Quality of life in caregivers of a child with a developmental and epileptic encephalopathy.

AIM: To explore the relationship between social care-related quality of life (SCrQoL) for caregivers of a child with a developmental and epileptic encephalopathy (DEE; such as SCN2A and Dravet syndrome) and health literacy, illness perceptions, and caregiver activation. METHOD: As part of a larger pre-post pilot study of an information linker service, caregivers completed a baseline questionnaire which included demographics and measures to assess SCrQoL, health literacy, illness perceptions, and caregiver activation. We used Spearman's Rho to determine relationships between variables. RESULTS: Seventy-two caregivers completed the questionnaire. Total SCrQoL varied widely, ranging from an 'ideal state' to 'high needs state'. Caregivers most frequently reported high needs regarding doing activities they enjoy and looking after themselves. Total SCrQoL was correlated with cognitive (r[70] = -0.414, p < 0.000) and emotional representations of illness (r[70] = -0.503, p < 0.000), but not coherence (r = -0.075, p = 0.529). Total SCrQoL was not correlated with health literacy (r[70] = 0.125, p = 0.295) or caregiver activation (r[70] = 0.181, p = 0.127). INTERPRETATION: Future research should explore whether interventions that help caregivers cognitively reframe the negative experiences of having a child with a DEE, and support them to partake in activities they enjoy, boost their SCrQoL. WHAT THIS PAPER ADDS: Caregiver social care-related quality of life (SCrQoL) varied widely, from 'ideal state' to 'high needs state'. Most common high needs were doing enjoyable activities and self-care. Caregivers with higher SCrQoL may perceive their child's illness as less threatening. SCrQoL does not appear to be related to caregiver activation in this sample.

Communicating with families of young people with hard-to-treat cancers: Healthcare professionals' perspectives on challenges, skills, and training.

OBJECTIVES: Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs' key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training. METHODS: We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with hard-to-treat cancer within the past 24 months. Interviews were analyzed using qualitative content analysis. RESULTS: We interviewed 10 oncologists, 7 nurses, and 3 social workers. HCPs identified several challenges for communication with families including: balancing information provision while maintaining realistic hope; managing their own uncertainty; and nurses and social workers being underutilized during conversations with families, despite widespread preferences for multidisciplinary teamwork. HCPs perceived that making themselves available to families, empowering them to ask questions, and repeating information helped to establish and maintain trusting relationships with families. Half the HCPs reported receiving no formal training for communicating prognosis and treatment options with families of children with hard-to-treat cancers. Nurses, social workers, and less experienced oncologists supported the development of communication training resources, more so than more experienced oncologists. SIGNIFICANCE OF RESULTS: Resources are needed which support HCPs to communicate with families of children with hard-to-treat cancers. Such resources may be particularly beneficial for junior oncologists and other HCPs during their training, and they should aim to prepare them for common challenges and foster greater multidisciplinary collaboration.

Grandparents' Experiences of Childhood Cancer: A Qualitative Study.

A child's cancer diagnosis has a significant impact on the lives of grandparents. Grandparents experience the stress of worrying about both their adult children and their grandchildren. Our study aimed to explore the lived experience of grandparents of children diagnosed with cancer. A qualitative design involving semi-structured interviews was used and data were analyzed using reflexive thematic analysis. Twenty grandparents aged 41 to 77 years were interviewed. Six themes were identified: (a) Diagnosis: changing everything; (b) Aspects of treatment: A different world; (c) Sandwich generation; (d) Family: Worrying about everyone; (e) Balancing work; and (f) It's like suddenly a door opens. Our study demonstrates the life-changing impact of having a grandchild diagnosed with cancer. It expands on existing knowledge and shows that, due to an aging population and demographic changes, some grandparents must juggle the demands of caring for aging family members and working while supporting adult children and grandchildren.

University students' psychological distress during the COVID-19 pandemic: A structural equation model of the role of resource loss and gain.

