Pediatric advance care planning from the perspective of health care professionals: a qualitative interview study.

BACKGROUND: Pediatric advance care planning differs from the adult setting in several aspects, including patients' diagnoses, minor age, and questionable capacity to consent. So far, research has largely neglected the professionals' perspective. AIM: We aimed to investigate the attitudes and needs of health care professionals with regard to pediatric advance care planning. DESIGN: This is a qualitative interview study with experts in pediatric end-of-life care. A qualitative content analysis was performed. SETTING/PARTICIPANTS: We conducted 17 semi-structured interviews with health care professionals caring for severely ill children/adolescents, from different professions, care settings, and institutions. RESULTS: Perceived problems with pediatric advance care planning relate to professionals' discomfort and uncertainty regarding end-of-life decisions and advance directives. Conflicts may arise between physicians and non-medical care providers because both avoid taking responsibility for treatment limitations according to a minor's advance directive. Nevertheless, pediatric advance care planning is perceived as helpful by providing an action plan for everyone and ensuring that patient/parent wishes are respected. Important requirements for pediatric advance care planning were identified as follows: repeated discussions and shared decision-making with the family, a qualified facilitator who ensures continuity throughout the whole process, multi-professional conferences, as well as professional education on advance care planning. CONCLUSION: Despite a perceived need for pediatric advance care planning, several barriers to its implementation were identified. The results remain to be verified in a larger cohort of health care professionals. Future research should focus on developing and testing strategies for overcoming the existing barriers.

A measurement framework for quality health care for adolescents in hospital.

PURPOSE: Despite growing interest in measurement of health care quality and patient experience, the current evidence base largely derives from adult health settings, at least in part because of the absence of appropriately developed measurement tools for adolescents. To rectify this, we set out to develop a conceptual framework and a set of indicators to measure the quality of health care delivered to adolescents in hospital. METHODS: A conceptual framework was developed from the following four elements: (1) a review of the evidence around what young people perceive as "adolescent-friendly" health care; (2) an exploration with adolescent patients of the principles of patient-centered care; (3) a scoping review to identify core clinical practices around working with adolescents; and (4) a scoping review of existing conceptual frameworks. Using criteria for indicator development, we then developed a set of indicators that mapped to this framework. RESULTS: Embedded within the notion of patient- and family-centered care, the conceptual framework for adolescent-friendly health care (quality health care for adolescents) was based on the constructs of experience of care (positive engagement with health care) and evidence-informed care. A set of 14 indicators was developed, half of which related to adolescents' and parents' experience of care and half of which related to aspects of evidence-informed care. CONCLUSIONS: The conceptual framework and indicators of quality health care for adolescents set the stage to develop measures to populate these indicators, the next step in the agenda of improving the quality of health care delivered to adolescents in hospital settings.

Disease profiles of detainees in the Canton of Vaud in Switzerland: gender and age differences in substance abuse, mental health and chronic health conditions.

BACKGROUND: Literature on the disease profile of prisoners that differentiates by age and gender remains sparse. This study aimed to describe the health of correctional inmates in terms of substance abuse problems and mental and somatic health conditions, and compare it by gender and age. METHODS: This study examined cross-sectional data from the Canton of Vaud in Switzerland on the health conditions of detainees who were in prison on January 1, 2011 or entered prison in 2011. Health conditions validated by physician examination were reported using the International Classification of Diseases (ICD) version 10. The analyses were descriptive by groups of prisoners: the entire sample (All), Men, Older adults and Women. RESULTS: A total of 1,664 individuals were included in the analysis. Men comprised 91.5 % of the sample and had a mean age of 33 years. The other 8.5 % were women and had an average age of 39. Older adults (i.e., age 50 and older) represented 7 % of the total sample. Overall, 80 % of inmates were non-Swiss citizens, but the proportion of Swiss prisoners was higher among the older adults (51 %) and women (29 %). Overall, 41 % of inmates self-reported substance abuse problems. Of those, 27 % were being treated by psychiatrists for behavioral disorders related to substance abuse. Chronic infectious diseases were found in 9 % of the prison population. In addition, 27 % of detainees suffered from serious mental health conditions. Gender and age had an influence on the disease profile of this sample: compared to the entire prison population, the older inmates were less likely to misuse illegal drugs and to suffer from communicable infections but exhibited more problems with alcohol and a higher burden of chronic health conditions. Female prisoners were more disposed to mental health problems (including drug abuse) and infectious diseases. In terms of chronic diseases, women suffered from the same conditions as men, but the diseases were more prevalent in women. CONCLUSION: It is important to understand the different disease profiles of prisoners by gender and age, as it helps identify the needs of different groups and tailor age-and gender-specific interventions.