Authenticity, ambivalence and recognition in caring at the end of life and beyond

The (Co)Production of Difference in the Care of Patients With Cancer From Migrant Backgrounds

“…Medical and health scholarship on migrant experiences of cancer and cancer care has rarely used the language of “difference” (or similarity) between subjects. Rather, it has tended to place an emphasis on the status of the individual being cared for (or divergences in cultural or linguistic characteristics from the norm) (King et al, 2019; Mazza et al, 2019; Tan et al, 2018) instead of on specific relations of difference and their consequences between actors (see Broom, Kenny, et al, 2019; Broom, Parker, & Kenny, 2019; Kristiansen et al, 2010; Stone et al, 2019, for exceptions).…”

Feeling called to care: a qualitative interview study on normativity in family caregivers’ experiences in Dutch home settings in a palliative care context

“…Our study also reinforces the idea that previous negative experiences with the healthcare system are motivating the provision of care at home [ 31 ], thus showing how caring practices are related to their sociopolitical context. Furthermore, concerning the call instigated by family and friends: caregivers’ often close relationship to the patients and their gatekeeper role places them in a complex social web, highlighting the challenge of maintaining relationships during and beyond the dying process [ 32 ], in line with what we found to be a call by well-intending but sometimes demanding friends and family surrounding the caregiver and patient.…”

“…A sociological perspective helps deepen our understanding of how these normative aspects are shaping caregiver experiences. Ultimately, family caregiving is an evolving experience, subject to social scripts and expectations [ 32 ]. According to sociologist Hochschild’s framework about how people make sense of their emotions, we all live by ‘framing rules’ that govern how we view our situation, and by ‘feeling rules’ with which we relate to these frames and define what we should or should not feel [ 41 , 42 ].…”

“…According to sociologist Hochschild’s framework about how people make sense of their emotions, we all live by ‘framing rules’ that govern how we view our situation, and by ‘feeling rules’ with which we relate to these frames and define what we should or should not feel [ 41 , 42 ]. Caregivers, seen from this perspective, judge their experiences and feelings based on how well they fit with what they believe is to be expected from a ‘good caregiver’ [ 32 ]. Misfits inevitably lead to feelings of failure, Broom et al (2019) argue: caregivers’ actual but perhaps ‘inappropriate’ feelings then conflict with their intentions and, sometimes even romanticized, expectations, such as ‘till death to do us part’.…”

“…Caregivers used such expressions as ‘till death do us part’ or ‘for better or worse’ as a motive to persevere while feeling exhausted, or they wanted to keep doing everything they could to prevent themselves from not feeling guilty afterward (the feeling of failure in Broom’s terms). Or they regretted not having been able to be present when their family member died, showing the “inevitable messiness of the dying process” (p. 7) which obstructs caregivers’ abilities to achieve their desired outcomes [ 32 ].…”