"It Can Be Confusing": Family Perspectives on Food Insecurity Screening in Urban Pediatric Primary Care Clinics.

Food insecurity, for which families are routinely screened at medical visits, has deleterious health consequences. This study sought to understand the lived experiences of families with lower incomes participating in food insecurity screening at two urban pediatric primary care clinics. Forty-three semi-structured interviews were performed in English and Spanish with families with public insurance after well visits where food insecurity screening was documented. Immersion-crystallization analysis was used to identify salient themes. Families reported discomfort with food insecurity screening, but nonetheless found screening acceptable when performed universally and privately. Families shared confusion about how their screening responses would be used and expected that resources would be available promptly for those who screen positive. Food insecurity screening may be improved for families through explanations of how responses will be used, allowing families to opt out, soliciting family preferences for resource referral, and offering promptly available resources for families with food insecurity.

An mHealth Intervention Promoting Physical Activity and Healthy Eating in a Family Setting (SMARTFAMILY): Randomized Controlled Trial.

BACKGROUND: Numerous smartphone apps are targeting physical activity (PA) and healthy eating (HE), but empirical evidence on their effectiveness for the initialization and maintenance of behavior change, especially in children and adolescents, is still limited. Social settings influence individual behavior; therefore, core settings such as the family need to be considered when designing mobile health (mHealth) apps. OBJECTIVE: The purpose of this study was to evaluate the effectiveness of a theory- and evidence-based mHealth intervention (called SMARTFAMILY [SF]) targeting PA and HE in a collective family-based setting. METHODS: A smartphone app based on behavior change theories and techniques was developed, implemented, and evaluated with a cluster randomized controlled trial in a collective family setting. Baseline (t0) and postintervention (t1) measurements included PA (self-reported and accelerometry) and HE measurements (self-reported fruit and vegetable intake) as primary outcomes. Secondary outcomes (self-reported) were intrinsic motivation, behavior-specific self-efficacy, and the family health climate. Between t0 and t1, families of the intervention group (IG) used the SF app individually and collaboratively for 3 consecutive weeks, whereas families in the control group (CG) received no treatment. Four weeks following t1, a follow-up assessment (t2) was completed by participants, consisting of all questionnaire items to assess the stability of the intervention effects. Multilevel analyses were implemented in R (R Foundation for Statistical Computing) to acknowledge the hierarchical structure of persons (level 1) clustered in families (level 2). RESULTS: Overall, 48 families (CG: n=22, 46%, with 68 participants and IG: n=26, 54%, with 88 participants) were recruited for the study. Two families (CG: n=1, 2%, with 4 participants and IG: n=1, 2%, with 4 participants) chose to drop out of the study owing to personal reasons before t0. Overall, no evidence for meaningful and statistically significant increases in PA and HE levels of the intervention were observed in our physically active study participants (all P>.30). CONCLUSIONS: Despite incorporating behavior change techniques rooted in family life and psychological theories, the SF intervention did not yield significant increases in PA and HE levels among the participants. The results of the study were mainly limited by the physically active participants and the large age range of children and adolescents. Enhancing intervention effectiveness may involve incorporating health literacy, just-in-time adaptive interventions, and more advanced features in future app development. Further research is needed to better understand intervention engagement and tailor mHealth interventions to individuals for enhanced effectiveness in primary prevention efforts. TRIAL REGISTRATION: German Clinical Trials Register DRKS00010415; https://drks.de/search/en/trial/DRKS00010415. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/20534.

Family Members' Engagement in Symptom Communication, Assessment, and Management in the Intensive Care Unit: A Qualitative Study.

