ABSTRACT
Aims The study aimed to examine the nature and outcomes of social support for the well-being and quality of life (QoL) of adults with epilepsy. Methods The Australian Epilepsy Longitudinal Survey's 5 th Wave included the Medical Outcomes Study Modified Social Support Survey on four dimensions of social support and the QOLIE-31. Both numerical data and open-ended responses were analyzed quantitatively and qualitatively. A mixed method was used where quantitative analysis used t -tests, analysis of variance and block recursive regression, and qualitative analysis identified themes. Results Three-hundred thirty-two people with epilepsy (PWE) participated. The quantitative component showed that for emotional/informational support being older and living alone were key factors. These as well as household income were important in tangible support. For affectionate support living alone and household income were factors, but only income was a factor for positive social interaction. In addition, only positive social interaction predicted increased QoL. In the qualitative component of the study both positive and negative supports were identified for the emotional/informational supports. Many reported the benefits of having information, although some reported failure to have their needs taken seriously by health professionals or epilepsy associations. Inability to drive was an important feature of negative tangible support as was finding some assistive services unaffordable. Reports of positive social interaction identified being accepted as a person with epilepsy that is the primary concern. Peer support plays a role here. Discussion The findings of factors affecting the four dimensions of support in this study have supported a number of studies. This includes the effects of positive social interaction on QoL. The qualitative analysis supports these results, but it also contributes to deeper understanding of support in the lives of PWE. Conclusion Social support is a particularly important issue for PWE. The results of this study demonstrate the complexities and benefits of obtaining the appropriate forms of support. This survey took place before the coronavirus disease 2019 pandemic and it may well be that this phenomenon affects PWE's support needs. Copyright © 2023. Indian Epilepsy Society. All rights reserved.
ABSTRACT
Our charity's mission is dedicated to beating blood cancer by funding research and supporting those affected. Since 1960, we have invested over 500 million in blood cancer research, transforming treatments and saving lives. Since 2015 there has been a Support Services team within the charity. This service was established to provide information that the blood cancer community can trust, in a language they can understand. By connecting and listening to our community they deepen our understanding and help shape our work. Research suggests that blood cancer patients are more likely than any other patients to leave their diagnosis appointment feeling they do not fully understand their condition. Our service can often consolidate the information given by clinicians. Patients also need advice and support on how to adapt to day-to- day life after their diagnosis. There are challenges that are unique to blood cancer, such as living with cancer as a chronic condition, being on 'watch and wait' or fluctuating remissions and relapses. In 2023 the Support Services team have a 7 day presence on our phone line, email and social media platform where people can communicate with one of our trained blood cancer support officers, or one of three Registered Nurses, all who can provide information about blood cancer diagnosis and help with emotional and practical support. We also run an online community forum where people affected by blood cancer can connect, share experiences and provide peer support. The highly experienced haematology nurses provide a clinical aspect to the support of the Blood Cancer Community that enhances the established patient centred support given historically by the charity. The nurses advanced knowledge and experience of haematological cancers, treatments, side effects, holistic care and NHS process can further guide the community. This is in addition to the invaluable information from their treatment teams. In 2023 the Support Services team are now reaching thousands of the blood cancer community. We understand that in the past 3 years the COVID-19 pandemic and the work of our charity around this will have influenced the significant increase in contacts but equally the robust and trusted services provided through this charity has contributed too.
ABSTRACT
OnTrackNY is a nationally recognized Coordinated Specialty Care model disseminated across New York state for young people experiencing early non-affective psychosis. OnTrackNY is a network of 22 teams located in licensed outpatient clinics, serving over 2500 individuals. OnTrackNY offers medication management, case management, individual and group cognitive behaviourally oriented therapy, family support and psychoeducation, supported employment and education, and peer support services. Teams receive training for implementation through an intermediary organization called OnTrack Central. OnTrackNY was selected as a regional hub of the National Institute of Mental Health Early Psychosis Intervention Network (EPINET), a national learning healthcare system (LHS) for young adults with early psychosis. This symposium will present the different ways in which EPINET OnTrackNY implemented systematic communitybased participatory processes to ensure robust stakeholder involvement to improve the quality of OnTrackNY care. Florence will present results of an assessment of stakeholder feedback experiences used to develop strategies for assertive outreach and engagement of program participants, families and providers. Bello will present on mechanisms for integrating of co-creation principles to design, develop and execute quality improvement projects in EPINET OnTrackNY. Stefancic will present on quality improvement projects that used rapid cycle qualitative methods, tools, and strategies to build team capacity and flexibility to respond to an LHS. Montague will present adaptations to OnTrackNY services during the COVID-19 pandemic using an implementation science framework. Finally, Patel will lead a discussion on the implications of involving individuals with lived experiences in all phases of the process to maximize learning in an LHS.
