Facilitate Family Communication Research Articles

The Role of Oxygenation Index as an Outcome Predictor in Mechanically Ventilated Acute Respiratory Distress Syndrome Patients

Background: Acute respiratory distress syndrome (ARDS) is associated with a significant mortality rate and a high likelihood of failing to wean from mechanical ventilation. Predicting such outcomes in such patients is crucial for the modification of appropriate treatment approaches and for facilitating family communication. Several studies have found that the oxygenation index is an early predictor of outcomes. This study aimed to assess the role of OI assessed on day 1 for predicting weaning outcomes and mortality within 28 days. Methods: This prospective observational study was done at Dhaka Medical College Hospital (DMCH) over a year. A total of 122 patients with ARDS admitted to the non-COVID intensive care unit (ICU) at the Department of Anesthesia, Pain, Palliative & Intensive Care were included in the study based on selection criteria, using a non-probability sampling technique after receiving informed written consent from the patient’s attendants. On day one, the oxygenation index (OI) was measured, and the outcomes were recorded. Results: An oxygenation index of ≥16.01 cm of H2O substantially increased the risk of mortality by 295.211 (95% confidence interval (CI): 28.163-3094.528) times and predicted mortality with 88.06% sensitivity and 87.27% specificity. The oxygenation index (≥11.11 cm of H2O) was found to independently and significantly increase the chance of weaning outcome (failure) by 35.094 (95% CI: 4.041-304.762) times and weaning failure was predicted with 95.45% sensitivity and 70.27% specificity. Conclusion: In ARDS patients on mechanical ventilation, the OI measure at day one can be used as a highly accurate, and independent predictor of death and weaning failure.

The family talk intervention prevent the feeling of loneliness - a long term follow up after a parents life-threatening illness

BackgroundThe psychosocial needs of families in which a parent is affected by life-threatening illness and has dependent children are extensive. However, few family-based interventions have been scientifically evaluated and even fewer have been evaluated long term. Therefore, the specific objectives of this study were to describe the parents’ perceptions of the timing and length of FTI in relation to the illness trajectory, to explore what activities learnt by the FTI still were practiced in the long-term and what content of FTI was perceived as most valuable to cope in the long-term.MethodsThis qualitative study involved a follow-up with nine parents (ill parents, n = 3, coparents, n = 6) 4 to 5 years after participating in FTI, where one parent was cared for in specialised palliative homecare. FTI is a psychosocial family-based intervention that consists of 6–11 manual-based meetings with the families led by an educated interventionist. FTI focuses on facilitating family communication about illness-related subjects, supporting parenting, and making the children’s needs visible. The data collection consisted of interviews and was analysed according to the phenomenographic method, focused on variations in perceptions.ResultsThe parents perceived FTI as a way to alleviate feelings of loneliness, and some families were still using the obtained communication tools at the time of the interview. They also perceived that FTI contributed to the children being more open about their own feelings and thoughts. However, the parents wanted extended support after FTI ended based on their individual needs, for example, during and after bereavement, deteriorated health or occasional challenges faced by children in crisis. The parents perceived the peer support gained in conjunction with FTI as important social and emotional support both during and after the intervention. The interventionists were perceived as professional persons who promoted open and honest communication during FTI.ConclusionFTI is found to promote family communication both in a short- and long-term perspectives according to parents. They also found FTI useful in reducing their feelings of loneliness. Support over a longer period of time is desired and extra FTI meetings may strengthen the family as a whole in parallel with additional support for parents and children during the illness trajectory and in bereavement. They received support in dealing with strong and difficult emotions and learned conversational techniques that they still used at the time of the interview, indicating that the lessons learnt was integrated and valuable many years after the last FTI meeting.

