Understanding what affects psychological morbidity in informal carers when providing care at home for patients at the end of life: a systematic qualitative evidence synthesis.

Background: Informal carers are central in supporting patients at the end of life, but this has substantial negative impacts on carers' own mental health. When carers are unable to cope, this may affect their ability to support the patient and increase the likelihood of patient hospital admissions. Further, demographic changes mean demands for care at and before end of life are increasing and existing services will struggle to meet these demands. It is important to recognise carers as a vital resource and prevent adverse health outcomes from caregiving (and thereby limit their consequences). Large individual variation in the level of psychological morbidity from end-of-life caregiving suggests there is scope for interventions to improve carer mental health if we can understand the underlying factors. Objectives: This meta-synthesis of qualitative studies aims to identify factors reported by carers as important to their mental health. Data sources: Searches of MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Social Science Citation Index, EMBASE, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, and Cochrane Qualitative Reviews 1 January 2009 to 24 November 2019 for empirical publications from Organization for Economic Cooperation and Development countries in English/Scandinavian on factors affecting adult carer mental health during end-of-life caregiving in home settings. Review methods: Systematic qualitative meta-synthesis in collaboration with a Public Patient Involvement carer Review Advisory Panel, included thematic synthesis, followed by a best-fit framework synthesis, informed by principles of meta-ethnography. Critical Appraisal Skills Programme Qualitative Studies Checklist was used. Results: Thirty-three eligible studies identified six themes encompassing factors perceived by carers to affect their mental health during end-of-life caregiving. These were: (1) the patient condition (including patient decline); (2) impact of caring responsibilities (including exhaustion, lack of time for own needs, isolation); (3) relationships (including quality of the patient-carer relationship); (4) finances (including financial concerns, impact on work); (5) carers' internal processes (including loss of autonomy, lack of confidence, coping strategies); and (6) support (including lack of informal support, inadequacies in formal support information and care provision, limited collaboration, disjointed care). Reported strategies to improve mental health were linked to the final two themes, with suggestions on how to manage carers' internal processes and build appropriate support. Findings correspond with literature 1998-2008, indicating consistency in factors affecting carers and adding validity to findings. Limitations: The review was limited to caregiving in the home setting and studies from Organization for Economic Cooperation and Development countries published in English and Scandinavian. Identified papers predominantly considered carers of people with cancer, with little research into ethnic-minority perspectives. The review may therefore not fully encompass factors affecting carers of people with longer-term conditions, or those within other care settings, countries and population groups. Conclusions and future work: A wide range of both internal and contextual factors may lead to psychological morbidity when caring for someone at the end of life. Future work within practice therefore requires a broad-based rather than narrow approach to sustaining and improving carer mental health. Future work within research requires collaboration between researchers and stakeholders within policy, commissioning, practice and carer organisations to develop solutions and assess their effectiveness. Further, researchers need to develop better models for factors affecting carer mental health and their interaction, to build a stronger evidence base and better guide interventions. Study registration: This study is registered as PROSPERO CRD42019130279. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number HSDR 18/01/01 and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Being a carer for a family member or friend at the end of their life can have an impact on the carer's mental health. This includes depression, anxiety, stress and feeling overwhelmed. If carers feel unable to cope, they may be less able to look after their relative or friend. The mental health of carers must be a priority to help them feel better, cope, and support patients. This review summarises information from research into things that carers say are important for their mental health, to help us understand how we may be able to maintain or improve carers' mental health. We worked with six carers in a Review Advisory Panel to search for studies on carers' experience published between 1 January 2009 and 24 November 2019 and identify common themes from identified studies. Themes were put into a table of themes and subthemes, assessed by the carers, and compared with other literature to identify factors that caused carers to have poor mental health, and ways to help carers feel better. We found six themes that indicate how caring for those at the end of life can affect mental health. These include: the impact of the patient condition and seeing the patient decline; the impact of caring responsibilities; carers' relationship with the patient; finances; carers' feelings and experiences such as lack of control or confidence when caring; and support from other family, friends and health-care professionals. Strategies to improve mental health were linked to the final two themes, including how to manage carers' views and experiences of their situation and how to gain appropriate support. This study describes factors that lead to poor mental health and ways to improve mental health when caring for someone at the end of life. Further work is needed to use this information to inform policy and service delivery.

