Psychosocial aspects in the care of people with TB

Tuberculosis, while treatable, can be a physically and emotionally demanding illness. Palliative care plays a crucial role in addressing the psychological needs of people with TB throughout their journey, not just at the very end. Overall, a holistic approach to palliative care for people with TB recognizes the interconnectedness of physical, emotional, and social well-being. By addressing these psychosocial aspects, alongside physical symptom management, palliative care aims to create a dignified and meaningful experience during and at the final stages of their illness. Palliative care can significantly improve the quality of life for people affected by TB and their families, empowering them to cope with challenges and find meaning throughout their journey.

1. Impact of Psychosocial Factors on TB Outcomes

Studies have established a strong link between unaddressed psychosocial issues and :
● Treatment adherence: Negative emotions and lack of social support can hinder adherence to the lengthy and complex TB treatment regimen.
● Quality of life: TB can significantly impact people’s physical and emotional well-being, leading to social isolation and decreased quality of life.
● Mental health: The disease and its treatment can increase vulnerability to anxiety, depression, and other mental health challenges.

2. Key Psychosocial Concerns

● Anxiety and Fear: The diagnosis of TB can trigger significant anxiety about the course of the disease, potential complications, and associated long-term health implications. Fear of transmission to loved ones and concerns about the stigma associated with TB can further exacerbate anxiety.
● Depression: The physical symptoms of TB, combined with the social isolation and limitations imposed by treatment, can contribute to feelings of hopelessness, helplessness, and loss of control, leading to depression.
● Coping difficulties: Adjusting to the demands of the treatment regimen, including potential side effects and medication adherence, can be challenging. People with TB may struggle to cope with the emotional and practical burdens of the illness, impacting their overall well-being.
● Social isolation: Fear of transmission and the stigma associated with TB can lead to social isolation and withdrawal from social activities. Lack of social support can further exacerbate feelings of loneliness and depression, hindering their coping abilities.
● Stigma and discrimination: While treatable, TB carries a heavy stigma leading to isolation, shame, and anxiety. This stigma negatively impacts mental health, causing depression and anxiety, and hinders treatment adherence through fear of disclosure, causing individuals to avoid seeking or discontinuing treatment, ultimately posing challenges for public health efforts. Addressing this issue through educational campaigns and promoting empathy can create a supportive environment for individuals with TB, leading to better treatment outcomes and a healthier society.
● Coping with the chronic illness: TB treatment can be a significant source of frustration and emotional distress. The lengthy and demanding treatment regimen can lead to feelings of powerlessness and a loss of control over one's life. Individuals may experience frustration due to limitations in daily activities, fatigue caused by medication, and the long duration of the treatment course. This frustration can then morph into feelings of hopelessness and powerlessness, impacting mental well-being and potentially hindering adherence to the treatment plan.
● Psychological distress: The diagnosis of TB, especially in the context of potential complications or even death, can generate overwhelming and debilitating psychological distress for individuals. This intense burden of negative emotions can significantly diminish an individual's quality of life and create roadblocks in their journey of treatment and recovery.
● Lack of access to mental health services: Limited access to mental health care and stigma associated with mental illness can further exacerbate these challenges and hinder recovery.
● Social and economic impact: TB's reach extends beyond individual health, deeply impacting social and economic well-being. The lengthy treatment schedule can disrupt work, leading to loss of income and potential loss of job . This financial strain creates additional stress, while the fear of stigma and discrimination can lead to social isolation and disruption of relationships. The combined effect of these factors can trap individuals and their families in a cycle of poverty, further hindering access to proper healthcare and perpetuating the burden of TB on individuals and society at large.
● Spiritual challenges: Facing a life-threatening illness raises profound questions about life, death, and purpose, creating a need for spiritual support and meaning-making.