Using the Conservation of Resources (COR) theory, we aimed to determine whether university students' loss and gain in resources during the pandemic mediated the relationships between COVID-19 exposure/concern and depression and anxiety. In 2021, 7013 Israeli university students completed online questionnaires. We assessed the data using structural equation modeling. We found that resource loss was directly related to concern (ß = 0.32, p < 0.001). Depression and anxiety were both directly related to loss of resources (depression: ß = 0.75, p < 0.001; anxiety: ß = 0.69, p < 0.001) and concern (depression: ß = 0.06, p < 0.001; anxiety: ß = 0.12, p < 0.001). Resource loss had an indirect effect on the relationships between concern and depression (ß = 0.24, p < 0.001) and concern and anxiety (ß = 0.22, p < 0.001). COR theory may help explain the mechanisms behind university students' mental health during the pandemic and provides a framework to better understand preparedness for future pandemics, epidemics, and major disasters. Governments and universities should help prevent the loss of resources during future emergencies.

Fathers' Experiences of Childhood Cancer: A Phenomenological Qualitative Study.

Research has shown differences in how fathers and mothers respond to a child's cancer diagnosis. Previous studies have highlighted that sociocultural norm shape fathers' experiences of their child's cancer diagnosis. Our phenomenological qualitative study aimed to examine the lived experiences of fathers whose children have been diagnosed with cancer and explore the impact of sociocultural gender roles. Fathers whose children were currently receiving treatment or had completed treatment in the previous 15 months were recruited from across Australia. Twenty-one fathers were interviewed. Five themes were identified: (a) Your world falls apart: Diagnosis and treatment; (b) Care for the child: Just the way it is; (c) Keeping strong: Finding ways to cope; (d) Employment: Practical and emotional support at work; and (e) Guilt, relief, and grief: Facing death. This study demonstrates the profound impact of a child's diagnosis on fathers and demonstrates that societal-cultural norms influence fathers' experience of childhood cancer.

Parents' Experiences of Childhood Cancer During the COVID-19 Pandemic: An Australian Perspective.

INTRODUCTION: COVID-19 has had far-reaching impacts including changes in work, travel, social structures, education, and healthcare. OBJECTIVE: This study aimed to explore the experiences of parents of children receiving treatment for cancer during the COVID-19 pandemic. METHODS: Parents whose children were currently in treatment for childhood cancer or had completed treatment in the previous 12 months, participated in semi-structured interviews, face-to-face or via teleconferencing. Thematic analysis was used to analyze the data. RESULTS: The sample consisted of 34 participants (17 fathers and 17 mothers) from all states across Australia. Median age 37.5 years (range 29-51, years, SD = 6.3). Five main themes were identified: "Welcome to the Club"; "Remote Work and Study"; "Silver Linings"; "The Loneliest Experience" with three sub-themes "Immediate Family"; "Friends"; and "Overseas Family" and "Lack of Support" with two sub-themes: "Community Support" and "Organized Support." CONCLUSION: These findings revealed contrasting experiences of the impact of the COVID-19 pandemic. For parents whose children were neutropenic, the pandemic provided benefits in increased community understanding of infection control. Parents also reflected that the movement to remote work made it easier to earn an income. In contrast, some parents observed that restrictions on visitors and family intensified feelings of isolation. Parents also described how the COVID-19 reduced access to support services. These findings contribute to an understanding of the multifaceted impacts of the COVID-19 pandemic on families of children with cancer.

'Torn in two': Experiences of Mothers Who Are Pregnant when Their Child Is Diagnosed With Cancer.

