Members Of Support Group Research Articles

The Impact of Long COVID-19 on Mental Health: Observational 6-Month Follow-Up Study.

BackgroundThe psychological impact of COVID-19 can be substantial. However, knowledge about long-term psychological outcomes in patients with COVID-19 is scarce.ObjectiveIn this longitudinal, observational study, we aimed to reveal symptoms of posttraumatic stress disorder (PTSD) and symptoms of anxiety and depression up to 6 months after the onset of COVID-19–related symptoms in patients with confirmed COVID-19 and persistent complaints. To demonstrate the impact in nonhospitalized patients, we further aimed to compare these outcomes between nonhospitalized and hospitalized patients.MethodsDemographics, symptoms of PTSD (Trauma Screening Questionnaire [TSQ] ≥6 points) and symptoms of anxiety and depression (Hospital Anxiety and Depression Scale [HADS] ≥8 points) were assessed at 3 and 6 months after the onset of COVID-19–related symptoms in members of online long COVID-19 peer support groups.ResultsData from 239 patients with confirmed COVID-19 (198/239, 82.8% female; median age: 50 [IQR 39-56] years) were analyzed. At the 3-month follow-up, 37.2% (89/239) of the patients had symptoms of PTSD, 35.6% (85/239) had symptoms of anxiety, and 46.9% (112/239) had symptoms of depression, which remained high at the 6-month follow-up (64/239, 26.8%, P=.001; 83/239, 34.7%, P=.90; 97/239, 40.6%, P=.08, respectively; versus the 3-month follow-up). TSQ scores and HADS anxiety and depression scores were strongly correlated at the 3- and 6-month follow-ups (r=0.63-0.71, P<.001). Symptoms of PTSD, anxiety, and depression were comparable between hospitalized (n=62) and nonhospitalized (n=177) patients.ConclusionsA substantial percentage of patients with confirmed COVID-19 and persistent complaints reported symptoms of PTSD, anxiety, or depression 3 and 6 months after the onset of COVID-19–related symptoms. The prevalence rates of symptoms of PTSD, anxiety, and depression were comparable between hospitalized and nonhospitalized patients and merely improved over time. Health care professionals need to be aware of these psychological complications and intervene on time in post-COVID-19 patients with persistent complaints.Trial RegistrationNetherlands Trial Register NTR8705; https://www.trialregister.nl/trial/8705.

Facebook medical support groups: the communication privacy management perspective

PurposeExploring the considerations that guide and influence members of Facebook medical support groups to disclose private information.Design/methodology/approachThe sample included 293 participants, aged 18–85 years, who answered an online survey, 155 members of Facebook medical support groups and 138 members of other Facebook groups.FindingsMembers of medical support groups attach greater importance to privacy policy, give greater value to privacy and reveal more private information, compared to members of other groups. Members of medical support groups tend to feel that they receive more support and feel that the privacy policy preserves their privacy much more. These feelings are associated with greater self-disclosure of groups' members.Originality/valueThe research insights will help medical support groups' members and admins to put into action the fundamental right to privacy and build a set of rules tailored to their individual and group needs.

Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns.

BackgroundBecause of the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups.ObjectiveWe aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages, and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy, and views on using Facebook for communication between health professionals and parents, pharmaceutical companies, and study recruitment.MethodsWe contacted 12 Facebook support groups for 12 respective rare diseases with pediatric onset and invited group members to participate in a cross-sectional online survey.ResultsOf 231 respondents, 87.0% (n=201) of respondents were female, 12.6% (n=29) were male, and 0.4% reported another sex (n=1). Respondents’ mean age was 41.56 years (SD 9.375); 91.3% (n=211) of respondents were parents (183 mothers, 27 fathers, 1 other sex); 59.7% (n=138) reported a self-initiated search for the Facebook group, 24.2% (n=56) received recommendations from their health professionals, and 12.6% (n=29) recommendations from someone else affected by the disease. On average, support group members visited Facebook at least once a day, visited and passively participated (read/liked posts) several times a week, and participated actively (commented/posted) once a month. As much as 79.2% (183/231) agreed that they would like to have health professionals as members of the respective Facebook group. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups, with concerns mostly related to Facebook itself and nongroup members.ConclusionsOur study confirmed that Facebook enhances support group accessibility for parents of children with rare diseases. Group participants perceive a reduction and elimination of distance, a common challenge in rare disease, and Facebook support groups create an environment of perceived privacy. The group’s privacy setting can be a critical factor for active support group participation. Sharing personal information and pictures on Facebook is very common among group participants, which shows the importance of discussing and protecting children’s privacy rights in this context.Trial RegistrationGerman Clinical Trials Register DRKS00016067; https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016067