3. People at different stages of illness require different types of psychological support

i) People in the diagnostic phase
Acute stress response has been described as the usual response to the diagnosis of TB. The response is characterized by shock, disbelief, anxiety, depression, sleep and appetite disturbance and difficulty performing activities of daily living. Patients and families often experience fear, concerns and isolation during this period. Early assessment by clinicians can help identify individuals who are at greatest need of ongoing psychosocial support.
Often times recurrence and repeated episode of the disease could be very distressing to the patient, with an increase in depression anxiety suicidal ideation, such a situation requires psychological support and a holistic medical care which is possible through palliative care.

Factors that may predict poor coping mechanism are as follow:
● Past psychiatric history
● Limited social support
● Alcohol or drug abuse
● Recent losses
● Advanced disease

ii) During the course of disease: As uncomfortable symptoms increase, perceived quality of life diminishes. Thus, an important goal in the psychosocial treatment of the people with advanced TB is control of the physical symptoms.
There is a need for health care professionals to establish structured dialogue with patients and family members. Psychiatric consultation liaisons nurses, psychiatrists, social workers and program staff are invaluable resources in the decision-making process about treatment options in advanced stages.
Positive coping strategies, such as taking action and finding a favorable coping mechanism in the situation, have been reported as effective.

iii) People in the terminal stage of illness
Palliative care can relieve physical and psychological symptoms and promote comfort and wellbeing to the point of death. Patients and families who have received such services along with illness trajectory often will be more open to palliative efforts in the final stage of life.

4. Addressing emotional needs

Palliative care teams play a vital role in addressing the psychological needs. This includes providing:
● Assessment: Comprehensive assessment of patients' emotional, social, and spiritual needs using standardized tools and open-ended discussions.
● Active listening and validation: In tackling the psychological challenges linked to TB, active listening and validation are crucial. This involves healthcare providers creating a safe and supportive environment where patients feel comfortable expressing their worries, anxieties, and frustrations openly and without judgment. By actively listening and validating their emotions, healthcare providers can build trust, foster empathy, and empower patients to participate actively in their treatment journey, ultimately leading to better treatment outcomes and improved mental and social well-being.
● Psychotherapy and counseling: Psychotherapy and counseling can play a vital role in supporting individuals with TB manage the emotional challenges associated with the disease. These interventions, offered through individual or family therapy sessions, help address specific issues like anxiety or depression. Therapists use various techniques to equip people with coping mechanisms, improve their emotional well-being, and foster resilience in dealing with the demands of their diagnosis and treatment. By addressing these psychological burdens, therapy can empower individuals to adhere to treatment plans, improve their overall quality of life, and contribute to better treatment outcomes.
● Spiritual support: Spiritual support can be a valuable resource for individuals with TB, if they desire it. This type of support, provided by chaplains, religious leaders, or spiritual guides, can offer patients a sense of meaning and purpose in their illness journey. They can help individuals find peace and comfort through prayer, meditation, or religious practices, fostering a sense of hope and resilience. However, it's crucial to remember that spiritual support is not a substitute for medical treatment and should always be offered with respect for individual beliefs and preferences.

5. Building a Support system

Palliative care also emphasizes the importance of building a strong support system. This includes:
Family counseling: The emotional strain of TB isn't confined to the individual. Family counseling can play a crucial role in supporting families impacted by TB. Therapists can facilitate open communication between family members, helping them express their concerns and anxieties in a safe space. Additionally, family counseling can equip families with coping mechanisms to handle the emotional and logistical challenges associated with caring for a loved one with TB, ultimately fostering a supportive and unified environment conducive to healing.

Social support groups: The feeling of isolation can be a major challenge for individuals battling TB. Social support groups provide a platform for connecting with others facing similar experiences, fostering a sense of belonging and reducing isolation. By sharing experiences, challenges, and successes within these groups, individuals can find emotional support, encouragement, and valuable insights from others who understand their unique journey. This sense of community can empower individuals to feel less alone and more resilient in their fight against TB.