Terminally ill head and neck cancer patients and AI: Opportunities and prospects

Head and Neck Cancer (HNC) presents unique challenges due to its psychological impact, particularly regarding facial disfigurement and social acceptance issues, especially in advanced stages and among terminally ill patients. Despite the critical importance of advance care planning and end-of-life discussions, these aspects are often overlooked, further compounded by the stigma and negative quality of life issues associated with visible morbidity in HNC patients. This commentary explores the potential of Artificial Intelligence (AI) in addressing the multifaceted needs of terminally ill HNC patients. These include pain management and symptom control through predictive modeling, psychosocial support via AI-powered chatbots, treatment decision support by synthesizing patient data, automated radiation planning, end-of-life planning with AI-driven decision support systems, facilitating family communication through structured guidance and emotional support, and legacy building using AI-enabled digital platforms for preserving personal narratives. We propose the AI's potential in reducing suicidal ideation among HNC patients, a significant concern in the HNC patient population. AI can enhance patient safety and promote psychological well-being during the end-of-life journey. This commentary underscores the transformative role of AI in improving the holistic care and quality of life of terminally ill HNC patients, offering practical and compassionate support throughout their challenging journey.

Friends, Family, and Food: Development of a Food Allergy Intervention, F3-App, for Children.

Despite a marked increase in the prevalence of pediatric IgE-mediated food allergy (FA) in recent decades, there is a dearth of age-appropriate management education and support tools for youth with FA. The purpose of this report is to detail our methods for intervention design and refinement of an interactive educational software program for school-aged children with FA. Development of the "Friends, Family and Food Application (F3-App)" employed an iterative, user-centered design approach with input from children with FA, their caregivers, and other key experts. Phase 1 (Prototype Development/Pilot Evaluation) involved family input on key themes and educational messages, development of a prototype, and pilot testing. Phase 2 (Full F3-App Development/Open Trial) included refinement and expansion of the prototype per advisory panel and end-user recommendations, followed by an open trial with additional iterative refinement. Acceptability and credibility of the F3-App were rated highly by most participants. Relatively few technical challenges arose with F3-App installation or use. Follow up interviews with children and caregivers suggested that the F3-App was generally well-received, families found the content useful, and that it prompted family discussion about the child's FA management. User input is critical to developing family-friendly software to support management of pediatric chronic conditions. Interactive educational software can be a useful channel for children to practice skills and build confidence in disease self-management and to facilitate family communication regarding the stresses of FA management. ClinicalTrials.gov identifier: NCT05111938.

Facilitating family communication of familial hypercholesterolemia genetic risk: Assessing engagement with innovative chatbot technology from the IMPACT-FH study.

To assess use of two web-based conversational agents, the Family Sharing Chatbot (FSC) and One Month Chatbot (OMC), by individuals with familial hypercholesterolemia (FH). FSC and OMC were sent using an opt-out methodology to a cohort of individuals receiving a FH genetic result. Data from 7/1/2021 through 5/12/2022 was obtained from the electronic health record and the chatbots' HIPAA-secure web portal. Of 175 subjects, 21 (12%) opted out of the chatbots. Older individuals were more likely to opt out. Most (91/154, 59%) preferred receiving chatbots via the patient EHR portal. Seventy-five individuals (49%) clicked the FSC link, 62 (40%) interacted, and 36 (23%) shared a chatbot about their FH result with at least one relative. Ninety-two of the subjects received OMC, 22 (23%) clicked the link and 20 (21%) interacted. Individuals who shared were majority female and younger on average than the overall cohort. Reminders tended to increase engagement. Results demonstrate characteristics relevant to chatbot engagement. Individuals may be more inclined to receive chatbots if integrated within the patient EHR portal. Frequent reminders can potentially improve chatbot utilization. FSC and OMC employ innovative digital health technology that can facilitate family communication about hereditary conditions.

Impact of childhood leukemia on siblings: their long-term perception of family functioning and its relationship with their psychosocial characteristics using structural equation modeling.

In the context of pediatric cancer, siblings' adaptation and needs have been previously investigated; however, research on the long-term consequences on siblings, especially on their family environment, is scarce. We aimed to (1) assess the family functioning (FF) perceived by siblings of childhood leukemia survivors long after diagnosis and (2) explore characteristics likely associated and investigate associations with psycho-behavioral and social factors. Childhood leukemia survivors' siblings older than 11years were recruited through the LEA cohort, a French long-term follow-up program, and completed the family assessment device (FAD). Logistic regression analysis was used to determine factors likely associated with unhealthy functioning in families as perceived by siblings. Structural equation modeling (SEM) was used to examine relationships that predict siblings' perception of FF. We included 605 siblings (mean follow-up time from diagnosis 14.1 ± 6.8years), of whom 175 (28.9%) perceived unhealthy functioning. SEM showed that older siblings were more likely to perceive problematic functioning (β = 0.095, p = 0.014). Sex and leukemia burden had indirect effects on FF through mediators. Family financial situation at diagnosis was not associated with the risk of reporting unhealthy functioning. Our study contributed to identifying siblings at risk of facing family issues and reinforced the need to provide more consideration and suitable resources to avoid late consequences. Often considered as the "forgotten children", future research should focus on developing targeted interventions to facilitate family communication and improve siblings' social support. Overall, results regarding FF perceived by siblings are reassuring and provide new enlightening elements that allow for better support to all families.