BACKGROUND: Opportunities for communication and participation in decision making are limited for critically ill patients, but family members serving as surrogates enable empowerment of these patients. OBJECTIVE: The aim of this study was to explore family members' engagement in symptom communication in the intensive care unit. METHODS: A qualitative descriptive design using fieldwork methodology with triangulation of participant observation and individual interviews was conducted. Nine mechanically ventilated patients were observed in interaction with family members and clinicians in the intensive care unit. Six of the observed patients, 6 family members, and 9 clinicians were interviewed after participant observation. Field notes and transcripts were analyzed using Braun and Clarke's method of thematic analysis. RESULTS: Family members engaged actively in symptom communication, assessment, and management, and there were barriers and facilitators to family engagement. Three main themes and 9 subthemes describing family engagement emerged: (1) intermediary role (recognize and report symptoms, provide patient information, and assist in communication), (2) independent role (provide familiarity, manage symptoms, and promote patient communication), and (3) conditions for family engagement (intensive care unit environment, relationship with the patient, and patient preferences). DISCUSSION: Family members have unique knowledge of the patient that differs from and complement the competence of the staff, and might contribute to improved symptom communication. Future research should examine how family members can contribute to symptom communication, assessment, and management.

Mex-3 RNA binding family member A (MEX3A)/circMPP6 complex promotes colorectal cancer progression by inhibiting autophagy.

RNA-binding proteins (RBPs)-RNA networks have contributed to cancer development. Circular RNAs (circRNAs) are considered as protein recruiters; nevertheless, the patterns of circRNA-protein interactions in colorectal cancer (CRC) are still lacking. Processing bodies (PBs) formed through liquid-liquid phase separation (LLPS) are membrane-less organelles (MLOs) consisting of RBPs and RNA. Previous evidence suggests a connection between PBs dynamics and cancer progression. Despite the increasingly acknowledged crucial role of RBPs and RNA in the accumulation and maintenance of MLOs, there remains a lack of specific research on the interactions between PBs-related RBPs and circRNAs in CRC. Herein, we identify that MEX-3 RNA binding family member A (MEX3A), frequently upregulated in CRC tissues, predicts poorer patient survival. Elevated MEX3A accelerates malignance and inhibits autophagy of CRC cells. Importantly, MEX3A undergoes intrinsically disordered regions (IDRs)-dependent LLPS in the cytoplasm. Specifically, circMPP6 acts as a scaffold to facilitate the interaction between MEX3A and PBs proteins. The MEX3A/circMPP6 complex modulates PBs dynamic and promotes UPF-mediated phosphodiesterase 5A (PDE5A) mRNA degradation, consequently leading to the aggressive properties of CRC cells. Clinically, CRC patients exhibiting high MEX3A expression and low PDE5A expression have the poorest overall survival. Our findings reveal a collaboration between MEX3A and circMPP6 in the regulation of mRNA decay through triggering the PBs aggregation, which provides prognostic markers and/or therapeutic targets for CRC.

Prenatal anaemia and risk of postpartum haemorrhage: a cohort analysis of data from the Predict-PPH study.

BACKGROUND: Most previous clinical studies investigating the connection between prenatal anaemia and postpartum haemorrhage (PPH) have reported conflicting results. OBJECTIVES: We examined the association between maternal prenatal anaemia and the risk of PPH in a large cohort of healthy pregnant women in five health institutions in Lagos, Southwest Nigeria. METHODS: This was a prospective cohort analysis of data from the Predict-PPH study that was conducted between January and June 2023. The study enrolled n = 1222 healthy pregnant women giving birth in five hospitals in Lagos, Nigeria. The study outcome, WHO-defined PPH, is postpartum blood loss of at least 500 milliliters. We used a multivariable logistic regression model with a backward stepwise conditional approach to examine the association between prenatal anaemia of increasing severity and PPH while adjusting for confounding factors. RESULTS: Of the 1222 women recruited to the Predict-PPH study between January and June 2023, 1189 (97·3%) had complete outcome data. Up to 570 (46.6%) of the enrolled women had prenatal anaemia while 442 (37.2%) of those with complete follow-up data had WHO-defined PPH. After controlling for potential confounding factors, maternal prenatal anaemia was independently associated with PPH (adjusted odds ratio = 1.37, 95% confidence interval: 1.05-1.79). However, on the elimination of interaction effects of coexisting uterine fibroids and mode of delivery on this association, a sensitivity analysis yielded a lack of significant association between prenatal anaemia and PPH (adjusted odds ratio = 1.27, 95% confidence interval: 0.99-1.64). We also recorded no statistically significant difference in the median postpartum blood loss in women across the different categories of anaemia (P = 0.131). CONCLUSION: Our study revealed that prenatal anaemia was not significantly associated with PPH. These findings challenge the previously held belief of a suspected link between maternal anaemia and PPH. This unique evidence contrary to most previous studies suggests that other factors beyond prenatal anaemia may contribute more significantly to the occurrence of PPH. This highlights the importance of comprehensive assessment and consideration of various maternal health factors in predicting and preventing this life-threatening obstetric complication.

