Living with fibromyalgia: Scoping review of patients' lived experience.

Engaging people with lived experience (PWLE) and family members (/F) in mental health and/or substance use health research is an increasingly common practice and has many benefits. However, challenges are also encountered; these challenges include the experience of unequal power dynamics on research teams. This pragmatic qualitative descriptive study aimed to understand the experience of power dynamics in mental health/substance use health research engagement contexts, using an engagement framework. Four focus group discussions were conducted with 18 PWLE/F aged 19-79 who had experience engaging in mental health and/or substance use research. A co-designed semi-structured interview guide was used. Discussions were audio recorded, transcribed, analysed using codebook thematic analysis and discussed with a Lived Experience Working Group. Three primary themes were generated from the data: (1) Leadership, knowledge and expertise generate power. (2) Power dynamics should be acknowledged and balanced to improve research quality. (3) Power can be shared through authentic engagement practices. While knowledge and expertise generate power, researchers are not the only ones to hold knowledge and expertise, which necessitates the sharing of power. The mitigating strategies to help research teams address power are consistent with recommendations for conducting authentic engagement as a whole. Following best practices for PWLE engagement can help balance power dynamics on engaged research teams. All aspects of this study were guided by a Lived Experience Working Group, from the identification of the research question to the interpretation and reporting of the results. People with lived experience and family members are co-authors on this manuscript.

Partnering with people with lived experience of the mental health or substance use spectrum and caregivers is a growing priority in research. There is an emerging meta-research literature on the science of engagement, but this has not been synthesised. This scoping review synthesises the meta-research on the science of lived experience and caregiver engagement in mental health and substance use health research. We conducted systematic searches in PsycInfo (Ovid), MEDLINE (Ovid), CINAHL (EBSCO), and Web of Science. Articles were eligible if they presented original meta-research on lived experience/caregiver engagement in mental health and substance use health research in the past 10 years. Titles and abstracts, then full texts, were reviewed by two independent reviewers. Data were extracted into a spreadsheet and synthesised qualitatively. Fifty-seven articles were included. The meta-research has aimed to understand experiences or needs in engagement contexts, describe or evaluate engagement groups, or develop or evaluate tools and resources to support engagement. The literature reports on positive experiences and challenges, describes approaches and new tools, and highlights opportunities for increased engagement. Papers point to the importance of improving engagement processes, structural supports and logistics. A growing body of meta-research on the science of lived experience and caregiver engagement in mental health and substance use health research remains largely descriptive in nature, rather than analytical. Research teams are encouraged to seek solutions to identified challenges and key areas of development in engagement processes, structural supports and logistics. Addressing these aspects will further advance the meta-research evidence base. This review was conducted together with people with lived experience, including co-authorship.

A Dialectic View of Late-life.

"I hope the staff read my mother's story and appreciate the life she lived" what families want ICU healthcare professionals to know about their loved one's.

Family carers of people with dementia face particularly stressful and time-intensive care situations, yet their involvement in research is vital to understanding and addressing their specific needs. To inform involvement approaches, it is important to understand activities, roles, barriers and enablers associated with involving this group. This scoping review aimed to identify, map and summarise evidence on the involvement of family carers in dementia care research. We conducted a scoping review following JBI methodological guidance. Empirical studies involving family carers of people with dementia who actively contributed to research processes were included irrespective of study design. We systematically searched MEDLINE, CINAHL, Scopus and PsycInfo, complemented by backward citation searching, searches of relevant evidence syntheses and an expert survey. Two researchers independently screened a randomly selected 20% of titles/abstracts and full texts. Data items were organised into six categories and guided the charting process. Findings were synthesised descriptively and narratively. Consultation with four family carers was carried out to contextualise and enrich the results. Forty-eight studies published between 2002 and 2026 met inclusion criteria, most using qualitative designs. Research contexts included development of social or digital interventions, Patient and Public Involvement, implementation, exploration, evaluation and adaptation. Forty-five studies reported involvement during the execution phase, six in the preparatory and nine in the translational phase. In 35 studies, family carers acted as co-thinkers, in 10 as partners and in 1 as decision-makers. Seven studies reported barriers and enablers, while 17 reported impacts of involvement on carers and on the respective projects. Dementia care research involving family carers as co-researchers shows heterogeneous and often limited methodological reporting. Meaningful involvement may benefit from careful considerations of roles, potential barriers and enablers and expected impacts. More research is needed on strategies that enable meaningful involvement and on formalised methods for recording and reporting impact. The impetus for this scoping review came from a group of family carers of people with dementia who had worked with us in a previous project and shared with us their lived experiences and difficulties. In collaboration with them, we raised the questions that are described in the scoping review. During the scoping review, family carers were also asked to give their views on the findings and share their thoughts.