Involving carer advisors in evidence synthesis to improve carers' mental health during end-of-life home care: co-production during COVID-19 remote working.

Background: Family carers play a central role in supporting people at the end of life, but often suffer detrimental impacts on their own mental health as a result. This project conducted evidence synthesis of research into factors that may affect carers' mental health to help identify ways of maintaining their mental health. It worked closely with a carer Review Advisory Panel to help ensure the findings made sense and were communicated meaningfully from the carers' perspective. Aim: To present: (1) principles and components that facilitated successful patient and public involvement in an evidence synthesis project to help inform patient and public involvement in similar projects; (2) recommendations for carer support that were instigated and produced by the Review Advisory Panel. Process and principles: Nine Review Advisory Panel meetings including four to five carers, a lay Chair and three researchers were held. Solid 'groundwork' was invested in recruitment and relationship-building prior to meetings, and it was ensured that there was agreement of how to work together and clarification of expectations at the first meeting. Key meeting principles were: having a majority of carers, and a Chair with both carer and patient and public involvement experience, to ensure carer voices remained at the fore substantial researcher representation, including the project lead, to highlight the value placed on Review Advisory Panel meetings flexibility to follow carers' agendas, enabling 'space to talk' and 'space to change' appropriate and prompt carer payment, again emphasising patient and public involvement value to the project. Added general principles were: ongoing training, ample funded time for Review Advisory Panel preparation and ongoing communication outside meetings. COVID moved all meetings online after the first meeting, but the principles were maintained. Outputs: The project saw an evolution from patient and public involvement consultation to co-production. The main patient and public involvement output was recommendations for supporting carers based on project findings, instigated and produced by the Review Advisory Panel. Reflection on successful components and challenges: Five carers (including the Chair) and six researchers responded to questions by e-mail. Analysis by one researcher, aided by two other researchers, was then reviewed by all participants and revised. Both carers and researchers felt the components that made the patient and public involvement work were: (1) a shared sense of purpose of and gains from the Review Advisory Panel; (2) personal gains; (3) mutual commitment and respect; and (4) bridging between academic and lay perspectives, through investment in training, ensuring carers were able to meaningfully comment, and continuous negotiation and compromise. Challenges were that the COVID-induced move from face-to-face to online meetings reduced informality, flexibility, personal connection and non-verbal communication. However, earlier groundwork facilitated group resilience to these challenges. Patient and public involvement representation on the wider Research Management Group proved less successful, flagging the importance of negotiating and defining patient and public involvement roles at all project levels. Conclusion: The patient and public involvement principles employed, including meeting composition and chairing, and flexibility to follow carers' agendas, appeared to facilitate the evolution from consultation to co-production of carer recommendations, but require further testing. Preconditions for successful remote working should be further investigated, as the different advantages of face-to-face and virtual meetings may be combined through hybrid working. The iterative and responsive working required for genuine co-production may require more flexible patient and public involvement funding models. Study registration: This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (grant 18/01/01) and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Family carers are crucial in supporting people nearing the end of life, but their own mental health may often suffer as a consequence. This project summarised what is known about what makes carers' mental health better or worse. Researchers worked with a carer Review Advisory Panel to ensure that project findings were understandable and useful to carers. To report key findings on what made the teamwork between researchers and carers successful; to help improve teamwork in other projects; and to present carers' own recommendations on how to improve their mental health. Nine Review Advisory Panel meetings were held which included four to five carers, a lay Chair and three researchers. Important early preparation included getting to know each other and agreeing how to work together. Key meeting principles were: (1) bringing carer voices to the fore by having a majority of carers and an experienced carer as Chair; (2) highlighting the value placed on meetings by having several researchers attend, including the project lead; (3) flexibility to include carers' own agenda and project changes; and (4) appropriate and prompt carer payment. Meetings had to adapt to online working due to COVID-19. Carers moved from being advisors to taking more initiative and producing their own carer recommendations, which became a main project output. Written reflections by carers and researchers indicated that successful teamwork arose from a shared sense of purpose and gains, mutual commitment and respect, and bridging between researcher and carer perspectives through training, communication, negotiation and compromise. Early preparation helped the group adapt to the challenges of online working. Carer representation on other project committees could have been improved. Project principles enabled good researcher­carer teamwork and produced valuable carer recommendations, but need proper investment in time and resources. Online working can be successful, but needs good face-to-face preparation.

