The Lived Experience of Lebanese Family Caregivers of Cancer Patients

Abstract

The purpose of this study was to explore, through in-depth semistructured interviews, the lived experience of Lebanese family caregivers of cancer patients and acquire a better knowledge of the meaning and interpretation of their experience. The study design was based on the Utrecht School of Phenomenology. This study followed purposeful sampling, in which 9 participants with a mean age of 51 years were selected. Data were analyzed using the hermeneutic phenomenological approach based on the Utrecht School of Phenomenology. Eight core themes describing the participants' lived experience emerged from the interviews: living with fears and uncertainty, loss of happiness, feeling of added responsibility, living in a state of emergency, sharing the pain, living the dilemma of truth telling, disturbed by being pitied, and reliance on God. The results of this study challenge nurses to be conscious of the nature and difficulties that family caregivers are encountering.

The experiences of caregivers providing home care for terminally ill family members at the end of life: A phenomenological study in Bahrain

“…[33] A finding that concurs with Doumit et al's [20] Arabic study which addressed the lived experience of Lebanese family caregivers of cancer patients, which showed that carers lived in a state of emergency filled with fears and uncertainty of what may occur to the ill person at any time. Similarly to the caregivers in this study, Lebanese caregivers appeared to share the pain of their loved ones.…”

“…A finding that relates to caregivers lack of preparedness and feelings of fear, anxiety, stress, inadequacy and uncertainty about their ability of providing home care. [20,[35][36][37][38][39] Furthermore, the literature affirmed that there was no discussion about what to expect in palliative home care and carers felt health professionals were hesitant to discuss difficult issues like managing palliative care at home and end of life care. [40] Thus, they learned caregiving skills by trial and error.…”

“…Likewise, the literature showed that faith is an important mechanism for coping to deal with stress, fear, and, uncertainty, it is the bond that gets family members together even during tension. [20,33,36] Engaging in religious acts is believed to please God and facilitate Muslims entrance to heaven. [47] Since all caregivers in this study were Muslims they helped their sick relatives as a way of showing obedience to God which may explain their commitment to caregiving.…”

“…[17][18][19] Frequently caregivers experience giving care as a burden because of the responsibilities involved in helping the patient survive the journey of cancer, or alternatively to have a peaceful death. [6,7,20] In addition, carers frequently engage in home care for a sick relative while simultaneously working outside the home full time. Ultimately, the burden of care disrupts the caregivers personal needs and social relationships.…”

Experiences of living with advanced colorectal cancer from two perspectives – Inside and outside

“…This led to feelings of isolation in the person with cancer, and prevented the sense of sharing and getting through together. Doumit et al (2008) described how the situation could also be the opposite, where in other socio-cultural contexts the person with cancer might have less knowledge about the disease and its prognosis than the caregiver and that having more knowledge was experienced as a burden.…”