Caregiving consequences in cancer family caregivers: a narrative review of qualitative studies.

Background: Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. Method: This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. Results: The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). Conclusion: The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.

"It's a stressful, trying time for the caretaker": an interpretive description qualitative study of postoperative transitions in care for older adults with frailty from the perspectives of informal caregivers.

BACKGROUND: Older adults with frailty have surgery at a high rate. Informal caregivers often support the postoperative transition in care. Despite the growing need for family and caregiver support for this population, little is known about the experience of providing informal care to older adults with frailty during the postoperative transition in care. The purpose of this study was to explore what is important during a postoperative transition in care for older adults with frailty from the perspective of informal caregivers. METHODS: This was a qualitative study using an interpretive description methodology. Seven informal caregivers to older adults [aged ≥ 65 years with frailty (Clinical Frailty Scale score ≥ 4) who had an inpatient elective surgery] participated in a telephone-based, semi-structured interview. Audio files were transcribed and analyzed using reflexive thematic analysis. RESULTS: Four themes were constructed: (1) being informed about what to expect after surgery; (2) accessible communication with care providers; (3) homecare resources are needed for the patient; and (4) a support network for the caregivers. Theme 4 included two sub-themes: (a) respite and emotional support and (b) occupational support. CONCLUSIONS: Transitions in care present challenges for informal caregivers of older adults with frailty, who play an important role in successful transitions. Future postoperative transitional care programs should consider making targeted information, accessible communication, and support networks available for caregivers as part of facilitating successful transitions in care.

Family practice research in the African region 2020-2022.

BACKGROUND:  The African region produces a small proportion of all health research, including primary health care research. The SCOPUS database only lists the African Journal of Primary Health Care Family Medicine (PHCFM) and the South African Family Practice Journal (SAFP) in the field of family practice. AIM:  To review the nature of all original research (2020-2022) published in PHCFM and SAFP. SETTING:  African region. METHOD:  All 327 articles were included. Data were extracted into REDCap, using a standardised tool and exported to the Statistical Package for Social Sciences. RESULTS:  The median number of authors was 3 (interquartile range [IQR]: 2-4) and institutions and disciplines 1 (IQR: 1-2). Most authors were from South Africa (79.8%) and family medicine (45.3%) or public health (34.2%). Research focused on integrated health services (76.1%) and was mostly clinical (66.1%) or service delivery (37.9%). Clinical research addressed infectious diseases (23.4%), non-communicable diseases (24.6%) and maternal and women's health (19.4%). Service delivery research addressed the core functions of primary care (35.8%), particularly person-centredness and comprehensiveness. Research targeted adults and older adults (77.0%) as well as health promotion or disease prevention (38.5%) and treatment (30.9%). Almost all research was descriptive (73.7%), mostly surveys. CONCLUSION:  Future research should include community empowerment and multisectoral action. Within integrated health services, some areas need more attention, for example, children, palliative and rehabilitative care, continuity and coordination. Capacity building and support should enable larger, less-descriptive and more collaborative interdisciplinary studies with authors outside of South Africa.Contribution: The results highlight the strengths and weaknesses of family practice research in Africa.

Risk of Excess Maternal Folic Acid Supplementation in Offspring.

