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

Saleh, Fatima; O’Neill, C.

doi:10.5430/cns.v6n3p57

Cited by 2 publications

(1 citation statement)

References 42 publications

(90 reference statements)

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“…In a study of Kotronoulas et al (2012), family members are required to assume multiple roles, and consequently, make significant adjustments in their lives, in order to gratify the complex demands of their cancer patients. Family members were not expecting the diagnosis; hence, their unpreparedness for the burden of caregiving, most especially at home-based end-of-life care (EoLC) (Saleh &O'Neill, 2018). As they assume a new identity, family caregivers desire to receive every single detail that would help them in their role (Zapart et al, 2007).…”

Section: Ambivalence In Anticipationmentioning

confidence: 99%

“Swinging Pendulum”: Lives of Family Members Caring for A Dying Relative

Sumaguingsing¹,

Martinez²

2019

Preprint

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Among cultures which place emphasis on the centrality of family in ones lives, the care for the dying patient is more often than not delegated on family members. Given this context, it is interesting to note that few research have been done on the experiences of these individuals who provide care to their dying relatives. This research aims to understand the lives of these informal carers as they provide care to their dying relatives. After securing clearance from an IRB, seven (5) informants, deemed as coresearchers, were recruited and agreed to participate in this study. The co-researchers where selected based on a pre-set criteria and the number were reached based on theoretical saturation. Multiple individual in-depth face-to-face interviews were done to create the individual narratives which was later reflectively analysed. Interpretive phenomenology as espoused by van Manen served as the philosophical underpinning of the study. Consequently, the proposed analytic technique of van Manen was utilized as the process of reflective analysis. After the process of reflective analysis, three (3) themes were gathered, namely: Ambivalence in anticipation, Courage in uncertainty, Meaning in suffering. These themes represent for the co-researchers their lives as they care for their dying relatives. Further, these themes reflects for the co-researchers a phenomenon of living moment-to-moment, unsure of what tomorrow will bring, patiently waiting for their relative to cross over. For them, there seems to be a constant struggle of finding a reason for being and a sense of what has happened, what is happening and what could happen to their dying relative and their family after their death. This essence can be symbolically represented by a swinging pendulum, constantly in motion trying to situate ambivalence in their anticipation, looking for courage amidst uncertainty and finding formeaning in their experience of suffering. The insights suggest that there is a need for constant dialogue among family members and health care providers as they assumed the role of primary caregivers. Further continued emotional, moral and spiritual support is implied during this transition as well as follow-ups when the families are at the home setting.

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Section: Ambivalence In Anticipationmentioning

confidence: 99%

“Swinging Pendulum”: Lives of Family Members Caring for A Dying Relative

Sumaguingsing¹,

Martinez²

2019

Preprint

View full text Add to dashboard Cite

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Methodological and ethical challenges while conducting qualitative research on spirituality and end of life in a Muslim context: a guide to novice researchers

Lalani

Ali

2020

Int J Palliat Nurs

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Spirituality could be understood as a personal belief, a relation with sacred, divine experience, a sense of purpose and meaning towards life, authenticity and connectedness. It is a continually evolving, highly complex, contextual, subjective, and sensitive construct. A continuous development is seen around understanding about spirituality and spiritual concepts, such as spiritual experiences, spiritual pain and spiritual distress, especially among patients and families at the end of life. The concepts, values, attitudes, and beliefs around spirituality, spiritual needs and expressions vary among different individuals, cultures, and religions. There is a dearth of literature around spirituality, especially among Muslim patients and families at the end of life. The complexities around the concept of spirituality in the literature raise several ethical and methodological concerns for a novice researcher while planning and conducting a study on spirituality during end-of-life care in a hospice setting, especially among a Muslim population. This paper aims to share some of the methodological and ethical challenges that can be faced by qualitative researchers while conducting research around spirituality and end-of-life care in an Islamic/Muslim context. Major challenges include defining the term spirituality, spirituality and culture, communication, power relations, language and translation, recruitment and selection of the participants, emotional distress, and reflexivity and reciprocity. Having an in-depth understanding of these challenges can guide researchers to address these issues adequately in their spirituality research in a Muslim context.

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

Cited by 2 publications

References 42 publications

“Swinging Pendulum”: Lives of Family Members Caring for A Dying Relative

“Swinging Pendulum”: Lives of Family Members Caring for A Dying Relative

Methodological and ethical challenges while conducting qualitative research on spirituality and end of life in a Muslim context: a guide to novice researchers

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