ABSTRACT
Objectives: The nursing care is more complex in relation to new technologies, new diseases, new globally emergencies. In relation to technology, nurses acquired more competences in relation to advanced therapy, in respiratory, circulatory, and renal support. The nursing workload increases in complexity and in responsibilities, without a staff increasing in relation to nursing activities. ECMO was widely applied to manage acute respiratory distress syndrome and circulatory failure, in case of cardiac arrest or cardiogenic shock, configuring as a therapy bridge to decision, to restore, to transplant or to nowhere. During the last years, nurses were involved to a rapid and continuous changing, to respond adequately to new health challenges, understanding or not their role and responsibilities in globally health care system. Nurse manages different variables, well represented by nursing activities score, but in nursing ECMO care, these variables are more complicated, in relation to ECMO device and to ECMO patient. What is the globally perception of nurses involved in ECMO care? Methods: A literature review was applied on PubMed. The inclusion criteria were all articles about ECMO, including pediatric and/or adult population, with a publication less than ten years. Result(s): A total of sixteen articles were found, with reduction to ten for relevance. The excluded articles talked about non ECMO care or patient;s perceptions. Articles included in the research talk about nursing perceptions (40%), education (30%), ethics in ECMO care (20%), professional experience in ECMO Covid (10%). Conclusion(s): The nursing perception on ECMO nursing care are different. They recognize the central role in ECMO care, but over workload, without staff increasing, less peer support, a low teamwork and personal differences in technical and non-technical skills increase some barriers to nursing perception of themselves. Nurses allocate their competence on experience and continuous training, but also a good teamwork and a professional recognition by other health care professions or by nursing supervisors can increase nursing perception and reduce the abandonment of nursing profession.
ABSTRACT
Objectives: To investigate radiation therapists' perceptions of participating in peer group supervision (PGS) and the effects of the COVID-19 pandemic on PGS. Method(s): Radiation therapists were introduced to PGS at an in-service facilitated by an employee assistance program representative. Nine volunteers were then placed into one of two PGS groups of similar experience levels. Groups met monthly for PGS sessions;and after six and 12 meetings each participant was sent a link to the 14-item Clinical Supervision Evaluation Questionnaire (CSEQ),1 three open-ended and three demographic questions. The study used both quantitative and qualitative methods. Result(s): Survey completion rates were 8/9 (88.9%) pre- and 6/7 (85.7%) post-COVID-19. Analysis of the CSEQ revealed that pre-COVID-19 seven participants (87.5%) and post-COVID-19 five participants (71.4%) had a positive experience with PGS. One (12.5%) and two (28.6%) participants pre- and post-COVID-19, respectively, stated that their experience was neither positive nor negative. The thematic data showed that the participants perceived PGS to assist with (i) feeling supported at work, (ii) developing an element of trust between group members, (iii) encouraging self-reflection, (iv) fostering an awareness of others, and (v) increasing problem-solving skills. Restrictions due to the COVID-19 pandemic led to fewer regular meetings, which had a negative impact on participants. Conclusion(s): Involvement in PGS within a radiation therapist setting has reportedly positively affected those involved. Regular access to a supportive, trusting team has enabled the participants to self-reflect and better troubleshoot work-related experiences.