Folate, also known as vitamin B9, facilitates the transfer of methyl groups among molecules, which is crucial for amino acid metabolism and nucleotide synthesis. Adequate maternal folate supplementation has been widely acknowledged for its pivotal role in promoting cell proliferation and preventing neural tube defects. However, in the post-fortification era, there has been a rising concern regarding an excess maternal intake of folic acid (FA), the synthetic form of folate. In this review, we focused on recent advancements in understanding the influence of excess maternal FA intake on offspring. For human studies, we summarized findings from clinical trials investigating the effects of periconceptional FA intake on neurodevelopment and molecular-level changes in offspring. For studies using mouse models, we compiled the impact of high maternal FA supplementation on gene expression and behavioral changes in offspring. In summary, excessive maternal folate intake could potentially have adverse effects on offspring. Overall, we highlighted concerns regarding elevated maternal folate status in the population, providing a comprehensive perspective on the potential adverse effects of excessive maternal FA supplementation on offspring.

Kinesin Family Member-18A (KIF18A) Promotes Cell Proliferation and Metastasis in Hepatocellular Carcinoma.

BACKGROUND & AIMS: Kinesin family member 18A (KIF18A) is notable for its aberrant expression across various cancer types and its pivotal role is driving cancer progression. In this study, we aim to investigate the intricate molecular mechanisms underlying the impact of KIF18A on the progression of HCC. METHODS: Western blotting assays, a quantitative real-time PCR and immunohistochemical analyses were performed to quantitatively assess KIF18A expression in HCC tissues. We then performed genetic manipulations within HCC cells by silencing endogenous KIF18A using short hairpin RNA (shRNA) and introducing exogenous plasmids to overexpress KIF18A. We monitored cell progression, analyzed cell cycle and cell apoptosis and assessed cell migration and invasion both in vitro and in vivo. Moreover, we conducted RNA-sequencing to explore KIF18A-related signaling pathways utilizing Reactome and KEGG enrichment methods and validated these critical mediators in these pathways. RESULTS: Analysis of the TCGA-LIHC database revealed pronounced overexpression of KIF18A in HCC tissues, the finding was subsequently confirmed through the analysis of clinical samples obtained from HCC patients. Notably, silencing KIF18A in cells led to an obvious inhibition of cell proliferation, migration and invasion in vitro. Furthermore, in subcutaneous and orthotopic xenograft models, suppression of KIF18A sgnificantly redudce tumor weight and the number of lung metastatic nodules. Mechanistically, KIF18A appears to facilitate cell proliferation by upregulating MAD2 and CDK1/CyclinB1 expression levels, with the activation of SMAD2/3 signaling contributing to KIF18A-driven metastasis. CONCLUSION: Our study elucidates the molecular mechanism by which KIF18A mediates proliferation and metastasis in HCC cells, offering new insights into potential therapeutic targets.

Recurrent ATP1A1 variant Gly903Arg causes developmental delay, intellectual disability, and autism.

ATP1A1 encodes a sodium-potassium ATPase that has been linked to several neurological diseases. Using exome and genome sequencing, we identified the heterozygous ATP1A1 variant NM_000701.8: c.2707G>A;p.(Gly903Arg) in two unrelated children presenting with delayed motor and speech development and autism. While absent in controls, the variant occurred de novo in one proband and co-segregated in two affected half-siblings, with mosaicism in the healthy mother. Using a specific ouabain resistance assay in mutant transfected HEK cells, we found significantly reduced cell viability. Demonstrating loss of ATPase function, we conclude that this novel variant is pathogenic, expanding the phenotype spectrum of ATP1A1.

Radiation levels outside a patient undergoing177Lu-PSMA radioligand therapy.

