Persistence of patient and family experiences of critical illness.

OBJECTIVE: To investigate: (1) patient and family experiences with healthcare and the intensive care unit (ICU); (2) experiences during their critical illness; (3) communication and decision making during critical illness; (4) feelings about the ICU experience; (5) impact of the critical illness on their lives; and (6) concerns about their future after the ICU. DESIGN: Four semistructured focus group interviews with former ICU patients and family members. SETTINGS: Multicultural community group and local hospitals containing medical/surgical ICUs. PARTICIPANTS: Patients and family who experienced a critical illness within the previous 10 years. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Four separate focus groups each lasting a maximum of 150 min and consisting of a total of 21 participants were held. Focus groups were conducted using a semistructured script including six topics relating to the experience of critical illness that facilitated deduction and the sorting of data by thematic analysis into five predominant themes. The five main themes that emerged from the data were: (1) personalised stories of the critical illness; (2) communication and shared decision making, (3) adjustment to life after critical illness, (4) trust towards clinical team and relevance of cultural beliefs and (5) end-of-life decision making. Across themes, we observed a misalignment between the medical system and patient and family values and priorities. CONCLUSIONS: The experience of critical illness of a diverse group of patients and families can remain vivid for years after ICU discharge. The identified themes reflect the strength of memory of such pivotal experiences and the importance of a narrative around those experiences. Clinicians need to be aware of the lasting effects of critical illness has on patients and families.

Hispanic Community-Engaged Research: Community Partners as Our Teachers to Improve Diabetes Self-Management.

INTRODUCTION: Community-based participatory research (CBPR) is a strategy often employed to address public health priorities. We explored how to build effective, trusting relationships with key community stakeholders and a group of Hispanic/Latinos with type 2 diabetes (T2D) to develop culturally appropriate projects. METHOD: In the process of implementing a Patient-Centered Outcome Research Initiative (PCORI) award, our Community Advisory Board (CAB) met monthly to develop a set of comparative effectiveness research questions along with the interventions to develop specific strategies to improve Hispanic/Latino individuals' self-management of T2D. An agenda was prepared for each meeting targeting the PCORI grant timeline. Notes were taken during these meetings and analyzed to determine effective strategies. RESULTS: Ten strategies were identified that led to the success of this CBPR project and to the current sustainability phase. Instrumental to our success was our partnership with a community health worker (CHW) who co-lead this research project. The CHW and CAB individualized general CBPR strategies to make this project successful in their community. CONCLUSION: Our community partners became influential knowledge holders throughout this research process. They improved researchers' understanding of how to address the needs of Hispanic/Latino individuals with T2D and how community members could become leaders within their community.