Mothers of children diagnosed with cancer have been shown to experience high rates of psychological distress and poor physical health. Pregnancy further increases the healthcare needs of mothers due to the marked physiological changes and psychological adaptations. Our study aimed to explore the experiences of mothers who were pregnant and/or had a baby while their older child was receiving treatment for cancer. Our study employed a qualitative description methodology using semi-structured interviews. Participants were recruited from across Australia via notices on social media sites and the distribution of flyers. The sample comprised 13 mothers who were pregnant and/or had a baby and had a child diagnosed with cancer who was under 17 years old. Thematic analysis was used to analyse the data from which six themes were identified: (1) an impossible balancing act, (2) mother's health and well-being, (3) creating certainty: birthing plans, (4) a bit of sunshine and a time to rest, (5) challenges of caring for the baby and (6) an unenviable position: doing my best versus feeling guilty. Our study demonstrates the additional challenges faced by mothers who are pregnant while their child is receiving cancer treatment. There is a need for a comprehensive and coordinated program that provides pregnant mothers with practical and psychological support. The implementation of such a program has the potential to improve health outcomes for all family members, particularly the mother and their newborn.

Unmet and under-met needs among Indian parents of children with neurological disorders.

BACKGROUND: Parents of children with neurological disorders commonly report having unmet needs related to their child's care. Mixed methods research is needed with parents of children with neurological disorders in India in order to: 1) quantify which needs are unmet and under-met, and 2) qualitatively explore how parents perceive their unmet and under-met needs. METHODS: This concurrent mixed-methods study used a convergence model of triangulation design. Parents of children with neurological disorders receiving treatment in a children's hospital in Hyderabad, India completed questionnaires (n = 205) on unmet/under-met needs. Twenty-five of these parents then completed in-depth interviews exploring experiential aspects of unmet needs. RESULTS: Quantitative analysis suggested that education about the child's illness and medical needs were the most frequent unmet needs. Parents needed their child's condition explained to them (91.7%) and greater continuity of their child's care (85.4%). Qualitative analysis suggested that parents reported struggling to find a specialist who was knowledgeable about their child's condition. Though parents living in rural areas quantitatively reported fewer unmet needs (child's medical care, care coordination, and communication) than parents living in the city (B = 0.92 [95%CI = 0.64,1.20] for medical care needs), the qualitative data showed this may be due to lower expectations from the health system. CONCLUSION: Parents of children with neurological disorders in India frequently report unmet and under-met needs. PRACTICE IMPLICATIONS: Community-based interventions coupled with training nurses on information provision could help bridge the gap between what is offered by hospital systems, and what is needed by parents, in terms of information and support.

Interactive video games to reduce paediatric procedural pain and anxiety: a systematic review and meta-analysis.

BACKGROUND: Procedural pain and anxiety in children can be poorly controlled, leading to significant short- and long-term sequelae, such as longer procedure times or future healthcare avoidance. Caregiver anxiety can exacerbate these effects. We aimed to evaluate the effect of interactive video game interventions on children's procedural pain and anxiety, including the effect of different types of video games on those outcomes. METHODS: We conducted a systematic review and meta-analysis of the effectiveness of interactive video games compared with standard care in children (0-18 yr) undergoing painful procedures. We searched the databases MEDLINE, Embase, and PsycINFO. We conducted random-effects meta-analysis using 'R' of children's procedural pain and anxiety and caregivers' anxiety. RESULTS: Of 2185 studies screened, 36 were eligible (n=3406 patients). Studies commonly involved venous access (33%) or day surgery (31%). Thirty-four studies were eligible for meta-analyses. Interactive video games appear to reduce children's procedural pain (standardised mean difference [SMD]=-0.43; 95% confidence interval [CI]: -0.67 to -0.20), anxiety (SMD=0.61; 95% CI: -0.88 to -0.34), and caregivers' procedural anxiety (SMD=-0.31; 95% CI: -0.58 to -0.04). We observed no difference between preparatory and distracting games, or between virtual reality and non-virtual reality games. We also observed no difference between interactive video games compared with standard care for most medical outcomes (e.g. procedure length), except a reduced need for restraint. Studies reported minimal adverse effects and typically had high intervention acceptability and satisfaction. CONCLUSIONS: Our findings support introducing easily available video games, such as distraction-based conventional video games, into routine practice to minimise paediatric procedural pain and child/caregiver anxiety.