Understanding the spatial distribution of radiation levels outside of a patient undergoing177Lu radioligand therapy is not only helpful for conducting correct tests for patient release, but also useful for estimation of its potential exposure to healthcare workers, caregivers, family members, and the general public. In this study, by mimicking the177Lu-labeled prostate-specific membrane antigen radioligand therapy for prostate cancers in an adult male, the spatial distribution of radiation levels outside of the phantom was simulated based on the Monte Carlo software of Particle and Heavy Ion Transport System, and verified by a series of measurements. Moreover, the normalized dose rates were further formulized on the three transverse planes representing the heights of pelvis, abdomen and chest. The results showed that the distributions of radiation levels were quite complex. Multi-directional and multi-height measurements are needed to ensure the external dose rate to meet the release criteria. In general, the radiation level was higher at the horizontal plane where the source was located, and the levels in front and behind of the body were higher than those of the left and right sides at the same height. The ratio of simulated dose rates to measured ones ranged from 0.82 to 1.19 within 1 m away from the body surface in all directions. Based on the established functions, the relative root mean square deviation between the calculated and simulated values were 0.21, 0.25 and 0.23 within a radius of 1 m on the pelvis, abdomen and chest transverse planes, respectively. It is expected that the results of this study would be helpful for guiding the test of extracorporeal radiation to determine the patient's release, and of benefit to estimate the radiation exposure to others.

Identification of kinesin family member (KIF22) homozygous variants in spondyloepimetaphyseal dysplasia with joint laxity, lepdodactylic type and demonstration of proteoglycan biosynthesis impairment.

Heterozygous variants in KIF22, encoding a kinesin-like protein, are responsible for spondyloepimetaphyseal dysplasia with joint laxity, leptodactilic type (lepto-SEMDJL), characterized by short stature, flat face, generalized joint laxity with multiple dislocations, and progressive scoliosis and limb deformity. By targeted gene sequencing analysis, we identified a homozygous KIF22 variant (NM_007317.3: c.146G>A, p.Arg49Gln) in 3 patients from 3 unrelated families. The clinical features appeared similar to those of patients carrying heterozygous KIF22 variant (c.443C>T or c.446G>A), although the spinal involvement appeared later and was less severe in patients with a recessive variant. Relatives harboring the c.146G>A variant at the heterozygous state were asymptomatic. The homozygous KIF22 variant c.146G>A affected a conserved residue located in the active site and potentially destabilized ATP binding. RT-PCR and western blot analyses demonstrated that both dominant and recessive KIF22 variants do not affect KIF22 mRNA and protein expression in patient fibroblasts compared to controls. As lepto-SEMDJL presents phenotypic overlap with chondrodysplasias with multiple dislocations (CMD), related to defective proteoglycan biosynthesis, we analyzed proteoglycan synthesis in patient skin fibroblasts. Compared to controls, DMMB assay showed a significant decrease of total sulfated proteoglycan content in culture medium but not in the cell layer, and immunofluorescence demonstrated a strong reduction of staining for chondroitin sulfates but not for heparan sulfates, similarly in patients with recessive or dominant KIF22 variants. These data identify a new recessive KIF22 pathogenic variant and link for the first time KIF22 pathogenic variants to altered proteoglycan biosynthesis and place the lepto-SEMDJL in the CMD spectrum.

Heterozygous variants in KIF22, encoding a kinesin-like protein, are responsible for spondyloepimetaphyseal dysplasia with joint laxity, leptodactilic type (lepto-SEMDJL), characterized by short stature, flat face, generalized joint laxity with multiple dislocations, and progressive scoliosis and limb deformity. We identified a homozygous KIF22 variant (NM_007317.3: c.146G>A, p.Arg49Gln) in 3 patients from 3 unrelated families. The clinical features appeared similar to those of patients carrying heterozygous KIF22. The homozygous KIF22 variant c.146G>A affected a conserved residue located in the active site and potentially destabilized ATP binding. As lepto-SEMDJL presents phenotypic overlap with chondrodysplasias with multiple dislocations, related to defective proteoglycan biosynthesis, we analyzed proteoglycan synthesis in patient skin fibroblasts and showed a significant decrease of total sulfated proteoglycan content in culture medium, similarly in patients with recessive or dominant KIF22 variants. These data identify a new recessive KIF22 pathogenic variant and link for the first time KIF22 pathogenic variants to altered proteoglycan biosynthesis.

