Caring for caregivers

Along with people with TB, TB affects the life of caregivers also. The positive impact of supportive families in completion of treatment and recovery is manifested as psychological support as well as physical care. Reminders for medication adherence, accompanying for health visits, allowing rest, ensuring nutrition, support to complete other roles as student/professional, when possible, encouragement and moral support from family caregivers positively influences successful treatment. Due to the psycho-social impact of the disease, people with TB rely heavily on family caregivers, especially in the initial part of the treatment. Depending on the response to treatment the caregiving burden may reduce over time in many cases. But in people with DR TB, the caregiving burden remains high. Across the world, the large majority of family caregivers are women who already have the lioness’s share of domestic workload. In recent years, there have been studies which address the challenges of caregivers⁵² of patients with tuberculosis and the ways in which they can be supported, promoting adherence and well-being. The WHO has also recommended ensuring support for caregivers as part of patient-centered care.
In addition to the family caregivers, healthcare workers engaged in the care of people with TB including doctors, nurses and community health workers also experience high level of burnout which needs to be addressed.

1. Challenges faced by caregivers
Many of the psycho-social issues that affect the overall distress that a person with TB experiences apply to the family caregiver as well. Family caregivers also face social stigma and isolation. A study done in India evaluating the psychosocial barriers and challenges faced by caregivers of patients with TB identified many challenges faced by the caregivers.⁵³

● Emotional and social issues

The study identified fear and emotional distress in both people with TB and caregivers. In addition to the fear evoked by the diagnosis, fear of contagion, long treatment duration and side effects, the patients along with caregivers’ experience spiritual distress with the ‘Why Me?’ question. The loss of physical form is distressing to patients and caregivers, weight loss, worry about future disability and dependence for basic activities of daily living in some cases. Caregivers express feelings of inadequacy and inability to meet the caregiving needs of patient and other family members. The study identified definitive moments of breakdown in the patient’s journey leading to depression, hopelessness, sense of defeat with inadequate response in DR TB and suicidal ideation in the patient. Knowing that these moments can occur can help prepare the caregiver to anticipate and seek help. Caregivers experience fear, anger, guilt, resentment and anxiety in the course of supporting patients through their treatment and need support from the healthcare team to validate their concerns.

● Medication related challenges

The caregivers find it difficult to cope with ensuring adherence. The level of education of the family caregiver and their understanding of the disease and perception of need for appropriate treatment can impact a patient’s adherence to treatment as well as completion of TB prophylactic treatment for vulnerable household contacts, especially children.  A study of caregivers⁵⁵ awareness of TB treatment showed that the majority of caregivers had poor to average understanding of TB and were influenced by friends/relatives as sources of information leading to inadequate understanding of modes of spread and in some cases, continued belief in supernatural causes. Thus, ongoing caregiver education and support is essential to treat the patient appropriately.
The symptoms patients experience as adverse effects of medication-nausea, giddiness, sleepiness, pain and discomfort etc. are the daily burden to be managed by the caregivers. Pill burden (so-called ‘high power/strength’ of medicine) and long duration of treatment also make it difficult for caregivers to ensure medication adherence by the patient.

● Lack of support and resources

Caregivers find that the usual community and family support structures that are available to anyone in times of medical emergency are not available to families of people with tuberculosis. In addition to social stigma, secrecy and isolation, transport to healthcare facilities, burden of repeated testing, lack of food security, loss of livelihood and income cause distress to family caregivers.

● Lack of compassionate communication at healthcare facilities

Both patients and caregivers express the need for greater empathy, privacy and psychological support and assurance from healthcare teams. Caregivers also experience anxiety about long-lasting impact of the disease on the patient, future prospects for personal and professional roles and are skeptical about return to normalization after completion of treatment.

● Special circumstances

There are some circumstances where caregivers require additional support from healthcare teams and communities, such as
• When the caregiver is also a patient and needs to take care of themselves and dependents in the family – children or elderly.
• When the caregivers are children or adolescents themselves.
• In patients with other comorbidities such as HIV, cancer or post-transplant patients, pregnant patients.
• In end-of-life-care- caregivers need additional support to manage distressing symptoms, prepare for the final moments and gather social support to manage death rituals, paperwork and bereavement.

2. How can we support caregivers better?
Ways to support caregivers’ needs based on the themes emerging from studies on caregivers of tuberculosis patients around the world-
• Accessible educational information in the form of culturally aligned instruction booklets appropriate for the reading level of the caregiver.
• Assistance with transportation, food security, day-care facilities to allow them to resume livelihood if possible
• Caregiver support groups, group counseling sessions
• Respite admissions for short duration even for stable patients with high home-nursing needs to allow caregivers to attend to other demands on their time.
• Developing and using validated tools like the Career Support Needs Assessment Tool to support caregivers in home hospice end-of-life-care.⁵⁶

Compassion fatigue and burnout

Long term caregiving is associated with compassion fatigue and burnout if the caregivers’ needs are not adequately addressed. Healthcare workers and allied workers at facilities for caring people with tuberculosis are at a higher risk for tuberculosis infection than the general population.^57,58,59  Nurses, nursing aides, laboratory assistants and allied workers in tuberculosis hospitals are at highest risk. In addition to this, they are also susceptible to higher rate of burnout due to their jobs requiring them to bear witness to the distress of many patients. Healthcare workers have conflicting emotions of empowerment when they are able to heal patients but also experience moral injury and spiritual distress when they are unable to help many others. The high disease burden and continuing challenges of treating a complex social disease which is a significant public health concern can lead to emotional exhaustion, depersonalization, hopelessness and feeling of low personal achievement, which collectively constitute burnout. This in turn affects their ability to deliver compassionate care to patients.

Measures to assess and address psycho-social wellbeing of healthcare workers and caregivers in the tuberculosis program is required. Art, music, story-telling and theater offer practices which can be used for raising awareness as well as support the emotional needs of caregivers with tuberculosis. Counseling and group activities, addressing the spiritual distress of health workers/caregivers and providing them with a supportive environment to ventilate their emotional distress can be included in the calendar of activities of Centers of excellence