Exploring the Inclusion of Person-Centered Care Domains in Stroke Transitions of Care Interventions: A Scientific Statement From the American Heart Association.

BACKGROUND: Health care teams along the stroke recovery continuum have a responsibility to support care transitions and return to the community. Ideally, individualized care will consider patient and family preferences, best available evidence, and health care professional input. Person-centered care can improve patient-practitioner interactions through shared decision-making in which health professionals and institutions are sensitive to those for whom they provide care. However, it is unclear how the concepts of person-centered care have been described in reports of stroke transitional care interventions. METHODS: A secondary analysis of a systematic review and meta-analysis was undertaken. We retrieved all included articles (n=17) and evaluated the extent to which each intervention explicitly addressed 7 domains of person-centered care: alignment of care with patients' values, preferences, and needs; coordination of care; information and education; physical comfort; emotional support; family and friend involvement; and smooth transition and continuity of care. RESULTS: Most of the articles included some aspects of person-centeredness; we found that certain domains were not addressed in the descriptions of transitional care interventions, and no articles mentioned all 7 domains of person-centered care. We identified 3 implications for practice and research: (1) delineating person-centered care components when reporting interventions, (2) elucidating social and cultural factors relevant to the study sample and intervention, and (3) clearly describing the role of family and nonmedical support in the intervention. CONCLUSIONS: There is still room for greater consistency in the reporting of person-centeredness in stroke transitions of care interventions, despite a long-standing definition and conceptualization of person-centered care in academic and clinically focused literature.

Effectiveness of integrated person-centered interventions for older people's care: Review of Swedish experiences and experts' perspective.

Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field.

Development and perception of surgery-specific goals of care discussions in the preoperative setting: A learning pilot.

BACKGROUND: Goals of care discussions are infrequently documented in the preoperative period. Furthermore, documentation does not consistently address what matters most to patients, although patient values (PV) are central to person-centered care. METHODS: A multidisciplinary working group was formed. An electronic note comprised of (1) topics of discussion, (2) PV, and (3) advance care planning (ACP), was created and embedded into existing note templates for Gynecologic Surgical Oncology. Surgeons and advanced practice providers (APPs) were educated to conduct and document these conversations in preoperative clinic for patients undergoing cancer surgery for a pilot period. Data were collected regarding usage of the template. Focus groups with surgeons, APPs, and patients were conducted. Qualitative analysis was performed on transcripts. RESULTS: During the pilot, 7 surgeon/APP teams utilized the template on a total of 55 notes. Average number of notes completed per surgeon was 7.8 (SD 8.5). Forty-six notes (84%) included topics of discussion, 15 (27%) included PV, 4 (7%) included ACP. Qualitative analysis of focus group transcripts revealed that clinicians and patients perceived the initiative to be useful and important, although implementation barriers were identified. CONCLUSION: Creating a surgery-specific GOC template is feasible. Iterative revisions are needed to increase utility in clinic workflows.

Influence of Participant Perceptions of Adherence-Related Interactions with Study/Study Team on Drug Levels: HPTN069 Analysis of Self-Reported Adherence Experiences While on Study.

Adherence to HIV pre-exposure prophylaxis (PrEP) study drug is critical for safety, tolerability, and efficacy trials, and may be affected by how adherence is communicated by the study staff to trial participants. Increasingly, clinical trials investigating PrEP are creating and implementing 'participant-centered' approaches that discuss potential non-adherence neutrally (without negative judgement) and support efforts to adhere versus insisting on perfect adherence. In the HPTN069/ACTG A5305 study, we evaluated participant experiences of potentially negative adherence-related interactions with study teams using ten items to characterize the frequency of such experiences. We related these individual items and a combined set of seven negative experience items (total negative experience score) to drug concentrations (detectable or consistent with daily-dosing). The exploratory analyses used logistic regression for each experience item on the full sample and disaggregated by sex. Several experiences were related to drug detection and to daily-dosing, although more so for participants identifying as men than women. Total negative experience scores associated with not having detection drug concentrations for the full sample, and remained significant even when controlling for sex, age, and race. Daily dosing was associated with total negative experience score for men in the sample. Additional investigations into adherence-related interactions with study teams that are most problematic or helpful in general and uniquely for men and women are warranted.