Use of a chatbot to increase uptake of cascade genetic testing.

Successful proband-mediated family communication and subsequent cascade genetic testing uptake requires interventions that present information clearly, in sufficient detail, and with medical authority. To facilitate family communication for patients receiving clinically actionable results via the MyCode® Community Health Initiative, a Family Sharing Tool (FST) and a cascade chatbot were developed. FST is an electronic mechanism allowing patients to share genetic test results with relatives via chatbot. The cascade chatbot describes the proband's result, associated disease risks, and recommended management and captures whether the user is a blood relative or caregiver, sex, and relationship to the proband. FST and cascade chatbot uptake among MyCode® probands and relatives was tracked from August 2018 through February 2020. Cascade genetic testing uptake was collected from testing laboratories as number of cascades per proband. Fifty-eight percent (316/543) of probands consented to FST; 42% (227/543) declined. Receipt preferences were patient electronic health record (EHR) portal (52%), email (29%), and text (19%). Patient EHR portal users (p< 0.001) and younger patients were more likely to consent (p< 0.001). FST was deployed to 308 probands. Fifty-nine percent (183/308) opened; of those, 56% (102/183) used FST to send a cascade chatbot to relatives. These 102 probands shared a cascade chatbot with 377 relatives. Sixty-two percent (235/377) of relatives opened; of these, 69% (161/235) started, and of these, 57% (92/161) completed the cascade chatbot. Cascade genetic testing uptake was significantly greater among relatives of probands who consented to the FST (M= 2.34 cascades, SD= 2.10) than relatives of probands who declined (M= 1.40 cascades, SD= 0.82, p< 0.001). Proband age was not a significant predictor of cascade genetic testing uptake. Further work is needed to better understand factors impacting proband use of FST and relative use of cascade chatbots.

Is the family talk intervention feasible in paediatric oncology? An evaluation of a family-based psychosocial intervention.

To examine the feasibility of a family-based psychosocial intervention, Family Talk Intervention (FTI), in paediatric oncology in terms of recruitment, retention, delivery, response rate and acceptability from the parents' perspective. This study involved 26 families affected by childhood cancer. FTI encompasses six family meetings, with the main goal being to facilitate family communication about illness-related subjects. Meeting 5 is preferably moderated by the parents. Extra meetings (7-11) can be held if needed. This paper includes observational data and surveys, and interviews with parents. All families who started FTI underwent the full intervention and the survey response rate varied between 100% and 71% over time. Extra meetings were held with most families. The parents stated that FTI filled a gap of support to the family as a unit and described FTI as a map they could follow. Since FTI was conducted at home, this created a safe environment, which contributed to their participation. The parents valued the children's perspectives being considered, but some felt uncomfortable moderating 'the family talk' (meeting 5). Family talk intervention was valued by parents, but it would benefit from being slightly modified before a large trial can be developed.

Interventions Facilitating Family Communication of Genetic Testing Results and Cascade Screening in Hereditary Breast/Ovarian Cancer or Lynch Syndrome: A Systematic Review and Meta-Analysis.