An exploration of undergraduate nursing students' heavy use of generative artificial intelligence in academic practice: A descriptive phenomenological study.

Meaningfully engaging with persons with lived experience in mental health research in India: challenges and recommendations.

There has been an increase in interest in the health and well-being benefits of lifestyle factors such as physical activity, diet, sleep, and social interaction. Previous research has highlighted how lifestyle factors, both healthy and unhealthy, tend to covary or cluster together. Very little research has examined the degree to which the clustering among lifestyle factors and emotional health is unique to individuals. As such, this project examined the idiographic associations among lifestyle behaviors and emotional experiences in daily life, which could set the stage for individualized lifestyle interventions. Seventy-nine adults (Mage = 43.37, SDage = 17.26) in the United States participated in a 70-day daily diary study, where they reported on daily lifestyle engagement and affect each evening. Network models examined the associations among these variables at the between-person level and within-person level. Further, person-specific idiographic network models were analyzed. Results indicate that there were significant associations in the whole sample at multiple levels (between-person and within-person). Further, idiographic analyses revealed person-specific connections among lifestyle factors and affect. In conclusion, lifestyle factors and affect cluster together in daily life, and the clustering differs across individuals. Future research should explore the feasibility of intensive measurement-informed lifestyle interventions.

Turning hardship into wisdom: Rwandan youth responses to childhood experiences of intimate partner violence.

Unconscious behavioral patterns in nursing student professional transitioning: A systems psychodynamic perspective.

Navigating intersectional stigma and post-traumatic growth among heterosexually married men who have sex with men living with HIV in China.

Listening to your body or yielding to societal expectations? An exploration of women's lived experience of being physically active during pregnancy.

Interventions aimed at reducing restrictive practices are also designed to enhance the service experience in acute mental health units. However, people with experience of coercive engagement with these services are seldom involved as active contributors in evaluative research on interventions to reduce restrictive practices. With the meaningful involvement of lived experience practitioners, this research was aimed at examining care recipients' service experiences and perspectives on nurses' therapeutic responses during the implementation of a de-escalation intervention in three adult inpatient units within New South Wales, Australia, from March 2024 to April 2025. Nested within a larger study employing a mixed concurrent control design, this research evaluated the effectiveness and process of the Safe Steps for De-escalation through comparisons of unmatched measures of empowerment, dehumanisation, and staff actions on violence prevention across three time points, as well as through a reflective thematic analysis of semi-structured interviews. Safe Steps is a structured approach for therapeutic responding, targeting nurses' relationship-promotion behaviours to increase focus on minimising the use of restrictive practices. Eighty-six inpatients completed the unmatched measures, with nine participating in interviews following discharge. No significant changes were noted in quantitative measures over time. Five themes emerged from the qualitative analysis: (i) Clarity calms; confusion harms, (ii) Control cuts deep, (iii) Systems strain; people break, (iv) Connection is treatment in itself, and (v) Meaning-making outweighs medicine. These findings cast acute inpatient units in a light akin to a power circuit, elevating the need to make inpatient admissions more reflective of everyday life outside the units.

“Neither saints nor sinners” – The lived experiences of critical tourism scholars

Adolescents' and parents' perspectives on attrition from pediatric obesity therapeutic patient education programs: A qualitative study.

"They don't care": The implications of systemic racism on Black women's help-seeking during the COVID-19 pandemic.

Patterns of adverse and positive childhood experiences on prenatal mental health outcomes in Chinese pregnant women: A latent class analysis.

Enhancing bias awareness through co-designed simulation-based education: A qualitative study.

Exploring the breadth of personal strengths used to overcome pain: A qualitative study of people living well with pain and people recovered from pain.