Infodemic and Mental Health Consequences

Since the beginning of the COVID-19 pandemic, a tremendous amount of information is spread through social media, including wrong/ misinterpreted information and rumors. World Health Organization (WHO) named this mis/disinformation spread about the pandemic as “infodemic”. In this research, Scopus and PubMed databases were searched with ‘infodemic’ and ‘mental health’ keywords. The data gathered revealed that mental health disorders, including perceptual disorders such as depersonalization and derealization, anxiety disorders, depressive disorders and, also suicidal ideation, increased as a result of the infodemic. Another significant result obtained was the change in discourses among the members of mental health disorder support groups: more negative loads such as hopelessness, helplessness, loneliness, and even suicide were increased.

VIDEO-BASED INTERVENTION ON THE KNOWLEDGE OF BREAST-MILK SUPPORT GROUP IN SEMBUBUK VILLAGE, MUARO JAMBI REGENCY: A PRE-EXPERIMENT STUDY

Introduction: Breast milk is the best food for babies because it contains nutrients to support growth and development. The achievement rate of exclusive breastfeeding in ASIA countries has not yet reached the expected target. The coverage of exclusive breastfeeding in Jambi Province in 2018 was 59.36%. The success of exclusive breastfeeding is not only influenced by the mother’s physical and mental readiness to breastfeed. Still, it is also influenced by support from health workers and the family. The study aimed to determine the effect of counseling using breastfeeding video on grandmothers’ knowledge as breastfeeding support in Sembubuk Village, Muaro Jambi Regency. Methods: This type of pre-experimental research using the One Group Pretest-Posttest design, which saw 40 grandmothers of the Breast Milk Support Group members, was carried out from June 2020 to July 2021. Respondents answer the questionnaires to complete the data collection. The intervention carried out in this study was the provision of counseling using video media about breastfeeding. Data were analyzed through univariate and bivariate using the Wilcoxon test. Results: The results showed the p-value = 0.0001, which means that breastfeeding video affects grandmothers’ knowledge in breastfeeding support groups in Sembubuk village, Muaro Jambi District. Conslusion: The results of this study are expected to increase public knowledge and insight regarding the importance of breastfeeding for infant health so that positive behavior is formed in breastfeeding, providing additional appropriate information to advance understanding of breastfeeding support groups about breastfeeding.

The Function of Ritualized Acts of Memory Making after Death in the Neonatal Intensive Care Unit

(1) Background: Some infants die shortly after birth, leaving both parents and nurses in grief. In the specific setting where the data were collected, the bereaved parents receive a scrapbook made by the nursing staff in the NICU, and a box made by a local parent support group. Making a scrapbook and a box when an infant dies in the NICU can be regarded as ritualized acts. The aim of this study is to explore the functions of these ritualized acts of making a scrapbook and memory box when an infant dies in the NICU. (2) Methods: Focus group interviews were performed with experienced nurses in the NICU, and with members of a parent support group. Reflexive thematic analysis was used to interpret the data. (3) Three main themes were constructed: “Making memories”, “showing evidence of the infant’s life and of the parenthood”, and “controlling chaos”. (4) Conclusions: Through the ritualized acts of making scrapbooks and boxes, nurses and members of the parent support group collect and create memories and ascribe the infant with personhood, and the parents with the status of parenthood. In addition, the ritualizing functions to construct meaning, repair loss, relieve sorrow, and offer a sense of closure for the makers of these items.