ABSTRACT
Aims: Peers4Rs (Remembering Resilience, Respect and Recovery) was established within the Early Psychosis Intervention Programme (EPIP) in 2010 to promote client advocacy and recovery. Despite recommendations for peer support in early intervention services, there is a general lack of research on its impact. Current research evaluating peer support are heterogeneous in relation to interventions and outcomes, limiting research quality. This exploratory study aims to evaluate oneto- one peer support intervention on recovery processes in people with early psychosis in Singapore, during the COVID-19 period. Method(s): Data from 26 clients with first-episode psychosis (FEP), aged between 15 and 44 years, who were accepted into the service between 2021 and 2022, was included in the analysis. One-to-one peer support intervention was delivered over phone/video call or inperson by certified Peer Support Specialists (PSSs). The 22-item selfreport Process of Recovery Questionnaire (QPR) was administered at pre- and post-intervention. Paired-sample t-test was run. Result(s): Pre- and post- scores were compared before and after completing the one-to-one peer support intervention. On average, post scores (M = 62.77, SD = 7.60) were higher than pre scores (M = 49.31, SD = 12.07). This improvement, 13.46, 95% CI [9.26, 17.67], was statistically significant, t (25) = 6.59, p < .001, Cohen's d = 1.34. Conclusion(s): Based on preliminary results, clients with FEP grew in their recovery process through the one-to-one peer support intervention in EPIP. This finding is promising, given small sample sizes and limits in mode of contact during the pandemic, lending support to further discussions.
ABSTRACT
Aims: Accessibility and engagement to high quality non pharmacological interventions for First-Episode Psychosis individuals (FEP) is hindered by different factors such as patients motivation, clinical time, lack of adaptation to patient needs. Taking into account patients' preference in the design in an individualized treatment plan as well as challenges faced by this particular patient, and his specific context/ environment can possibly enhance patient satisfaction and engagement. Technology can help to both standardized and individualize intervention to maximize the proposed services impacts. Method(s): This symposium explore how different technological tools can assist both clinicians and patients in enhancing patient experience of care First, the technokinpep, an innovative telekinesiology project offered by a peer support worker in multiple early psychosis services simultaneously, maximized accessibility of physical activity during the COVID-19 pandemic, social distanciation requirements. Second, Ocean empire, a mobile app aimed at improving physical activity motivation and affect in early psychosis. With this study, this presentation will shed light on the development and implementation of this mobile app. Third, exercise your wau used a mobile app to tailor the physical activity intervention program to the patients preferences and needs. Finally, the Freedom app gives the duo patient-clinicians a tool to facilitate shared decision making to enhance the therapeutic relation. Result(s): These different technologies can enhance patient and clinicians experience of collaborative and tailored adapted treatment. Conclusion(s): The development of new technology can help improving care by adapting it to better individual's needs.
ABSTRACT
Background: The Voluntary and Community Sector (VCS) is a vital partner in delivering care and support needs: enabling vulnerable people to live fulfilling, independent lives;helping them maintain good health and wellbeing. People living with HIV are disproportionately impacted by poverty, financial instability, stigma and discrimination, all of which were exacerbated during the COVID-19 pandemic. Pre-pandemic, this small HIV support organisation (part of the VCS) provided community, food, friendship and peer-support for people living with or affected by HIV, primarily via a weekly lunch club and monthly supper. This qualitative impact study explored clients' experiences of the change in service provision (eg food collection, doorstep food delivery, and companionship telephone calls) as the organisation adapted to members' needs during lockdowns and as restrictions altered. Method(s): Nineteen clients gave informed consent and participated in a facilitated in-person focus group. Two groups (n=10 and n=9) were held concurrently in June 2021 (after the second lockdown, but before all COVID restrictions were lifted). Focus groups lasted 60-90 minutes, with semi-structured interview question guides to structure discussions;they were recorded and transcribed verbatim. Deductive thematic analysis was conducted using a coding procedure to identify patterns between the groups and emerging themes. Result(s): The following themes relating to clients' experiences of the pandemic and their engagement with the organisation emerged from the focus groups: * Pre-lockdown services * Loneliness * Regular food parcels * Telephone companionship calls * Value of non-judgemental space Pre-lockdown, participants valued peer support and sharing meals together. During the pandemic, some clients experienced food insecurities;some felt disconnected and socially isolated;some lost their jobs or retired. Clients trusted the organisation to keep them safe (eg social distancing), and the volunteers delivering food made them feel valued and connected to their peers. Telephone check-ins helped tackle loneliness and reassured those who were anxious or afraid. Conclusion(s): During the pandemic this organisation helped address stigma, food insecurities and social isolation experienced by people living with HIV. Participants appreciated the organisation's mission and commitment to people living with HIV, and how welcoming and supportive the service is.