Context-dependent approach and avoidance behavioral profiles as predictors of psychopathology.

Inhibition (a temperamental profile characterized by elevated levels of avoidance behaviors) is associated with increased likelihood for developing anxiety and depression, whereas exuberance (a temperamental profile characterized by elevated levels of approach behaviors) is associated with increased likelihood for developing externalizing conditions (e.g., attention deficit/hyperactivity disorder and conduct disorder). However, not all children who exhibit high levels of approach or avoidance behaviors develop emotional or behavioral problems. In this preregistered study, we assessed context-dependent profiles of approach and avoidance behaviors in 3-year-old children (N = 366). Using latent profile analysis, four groups were identified: nonsocial approachers, social approachers, social avoiders, and nonsocial avoiders. Analyses revealed that there were minimal differences in internalizing and externalizing symptoms across the four context-dependent groups. However, exploratory analyses assessed whether high levels of approach or avoidance combined across contexts, similar to findings reported in prior work, were related to psychopathology. Children identified as high in avoidance behavior at 3 years of age were more likely to show internalizing symptoms at 3 years of age but not at 5 years of age. Children high in approach were more likely to meet criteria for anxiety and externalizing disorders by age 5 years. These findings further our understanding of individual differences in how young children adjust their behavior based on contextual cues and may inform methods for identifying children at increased likelihood for the development of emotional and behavioral problems. RESEARCH HIGHLIGHTS: Context-dependent approach and avoidance profiles were identified in 3-year-old children using a person-centered approach. Children who were high in approach behavior, regardless of context, at age three had a higher likelihood for developing an anxiety or externalizing disorder by age five. These findings may help identify children at increased risk of developing emotional and behavioral problems.

Assessment of relevance and actual implementation of person-centeredness in healthcare and social support services for women with unintended pregnancy in Germany (CarePreg): results of expert workshops.

INTRODUCTION: Person-centeredness is a key principle in the German healthcare system. However, access to high-quality care for women with unintended pregnancy is limited due to social stigma and legal restrictions. There is little research on the adoption of person-centeredness in care for women with unintended pregnancy. The aim of this study was to analyze relevance and actual implementation of dimensions of person-centeredness in psycho-social and medical abortion care from the view of abortion care providers. METHODS: Counselors and gynecologist working in psycho-social or medical abortion care participated in one of two digital workshops. Discussions were semi-structured based on the 16 dimensions of an integrative model of person-centeredness, audio-recorded and transcribed verbatim. During qualitative content analysis, deductive categories based on the integrative model of person-centeredness were applied and inductive categories were developed. Additionally, participants rated relevance and actual implementation of the dimensions in an online survey. RESULTS: The 18 workshop participants most intensively discussed the dimensions "access to care", "person-centered characteristics of healthcare providers" and "personally tailored information". Four additional categories on a macro level ("stigmatization of women with unintended pregnancy", "stigmatization of healthcare providers", "political and legal aspects" and "corona pandemic") were identified. Most dimensions were rated as highly relevant but implementation status was described as rather low. CONCLUSIONS: In Germany, high quality person-centered care for women with unintended pregnancy is insufficiently implemented through limited access to information, a lack of abortion care providers, and stigmatization. There is a need for changes in health care structures to enable nationwide person-centered care for women with unintended pregnancy. Those changes include a more easy access to evidence-based information and person-centered abortion care, more education on abortion care for healthcare providers, integration of topics of abortion care in medical schools and promotion of de-stigmatizing actions to enable abortions as part of the general healthcare.

Experiences of breastfeeding peer counseling among women with low incomes in the US: a qualitative evaluation.

