Palliative care is “an approach that
improves the quality of life of patients and their families who are facing
problems associated with life-threatening illness. (citation). Family members
become an integral and inevitable part in delivering care.
The terms family caregiver and informal
caregiver refer to an unpaid family member, friend, or neighbor who provides
care to an individual who has an acute or chronic condition and needs
assistance to manage broad range of activities including activities of daily
living and health related decisions. (Chakraborty & Susan 2008). Often
family caregiver is the primary caregiver who provides care for most of the
time. (Wei 2011).
The role of primary family caregiver is
inherently stressful and demanding. The family caregiver is viewed as the
“secondary patient” or the “hidden patient” (Susan 2008). The strain
borne by the caregiver, which is termed as caregiver burden (Zarick, Jaisri) is
multidimensional. The burden causes physical, psychological, emotional, social,
and financial stress. (Bhuse M 2008). In addition to the labor intense
caregiving, unpreparedness, inadequate knowledge and experience in caregiving,
kinship obligations, financial constraints contribute to the stressful
experience. The distress extends along a continuum ranging from emotional
vulnerability to physical disabilities. (Howell)
Caring may provide positive consequences
such as reward and satisfaction. However, extensive research has documented
both the physical and psychological negative consequences and poor quality of life
associated with caregiving (Srivastav, Werner, Bevens). In addition to the
chronic disabling conditions, the “end of life” in palliative care may augment
the stressful experience.
Over the last few decades, palliative
health care has been slowly increasing in India (Khosla). This study would add
to existing knowledge about the impact of caregiving in palliative health care.
Understanding the impact may prove beneficial for designing interventions to
nurture the well being of family caregivers.