The Psychosocial and Spiritual Experiences of Patients with Advanced Incurable Illness in Bangladesh: A Cross-Sectional Observational Study

Recruitment and sampling

We recruited individuals through convenience sampling from the oncology departments of the government referral hospital located in the main city of each of the 7 administrative divisions in Bangladesh and in one smaller city in a divisional subdistrict in each district. We also recruited participants from local HIV/AIDS support organizations in each division. Potential participants were invited to participate by trained interviewers if they had a confirmed diagnosis of advanced, incurable cancer or HIV/AIDS and if the patient was aware of his or her diagnosis. All interviews were conducted between May and June 2014.

Design and content of the interviews

Interview schedules were developed by reviewing relevant literature including the protocol for rapid situational analysis of palliative care in Vietnam.[13] The interview schedule was then culturally adapted and translated into the Bengali language. A pilot interview schedule was developed which was reviewed by local palliative care practitioners and subsequently tested with ten patients. The modifications from this feedback were to improve the clarity of the questions and response items to reflect cultural and linguistic specificities. This study describes a psychosocial and spiritual interview which was part of the larger national situational analysis of palliative care. Other portions of the national situational analysis have been described elsewhere.[14] All participants provided written informed consent before participating in the study.

The demographic information collected included age, gender, marital status, religion, and occupation. Findings related to medical treatments and physical symptoms have been previously reported.[14] Participants were asked about their emotions and their severity, their support systems and coping mechanisms, their greatest needs, their experience after learning of their diagnosis, and the supports they received from family and friends.

Interview process

Interview was conducted by trained interviewers and was typically 20–45 min in duration. For patients who were <18 years of age, informed consent was obtained from a parent, and the patient provided verbal assent. Individuals informed that they were permitted to skip any questions that they did not want to answer.

Ethical approval

The study was approved by the Directorate General of Health Services (DGHS) of Bangladesh and all the institutions and programs involved in the study. Ethical approval was granted by the Institutional Review Board of Bangabandhu Sheikh Mujib Medical University and the Research Review Board of the DGHS, Ministry of Health and Family Welfare.

Statistical analysis

Data are expressed as either mean, range, standard deviation (SD), or percentage of the total number of patients who provided a response for each item. Data analysis was performed using Microsoft Excel (Microsoft).

Participant characteristics

There were 181 individuals with advanced incurable cancer (81.9%) and 40 with HIV/AIDS (18.1%). The average age of study participants was 45.5 years (SD = 16.4, range: 7–95 years). Self-reported health status was described as poor or very poor by 48.4% (n = 107) of individuals. The majority (97.7%, n = 216) of individuals were receiving treatment for their disease at the time of the study. Further sociodemographic characteristics of the participants are shown in Table 1.

Emotional experiences of receiving diagnosis and living with illness

When participants were asked to rate their peak unhappiness following diagnosis on a scale of 0 (no unhappiness) to 10 (maximum unhappiness), the majority (61.2%, n = 112) rated their unhappiness as maximum (10/10). Almost half of all participants reported feeling unhappy all of the time (43.9%, n = 97). When asked to categorize their overall satisfaction with life, just over half of participants (51.4%, n = 112) reported feeling somewhat satisfied and 19.3% (n = 42) were not satisfied with life. The vast majority of participants (80.5%, n = 178) denied ever facing discrimination because of their illness. There were forty-three individuals who reported discrimination (19.5%), most commonly by family members (67.4%, n = 29) and neighbors (41.9%, n = 18). Further details of participants’ emotional experiences of illness are displayed in Table 2.

Support systems and coping activities

Spouses were the most common main caregivers (49.8%, n = 110), followed by children (14.9%, n = 33) and parents (12.7%, n = 28). When asked about sources of psychological or spiritual support, 151 participants (70.6%) were able to identify someone as a source of psychological or spiritual support. Common supports were other family members (n = 40.4%, n = 61), spouses (24.5%, n = 37), or siblings (21.2%, n = 32). Talking to family (40.2%, n = 78) was the most common activity which participants reported using to cope with unhappiness. Further details of the support systems described by participants are shown in Table 3.

Greatest needs and fears

When asked to describe their greatest needs, money and medical care were the most common responses, which were reported with equal frequency (46.0%, n = 99). A need for pain relief (21.4%, n = 46) or food (11.2%, n = 24) were also common responses. Participants’ greatest fears were commonly about the future of their children (38.3%, n = 82), followed by being in pain (29.0%, n = 62) and dying (28.0%, n = 60). Participants most commonly desired information about how to care for themselves (42.2%, n = 89) and their disease and its treatment (26.5%, n = 56). Further details about participants’ needs are shown in Table 4.