[Myasthenia gravis-Gender aspects and family planning]. / Myasthenia gravis ­ Genderaspekte und Familienplanung.

BACKGROUND: There is evidence that gender-specific differences can influence the diagnostics, treatment and long-term disease course of myasthenia gravis (MG). In women the diagnosis is often made during childbearing age. OBJECTIVE: Gender-specific differences in MG and relevant aspects in routine clinical practice are presented. In addition, current studies on family planning, pregnancy and childbirth in MG are highlighted and treatment recommendations are derived. MATERIAL AND METHODS: Narrative literature review. RESULTS: In addition to sociodemographic data, gender-specific differences encompass clinical as well as paraclinical factors, such as disease severity and antibody status. With few exceptions pregnancy is possible with good maternal and neonatal outcome. During pregnancy and peripartum, children of MG patients should be closely monitored for early detection and treatment of potential syndromes caused by diaplacental transfer of maternal antibodies. CONCLUSION: Gender-specific factors can influence the course of MG. Adequate medical counselling and multidisciplinary collaboration are essential for MG patients who wish to have children.

Patient-important upper gastrointestinal bleeding in the ICU: A mixed-methods study of patient and family perspectives.

INTRODUCTION: The objective of this study was to create a definition of patient-important upper gastrointestinal bleeding during critical illness as an outcome for a randomized trial. DESIGN: This was a sequential mixed-methods qualitative-dominant multi-center study with an instrument-building aim. In semi-structured individual interviews or focus groups we elicited views from survivors of critical illness and family members of patients in the intensive care unit (ICU) regarding which features indicate important gastrointestinal bleeding. Quantitative demographic characteristics were collected. We analyzed qualitative data using inductive content analysis to develop a definition for patient-important upper gastrointestinal bleeding. SETTING: Canada and the United States. PARTICIPANTS: 51 ICU survivors and family members of ICU patients. RESULTS: Participants considered gastrointestinal bleeding to be important if it resulted in death, disability, or prolonged hospitalization. The following also signaled patient-important upper gastrointestinal bleeding: blood transfusion, vasopressors, endoscopy, CT-angiography, or surgery. Whether an intervention evinced concern depended on its effectiveness, side-effects, invasiveness and accessibility; contextual influences included participant familiarity and knowledge of interventions and trust in the clinical team. CONCLUSIONS: Survivors of critical illness and family members described patient-important upper gastrointestinal bleeding differently than current definitions of clinically-important upper gastrointestinal bleeding.

Dealing with fibromyalgia in the family context: a qualitative description study.

Headings purpose: Fibromyalgia (FM) is a chronic, nondegenerative disease with important limitations in patients. Its average global prevalence is 1.78%, and women are more affected than men (3:1). Due to the lack of objective diagnostic tools, it is a complex medical condition that is frequently unseen by patients' relatives and doctors, which might nonetheless have a noticeable impact on the patient's entourage.Material and Methods: This qualitative descriptive study aimed to elicit family members' views on how FM affects their lives. It was conducted in two community health centers (one rural and one urban) from the Sagunto Health Department (Valencia Community, Spain). We included seven focus groups with 41 family members. We analyzed the data gathered with an inductive thematic semantic analysis approach using NVivo 12 software.Results: We identified four major themes: (1) fibromyalgia as a nosological entity or an invention that is always burdensome; (2) children and spouses as caregivers (or not); (3) adverse effects of fibromyalgia on the couple's sexual life; and (4) harmful consequences of FM on the family economy. The findings showed a negative impact of the disease within the family context. Family members face complex and changing roles and difficulties when living with women with fibromyalgia.Conclusions: Relatives' better understanding of the disease, greater acceptance of new family roles, and improvement of patients' work conditions are all interventions that may help reduce the negative impact of FM in the family context.