Simple SummaryIn general, 5–20% of all cancers are due to pathogenic variants in cancer genes that are passed down in the family. It is recommended that blood relatives of individuals with such a pathogenic variant have genetic testing, to identify if they also carry the same variant. This information will help their healthcare providers to make individualized cancer screening and prevention plans. However, only around 30% of at-risk relatives have genetic testing, presumably due to a lack of communication about inherited cancer genes among family members. In this paper, we identified interventions that were designed to improve family communication about hereditary cancer and/or genetic testing among at-risk relatives for two common hereditary cancer syndromes. We analyzed the components of these interventions and synthesized outcomes with statistical methods. Although we identified 14 eligible studies, there are still many unanswered questions about clinical and research implications with diverse samples to be addressed in future studies.Evidence-based guidelines recommend cascade genetic testing of blood relatives of known Hereditary Breast and Ovarian Cancer (HBOC) or Lynch Syndrome (LS) cases, to inform individualized cancer screening and prevention plans. The study identified interventions designed to facilitate family communication of genetic testing results and/or cancer predisposition cascade genetic testing for HBOC and LS. We conducted a systematic review and meta-analysis of randomized trials that assessed intervention efficacy for these two outcomes. Additional outcomes were also recorded and synthesized when possible. Fourteen articles met the inclusion criteria and were included in the narrative synthesis and 13 in the meta-analysis. Lack of participant blinding was the most common risk of bias. Interventions targeted HBOC (n = 5); both HBOC and LS (n = 4); LS (n = 3); or ovarian cancer (n = 2). All protocols (n = 14) included a psychoeducational and/or counseling component. Additional components were decision aids (n = 4), building communication skills (n = 4), or motivational interviewing (n = 1). The overall effect size for family communication was small (g = 0.085) and not significant (p = 0.344), while for cascade testing, it was small (g = 0.169) but significant (p = 0.014). Interventions show promise for improving cancer predisposition cascade genetic testing for HBOC and LS. Future studies should employ family-based approaches and include racially diverse samples.

ShareDNA: a smartphone app to facilitate family communication of genetic results

BackgroundGenetic testing allows patients and clinicians to understand the risk of hereditary diseases. By testing early, individuals can make informed medical decisions about management which may minimize the risk of developing certain diseases. Importantly, genetic test results may also be applicable to patients’ biological relatives; thus, these results could also lead to minimizing their risk of disease. However, sharing genetic test results between patients and their relatives is scarce. The most frequently reported problems are that patients cannot clearly explain this information and relatives misinterpret the results. Smartphone apps in the healthcare field are a possible solution as they allow patients to accurately share sensitive information to others, while providing educational material to support understanding the information. However, these apps may not provide security to protect patients’ identifiable information. We developed ShareDNA, a smartphone app that (1) allows patients to securely share their genetic test results with others, (2) provides information on how to interpret these results, and (3) minimizes the amount of patient information needed to use the service.ResultsWe recruited thirteen participants to test the usability of our app and provide feedback. We found overall that participants were comfortable with using this app and could easily learn each app function when filling out our questionnaire. Additionally, based on vocalized impressions of the usefulness of the app, participants indicated that the user-interface could be more intuitive and that we needed to add more text within the app to explain why ShareDNA is a secure service.ConclusionsShareDNA is a free smartphone app that allows patients to share their genetic test results with others, including their biological relatives. Sharing these results along with educational material will enable relatives to share accurate information and discuss their possible risk for disease with their clinical providers. As a result, appropriate testing in relatives could be improved.

Long-Term Follow-Up Study on the Uptake of Genetic Counseling and Predictive DNA Testing in Inherited Cardiac Conditions.

Inherited cardiac conditions present with a wide range of symptoms and may even result in sudden cardiac death. Relatives of probands with a confirmed pathogenic genetic variant are advised predictive DNA testing to enable prevention and treatment. In 2 previous cohort studies of 115 probands with a pathogenic variant, family uptake of genetic counseling was assessed in the first year(s) after test result disclosure to the proband. This study assesses uptake in these cohorts in the 14 to 23 years following disclosure. Uptake was determined retrospectively using patient records. First-degree relatives, and second-degree relatives of a deceased first-degree relative suspected of having an inherited cardiac condition, were considered eligible. Of 717 eligible relatives (598 first-degree and 119 second-degree relatives), 60% attended genetic counseling. Most of them (68.6%) attended genetic counseling in the first year. A total of 98.4% of counseled relatives pursued predictive DNA testing. A total of 49.2% was identified as carrier. Median time between disclosure to the proband and counseling of relatives was 6 months (range: 0-187 months). Attending genetic counseling was observed more frequently in first-degree relatives, female relatives, primary arrhythmia syndromes, relatives with manifest inherited cardiac condition, relatives without children and families with sudden cardiac death in first-degree relatives <40 years. During median follow-up of 16 years, 60.0% of relatives attended genetic counseling, with 41.0% in the first year. Our results may suggest that some relatives are not or inadequately informed or that barriers against genetic counseling are present. Further research is needed into interventions facilitating family communication, increasing awareness among families and healthcare professionals, and lowering thresholds for genetic counseling.