Evaluation of an In-Hospital Recreation Room for Hospitalised Children and Their Families.

OBJECTIVE: Many children's hospitals have established 'recreation rooms' to help reduce distress among hospitalised children and families. We investigated recreation rooms in two Australian children's hospitals to determine: 1) families' first use of the room (including discovery and delays); 2) characteristics of families accessing the room; 3) parents' positive and negative associations with the room; and 4) parents' most and least valued aspects of the room. METHOD: Using a concurrent mixed methods design, parents completed questionnaires (Restorative Experiences Tool, Parenting Stress Index-Short Form, Paediatric Quality of Life Inventory) and an optional interview. We analysed data using t-tests and multiple regressions (questionnaires) and content analysis (interviews). RESULTS: Parents (n = 123) commonly reported delays in accessing the recreation room (n = 74, 60.2%). Parents' distress was positively related to their frequency of room use (r = 0.28, p = .001). Families of hospitalised children with lower physical (r = -0.36, p < .001) and psychosocial (r = -0.31, p = .001) functioning used the room more frequently than families of children with higher functioning. Parents reported more positive than negative associations with the rooms for themselves (t(121) = 20.92, 95% CI = 4.34-5.25), their hospitalised child (t(117) = 23.91, 95% CI = 5.00-5.90), and any siblings (t(79) = 15.76, 95% CI = 4.28-5.52). Thirteen parents completed the interviews. We identified three themes: 1) respite; 2) social support and reduced isolation; and 3) need for greater accessibility (particularly for infants/toddlers). CONCLUSIONS: Respite and social support provided within the recreation rooms may be particularly important for highly distressed parents and families of children with lower psychosocial and physical functioning. Dedicated areas for different age groups may help to improve accessibility of the recreation rooms.

Financial toxicity of childhood cancer and changes to parents' employment after treatment completion.

OBJECTIVE: Childhood cancer can have short- and long-term impacts on parents' finances and employment. It is important to understand how families adjust to the financial and employment changes caused by childhood cancer, the ongoing impacts after treatment completion, and which families need more targeted support. Qualitative research is necessary to facilitate an in-depth understanding of the employment and financial impacts on families and to capture parents' complex and nuanced experiences and perspectives. METHODS: We interviewed 56 parents of childhood cancer survivors (M = 2.13 years after treatment completion; 89% mothers) using the vocational and financial impact section of the Psychosocial Adjustment to Illness Scale-Carer Interview Form. We analyzed interviews using content analysis. RESULTS: Parents reported multiple sources of financial toxicity including travel to and from the hospital and needing to reduce their working hours during their child's cancer treatment. Workplace flexibility was an important factor to protect against unwanted vocational changes. After treatment completion, families living in low socioeconomic areas commonly reported ongoing financial difficulties. Mothers, particularly those who were on maternity leave when their child was diagnosed with cancer, reported ongoing employment impacts including unemployment. CONCLUSIONS: Clinical staff including social workers could more consistently assess families' financial distress and refer to professional services who can offer guidance for financial decision-making as standard care. Flexible workplace agreements appear important for parents of children with cancer. Our findings can assist organizations to understand that cancer-related disruptions are likely to continue after treatment completion, and therefore should offer benefits to parents where possible.

Grandparents of children with cancer: a controlled comparison of perceived family functioning.