Considering the value of online support groups for colorectal conditions: perspectives from caregivers and adult patients.

PurposeTo evaluate the benefits of participating in an online support group for caregivers of children with a colorectal condition or adult patients with a similar condition.MethodsAn electronic survey was administered to members of an international online support group (18 items for caregivers; 15 for patients). Items included demographics, medical diagnosis, potential benefits, and overall experiences in the group. Quantitative results were summarized as descriptive trends, while qualitative responses were summarized thematically.ResultsRespondents (102 caregivers, 6 patients) were primarily female, 35–44 years old, Caucasian, and resided in the United States. Most respondents learned about the support group from medical providers or online search. Cited benefits included learning information, gaining support, forming connections through shared experience, and utilizing a unique resource. Being a member of the group was helpful to respondents, improved their mental health and access to health information, and they would recommend the group to others.ConclusionParticipation in online support groups offers educational and emotional benefits to patients/caregivers which complements the medical support from their colorectal teams. Thus, colorectal providers need to be aware of the availability and potential benefits of these groups, and encourage their patients/caregivers to be actively involved.

MP34-06 IMPROVING THE AWARENESS OF RARE GENETIC DISEASE MULTIDISCIPLINARY TEAM (MDT) CLINICS

You have accessJournal of UrologyHealth Services Research: Quality Improvement & Patient Safety II (MP34)1 Sep 2021MP34-06 IMPROVING THE AWARENESS OF RARE GENETIC DISEASE MULTIDISCIPLINARY TEAM (MDT) CLINICS Wiktoria Milczynska, Amy de Wolf, Akhil Mohindra, and Tet Yap Wiktoria MilczynskaWiktoria Milczynska More articles by this author , Amy de WolfAmy de Wolf More articles by this author , Akhil MohindraAkhil Mohindra More articles by this author , and Tet YapTet Yap More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002043.06AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: The recent guidelines from European Academy of Andrology recommend increasing knowledge of Klinefelter Syndrome and creating multidisciplinary teams to care for affected patients. However, raising awareness of rare genetic disease clinics represents a significant challenge, due to limited recognition amongst patients and clinicians as well as limited resources. Our aim was to look at cost-effective strategies to raise awareness of a national access Klinefelter Syndrome multidisciplinary (KSMDT) clinic among patients and healthcare professionals. METHODS: This longitudinal Quality Improvement Project was carried out over a 6-month period (2020 - 2021) at a tertiary hospital where the KSMDT clinic is located. Two Plan-Do-Study-Act (PDSA) cycles were carried out. The first intervention consisted of creating an informational video about the clinic which was disseminated through Facebook, Twitter and YouTube. The second intervention involved refining the user experience of the clinic’s website. Surveys were distributed amongst KS support group members (n=70) and local primary care practitioners (n=27) before and after intervention, and a focus group (n=6) was held for the second intervention. RESULTS: Awareness of the clinic in the community increased from 33% pre-intervention to 70%. Similarly, awareness of the clinic’s website increased by 31% with an increased retention rate of 61.2% for the multimedia resources accessed. A total of 81% of patients reported that the video helped them understand the aims of the KSMDT. The engagement associated with website use increased by 13% for the focus group post-intervention. The interventions were associated with no financial costs. CONCLUSIONS: Our results indicated that a multifactorial approach, working with both patient and clinician populations, is successful in increasing awareness of rare disease services like the KSMDT clinic. Future awareness strategies need to employ more effective ways of engaging clinician and patient alike, such as targeted programs on social media and virtual programmed sessions with the KSMDT team. Source of Funding: None © 2021 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 206Issue Supplement 3September 2021Page: e618-e618 Advertisement Copyright & Permissions© 2021 by American Urological Association Education and Research, Inc.MetricsAuthor Information Wiktoria Milczynska More articles by this author Amy de Wolf More articles by this author Akhil Mohindra More articles by this author Tet Yap More articles by this author Expand All Advertisement Loading ...