BACKGROUND: Person-centered breastfeeding counseling is a key but often overlooked aspect of high-quality services. We explored women's experiences of the Breastfeeding Heritage and Pride™ program, an evidence-based breastfeeding peer counseling program serving women with low incomes in the United States. METHODS: This study was conducted through an equitable community-clinical-academic partnership and guided by the World Health Organization (WHO) quality of care framework for maternal and newborn health, which highlights three domains of positive experiences of care: effective communication; respect and dignity; and emotional support. In-depth interviews were conducted with a purposive sample of women participating in the Breastfeeding Heritage and Pride™ program. Women were asked to describe their experiences with the program including examples of when good quality counseling was or was not provided. Each interview was conducted in English or Spanish, audio-recorded, and transcribed verbatim. Data were analyzed using reflexive thematic analysis. Once themes were generated, they were organized according to the three care experience domains in the WHO quality of care framework. RESULTS: Twenty-eight in-depth interviews were conducted with a racially/ethnically and socio-economically diverse sample of women. Three themes described effective communication practices of peer counselors: tailoring communication to meet women's individual needs; offering comprehensive and honest information about infant feeding; and being timely, proactive, and responsive in all communications across the maternity care continuum. Two themes captured why women felt respected. First, peer counselors were respectful in their interactions with women; they were courteous, patient, and non-judgmental and respected women's infant feeding decisions. Second, peer counselors showed genuine interest in the well-being of women and their families, beyond breastfeeding. The key theme related to emotional support explored ways in which peer counselors offered encouragement to women, namely by affirming women's efforts to breastfeed and by providing reassurance that alleviated their worries about breastfeeding. These positive experiences of counseling were appreciated by women. CONCLUSIONS: Women described having and valuing positive experiences in their interactions with peer counselors. Efforts to expand access to high-quality, person-centered breastfeeding counseling should, as part of quality assurance, include women's feedback on their experiences of these services.

Person-centered methods to advance developmental psychopathology.

Dante Cicchetti's remarkable contributions to the field of developmental psychopathology include the advancement of key principles such as the interplay of typical and atypical development, multifinality and equifinality, the dynamic processes of resilience, and the integration of multiple levels of analysis into developmental theories. In this paper we assert that person-centered data analytic methods are particularly well-suited to advancing these tenets of developmental psychopathology. We illustrate their utility with a brief novel empirical study focused on underlying patterns of childhood neuroendocrine regulation and prospective links with emerging adult functioning. Results indicate that a childhood neuroendocrine profile marked by high diurnal cortisol paired with low diurnal DHEA was uniquely associated with more adaptive functioning in emerging adulthood. We discuss these findings, and person-centered methods more broadly, within the future of developmental psychopathology.

Clients' expectations and experiences with providers of menstrual regulation: a qualitative study in Bangladesh.

BACKGROUND: Menstrual Regulation (MR) has been legal in Bangladesh since 1979 in an effort to reduce maternal mortality from unsafe abortion care. However, access to high-quality and patient-centered MR care remains a challenge. This analysis aimed to explore what clients know before going into care and the experience itself across a variety of service delivery sites where MR care is available. METHODS: We conducted 26 qualitative semi-structured interviews with MR clients who were recruited from three different service delivery sites in Dhaka, Bangladesh from January to March 2019. Interviews explored client expectations and beliefs about MR care, the experience of the care they received, and their perception of the quality of that care. We conducted a thematic content analysis using a priori and emergent codes. RESULTS: Clients overall lacked knowledge about MR care and held fears about the damage to their bodies after receiving care. Despite their fears, roughly half the clients held positive expectations about the care they would receive. Call center clients felt the most prepared by their provider about what to expect during their MR care. During counseling sessions, providers at in-facility locations reinforced the perception of risk of future fertility as a result of MR and commonly questioned clients on their need for MR services. Some even attempted to dissuade nulliparous women from getting the care. Clients received this type of questioning throughout their time at the facilities, not just from their medical providers. The majority of clients perceived their care as good and rationalized these comments from their providers as coming from a caring place. However, a handful of clients did report bad care and negative feelings about their interactions with providers and other clinical staff. CONCLUSION: Providers and clinical staff can play a key role in shaping the experience of clients accessing MR care. Training on accurate knowledge about the safety and effectiveness of MR, and the importance of client communication could help improve client knowledge and person-centered quality of MR care.