The uptake of family screening in hypertrophic cardiomyopathy and an online video intervention to facilitate family communication.

BackgroundIndividuals with hypertrophic cardiomyopathy (HCM), even when asymptomatic, are at‐risk for sudden cardiac death and stroke from arrhythmias, making it imperative to identify individuals affected by this familial disorder. Consensus guidelines recommend that first‐degree relatives (FDRs) of a person with HCM undergo serial cardiovascular evaluations.MethodsWe determined the uptake of family screening in patients with HCM and developed an online video intervention to facilitate family communication and screening. Family screening and genetic testing data were collected through a prospective quality improvement initiative, a standardized clinical assessment and management plan (SCAMP), utilized in an established cardiovascular genetics clinic. Patients were prescribed an online video if screening of their FDRs was incomplete and a pilot study on video utilization and family communication was conducted.ResultsTwo‐hundred and sixteen probands with HCM were enrolled in SCAMP Phase I and 190 were enrolled in SCAMP Phase II. In both phases, probands reported that 51% of FDRs had been screened (382/749 in Phase I, 258/504 in Phase II). Twenty patients participated in a pilot study on video utilization and family communication. Nine participants reported watching the video and six participants reported sharing the video with relatives; however only one participant reported sharing the video with relatives who were not yet aware of the diagnosis of HCM in the family.ConclusionDespite care in a specialized cardiovascular genetics clinic, approximately one half of FDRs of patients with HCM remained unscreened. Online interventions and videos may serve as supplemental tools for patients communicating genetic risk information to relatives.

Patterns of family communication and preferred resources for sharing information among families with a Lynch syndrome diagnosis

ObjectivesTo explore patterns of communication among families with a Lynch syndrome diagnosis and understand what resources could facilitate family communication. Methods127 probands (i.e., first person in family with identified mutation) and family members participated in semi-structured interviews about: how they learned about the Lynch syndrome diagnosis, with whom they shared genetic test results, confidence in sharing results with other family members, and helpfulness of educational resources. ResultsBoth probands and family members were most likely to share genetic test results with parents and siblings, and least likely to share results with aunts, uncles, and cousins. Most participants felt very confident sharing their test results with family members, but reported that certain topics such as cancer risk were challenging to convey. Probands reported the most helpful resources to be access to a specialty clinic or website, while family members described general printed materials as most helpful. ConclusionsFamilies affected by Lynch syndrome may experience barriers to communication with more distant relatives, and may benefit from receiving specific resources (e.g., websites about Lynch syndrome, print materials) to facilitate family communication. Practice implicationsProviders could emphasize the need to share information with more distant family members and provide appropriate supportive resources.

How Can We Reach At-Risk Relatives? Efforts to Enhance Communication and Cascade Testing Uptake: a Mini-Review

Cascade testing, or screening, is the process of stepwise, systematic genetic testing of at-risk relatives for a genetic variant originally identified in a proband. Cascade testing effectively identifies at-risk relatives who would benefit from early screening and/or medical intervention, and can potentially lead to early diagnoses and disease prevention. However, recent studies highlight the need for additional resources to enhance family communication and improve the cascade testing process. In this mini-review of cascade testing, we discuss various factors that influence the effectiveness of communicating genetic risk information among families, including barriers, provision of additional resources, direct contact, and the role of technology and healthcare providers. Patients desire and value involvement of healthcare providers in the cascade testing process. Uptake of cascade testing increases when patients are provided with educational materials and technological resources, and when healthcare providers assist with communicating risk to their at-risk relatives. Through achievable adjustments in patient care, healthcare providers can facilitate family communication and uptake of cascade testing. This can be done by asserting the importance of genetic testing results to at-risk family members when reviewing results with patients and leveraging technological tools and other options for direct contact to maximize the benefits of earlier diagnosis and prevention.

Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review.