Women’s Use of Self-Care Interventions for Endometriosis Pain in the United States

ObjectiveTo identify self-care interventions women living in the United States are using to manage endometriosis-related pain, describe frequency of use, and determine perceived effectiveness. DesignMixed-methods design with an online survey. SettingA survey link was posted on endometriosis support group Facebook pages. ParticipantsThe online survey was completed by 98 women living in the United States who were members of Facebook support groups. MeasurementsQuantitative measures included demographic and health-related characteristics; self-care intervention frequency of use and perceived effectiveness; knowledge, confidence, and support managing endometriosis symptoms; pain intensity; and quality of life (QOL) operationalized with the Endometriosis Health Profile–30. Descriptive statistics and correlation coefficients were used to analyze data. Qualitative perspectives were captured through open-ended questions and analyzed for themes. ResultsWomen used an average of 5.8 self-care interventions more than once per week. Heat, rest, over-the-counter pain medications, and diet changes were perceived as most effective, with >75% reporting at least slight improvement. Frequent use of multiple strategies was significantly correlated with worse scores for pain-related QOL (p < .01), all other QOL dimensions (p < .01), and less confidence in one’s ability to control symptoms (p < .05). Endometriosis pain management perspectives showed three themes: Daily Struggle With Mental and Physical Health, Lack of Knowledge and Understanding From Health Care Providers, and Lack of Understanding From Everybody Else. ConclusionThese results strengthen evidence for the effectiveness of heat, rest, and dietary changes for endometriosis-related pain and underscore an individual’s desire for support and understanding from health care professionals, family, and friends. Nurses can provide evidence-based self-care intervention teaching to help mitigate endometriosis-related pain, prevent adverse effects, and assist individuals in discovering what works for them. It is imperative that nurses deliver and advocate for well-informed, empathetic, and supportive care from all health care professionals.

Patient &amp; public involvement for inherited cardiac conditions

Abstract Funding Acknowledgements National Institute for Health Research OnBehalf King"s Health Partners Patient &amp; Public Involvement for Inherited Cardiac Conditions (PPIICC) group Background Inherited Cardiac Conditions (ICCs) affect up to 1:200 of the population and is the leading cause of sudden death in the under 40s. Research into developing interventions to support patients as they adjust to their diagnosis and genetic carrier status is underway; an example of which is the Psychoeducational Intervention Supporting patients with an ICC (PISICC) study. To ensure the appropriateness, acceptability and applicability of the intervention, patients and the public were involved in the development of PISICC intervention. Purpose To ensure the relevance and improve the quality of the PISICC study, Patient &amp; Public Involvement for Inherited Cardiac Conditions (PPIICC) group was organised to guide the research project as this progressed through the three phases of the Medical Research Council framework for developing complex interventions. Methods Utilising INVOLVE guidelines, the PPIICC group was initiated by the researcher by inviting patients and families attending a local ICC clinic, members of the patient support group, Cardiomyopathy UK; and members of the existing PPI group of the local biomedical research centre. Ground rules, terms of engagement and provisions for meetings such as rooms, reimbursements for transport costs, childcare and compensation for time was established. The PPIICC group met up to three times per year within a three-year period with electronic exchanges in between. Members gave individual feedback to draft study materials and their views shaped the final versions. A modified Delphi study was used for the development of the PISICC intervention model. Figure 1 illustrates the activities undertaken by the group. Results The involvement of the PPIICC group throughout the development of the PISICC intervention model has contributed to the successful recruitment of 32 participants and completion of the qualitative study in Phase 1. In Phase 2 the group had a crucial role in ensuring that the education component of the PISICC intervention included advice on medication and physical activity; and for the group component of the intervention to include a mixed age group to enable sharing of varied experiences. In planning for Phase 3, the PPIICC group helped ensure that the trial processes for the planned feasibility study were not burdensome to participants which supported its full ethical approval by the UK Health Research Authority. Conclusions Patients and their families played an important role in designing the PISICC study. So far, their involvement has resulted in reaching recruitment targets for Phase 1 of the study, the development of a patient-informed psychoeducational intervention model and feasibility study protocol.

