Quality of Life (QOL)

• Initially not considered medically important unless length of survival and signs of disease were considered; psychosocial consequences of illness and disease were deemed unimportant.

• Examines how its components (physical functioning, psychological status, and social functioning) are affected by disease or treatment related symptoms; gauge the extent to which a patient’s normal (life) activities are compromised by disease and its treatment.

Importance of studying QOL

• Guide development of interventions to improve QOL

• Pinpoint potential problems specific for patients with particular diseases

• Assess the impact of treatments

• Guide comparison of therapies

• Inform practitioners of care strategies that maximize long-term survival with the highest possible QOL

Emotional Responses to Chronic Illness

• Denial – most common response; patient often wants to avoid implications of their illness; e.g. act as if their illness is not severe, will go away shortly, or has little to no long-term complications

• Anxiety – result of being overwhelmed by potential major changes in life as well as the prospect of death; e.g. catastrophic thinking

• Depression – complicates treatment adherence, medical decision making (adopting a co-managerial role); oftentimes a late reaction since patients don’t realize the full implications of their illness.

Personal Issues in Chronic Illness

• Physical Self – body image; perception and evaluation about one’s physical functioning and appearance

• Achieving Self – People derive primary life satisfaction from their job or career.

• Social Self – Family and friends are an important source of needed information, tangible help, and social support.

• Private Self – residual core of a patient’s identity (ambitions, goals, and desires for the future)

Comanagement of Chronic Illness

• Physical Rehabilitation – Goals: regain and/or maintain as much mobility as possible, learn how to sense changes in one’s environment to make appropriate physical accommodations, learn how to control energy expenditure.

• Vocational Issues – restricting or changing work activities

• Social Interaction problems – ambivalence, effects of illness on the family and family interactions, dyadic coping

• Gender as a factor – Typical caregiver is more likely to be elderly, female, caring for an ill spouse; at risk for distress, depression, declining health.

When the Chronically ill Patient is a Child

• Children may not fully understand their diagnosis and treatment as they try to cope.

• Chronically ill children may not be able to follow their treatment plan independently. Therefore, the family has a vital role to play in actively participating in the child’s illness and treatment processes.

• The family’s interdependence in cases of chronically ill children may lead to tension between parent and child.

• Sometimes, children may be exposed to isolating and terrifying procedures as part of their treatment.

Helping Families of Chronically ill Children

• Help parents understand that children may show a variety of maladaptive behaviors such as: rebellion, withdrawal, repression and/or regression.

• Children may also have low self-esteem as a result of their treatment process; e.g. hair loss secondary to chemotherapy

• Children may also feel cheated especially when their friends and acquaintances are healthy.

• Parents who have REALISTIC attitude towards the illness and its treatment can best soothe the child emotionally and make an INFORMED decision regarding their care.

• Encourage children to engage in as much SELF-CARE as possible.

• Encourage realistic return to normal activities (includes school and physical activities).

• Educate other family members about the child’s illness and treatment regimen.