A Qualitative Study on Palliative Needs of Stroke Patients in an Indian Tertiary Care Setting - Doctors' Perspective

Abstract

Introduction: Stroke is the development of a focal neurological disturbance lasting >24 h, of vascular origin. In India, stroke is one of the leading causes of morbidity and mortality. Most stroke patients, during their duration of treatment and posthospitalization, want relief of suffering, a sense of control and minimized burden on the family.

Aim: The aim of this study is to describe treating doctors' perspectives on the palliative needs of stroke patients in India.

Methodology: This qualitative study was conducted at a tertiary care hospital in South India. A total of 17 doctors involved in the care of stroke patients were interviewed, using an interview guide. The interviews were audio recorded simultaneously. The audio recording was transcribed verbatim, and the data were coded using a grounded theory approach. An inductive approach using thematic analysis was used to manually analyze the data.

Results: Eight themes emerged. (1) Functional disability: loss of independence due to immobility, speech deficits, visual disturbances, feeding difficulties, and incontinence cause immense distress. (2) Physical burden: pain in the form of central poststroke pain, periarthritic shoulder, psychogenic pain, and various sequela of chronic bed bound state like bed sores and pneumonia add to the burden. (3) Psychological needs: depression is common in stroke patients along with other psychological issues such as anxiety, agitation, apathetic state, and behavioral disturbances (4) Social issues: Cost of treatment of stroke patients coupled with their loss of employment leads to huge economic burden. They also face abandonment by children or spouse, in all sections of socioeconomic strata. (5) Caregiver burden: caregiver has a major role in a setting of stroke and in the long-term affects all domains of their lives, compromising their psychological and physical health. (6) Counseling-an unmet need: counseling is particularly important in a setting of stroke for the patient as well as the caregivers and results in a better patient outcome. However, clinicians expressed that it was inadequate due to the huge patient load, time constraints, and lack of effective counseling skills. (7) Spiritual needs: few clinicians stated that existential distress and spiritual struggle are seen in debilitated stroke victims and are often unaddressed. (8) Issues at the end of life care: patients with massive stroke, multiple comorbidities, and poor rehabilitative potential requires end of life care.

Conclusions: From the interviews of the clinicians, we can conclude that care of a stroke patient is more than medical management and rehabilitation, as several other aspects of the patient's life are affected by the condition. The quality of life aspect has to be looked upon as an area that requires active intervention in a setting of stroke. Physical disabilities were viewed as the most significant factor in reducing the quality of life. Spiritual needs have a low priority in comparison to other physical needs. Due to high patient load and time constraints, many of the needs are unaddressed. Two important areas where palliative medicine has a major role in a setting of stroke are counseling and alleviating caregiver burden. However, referral of stroke patients to palliative medicine is low and further research to identify barriers to specialist palliative care of stroke patients will help in promoting the referrals to palliative medicine.

Keywords: Care; needs; palliative; stroke.