Delphi consensus study and clinical practice guideline development for functional electrical stimulation to support upright mobility in people with an upper motor neuron lesion.

PURPOSE: A Clinical Practice Guideline (CPG) is required to provide guidance on optimal service delivery for Functional Electrical Stimulation (FES) to support upright mobility in people living with mobility difficulties due to an upper motor neuron lesion, such as stroke or multiple sclerosis. A modified Delphi consensus study was used to provide expert consensus on best practice. METHODS: A Steering Group supported the recruitment of an Expert Panel, which included a range of stakeholders who participated in up to three survey rounds. In each round, panelists were asked to rate their agreement with draft statements about best practice using a 6-point Likert scale and add free text to explain their answer. Statements that achieved over 75% agree/strongly agree on the Likert scale were included in the CPG. Those that did not were revised based on free text comments and proposed in the next survey round. RESULTS: The first round included 82 statements with seven substatements. Sixty-five people (84% response rate) completed survey round 1 leading to 62 statements and four substatements being accepted. Fifty-six people responded to survey round 2, and consensus was achieved for all remaining statements. CONCLUSION: The accepted statements are included within the CPG and provide recommendations about who can benefit from FES and how they can be optimally supported through FES service provision. As such the CPG will support advocacy for, and optimal design of, FES services.

Intervention for sleep problems in nursing home residents with dementia: a cluster-randomized study.

OBJECTIVE: To reduce sleep problems in people living with dementia using a multi-component intervention. DESIGN: Cluster-randomized controlled study with two parallel groups and a follow-up of 16 weeks. SETTING: Using external concealed randomization, 24 nursing homes (NH) were allocated either to the intervention group (IG, 12 clusters, 126 participants) or the control group (12 clusters, 116 participants). PARTICIPANTS: Participants were eligible if they had dementia or severe cognitive impairment, at least two sleep problems, and residence of at least two weeks in a NH. INTERVENTION: The 16-week intervention consists of six components: (1) assessment of sleep-promoting activities and environmental factors in NHs, (2) implementation of two "sleep nurses," (3) basic education, (4) advanced education for staff, (5) workshops to develop sleep-promoting concepts, and (6) written information and education materials. The control group (CG) received standard care. MEASUREMENTS: Primary outcome was ≥ two sleep problems after 16 weeks assessed with the Sleep Disorders Inventory (SDI). RESULTS: Twenty-two clusters (IG = 10, CG = 12) with 191 participants completed the study. At baseline, 90% of people living with dementia in the IG and 93% in the CG had at least two sleep problems. After 16 weeks, rates were 59.3% (IG) vs 83.8% (CG), respectively, a difference of -24.5% (95% CI, -46.3% - -2.7%; cluster-adjusted odds ratio 0.281; 95% CI 0.087-0.909). Secondary outcomes showed a significant difference only for SDI scores after eight and 16 weeks. CONCLUSIONS: The MoNoPol-Sleep intervention reduced sleep problems of people living with dementia in NH compared to standard care.

Coping profiles of adolescent football players and association with interpersonal coping: Do emotional competence and psychological need satisfaction matter?

Using a person-centered approach, the present study aimed to investigate the coping profiles of adolescent football players involved in elite football training centers. The purposes were to (1) identify coping profiles based on the reported use of multiple coping strategies in response to competitive stress, (2) explore whether emotional competencies and psychological need satisfaction would predict coping profile membership, and (3) examine the extent to which coping profiles were differently associated with individual and team perceived stress, interpersonal coping, and subjective team performance, as well as demographic characteristics. A sample of 416 young French football players (males = 282; females = 134; Mage = 16.2; SDage = 1.2) from 12 elite football training centers participated in this study. Latent profile analysis results yielded three coping profiles allowing players to be grouped according to their preferences for a combined use of certain strategies (i.e., low copers, high disengaged copers, and high task copers). Results provided further insight into each coping profile membership by indicating the role played by intrapersonal emotional competence and psychological need satisfaction. Finally, differences between coping profiles have been shown in terms of individual perceived stress intensity, interpersonal coping approach, and gender. These findings provide a deeper understanding of adaptive coping profiles within a population of adolescent football players involved in elite training centers. Implications for developing and tailoring psychoeducational interventions for adolescent football players exhibiting a maladaptive coping profile (i.e., disengagement-oriented coping profile) are considered.