Effectiveness of peer counseling and membership in breastfeeding support groups in promoting optimal breastfeeding behaviors in the Philippines

BackgroundThe prevalence of early initiation of breastfeeding and exclusive breastfeeding (EBF) at 6 months remain low in the Philippines. To help meet the 90% early initiation of breastfeeding target and to improve infant and young child feeding practices in the Philippines, the Millennium Development Goals - Fund 2030 Joint Programme (JP) on Ensuring Food Security and Nutrition for Children 0–24 months old was implemented. We aimed to determine the effectiveness of visits by peer counselors during pregnancy and after delivery, and membership in breastfeeding support groups in promoting these optimal breastfeeding practices.MethodsWe used data from the Endline Survey of the JP to study the effects of prenatal and postnatal peer counselor visits, and membership in breastfeeding support groups, and their possible interactions with initiation of breastfeeding within 1 hour of birth among children aged 0 to 24 months and EBF at 6 months among children aged 6 to 24 months, while adjusting for confounding. We used logistic regression methods for survey data to assess these associations.ResultsOf the 2343 mother-infant pairs, only 1500 (63.1%) practiced early initiation of breastfeeding. Of the 1865 children aged 6 months or older, only 621 (34.7%) were exclusively breastfed at 6 months. After adjusting for confounding variables, there was no strong evidence that peer counselor visits were associated with early initiation or EBF at 6 months. However, members of breastfeeding support groups had 1.49 times higher odds of early initiation of breastfeeding (95% CI [Confidence Interval] 1.12, 1.98) and 1.65 times higher odds of EBF (95% CI 1.20, 2.24) compared to those who were not members of breastfeeding support groups. There was no interaction between the different exposure variables and early initiation and EBF at 6 months.ConclusionsOur findings suggest breastfeeding support groups may be institutionalized to promote both early initiation of breastfeeding and EBF in the Philippines, while the role of peer counselors in promoting optimal breastfeeding behaviors should be further reviewed. Our suggestion to integrate non-healthcare professionals to promote early initiation of breastfeeding and EBF could be tested in future intervention studies.

A Multi-Centered Case-Control Study of Vitiligo Support Groups and Quality of Life.

There is limited research on the association between vitiligo support group membership and patient quality of life (QoL). To explore the association between support groups and QoL in those with vitiligo by evaluating and comparing the QoL of vitiligo support group members and non-support group members. Support group members (n=135) and non-support group members (n=129) were recruited from the Global Vitiligo Foundation (GVF), and three academic medical centers respectively. Patients completed the Vitiligo-Specific Quality of Life (VitiQoL) instrument and a demographic survey. Mean VitiQoL scores for support group members were higher than non-support group members (48.6 &plusmn; 23.6 vs 33.0 &plusmn; 23.8; P-value &lt; 0.0001), highlighting more negatively impacted QoL. Support group members were less likely to be undergoing treatment (27.4% vs 53.5%; P-value = &lt;0.0001) and were more likely to report duration of vitiligo for &gt;20 years (38.5% vs 19.4%; P-value = 0.0007). Vitiligo support group membership is associated with worse QoL. Individuals with vitiligo who have worse QoL, chronic, and/or untreated vitiligo may be more likely to seek out vitiligo support groups. Support group referral should be considered in the therapeutic management of vitiligo, particularly in patients whose QoL is more significantly impacted, who fail or are who are without access to treatment or have longstanding disease. J Drugs Dermatol. 2021;20(6):672-675. doi:10.36849/JDD.5706.