PURPOSE: Grandparents can be profoundly emotionally affected when a grandchild is diagnosed with cancer. They also often provide invaluable support for the family (e.g., caring for the sick child and/or siblings). Multigenerational family functioning may therefore change. Limited research has assessed grandparents' perspectives after their grandchild is diagnosed with cancer. In this study, we aimed to (1) assess differences in perceived family functioning among grandparents of a child with cancer and grandparents of healthy children and (2) assess the cancer-specific and demographic factors related to perceived family functioning in grandparents of a grandchild with cancer. PROCEDURE: Grandparents of a child with cancer (n = 89) and grandparents of healthy children (n = 133) completed the general functioning, communication, and problem-solving scales of the Family Assessment Device. We used multilevel models with a random intercept to detect (1) between-group differences and (2) identify factors related to perceived family functioning among grandparents with a grandchild with cancer. RESULTS: Grandparents with a grandchild with cancer reported poorer family functioning than grandparents with healthy grandchildren. Among the grandparents with a grandchild with cancer, impairments in family functioning were correlated with fewer years since diagnosis, providing care to their sick grandchild and/or siblings and living far away from the sick grandchild. CONCLUSIONS: The detrimental impact of childhood cancer likely extends beyond the immediate family members. Including grandparents in interventions-beginning at diagnosis-to reduce distress and increase cohesion for families of a child with cancer is warranted, particularly for grandparents who provide care to their sick grandchild or siblings.

Pilot testing "Teach Ted": A digital application for children undergoing blood tests and their parents.

Objective: In this pilot study, we evaluated the acceptability and preliminary evidence of the impact of a new educational mobile application, "Teach Ted", for children undergoing blood tests. Methods: Parents of children (4-10 years) completed questionnaires on anxiety and pain before their child had a blood test, and after using Teach Ted and receiving their blood test. Health professionals at each patient's blood test (e.g. technician/nurse) completed questionnaires on patient outcomes and procedure-related outcomes (e.g. time taken). Results: Nine parents and eight health professionals participated. All but one parent (n = 8/9) reported Teach Ted was useful. Seventy-eight percent (n = 7/9) reported they would use Teach Ted again. All health professionals who completed the acceptability measure (n = 3/3) strongly agreed that Teach Ted was relevant/helpful. Many parents perceived Teach Ted helped reduce their/child's anxiety (n = 3/5, 60% and n = 4/6, 67% respectively), although child's pain and child's/parent's anxiety remained similar before and after using Teach Ted (all p > 0.05). The average blood test duration was 7.6 min (range ≤1 to 22), which health professionals (n = 3/3) reported was not elongated by offering Teach Ted. Conclusions: Participants reported that Teach Ted was acceptable. Further evaluation of Teach Ted's impact on patient's outcomes are needed. Innovation: Teach Ted is an innovative mobile application with potential to educate young children about their upcoming procedure and mitigate negative outcomes.

Co-design of a paediatric oncology medicines database (ProCure) to support complex care provision for children with a hard-to-treat cancer.

Objectives: Paediatric oncologists often encounter challenges when seeking compassionate access to off-label therapies for their patients. This study employed implementation science and co-design techniques to develop the ProCure medicines database, with the goal of streamlining the application process and addressing identified barriers in paediatric oncology. Methods: This study utilised an exploratory qualitative research design. Seventeen healthcare providers, including oncologists, nurse consultants, and allied health professionals, participated in semi-structured interviews guided by the Consolidated Framework for Implementation Research (CFIR) and a visual process map aid. Deductive qualitative data analysis, according to the CFIR constructs, identified key barriers and facilitators. Collaborative design sessions engaged multidisciplinary teams to develop the ProCure beta version. Results: Barriers to off-label therapy access included resource-intensive applications, time sensitive decision-making, and complex pharmaceutical information. Facilitators included Drug Access Navigators, Molecular Tumour Boards, and a multi-disciplinary approach. ProCure addressed end-user needs by centralising medicines information. Additional features suggested by healthcare providers included blood-brain-barrier penetrability data and successful application examples. Conclusion: ProCure represents a promising solution to the challenges paediatric oncologists face in accessing off-label therapies. By centralising information, it simplifies the application process, aids decision-making, and promotes a collaborative approach to patient care. The potential of the database to stream and enhance off-label therapy access underscores its relevance in improving paediatric oncology practise. Further research and implementation efforts are warranted to assess ProCure's real-world impact and refine its features based on user feedback.

Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study.