Siblings' psychosocial adjustment to childhood cancer is poorly understood. This systematic review summarizes findings and limitations of the sibling literature since 2008, provides clinical recommendations, and offers future research directions. MEDLINE/Pubmed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO were searched for articles related to siblings, psychosocial functioning, and pediatric cancer. After systematic screening, studies meeting inclusion criteria were rated for scientific merit, and findings were extracted and synthesized. In total, 102 studies were included (63 quantitative, 35 qualitative, 4 mixed-methods). Methodological limitations are common. Mean levels of anxiety, depression, and general adjustment are similar across siblings and comparisons, but symptoms of cancer-related posttraumatic stress are prevalent. School-aged siblings display poorer academic functioning and more absenteeism but similar peer relationships as peers. Quality of life findings are mixed. Adult siblings engage in higher levels of risky health behaviors and may have poorer health outcomes than comparisons. Risk factors for poor sibling adjustment include lower social support, poorer family functioning, lower income, non-White race, and shorter time since diagnosis, but findings are inconsistent. Qualitative themes include siblings' maturity, compassion, and autonomy, but also strong negative emotions, uncertainty, family disruptions, limited parental support, school problems, altered friendships, and unmet needs. Despite methodological limitations, research indicates a strong need for sibling support. Clinical recommendations include identifying at-risk siblings and developing interventions to facilitate family communication and increase siblings' social support, cancer-related knowledge, and treatment involvement. Future longitudinal studies focusing on mechanisms and moderators of siblings' adjustment would inform timing and targets of psychosocial care.

Experience of Asian males communicating cardiac genetic risk within the family.

The genetic nature of an inherited cardiac condition (ICC) places first- and second-degree relatives at risk of cardiac complications and sudden death, even in the absence of symptoms. Communication of cardiac genetic risk information allows at-risk relatives to clarify, manage, and potentially prevent ICC-associated risks through cardiac screening. Literature regarding family communication of genetic risk information are predominantly based on Western populations, with limited insight into the Asian experience. This qualitative exploratory study provides a male perspective into the communication of ICC risks within families in Singapore. Eight male participants with clinically diagnosed cardiomyopathy, who had all received genetic counseling, were recruited. A phenomenological perspective was used to identify emergent themes from semi-structured interviews. In this study, most participants recalled their healthcare professional's emphasis on family communication. Notably, participants revealed that at-risk relatives were not accessing screening, and many described family members as currently asymptomatic and "healthy." These findings coincide with documented Asian beliefs regarding perceptions of health, which have important implications for the provision of genetic counseling support within Asian communities, especially in facilitating family communication such that at-risk relatives are informed about their ICC risks and available management options.

Exploring approaches to facilitate family communication of genetic risk information after cystic fibrosis population carrier screening.

Population carrier screening for cystic fibrosis (CF) enables individuals with no known family history of the condition to ascertain their risk of having a child with CF. When an individual is identified as a carrier of CF, a life-shortening condition, they are encouraged to inform their relatives who are at increased risk of being a carrier. Research suggests that the uptake of CF carrier testing amongst relatives of carriers or people with CF is low. This study aimed to explore approaches to facilitate the process of family communication of genetic information after an individual is identified as a carrier of CF through population screening. Five key informants were interviewed to inform the development of a telephone survey which was administered to 21 individuals identified as carriers of CF through population carrier screening at Victorian Clinical Genetics Services. This study suggests that providing carriers with additional information and follow-up support would be appreciated by carriers and could result in more accurate information being disseminated more widely within families, which could lead to more at-risk relatives accessing testing. Suggested strategies to enhance current practice include mailing a fact sheet to carriers and a follow-up telephone call provided by a genetic counsellor to carriers to offer further support in communicating this information to their relatives.

Caring for an intimate stranger: parenting a child with psychosis.

