Caregiving burden is used to describe multiple dimensions of distress that result from an imbalance between care demands and the availability of resources to meet those demands. Caregiving leads to many physical and psychological problems. People in Kazakhstan addressed their emotions with stoicism and positivity, they feel reluctant to show their feelings of exhaustion, sadness, anxiety and depression. In the effort to provide the best care, caregivers usually neglect their own health and needs. There is a total absence of support for caregivers from the state in Kazakhstan. People receive social and mental support from their family members and friends. Discussion: Most results were similar to previous findings in other countries. Caregivers’ quality of life is compromised due to the physical and emotional burden due to the shortage of time, change in roles and high level of caregiving responsibilities. Caregiving lead to positive experiences as well, such as increased feeling of love, compassion, religious and spiritual development. In our country, there are no family caregivers support programs available, and Healthcare management is not well-developed and has many problems. Those all challenges may be due to that Kazakhstan is still developing in medicine. Conclusion: This study introduced the first qualitative research on caregiving burden among informal caregivers of cancer patients in Kazakhstan. The findings revealed caregiving issues experienced by family caregivers of cancer patients in Nur-Sultan, their changing social and spiritual lives. It also underlined caregivers’ social and financial support needs from the state.