Emotional needs and support

We found that the majority of patients reported that they depended on family or friends for psychological or spiritual support. In Bangladesh and many other LMICs, access to psychosocial health professionals is often very limited, with a recent World Health Organization study estimating that at least 239,000 mental health workers are needed to address the current shortage of health professionals in the 58 LMICs which were sampled.[15] We found only a small number of patients were receiving support from a healthcare professional with only one patient specifically mentioning a counselor, which suggests that there is limited availability of psychosocial professionals to address the emotional and spiritual suffering of patients in Bangladesh. In the absence of professional mental health services, patients may seek the support of family and friends. Although many patients do derive support from family and friends, we also found that a significant number of individuals (29%) did not have anyone to provide them with these supports, further demonstrating the extent of this need.

We found that patients had very significant feelings of sadness, with 122 patients (58.4%) reporting that they felt sad almost every day or all of the time. These findings are similar to those from India where patients reported emotions such as fear and feeling useless or a burden, which caused unhappiness.[12] Our findings suggest a need for improved psychosocial and spiritual care for patients with serious illnesses and support the findings of a recent global mapping exercise of the significant gap in the availability of palliative care in Bangladesh.[16] Further studies are needed to better understand the psychosocial support services which will support patients and how to deliver these supports in a resource-limited setting.

Practical caregiving support

We found that family members were the main caregivers for patients, with only one patient reporting a healthcare worker as their main caregiver. In many non-Western societies, family members are expected to provide care during times of illness, and there may be few options for nonfamily caregiving.[17] In Bangladesh, a shortage of nurses may limit patients’ access to formal caregiving from the healthcare system.[18] In addition, the financial burden of paying for caregiving services, most of which are not publicly funded, means that most patients would struggle to afford these services in a resource-limited setting. Our findings are similar to those of a study from Kerala, India, which reported that most terminally ill patients were cared for by their family.[12] This study from Kerala also found that the caregiving support provided by family members was a source of concern for patients since it make them feel or fear being a burden to their family.[12] Our study did not directly examine this aspect of family caregiving, and further studies are needed to better understand the caregiving experiences, patients in non-Western societies, and the impacts of family caregiving on both the patient and their family members.

Greatest fears

We found that the most common fears identified by patients were related to the future of their children, dying, or being in pain. Concerns about the future welfare of family members have also been identified in previous studies exploring the fears of patients needing palliative care in other South Asian settings.[1219] Previous studies from a wide range of cultures and resource levels have reported that fears about dying and having poorly controlled symptoms are common among palliative care patients.[121920] A previous report about the physical symptom needs of patients in Bangladesh found that severe pain was frequent, with similar findings reported in other studies of palliative care patients in South Asia.[1421] Although we did not examine healthcare providers’ knowledge and skills in pain management, it may be that limited training in pain management among physicians and other healthcare professionals contributes to fears about pain among patients. Several previous studies of physicians’ pain management knowledge and skill in Bangladesh found that most physicians were unaware of the role of opioids in cancer pain management, and the majority did not feel comfortable prescribing oral morphine for this indication.[2223] Palliative care and pain management has yet to be incorporated into undergraduate-level training programs for healthcare professionals in Bangladesh.[14] Patients may also be aware that that will be unable to access pain medications in the advanced stages of their illness.[24] Our findings provide further evidence of the need for palliative care services and access to oral morphine across Bangladesh. Currently, there is no access strong opioids for those needing palliative care outside of the capital city of Dhaka.[1416]

Greatest needs

The most common need reported by patients in this study was money. In Bangladesh and many other LMICs, the cost of serious or chronic disease is frequently borne by the patient and their family, with limited support from government sources. This expenditure can quickly lead a patient and family to exhaust their limited savings, and this may force the patient to discontinue treatment. In a study from India, patients often reported losing their job due to their illness which contributed to financial problems.[12] Although we did not specifically examine this specifically, it is possible that loss of employment by the patient or main wage-earner in the family contributed to the need for money among our patients. The need for money may also be linked to the very limited social security net which is available in Bangladesh, leading patients to be concerned about financially supporting their basic needs such as shelter, food, water and electricity. A recent study describing the provision of palliative care in an urban slum in Bangladesh incorporated food packets as part of the support provided to patients and their families.[25] Further studies are needed to explore the characteristics of the financial situation of patients with advanced illness in LMICs and demonstrate the best models of care for this particular need.

Strengths

Our study provides a comprehensive assessment of the needs and experiences of individuals with advanced incurable illness from a wide geographical distribution across the whole country of Bangladesh. We describe a relatively simple methodology, which can easily be implemented to assess psychosocial and spiritual needs through interviews with patients.

Limitations

The use of closed-ended interview questions and convenience sampling methodology may limit our findings’ generalizability. Further exploration of patients’ needs using qualitative methodologies may lead to greater understanding of patients’ experiences.

Financial support and sponsorship

This study was funded by the National Institute of Population Research and Training of Bangladesh.

Conflicts of interest

There are no conflicts of interest.