Young Adolescent Perceptions of School Climate and Self-Efficacy: The Intersectionality of Race and Gender.

The researchers investigated adolescent perceptions of school climate and academic self-efficacy over time for a group of Grade 7 through Grade 9 students. We followed 717 students in an ethnically diverse school district in a small town in northern Ohio from fall 2009 to spring 2011. Four waves of data collected in surveys each fall and spring included measures of perceptions of school climate and academic self-efficacy. Compared to the original cohort of middle school students, the Grade 9 cohort demonstrated the most consistent school climate scores over time, but the Grade 7 students demonstrated the greatest change over two years. White girls exhibited the most consistent level of self-efficacy over time, but ethnically minoritized girls demonstrated the lowest level of self-efficacy (most often) when compared to White girls or ethnically minoritized boys. Results illustrate the importance of intersectional analyses of adolescents' perceptions of their schools and of themselves so as not to make assumptions about all students within certain gender or ethnic/racial identities.

Self-Perceptions of Attractiveness and Offending During Adolescence.

Despite a well-established body of research demonstrating that others' evaluations of a person's physical attractiveness carry significant meaning, researchers have largely ignored how self-perceptions of physical attractiveness relate to offending behaviors. Applying general strain theory and using eight waves of panel data from the Adolescent Academic Context Study, we explore how self-perceptions of attractiveness relate to offending as youth progress through school. Results demonstrate that youth who perceive themselves as more attractive engage in more-not less-offending. Depression, which is treated as a form of negative affect, does not appear to mediate this relationship. We conclude by raising attention to the possibility that being "good-looking" may actually be a key risk factor for crime.

Deconstructing adolescent ethnicity: A longitudinal analysis of ethnic-racial identity development and self-categorization.

BACKGROUND: The study of adolescent perceptions of their ethnicity/race has been investigated from an ethnic-racial identity (measurement) perspective or through an ethnic-racial classification lens. AIMS: This study examines both, as it explores change in adolescents' ethnic-racial self-categorization; change in strength of ethnic-racial identity (ERI); and the relationship between change in self-categorization and strength of ERI. In so doing, it contributes to theorizing about the content and process of ERI formation. MATERIALS AND METHODS: The longitudinal and mixed-methods study followed 732 middle and high school students biannually in a semi-rural, ethnically diverse school district. All students completed the Multigroup Ethnic Identity Measure (MEIM) in fall and spring each year and interviewed annually for qualitative inquiry. RESULTS: The four waves of data demonstrated that: (1) 22% of students changed their ethnic-racial classification at least once; (2) Multiracial youth, boys, and 8th graders were significantly more likely to change self-classification compared to White youth, girls, and 10 th graders; (3) strength of ERI did not change over time, however, African American and Hispanic youth had the strongest ERI over time compared to the others; (4) change in self-classification was significantly related to change in strength of ERI, however, its direction varied by race of students. DISCUSSION: While adolescent ethnic-racial identity development (ERI) appears to be related to ethnic-racial categorization, the direction of the relationship varies depending on ethnic self-categorization. CONCLUSION: Results contribute to theory building of ERI in relation to: content and process, group consciousness, certainty and clarity, and public regard.

Family and school influences on adolescents' adjustment: The moderating role of youth hopefulness and aspirations for the future.

