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Socio-cultural contexts of end- of- life conversations and decisions: bereaved family cancer caregivers' retrospective co-constructions.

ABSTRACT: End-of-life communication becomes increasingly difficult in terminal cancer, which inevitably entails conversations around dying and death. In resource-limited areas, the context of end-of-life communication is usually home-based palliative care comprising mostly women in the family who play critical roles as informal caregivers. This article examined the content and contexts of family end-of-life conversations and decisions based on the retrospective accounts of a sample of bereaved women family cancer caregivers in Nairobi, Kenya.An interpretative phenomenological analysis approach was utilized to explore pertinent end-of-life communication themes. Four mini focus group interviews with a total of 13 participants [n = 5; n = 3; n = 3; n = 2] were conducted.Two end-of-life themes, advance directives as preparedness for death, and initiating death talk were examined. Findings (a) illustrate the role of family dynamics in influencing the nature of end-of-life conversations and decisions (b) demonstrate the transitional nature of family caregiver roles, and (c) underscore the paradox of the critical role played by family members in palliative care versus their ill preparedness in dealing with end-of-life issues.Findings are relevant in informing palliative psychosocial interventions and specifically the concerns and decisions of cancer patients and their families. This prompts further engagement with the question of how to equip family caregivers in resource-limited contexts for end of life care. Methodologically, these results demonstrate the possibility of simultaneous elucidation of individual experiences, interactive co-constructions and the socio-cultural contexts of experiences and meaning making processes in IPA research.

SUBMITTER: Githaiga JN

PROVIDER: S-EPMC5557528 | biostudies-other | 2017 Aug

REPOSITORIES: biostudies-other

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Project description:IntroductionIt is unknown how the brain coordinates decisions to withstand personal costs in order to prevent other individuals' distress. Here we test whether local field potential (LFP) oscillations between brain regions create "neural contexts" that select specific brain functions and encode the outcomes of these types of intersubjective decisions.MethodsRats participated in an "Intersubjective Avoidance Test" (IAT) that tested rats' willingness to enter an innately aversive chamber to prevent another rat from getting shocked. c-Fos immunoreactivity was used to screen for brain regions involved in IAT performance. Multi-site local field potential (LFP) recordings were collected simultaneously and bilaterally from five brain regions implicated in the c-Fos studies while rats made decisions in the IAT. Local field potential recordings were analyzed using an elastic net penalized regression framework.ResultsRats voluntarily entered an innately aversive chamber to prevent another rat from getting shocked, and c-Fos immunoreactivity in brain regions known to be involved in human empathy-including the anterior cingulate, insula, orbital frontal cortex, and amygdala-correlated with the magnitude of "intersubjective avoidance" each rat displayed. Local field potential recordings revealed that optimal accounts of rats' performance in the task require specific frequencies of LFP oscillations between brain regions in addition to specific frequencies of LFP oscillations within brain regions. Alpha and low gamma coherence between spatially distributed brain regions predicts more intersubjective avoidance, while theta and high gamma coherence between a separate subset of brain regions predicts less intersubjective avoidance. Phase relationship analyses indicated that choice-relevant coherence in the alpha range reflects information passed from the amygdala to cortical structures, while coherence in the theta range reflects information passed in the reverse direction.ConclusionThese results indicate that the frequency-specific "neural context" surrounding brain regions involved in social cognition encodes outcomes of decisions that affect others, above and beyond signals from any set of brain regions in isolation.

Project description:Exchanging gazes with a social partner in response to an event in the environment is considered an effective means to direct attention, share affective experiences, and highlight a target in the environment. This behavior appears during infancy and plays an important role in children's learning and in shaping their socio-emotional development. It has been suggested that cultural values of the community affect socio-emotional development through attentional dynamics of social reference (Rogoff et al., 1993). Maturational processes of brain-circuits have been found to mediate socio-cultural learning and the behavioral manifestation of cultural norms starting at preschool age (Nelson and Guyer, 2011). The aim of the current study was to investigate the relations between cultural ecology levels and children's joint attention (JA). Initiation of JA bids was studied empirically as a function of the level of social load of the target toy (3 levels), the community level of adherence to traditional values (3 levels), parental education (2 levels), and gender. Sixty-two kindergarten aged children were enrolled in a structured toy-exploration task, during which they were presented with toys of various social loads, with social agents (i.e., mother and experimenter) present nearby, and non-social distracters presented intermittently. Measurements included the child's number of JA bids and the extent of positive affect. Analysis of variance indicated that the child's initiation of JA toward the social partner was affected by all levels of cultural ecology (i.e., toy's social load, adherence to tradition values, parental education, gender), thus supporting the study's hypotheses. The effects were such that overall, children, particularly girls' JA initiation was augmented in social toys and moderated by the socio-cultural variables. These results suggest that cultural ecology is related to children's JA, thereby scaffolding initiation of social sharing cues between children and adults. JA plays a role in adjusting children's internal representations of their respective ecological environment.

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Socio-cultural contexts of end- of- life conversations and decisions: bereaved family cancer caregivers' retrospective co-constructions.

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