Transforming self-experienced vulnerability into professional strength: a dialogical narrative analysis of medical students' reflective writing.

Medical students' efforts to learn person-centered thinking and behavior can fall short due to the dissonance between person-centered clinical ideals and the prevailing epistemological stereotypes of medicine, where physicians' life events, relations, and emotions seem irrelevant to their professional competence. This paper explores how reflecting on personal life experiences and considering the relevance for one's future professional practice can inform first-year medical students' initial explorations of professional identities. In this narrative inquiry, we undertook a dialogical narrative analysis of 68 essays in which first-year medical students reflected on how personal experiences from before medical school may influence them as future doctors. Students wrote the texts at the end of a 6-month course involving 20 patient encounters, introduction to person-centered theory, peer group discussions, and reflective writing. The analysis targeted medical students' processes of interweaving and delineating personal and professional identities. The analysis yielded four categories. (1) How medical students told their stories of illness, suffering, and relational struggles in an interplay with context that provided them with new perspectives on their own experiences. Students formed identities with a person-centered orientation to medical work by: (2) recognizing and identifying with patients' vulnerability, (3) experiencing the healing function of sharing stories, and (4) transforming personal experiences into professional strength. Innovative approaches to medical education that encourage and support medical students to revisit, reflect on, and reinterpret their emotionally charged life experiences have the potential to shape professional identities in ways that support person-centered orientations to medical work.

Nurses' experiences of integrating the salutogenic perspective with person-centered care for older people in Swedish nursing home care: an interview-based qualitative study.

BACKGROUND: Even though there has been a cultural change within residential aged care to a more person-centered care, there remain improvements to be made for a more consistent way of working. Using a salutogenic approach along with person-centered care is a potential way to promote it. This study aimed to describe nurses' experiences of combining person-centered care with a salutogenic approach at a nursing home for older people. METHODS: Nine nurses, specially trained in salutogenesis and Sense of coherence, were individually interviewed using a semi-structured interview approach. Data was analysed through qualitative content analysis. RESULTS: The nurses experienced that the residential aged care was improved by using salutogenesis and Sense of coherence as a complement to person-centered care. Core aspects of person-centered care were thereby promoted, as the resources of the older persons were emphasized, and aged care became more holistic. In addition to improved residential aged care, the results indicate that this manner of working also contributed to enhanced work satisfaction of the care personnel themselves. CONCLUSIONS: The results suggest that a salutogenic approach facilitates the implementation of person-centered care by focusing on the older persons' resources and maintaining health. The organization needs to prioritize training staff in salutogenesis and person-centered care, as it supports working toward a common goal and benefits both the older persons and the staff.

Implementation Strategies for Quality Improvement in Palliative Care: A Scoping Review.

BACKGROUND: Quality improvement (QI) programs based on person-centred outcome measures (PCOMs) play an important role in promoting optimal palliative care. However, routine use of PCOMs has been slow and difficult to implement, including within QI programs. OBJECTIVE: This study aimed to identify implementation strategies that support the implementation of PCOMs as routine practice in hospital-based palliative care, as well as the implementation theories, models and frameworks (TMFs) guiding the design of these implementation strategies. METHODS: A scoping review was conducted in accordance with the Joanna Briggs Institute (JBI) Scoping Review framework. Four databases (Medline, CINAHL, Scopus and PubMed) were systematically searched for literature published between 1 January 1990 and 8 March 2024. RESULTS: One hundred and fifteen unique implementation strategies, identified from 11 included studies, were mapped onto the 73 Expert Recommendations for Implementing Change (ERIC) discrete implementation strategies, covering 52% of the ERIC strategies. The most commonly used categories were train and educate stakeholders, and support clinicians, followed by develop stakeholder interrelationships and use evaluation and iterative strategies. Three key themes emerged: what to do; how to do it; and who to do it with. Only four studies employed TMFs to guide the design of the implementation strategies in this review. CONCLUSIONS: To promote the implementation of PCOM-based QI programs, strategies should be developed based on identified/potential barriers and facilitators by using rigorous TMFs. The components of the implementation strategies must be reported transparently and consistently to enable replication and measurement in future research and practice. PATIENT AND PUBLIC CONTRIBUTION: This scoping review does not directly involve patients or the general public in its design or execution. However, it is part of an implementation study aimed at integrating the Palliative Care Outcome Collaboration (PCOC) model into routine clinical practice at a cancer hospital in China. Before the formal implementation, palliative care professionals from this hospital highlighted the need for a comprehensive analysis of existing evidence to support the effective adoption of the PCOC model in their specific clinical setting.