Using a school-based sample of 675 adolescents, this short-term longitudinal investigation examined the relationships among individual, family, and school influences on adolescent adjustment problems. Adolescents' perceptions of school climate and their sense of connectedness to school were negatively associated with conduct problems. A significant interaction between parental academic support and adolescents' academic aspirations was detected for the total sample, boys, and White youth, indicating that parental support serves a protective function against conduct problems for students with low academic expectations. Adolescents' hopefulness, parental academic aspirations, and school connectedness were negatively associated with depression. Adolescents' hopefulness and their academic aspirations moderated associations between both family and school influences on adolescent adjustment with youth gender and race qualifying these interaction effects.

Adolescents' Stage-Environment Fit in Middle and High School: The Relationship Between Students' Perceptions of Their Schools and Themselves.

This mixed-methods longitudinal project investigates the association between student perceptions of their schools and themselves. Findings from the first two waves of data analysis with 894 middle and high school students in a midsized Great Lakes city reveal similarities and differences between the grade levels (7th-10th) and their perceptions of their schools. Although 7th-grade students enter middle school with the most positive feelings about their schools, they lose this feeling of euphoria by the end of their academic year. In contrast, the 10th-grade females are the most positive of all students, recognizing school characteristics which assist with their self-efficacy. Results from quantitative analyses indicate that student attitudes toward school and a sense of school connectedness are linked to both self-esteem and academic self-efficacy.

Ethnic Identity, Gender, and Adolescent Attitude toward School: Adaptive Perspectives in Diverse Settings.

The relationships between adolescent ethnic identity and attitudes toward school and school climate are investigated in a small, multiracial/multiethnic city in the Great Lakes region with ethnically diverse adolescents taught by primarily White teachers. The mixed methods investigation of 986 eighth through eleventh grade students during the 2010-2011 academic year suggests that the relationship between ethnic identity and attitude toward school is a complex interaction among individual characteristics of ethnicity/race, ethnic identity, gender, and ecological context. Quantitative results reveal that White female and Hispanic and African American male students exhibit strong ethnic identity that correlates positively with school attitude; however, qualitative results indicate very different paths in getting to those outcomes. Hispanic students appear to benefit from a strong ethnic identity that assists with positive relationships at school, while African American male students utilize parental cultural socialization as a protective function in school. The results emphasize the implications of positive school climates for all students.

Self-esteem and academic achievement: a comparative study of adolescent students in England and the United States.

Utilizing mixed methodology, this paper investigates the relationship between self-esteem and academic achievement for young adolescents within two Western cultural contexts: the United States and England. Quantitative and qualitative data from 86 North American and 86 British adolescents were utilized to examine the links between self-esteem and academic achievement from the beginning to the end of their academic year during their 11th-12th year of age. For both samples, quantitative results demonstrated that fall self-esteem was related to multiple indicators of later year academic achievement. While country differences emerge by the end of the year, math appears to have a consistent relationship with self-esteem in both country contexts. Qualitative analyses found some support for British students' self-perceptions as more accurately reflecting their academic experience than the students from the United States.

Characterization of psu dic(6;5)(p21.3;q13) with reverse chromosome painting in a patient with secondary myelodysplastic syndrome following treatment for multiple myeloma.

We report a case of a psu dic(6;5)(p21.3;q13) in a patient with secondary myelodysplastic syndrome (sMDS) following treatment for multiple myeloma. The abnormal chromosome was isolated by flow karyotyping and initially identified by reverse chromosome painting. The findings were then confirmed by forward painting. The value of flow karyotyping as a diagnostic technique in hematologic malignancies is discussed.

"You learn and learn and learn.... and then you are an adult": parental perceptions of adolescence in contemporary Swaziland.

The developmental period of adolescence is explored in Swaziland from a multidisciplinary perspective. The study compares early anthropological research with contemporary interviews of Swazi parents. While the Swazi language, siSwati, does not have a term for "adolescent," there is evidence of a definite developmental period which could be defined as adolescence. Parents view this period as being qualitatively different from childhood and adulthood, but they also have gender-related interpretations of its nature and length. While biological maturation (especially menarche for females) is viewed as a vital step in becoming an adult, behaviors must be learned during this time (i.e., "adolescence") before one is completely of adult status.