Impact of Patient and Family Involvement in Long-Term Outcomes.

Surviving a critical illness can have long-term effects on both patients and families. These effects can be physical, emotional, cognitive, and social, and they affect both the patient and the family. Family members play a key role in helping their loved one recover, and this recovery process can take considerable time. Transferring out of an intensive care unit, and discharging home from a hospital, are important milestones, but they represent only the beginning of recovery and healing after a critical illness. Recognizing that these challenges exist both for patients and families is important to improve critical illness outcomes.

Compassion in the Clinical Context: Constrained, Distributed, and Adaptive.

BACKGROUND: Compassion is intrinsically situated within particular contexts and how these contexts can shape compassion has not been well-described. OBJECTIVE: The purpose of the study was to describe how individual and contextual challenges can impact compassion within critical care and palliative care settings. DESIGN: This qualitative study adopted phenomenology and autoethnography to inform data collection, and principles of activity theory and realist inquiry for data interpretation. PARTICIPANTS: Five clinicians who work in critical care (n = 3) and palliative care (n = 3) participated in the study. APPROACH: Qualitative data were obtained from ethnographic observations, interviews, and focus groups. Participants observed and recorded field notes (n = 53) on instances of suffering and compassion in their workplace settings. At the end of the study period, they participated in a focus group or individual interview to reflect on their experiences. Data was analyzed using constructivist grounded theory techniques and iteratively synthesized through group discussion and model building. KEY RESULTS: The findings reflected four phenomena associated with compassion in context: individual gaps and lapses in compassion, relational challenges, contextual constraints on compassion, and distributed compassion. Individual gaps and lapses in compassion involved inattention, intention vs. perception, personal capacity, and personal toll. Relational challenges included receptivity, fragmentation, and lack of shared understanding. Contextual constraints consisted of situational pressures, the clinical environment, gaps in education, and organizational culture. The distribution of compassion within teams and how teams adapt their behaviors in response to perceived needs for greater compassion modulated these challenges. CONCLUSIONS: The study illustrates the many ways in which compassion can be shaped by context and highlights the role of teamwork in identifying gaps and lapses in compassion and responding in a way that supports patients, families, and colleagues.