Role of Psychosocial treatment in Chronic Illnesses

We live longer but do we live better  – decoding psychosocial distress in chronic illness.

KV Ganpathy
Clinical Psychology
Counselor – Palliative care

We are living longer, but are we living better??

The question then is “We are living longer, but are we necessarily living better?” Patients must cope with a chronic condition and yet the emotional dimensions of these conditions are frequently overlooked. Challenges still exist in the recognition and management of the psychological and social dimensions of chronic illness.

Treatment for these illnesses can often be invasive and damaging to older adults. The unfamiliar, and stressful nature of the hospital environment can be traumatic, prevent effective coping, and aid in negative outcomes following discharge from the hospital. The psychological effects as a result of these situations can be long-lasting and impactful.

What is Chronic illness?

Disorders that persist for an extended period and affect a person’s ability to function normally.” (deRidder et al., 2008, 246).

Outcome of such a trajectory, compounded by uncertainty, brings with it an upheaval in a person’s life, with a huge compromise on quality of life and well-being.

QOL, the very essence of Palliative care .is “an individual’s perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns (World Health Organization as stated in Megari, 2013, 141).”

The prevalence of chronic diseases increases significantly with age, with the most common health problems being arthritis, cardiovascular disease, cancer, and diabetes and perhaps neurological conditions. And with it, the presence of pain; nutritional status; risk for falling; incontinence; sleep; alcohol and drug use; dental or oral health; sensory perception, especially vision and hearing and misuse of medications. These health conditions may significantly influence other domains like lowering psychological well-being, limiting functional ability, and diminishing quality of life.
All these, eventually leads to individual compromising hugely on their dignity coupled with a feeling of de-individualization. Many times, such conditions are not addressed forthwith because of stereotypical beliefs that aging is associated with increased negative affect.
According to Engel, an individual is cured sometimes, relieved often, but need to be comforted always. This calls for shifting the perspective of managing a patient from disease centered to person centered, and importantly, an understanding of physical, emotional, social & spiritual sufferings – called a bio psycho socio spiritual approach – can be helpful. The biopsychosocial model asserts that psychological issues develop because of a combination of factors: biological, psychological, and social. Recent modification to this model is inclusion of spiritual domain.

The approach acknowledges the concept of total pain, i.e,. physical, emotional, social and spiritual. Any physical component has its psychological nuances. But it is equally important to remember that other three dimensions, contribute to one’s distress majorly, which can exacerbate the physical pain as well. At times, the suffering is accentuated by the emotional, social & spiritual dimension of an individual, even in the absence of physical pain. It is the collective experience that defines Quality of Life, the very essence of palliative care. Acknowledging & affirming life requires focus on all the four areas.

Managing chronic illness presents a profound challenge not just about the patient, but caregivers, too. Primarily because

• The trajectory of advanced chronic illnesses has changed from a relatively brief period to a longer period.
• The increase in the number of people with advanced chronic illnesses will require care being provided in the home, with greater reliance on care provision by family members.

There is enough evidence to support that advanced chronic illness can be highly stressful for both patients and their families. Therefore, providing necessary skill & psycho education empowers the caregivers to sustain the quality of care to their loved ones.

THE PSYCHO SOCIAL DISTRESS

Having a chronic illness shakes the very foundation of one’s assumptions about their body & health. Individuals take it for granted that their life will always be coherent, and meaningful. The feeling of intactness is consolidated with cultural beliefs like life style, religiosity etc. Of course, with covid pandemic, more and more people are now beginning to question the coherence. In my practice as a counselor in the oncology setting, every second family struggles with both existential & spiritual struggle, which is rooted in such belief systems, even today.

Once diagnosed, the individual is on a roller coaster, experiencing losses, the depth and breadth of which depend on the severity of the illness and the limitations it imposes. The first and most obvious is the loss of good health and robustness—kick-starting a cascade of other allied losses, depending on the nature of the illness, which may include comfort, sexual function, career, income, self-efficacy, freedom, cognitive function, intimacy, pride, joy, self-esteem, self-control, independence, mental health, hope, dignity, and certainty. In the most extreme cases, one illness may bring about all of these losses, sometimes over and over again in many ways.

Typically, onset of any chronic illness presents with symptoms that are Acute or gradual in nature. The trajectory of the illness moves from progressive, to constant for a while and then gets episodic or relapsing. Likewise, the outcome moves from no immediate threat to life, to limited life and finally o eventual death. The psychosocial distress keeps pace with this trajectory.

Existential & Spiritual distress

Hope is an important psychological resource that feeds life. The occurrence of chronic illness often challenges an individuals’ beliefs and hopes. Re-evaluating these hopes in the face of chronic illness with loss of their previous hopes is important in creating new hopes. The disability, arising out of chronicity is marked by distress when the individuals find their meaning & purpose in life getting disturbed. Making meaning of life situation is an important process in a person’s psychological adjustment through the disease experience. Ignoring this can lead to severe distress – both existential and spiritual. Helping the person through this process, can be rewarding. However, the challenge is to have insight & skill to deal with such distress by the care provider.
When the psycho social is unaddressed, it has the potency to cause disability that contributes to a diagnosis becoming SUFFERING. The disability can force the individuals to surrender their aspirations caused by loss of previous health, the struggle of learning to deal with and make sense of uncomfortable symptoms, coping with impact of symptoms on own physical and emotional health, family roles, work, finances etc. Difficulty in coming to terms with ‘the new normal’ can be riddled with fear & panic, guilt, anxiety & depression. In other words, distress ceases to be just physical but, psycho-socio-spiritual as well. Chronic illness can impact a person’s ability to engage in activities that bring a sense of meaning and purpose to life – it can threaten life goals. There may be a sense of personal failure or anger about their incapacity to do things which were meaningful to them.

Impact on the carers/partners

The impact of Chronic illness is multidimensional, affecting not only the individual afflicted, but also their healthy partner & other family members. …The unpredictability of the patient’s condition, the anticipation of possibly bad days, may force partners to set aside their own needs, reorganize their lives in advance, or it may hinder personal achievements.

Most adaptive tasks of chronic disease management require help from others. However, the support from family & friends can become inconsistent and at times perceived burdensome. Family & social dynamics can change from supportive to misunderstanding & avoidance.

The silver lining

Current research indicates a growing interest in alternatives to pharmacological treatments. There is increasingly more evidence to support interventions that address the emotional, psychological, and social aspects – psycho social care – of aging and health care.

Psychosocial interventions defined as any intervention that emphasizes psychological, behavioural or social factors rather than biological factors, such as pharmacotherapy, are increasingly being acknowledged as an integral part of care. Interventions like psycho education, CBT (Cognitive Behavioral Therapy), Narrative therapies have found its place in the mainstream care provision. The interventions have brought out desired outcome both in patients and their care givers, by improving their symptoms, functioning, quality of life, and social inclusion.

Illness is a diagnosis, but suffering is an experience – And it requires insight to trace the source of distress, which many times may be beyond the physical dimension of the illness