TB Champions: A TB Champion³ is a person who has been affected by TB and successfully completed the treatment. They act as role models and can provide valuable support to those with TB and their families. The services these champions can be utilized in TB palliative care

6. Strategies for Effective Psychosocial Care Delivery

Multidisciplinary team approach: Collaboration between healthcare professionals, social workers, counselors, and spiritual care providers is crucial for holistic care.

Culturally sensitive care: Recognizing and respecting the diverse cultural and religious backgrounds of patients.
Empowerment and education: Empowering affected people with information about their illness, treatment options, and available psychosocial support services.

Community involvement: Engaging community resources and support groups to create a network of support beyond the healthcare setting

7. Key Socioeconomic Challenges

● Loss of Income: TB can lead to lost income due to missed workdays, diminished ability to work, or loss of job due to stigma. This can create financial strain and threaten basic needs like housing and food security.
● Food Insecurity: TB treatment can worsen existing food insecurity due to the illness itself, financial limitations, and dietary restrictions. Inadequate nutrition can compromise treatment outcomes and overall well-being.
● Access to Healthcare: Poverty and lack of health insurance can create barriers to accessing necessary healthcare services, including medications, consultations, and diagnostics, further hindering effective treatment and management.
● Education and Employment: TB can disrupt education and career opportunities due to illness, treatment schedules, and potential stigma. This can limit future earning potential and perpetuate the cycle of poverty.

8.Palliative Care's Role in Addressing Socioeconomic Needs

● Needs Assessment: A comprehensive assessment of the affected individual’s social and economic circumstances is crucial to identify specific needs and tailor interventions accordingly.
● Social Support: Connecting affected people with social workers, community resources, and relevant government programs to provide financial assistance, food aid, and access to basic necessities.
● Vocational Rehabilitation: Supporting skills development and retraining programs can empower affected individuals to re-enter the workforce and improve their long-term financial stability.

9. Empowering People with TB

● Information and Education: Ensure people affected with TB have access to accurate and culturally sensitive information about TB, treatment options, and available support services. This empowers them to make informed decisions about their healthcare and navigate the challenges of the disease.
● Shared Decision-making: Encourage healthcare providers to adopt a collaborative approach to treatment planning, involving patients in decision-making processes. This fosters a sense of empowerment and control over their treatment journey.
● Life Skills Training: Offer skills training programs to help people affected by TB to develop practical skills for managing finances, navigating the healthcare system, and advocating for their needs. This empowers them to face the challenges of the disease and build a sense of self-confidence. Life skills training programs for people with TB aim to equip them with practical skills and knowledge to navigate the challenges associated with the disease and improve their overall well-being. These programs typically focus on the following key areas:

(i) Self-Management:
● Medication Adherence: Educating people with TB on the importance of medication adherence, potential side effects, and strategies for managing them effectively. This can involve developing medication schedules, using reminders, and addressing medication-related concerns.
● Symptom Management: Training patients on identifying and managing common symptoms of TB, such as fatigue, cough, and loss of appetite. This includes self-care techniques, breathing exercises, and understanding when to seek medical attention.
● Nutritional Management: Providing guidance on healthy eating habits to maintain a balanced diet and support the immune system during treatment.

(ii) Communication and Advocacy:
1.    Effective communication with healthcare providers: Training affected people on how to effectively communicate their symptoms, concerns, and needs to healthcare professionals. This enables them to actively participate in their treatment decisions and ensure they receive adequate support.
2.    Advocacy for themselves and others: Empowering patients to advocate for their rights and access to healthcare services. This can involve learning about relevant support programs, addressing stigma and discrimination, and advocating for policy changes that improve TB care delivery.

(iii) Financial Management:
● Budgeting and financial planning: Helping people manage their finances effectively. This can include coping with potential income loss due to illness and exploring available financial assistance programs.
● Accessing healthcare resources: Guiding people with TB on navigating the healthcare system, understanding insurance coverage, and accessing necessary resources for treatment and follow-up care.