Translation and adaptation of the person-centered maternity care scale to a Persian-speaking population: a confirmatory factor analysis.

BACKGROUND: Recognized as the most exhaustive multidimensional evaluation of women's person-centered experiences during childbirth, the Person-Centered Maternity Care (PCMC) Scale offers domain-specific insights into facets of care. This instrument has yet to be translated into Persian. Hence, this study purposed to translate and ascertain the reliability and validity of a Persian version of the PCMC scale for postpartum women in Iran. METHODS: A cross-sectional study was facilitated at multiple comprehensive health centers within Tehran, Iran, from February 2022 until July 2022. Postpartum women within seven days after childbirth who were referred to selected comprehensive health centers for newborn thyroid screening were conveniently sampled. The validation process for the questionnaire utilized confirmatory factor analysis (CFA), while it gauged convergent validity via factor loads, average variance extracted (AVE), along with composite reliability (CR). Discriminant credibility was evaluated utilizing HTMT alongside the Fornell-Larcker Criteria. Data analysis procedures were conducted through IBM SPSS Statistics for Windows Version 16 and SMART PLS Statistics for Windows Version 4.0.9.9. RESULTS: All the items were within the acceptable range of factor loading, except for questions 3 of the facility and 6 of dignity, which were removed from the model. The AVE values for all the variables were above 0.50, and the CR values were above 0.78, indicating convergent validity. On the horizontal loading table, all of the indicators met the conditions. Additionally, the findings validate that the HTMT indicator associated with all constructs remained below 0.9, which confirms divergent relevance about the survey tool under consideration. The composite reliability values also indicated good overall reliability for all the constructs, ranging from 0.78 to 0.91. CONCLUSIONS: The results of the present study indicate that the Persian version of the PCMC is a reliable and valid tool for measuring person-centered maternity care in Persian-speaking populations.

The sexual and reproductive healthcare challenges when dealing with female migrants and refugees in low and middle-income countries (a qualitative evidence synthesis).

BACKGROUND: Migrants and refugees face unprecedented inequalities in accessing sexual and reproductive health (SRH) in developed and developing countries. Most attention has focused on the rich world perspective, while there are huge numbers of migrants and refugees moving towards less developed countries. This article synthesizes the barriers to proper SRH care from low and middle-income countries perspective. METHODS: We performed a systematic review of articles containing primary source qualitative and quantitative studies with thick qualitative descriptions. Articles from various databases, including PubMed, Science Direct, HINARI, and Google Scholar, published between 2012 and 2022 were included. Because the context differed, we excluded articles dealing with migrants and refugees from low- and middle-income countries living in high-income countries. To select articles, a preferred reporting item for systematic reviews and meta-analyses (PRISMA) was used. The articles' quality was assessed using the standard QASP checklist. We used a socio-ecological model to investigate barriers at various levels, and thematic analysis was used to identify the strongest themes at each level of the model. This synthesis is registered under PROSPERO number CRD42022341460. RESULTS: We selected fifteen articles from a total of 985 for the final analysis. The results show that despite the diversity of the participants' homes and countries of origin, their experiences using SRH services were quite similar. Most female migrants and refugees claimed to have encountered discrimination from service providers, and linguistic and cultural obstacles played a significant role in their experiences. In nations lacking universal healthcare coverage, the cost of care was a barrier to the use of SRH services. Other main obstacles to using SRH services were a lack of knowledge about these programs, worries about privacy, inadequate communication, stigma in the community, and gender-related power imbalances. CONCLUSION: To enhance the use of SRH by female migrants and refugees, it is vital to provide person-centered care and involve husbands, parents, in-laws, and communities in SRH coproduction. Training on cultural competency, compassion, and respect must be provided to healthcare personnel. Increasing financial access for migrant and refugee healthcare is crucial, as is meeting their basic requirements.