Needs of caregivers of children with cerebral palsy: A literature review

Background and objective: Cerebral palsy (CP) is the most common motor disability that affects two to three children per 1000 worldwide. Caregivers are most often parents of children with CP (CCP) who are responsible for providing primary care. Caregivers of CCP face multiple challenges, such as the manifestation of the disease and difficulty in providing daily care. They also have psychological, social, financial, and informational needs. These needs may be met through participation in support groups. The objective of this paper is to identify the needs of caregivers of CCP and how participation in support groups may meet those needs.Methods: A literature review was conducted to identify relevant articles on the needs of caregivers of CCP. Eleven articles published between 2008 and 2018 on caregivers’ needs were retrieved and their quality was assessed using the Mixed Methods Appraisal Tool. The data collected were analyzed to identify key themes related to caregivers’ needs.Results: Four key themes of caregivers’ needs were identified: informational, financial, social, and psychological. Support groups may help caregivers to meet their needs. As caregivers receive their needed support, they will able to improve their role in providing a high quality care for their children.Conclusions: Caregivers of CCP have informational, financial, social, and psychological needs which may be met by membership in support groups. Support groups may potentially increase caregivers’ knowledge, receive the needed support, decrease their level of stress, and improve their quality of life.

Congress 2021

Events like the 2021 BSAVA Congress couldn’t happen without the dozens of members who give their time to help its officers and staff to plan and run the biggest small animal CPD event in the world. This year, of course, there was the additional challenge of organizing a meeting conducted entirely online. Four members of this essential support group reflect on their experiences of what they sincerely hope will be a unique event in the Association’s history.

Order out of chaos? Autism spectrum disorder coordinators' impact on service delivery in New Zealand.

To evaluate the impact of autism spectrum disorder (ASD) coordinators (ASDCs) on key aspects of the experience of obtaining an ASD diagnosis and post-diagnostic supports in New Zealand. Members of New Zealand ASD parent support groups were surveyed. Of 516 parents, 41.3% had seen an ASDC. The majority were satisfied. Parents who saw ASDCs pre-diagnosis were more likely to be satisfied with the diagnostic process (p = .04) and saw fewer professionals before receiving a diagnosis (p = .04). Parents who had seen ASDCs post-diagnosis were more likely to be satisfied with post-diagnostic supports (p < .001) and their coordination (p < .001). ASDCs are well regarded by parents and improve key aspects of the process of obtaining an ASD diagnosis and post-diagnostic supports. Given the particularly low rates of parent satisfaction with post-diagnostic supports (23%) and their coordination (19%), ASDCs may be of most value when employed post-diagnosis to assist parents in navigating key supports and co-developing comprehensive individualised care plans.

Dravet Syndrome-The Polish Family's Perspective Study.

Aim: The aim of the paper is to study the prevalence of Dravet Syndrome (DS) in the Polish population and indicate different factors other than seizures reducing the quality of life in such patients. Method: A survey was conducted among caregivers of patients with DS by the members of the Polish support group of the Association for People with Severe Refractory Epilepsy DRAVET.PL. It included their experience of the diagnosis, seizures, and treatment-related adverse effects. The caregivers also completed the PedsQL survey, which showed the most important problems. The survey received 55 responses from caregivers of patients with DS (aged 2–25 years). Results: Prior to the diagnosis of DS, 85% of patients presented with status epilepticus lasting more than 30 min, and the frequency of seizures (mostly tonic-clonic or hemiconvulsions) ranged from 2 per week to hundreds per day. After the diagnosis of DS, patients remained on polytherapy (drugs recommended in DS). Before diagnosis, some of them had been on sodium channel blockers. Most patients experienced many adverse effects, including aggression and loss of appetite. The frequency of adverse effects was related to the number of drugs used in this therapy, which had an impact on the results of the PedsQL form, particularly in terms of the physical and social spheres. Intensive care unit stays due to severe status epilepticus also had an influence on the results of the PedsQL form. Conclusions: Families must be counseled on non-pharmacologic strategies to reduce seizure risk, including avoidance of triggers that commonly induce seizures (including hyperthermia, flashing lights and patterns, sleep abnormalities). In addition to addressing seizures, holistic care for a patient with Dravet syndrome must involve a multidisciplinary team that includes specialists in physical, occupational and speech therapy, neuropsychology, social work.