The care of an adult son or daughter with psychosis is filled with overwhelming demands caused by the symptomatology and illness exacerbations. Parents display disenfranchised grief over multiple losses and report increased levels of emotional burden. Most studies use quantitative methods and rely on pre-existing theoretical frameworks to investigate, through psychometric measures, the effects of being a carer. Meaning attributions to the disorder, and changes in parent-child relations over time, are poorly understood. This hermeneutic phenomenological study illuminates the subjective experience of parenting a son or daughter with psychosis, as it is lived and described by parents of young adults with psychosis. Findings suggest that the parents' perceptions of their child changes over the course of the disorder, leading to a redefinition of the parent-child relationship, causing alternations in attachment. Findings illuminate the parents' profound guilt over having contributed or not prevented the disorder, over not being 'good' parents and feeling ambivalent towards an 'intimate stranger.' Guilt is compensated by absolute dedication to the son or daughter's care, at the expense of their own well-being. Interventions for parents must be available as soon as possible, both during hospitalization and after discharge. Professionals should provide a therapeutic space, where parents could express intimate thoughts and feelings, address guilt, fear and resentment issues, be assisted in their parenting role as well as in the reconstruction of a sense of self and self-esteem. Professionals are invited to facilitate illness acceptance, provide accurate information, assist parents to redefine their relationship to the child and facilitate the integration of the traumatic experience into their personal and family narrative. Professionals must develop in depth awareness of their biases and attitudes, have an ongoing training on how to respond to the parents' needs, facilitate therapeutic change and accompany families through the course of their adult child's illness trajectory. Introduction Children who are diagnosed with psychosis often rely on their parents for prolonged care. The impact of such care is partially understood as most studies use quantitative methods and pre-existing theoretical frameworks that limit their investigation to emotional burden, and emotional responses. Aim Explore the parents' lived experience of caring for a child with psychosis. Method A hermeneutic phenomenological design was used with a sample of 16 parents of children with psychotic disorders who were hospitalized or attended the outpatient clinic of a large psychiatric Greek hospital. Results Identified themes were as follows: (i) the psychosis experience, (ii) redefinition of the parent-child relationship over the course of the disorder and (iii) challenges of parenting a child with psychosis. Discussion 'Caring for an intimate stranger' reflects the parents' overall experience, involving changes in the parent-child relationship, ambivalence towards caretaking and profound guilt, compensated by self-sacrifice parenting practices. Findings highlight the necessity to train mental health professionals to provide individualized information; facilitate family communication; address the parents' guilt, ambivalence, meaning attributions that compromise adjustment; and support them through the challenges of parenting a son or daughter with psychosis.

Grannies on the Net: Grandmothers’ Experiences of Facebook in Family Communication

&lt;p&gt;Despite ageist stereotypes about older people’s abilities to engage with information and communication technologies, grandparents are increasingly engaged with digital media. Grandmothers, in particular, are primarily responsible for using of web-based services to communicate with their children and grandchildren (Quadrello et al., 2005). Photos and news from children and grandchildren, especially grandbabies, act as important incentives for grandparents to go online. The purpose of the study, therefore, was to investigate how grandmothers use Facebook to facilitate family communication with children and grandchildren who move far away from home. Semi-structured interviews were conducted with grandmothers living in Romania and Canada, having a Facebook account and relevant family members (children or grandchildren) far from home. Three themes emerged from the data indicating: 1) the tendency to switch between different platforms to facilitate family communication; 2) the relative passive use of Facebook, focusing on photos and quotations as content that trigger emotions; 3) that Facebook usage is influenced by social norms around decency and privacy. Findings suggest that family relationships play a central role in grandmothers’ motivations and behaviours surrounding Facebook use.&lt;/p&gt;

Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery.

Many families experience difficulty in talking about an inherited genetic condition that affects one or more of them. There have now been a number of studies identifying the issues in detail, however few have developed interventions to assist families. The SPRinG collaborative have used the UK Medical Research Council's guidance on Developing and Evaluating Complex Interventions, to work with families and genetic counsellors (GCs) to co-design a psycho-educational intervention to facilitate family communication and promote better coping and adaptation to living with an inherited genetic condition for parents and their children (<18 years). The intervention is modelled on multi-family discussion groups (MFDGs) used in psychiatric settings. The MFDG was developed and tested over three phases. First focus groups with parents, young people, children and health professionals discussed whether MFDG was acceptable and proposed a suitable design. Using evidence and focus group data, the intervention and a training manual were developed and three GCs were trained in its delivery. Finally, a prototype MFDG was led by a family therapist and co-facilitated by the three GCs. Data analysis showed that families attending the focus groups and intervention thought MFDG highly beneficial, and the pilot sessions had a significant impact on their family' functioning. We also demonstrated that it is possible to train GCs to deliver the MFDG intervention. Further studies are now required to test the feasibility of undertaking a definitive randomised controlled trial to evaluate its effectiveness in improving family outcomes before implementing into genetic counselling practice.