Parents of a child with a chronic illness can experience greater distress than the average population, yet little is understood about differences between illness groups. This cross-sectional survey study aimed to compare parents' psychological distress and perceived wellbeing across five chronic illnesses. Parents from one Australian pediatric hospital completed the Kessler Psychological Distress Scale and seven purpose-designed items about their wellbeing. Data from 106 parents (cancer = 48, cystic fibrosis [CF] = 27, kidney disease = 12, gastrointestinal condition/disorder = 9, developmental and epileptic encephalopathy [DEE] = 10) was analysed using bivariate Pearson's Correlation and linear mixed-effects models. Parents' distress scores differed between groups (F(4,80) = 2.50, p = .049), with the DEE group reporting higher distress than the CF group (mean difference = 6.76, 95% CI [0.11, 13.42]). Distress scores were moderately correlated to parents' perceptions of their child's health and their own wellbeing. Parents' self-reported coping with their child's condition/treatments differed (F(4,81) = 3.24, p = .016), with the DEE group rating their coping as poorer than the CF group (mean difference = -25.32, 95% CI [-46.52, 4.11]). Across all groups, parents reported unmet needs, particularly for psychosocial support and practical/financial assistance. Support interventions may be most effective if tailored to the child's illness, with greater support potentially needed for parents who have a child with DEE and/or severe comorbidities.

Psychological and somatic symptoms among breast cancer patients in four European countries: A cross-lagged panel model.

Psychological and physical health among women with breast cancer are linked. However, more research is needed to test the interrelations between psychological and somatic symptoms, over time and throughout the different phases of breast cancer treatment, to determine when and which interventions should be prioritized. Six hundred and eighty nine women from four countries (Finland, Israel, Italy and Portugal) completed questionnaires during their first clinical consultation following diagnosis with breast cancer, and again after 3 and 6 months. The questionnaires included self-reported measures of psychological symptoms (Hospital Anxiety and Depression Scale; the Positive and Negative Affect Schedule Short Form) and somatic symptoms [selected items from the International European Organization for Research and Treatment of Cancer (EORTC) questionnaires]. Psychological and somatic symptoms were relatively stable across the three time-points. Cross-lagged paths leading from somatic to psychological symptoms (beta coefficients of 0.08-0.10), as well as vice-versa (beta 0.11-0.12), were found to be significant. No evidence was found for cross-cultural differences in mutual effects of psychological and somatic symptoms. The findings of this study call for tailoring personal interventions for breast cancer patients-either from a somatic perspective or a psychological perspective-and adjust them to the specific experiences of the individual patient.

The psychosocial impact of childhood dementia on children and their parents: a systematic review.

BACKGROUND: Childhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis. There are significant knowledge and clinician skill gaps regarding the shared psychosocial impacts of childhood dementia conditions. This systematic review integrates the existing international evidence of the collective psychosocial experiences of parents of children living with dementia. METHODS: We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched four databases to identify original, peer-reviewed research reporting on the psychosocial impacts of childhood dementia, from the parent perspective. We synthesised the data into three thematic categories: parents' healthcare experiences, psychosocial impacts, and information and support needs. RESULTS: Nineteen articles met review criteria, representing 1856 parents. Parents highlighted extensive difficulties connecting with an engaged clinical team and navigating their child's rare, life-limiting, and progressive condition. Psychosocial challenges were manifold and encompassed physical, economic, social, emotional and psychological implications. Access to coordinated healthcare and community-based psychosocial supports was associated with improved parent coping, psychological resilience and reduced psychological isolation. Analysis identified a critical need to prioritize access to integrated family-centred psychosocial supports throughout distinct stages of their child's condition trajectory. CONCLUSION: This review will encourage and guide the development of evidence-based and integrated psychosocial resources to optimise quality of life outcomes for of children with dementia and their families.

Trajectories of Quality of Life among an International Sample of Women during the First Year after the Diagnosis of Early Breast Cancer: A Latent Growth Curve Analysis.