A comparative study of pattern of HIV status disclosure among people living with HIV in peer support and non-support groups in Enugu, Nigeria

Introduction Disclosure of HIV status has been proven to be useful for prevention and care of PLWHIV. Methods A comparative cross sectional study among 300 PLWHIV who are peer support group users and non support group users. Results Voluntary disclosure rates to members of one’s social network in peer support and non-peer support group members was found to be 124 (82.7%) and 117 (78.0%) respectively. Voluntary disclosure to current sexual partners was higher in PLWHIV who were not members of peer support groups. For peer support group members, their main motivator for disclosure was to receive support while for those who were not members, it was to prevent spread of infection. The preferred method of disclosure to sexual partners in both groups was the passive notification method Conclusion The pattern of HIV status disclosure differed in participants in both groups. Therefore, when facilitating disclosure this should be taken into consideration.

Recovery from COVID-19: a sprint or marathon? 6-month follow-up data from online long COVID-19 support group members.

BackgroundIt remains unknown whether and to what extent members of online “long COVID” peer support groups remain symptomatic and limited over time. Therefore, we aimed to evaluate symptoms in members of online long COVID peer support groups up to 6 months after the onset of coronavirus disease 2019 (COVID-19)-related symptoms.MethodsDemographics, symptoms, health status, work productivity, functional status and health-related quality of life were assessed about 3 and 6 months after the onset of COVID-19-related symptoms in members of online long COVID peer support groups.ResultsData from 239 patients with a confirmed COVID-19 diagnosis (83% women; median (interquartile range) age 50 (39–56) years) were analysed. During the infection, a median (interquartile range) of 15 (11–18) symptoms was reported, which was significantly lower 3 and 6 months later: 6 (4–9) and 6 (3–8), respectively (p<0.05). From 3 to 6 months follow-up, the proportion of patients without symptoms increased from 1.3% to only 5.4% (p<0.001). Patients also reported a significantly improved work productivity (work absenteeism and presenteeism: 73% versus 52% and 66% versus 60%, respectively), self-reported good health (9.2% versus 16.7%), functional status (mean±sd Post-COVID-19 Functional Status scale: 2.4±0.9 versus 2.2±1.0) and health-related quality of life (all p<0.05).ConclusionAlthough patients with confirmed COVID-19, who were all members of online long COVID peer support groups, reported significant improvements in work productivity, functional status and quality of life between 3 and 6 months follow-up, these data clearly highlight the long-term impact of COVID-19, as approximately 6 months after the onset of COVID-19-related symptoms a large proportion still experienced persistent symptoms, a moderate-to-poor health, moderate-to-severe functional limitations, considerable loss in work productivity, and/or an impaired quality of life. Action is needed to improve the management and healthcare of these patients.

Stressed? Depressed? You are not alone

Many physicists find that establishing work–life balance is crucial to battling the COVID-related stresses of isolation, low productivity, and despondency.

Sandtray Therapy for Cancer Patients, Survivors, and Family Members

Over one million survivors have lived more than 25 years after receiving a cancer diagnosis. Researchers proposed employing sandtray therapy as an effective means of exploring the lived experience of cancer patients, survivors, and family members. Three of five support group members participated in the research study. Sandtray therapy provided the participants with the power to increase their understanding about themselves, in addition to experiencing the resilience of achieving wellness. Participants used sandtrays to depict their lived experience, discover essential phenomena, and explore resilience.