Vázquez Canales LDM, Aguilar García-Iturrospe E, and Pereiro Berenguer I. Impact of fibromyalgia in the family context. FISABIO Foundation Primary Care Research Journey, Generalitat Valenciana (Valencia, Spain). 25th November 2021. Awarded Best Research Project in Primary Care Year 2021.Vázquez Canales LDM, Aguilar García-Iturrospe E, and Pereiro Berenguer I. Qualitative approach in the impact of fibromyalgia in the family context. IV Autonomic Fibromyalgia Journey for professionals and patients. Organized by Sagunto Hospital (Sagunto, Spain). 15th May 2018.Vázquez Canales LDM, Aguilar García-Iturrospe E, and Pereiro Berenguer I. Research project about the Impact of fibromyalgia in the family context. National Spanish Conference about Family Medicine. Organized by the Spanish Family Medicine Society (Madrid, Spain). 6^th May 2017.Vázquez Canales LDM, Aguilar García-Iturrospe E, and Pereiro Berenguer I. Quantitative approach in the impact of fibromyalgia in the family context. III Autonomic Fibromyalgia Journey for Professionals and Patients. Organized by Sagunto Hospital (Sagunto, Spain). 2^nd October 2017.

A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment.

BACKGROUND: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care. METHODS: A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values. RESULTS: We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values. CONCLUSION: Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide.

Experiences of music therapy in paediatric palliative care from multiple stakeholder perspectives: A systematic review and qualitative evidence synthesis.

BACKGROUND: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. AIM: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives. DESIGN: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025). DATA SOURCES: Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP). RESULTS: A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes. CONCLUSION: Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes.

Developing a conceptual model for understanding caregiving experience and their impacts on quality of life for Chinese breast cancer family caregivers: A qualitative study.

AIM: The purpose of this study was to understand the caregiving experiences of breast cancer family caregivers and explore the profound impacts of those experiences on their quality of life. DESIGN: A qualitative research method was used. METHODS: We extended invitations to 23 family caregivers of outpatients and inpatients receiving breast surgery and oncology treatments in Taiyuan, China, to participate in semi-structured interviews. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse the interview data. RESULTS: Four themes and associated categories were identified: (1) changes in family dynamics, (2) the socio-medical context, (3) interactions between family and society, (4) self-efficacy and nine subthemes and their related categories, where virtually all participants expressed future uncertainty, emotional contagion, and personal challenges, and self-efficacy had a moderating influence on the first three themes. PATIENT OR PUBLIC CONTRIBUTION: This study did not involve direct participation of patients or the public. However, their experiences and perspectives on caregiving were indirectly reflected through the insights provided by the family caregivers who participated in the interviews. Their valuable input contributed to a deeper understanding of the caregiving experience and its impact on the quality of life for Chinese breast cancer family caregivers.

Secondhand smoke prevention through the perceptions of pregnant women with smoking family members: a Thailand study.

PURPOSE: Pregnant women with smoking family members are at risk of exposure to second-hand smoke, which leads to adverse pregnancy outcomes. Second-hand smoke prevention is thus important but remains less understood based on pregnant women's perceptions. This study aimed to describe the perceptions of pregnant women on second-hand smoke prevention. METHODS: This study employed a qualitative descriptive approach. Data collection was performed between July and August 2023 through in-depth interviews with 17 pregnant women purposively selected from a province in central Thailand. The verbatim transcribed data were analysed using thematic analysis. RESULTS: Five themes emerged: unclear understanding of second-hand smoke; influences shaping perceptions related to second-hand smoke; attempt to prevent second-hand smoke exposure; barriers to prevention of second-hand smoke exposure; and needs related to prevention of second-hand smoke exposure. CONCLUSION: The findings provide insights into second-hand smoke prevention from the perception of pregnant women with smoking family members. Healthcare professionals need to design interventions tailored to pregnant women's needs and involve smoking family members. It is necessary to develop and incorporate clinical guidelines into standard prenatal care to support healthcare personnel in identifying, assessing, educating, and mitigating the issue of second-hand smoking exposure.