Exploring Patients' Perceptions About Chronic Kidney Disease and Their Treatment: A Qualitative Study.

BACKGROUND: Unhelpful illness perceptions can be changed by means of interventions and can lead to improved outcomes. However, little is known about illness perceptions in patients with chronic kidney disease (CKD) prior to kidney failure, and no tools exist in nephrology care to identify and support patients with unhelpful illness perceptions. Therefore, this study aims to: (1) identify meaningful and modifiable illness perceptions in patients with CKD prior to kidney failure; and (2) explore needs and requirements for identifying and supporting patients with unhelpful illness perceptions in nephrology care from patients' and healthcare professionals' perspectives. METHODS: Individual semi-structured interviews were conducted with purposive heterogeneous samples of Dutch patients with CKD (n = 17) and professionals (n = 10). Transcripts were analysed using a hybrid inductive and deductive approach: identified themes from the thematic analysis were hereafter organized according to Common-Sense Model of Self-Regulation principles. RESULTS: Illness perceptions considered most meaningful are related to the seriousness (illness identity, consequences, emotional response and illness concern) and manageability (illness coherence, personal control and treatment control) of CKD. Over time, patients developed more unhelpful seriousness-related illness perceptions and more helpful manageability-related illness perceptions, caused by: CKD diagnosis, disease progression, healthcare support and approaching kidney replacement therapy. Implementing tools to identify and discuss patients' illness perceptions was considered important, after which support for patients with unhelpful illness perceptions should be offered. Special attention should be paid towards structurally embedding psychosocial educational support for patients and caregivers to deal with CKD-related symptoms, consequences, emotions and concerns about the future. CONCLUSIONS: Several meaningful and modifiable illness perceptions do not change for the better by means of nephrology care. This underlines the need to identify and openly discuss illness perceptions and to support patients with unhelpful illness perceptions. Future studies should investigate whether implementing illness perception-based tools will indeed improve outcomes in CKD.

Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure.

BACKGROUND: Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility. METHODS: For evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content. RESULTS: The Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS). CONCLUSIONS: PRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.

Adolescents' voices on self-engagement in mental health treatment: a scoping review.

INTRODUCTION: According to the United Nations Convention on the Rights of the Child, adolescents' involvement in their healthcare is a fundamental right, and self-engagement in mental health treatment is vital for realizing their potential within person-centered care (PCC). Research exists that highlights barriers to involving adolescents in their care decisions. However, research on adolescents' own voices about self-engagement in mental health treatment has been scarce. This scoping review aimed to examine and summarize current knowledge on adolescents' voices regarding self-engagement in mental health treatment. METHOD: The review followed the scoping methodology of Arksey and O'Malley from 2005, updated by Levac and colleagues in 2010, involving five stages: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, and (5) collating, summarizing and reporting the results. RESULTS: Nineteen studies were included. The following themes on adolescents` voices regarding self-engagement in mental health treatment were identified: (1) the therapeutic alliance, (2) the need for active engagement in treatment, (3) different experiences due to time of data collection, (4) treatment context and healthcare system, and (5) adolescent-caregiver interaction. CONCLUSION: Adolescents' understanding of self-engagement was multilevel and comprehensive, including individual, contextual and relational factors. A strong therapeutic alliance with healthcare providers, and a need to be actively engaged in treatment were highlighted. To succeed in strengthening PCC in mental healthcare for adolescents, health professionals must take this complex understanding into consideration, as treatment without adolescents` self-engagement may worsen their clinical outcomes. Future research should explore specific PCC interventions and incorporate diverse methodologies in various clinical contexts. Additionally, insights from healthcare providers and caregivers on self-engagement in mental health treatment will complement these findings.