The current study aimed to track the trajectory of quality of life (QoL) among subgroups of women with breast cancer in the first 12 months post-diagnosis. We also aimed to assess the number and portion of women classified into each distinct trajectory and the sociodemographic, clinical, and psychosocial factors associated with these trajectories. The international sample included 699 participants who were recruited soon after being diagnosed with breast cancer as part of the BOUNCE Project. QoL was assessed at baseline and after 3, 6, 9, and 12 months, and we used Latent Class Growth Analysis to identify trajectory subgroups. Sociodemographic, clinical, and psychosocial factors at baseline were used to predict latent class membership. Four distinct QoL trajectories were identified in the first 12 months after a breast cancer diagnosis: medium and stable (26% of participants); medium and improving (47%); high and improving (18%); and low and stable (9%). Thus, most women experienced improvements in QoL during the first year post-diagnosis. However, approximately one-third of women experienced consistently low-to-medium QoL. Cancer stage was the only variable which was related to the QoL trajectory in the multivariate analysis. Early interventions which specifically target women who are at risk of ongoing low QoL are needed.

"Somewhere to turn to with my questions": A pre-post pilot of an information linker service for caregivers who have a child with a Developmental and Epileptic Encephalopathy.

BACKGROUND: Caregivers of a child with a Developmental and Epileptic Encephalopathy (DEE) often report challenges accessing relevant and understandable information regarding their child's condition. We developed GenE Compass, an information linker service where caregivers are invited to submit questions and receive high-quality, personalised reports. We conducted a pilot evaluation to determine the feasibility and acceptability of GenE Compass. METHODS: We invited eligible caregivers to complete a baseline questionnaire (Q1) prior to receiving three months access to submit an unlimited number of questions to GenE Compass. We then invited caregivers to complete a follow-up questionnaire (Q2) and optional interview. Caregivers also had the opportunity to share report-specific feedback at the time of receiving each report. RESULTS: Seventy-two caregivers completed Q1, of which 41 submitted at least one question (range = 1-7). We received a total of 76 questions. The median turnaround time was 12 working days for our information linker (range = 1-28). Thirty-seven caregivers completed Q2, of whom 32 submitted at least one question (87 %). Overall, caregivers were highly satisfied with GenE Compass and their reports, and indicated that they would use it in the future if they had another question. Caregivers' qualitative data from Q1 and interviews highlighted the ongoing need for an information linker service like GenE Compass due to a lack of understandable information and limited resources, and the benefit in reducing burden of constant information searching. CONCLUSION: Our study shows that GenE Compass is feasible with the appropriate allocation of resources and highly acceptable to caregivers who have a child with a DEE.

Indian physicians' attitudes and practice regarding menopause and its management: a focus group discussion.

OBJECTIVES: To explore Indian physicians' attitudes and practice toward menopause and its management. To contribute to the larger project aimed at developing communication skills and decision aids for Indian physicians and women. METHODS: Using a cross-sectional design, purposive sampling, and a qualitative methodology, 10 Indian physicians (female, 6; male, 4; mean age, 51.5 years) who were practicing either endocrinology or gynecology were recruited to participate in a virtual focus group discussion. Questions explored physicians' attitudes toward menopause and their approach toward addressing menopause and related concerns with their patients. The focus group was analyzed using qualitative content analysis. RESULTS: Three main themes emerged: (1) "The only way to get over it is to accept it": Attitudes toward menopause, (2) "More than menopausal hormone therapy, it is empathy that's required": Physiological and psychological symptom management and (3) Matching the empathic intent with skills: A need for training in the management of menopause. CONCLUSIONS: The study findings underscore the need to introduce Indian physicians to empathic communication skills training, involve, and educate physicians about the international and national clinical guidelines regarding menopausal hormone therapy and alternative therapies, and techniques for distress screening and early referrals. VIDEO SUMMARY: http://links.lww.com/MENO/B17 .