ABSTRACT
Background: BHIVA Standards of Care for people living with HIV (PLWH) include quality statements and auditable outcomes for peer-support pathways to improve selfmanagement and engagement in care. FTCI London convened 3-year 'improvement collaborative' projects between HIV charities and NHS clinics. Chelsea and Westminster Hospital (CWHFT) supported the implementation of this initiative to 4 London HIV clinics with a cohort of >10,000 PLWH. We here illustrate the results of this initiative to date. Method(s): Positively UK, NAZ Project, Plus Health and CWHFT trialled approaches to integrating in-clinic peersupport pathways, with the aim of having >90% of those accessing peer-support retained in care, with a VL<50. 3 peer-supporters (2 FTE posts) received NHS honorary contracts, emails and the ability to log interventions within the Trust's EPR. Data on peer-support attendance and outcomes were collected from the EPR into an encrypted NHS database. Result(s): Although planned as an in-person initiative, the COVID-19 pandemic led to a shift to fully remote support and delayed project initiation to 7/2020, when email referrals commenced for newly diagnosed and those identified as being at risk of lost to follow up (LTFU). Referrals reached 4.4/month within the first 3 months. Initiatives such as MDT, focus group participation, staff teaching, and physical presence in clinics increased referrals to 7/month by 4/2021 and 12/month by 11/2021. Median patient age was 45 years (range 16-74), 13% were female, and 47% from BAME background (vs 34.5% in the CWHFT HIV cohort). Median diagnosis length was 2 years (<1-31). Moving from opt-in to opt-out support for newly diagnosed increased uptake of support from 33% in 4/2021 to 67% by 12/2021. Overall, 287 people (66% of referrals) engaged with peersupport between 7/2020 and 11/2022, with 164 (57%) receiving ongoing support. Virtual appointments moved from 100% to 54% over time. Rates of having a VL<50 increased from 71% at referral to 90% following peer-support, including new diagnoses. Conclusion(s): Implementing in-clinic peer-support pathways significantly increased referrals and uptake of support for new HIV diagnosis and those at risk of LTFU, showing the potential of improving clinical outcomes and quality of life of PLWH.
ABSTRACT
Background: Adolescent girls and young women are the epicenter of the global HIV epidemic and in need of multilevel interventions to improve their health outcomes. Method(s): FANMI, a randomized-controlled trial, evaluated the effectiveness of community-based cohort HIV care versus standard of care (SOC) among adolescent and young adults living with HIV (AYALH) in Haiti. Females, 16-24 years who were newly diagnosed with HIV at clinic or community HIV testing sites, or defaulted >6 months from care, were randomized 1:1 to FANMI vs SOC. FANMI was designed to improve convenience, social support and stigma by grouping AYALH in cohorts of 6-10 peers to attend monthly HIV care sessions in a community center with integrated clinical care, group counseling, and social activities led by the same provider. National guideline changes during the study included switching participants to dolutegravir regimens and expanding SOC visits to 6 months. The primary outcome was 12-month retention defined as any visit 9-15 months from enrollment. Secondary outcomes included viral suppression (< 1000 copies/ml), risk behaviors, and acceptability using interviews. Result(s): 120 AYALH enrolled (60 per arm) between May 2018-January 2021. Median age was 21, 91% were newly diagnosed, and median CD4 count was 591 cells/mm3 (IQR 399-788). A total of 78.3% (47/60) FANMI participants vs 85.0% (51/60) in SOC achieved the primary outcome (unadjusted RR=0.92 95%CI 0.78-1.09, p=0.35). Excluding 9 participants who never attended a FANMI/SOC visit after enrollment, 12-month retention was 88.7% (47/53) in FANMI vs 87.9% (51/58) in SOC (RR =1.01 95%CI 0.88-1.15, p=0.90). Participants who presented for HIV testing vs community testing and achieved the primary outcome: 95% vs 70% (FANMI) and 83% vs 88% (SOC). Viral suppression among those retained at 12 months: 44.6% (21/47) in FANMI and 37.3% (19/51) in SOC (RR 1.20 95% CI 0.74-1.9, p=0.45). There were no differences in pregnancy and risk behaviors. Providers preferred FANMI reporting increased time for counseling and peer support. FANMI participants reported high acceptability, decreased stigma, and increased social support with no confidentiality breaches. Limitations included interrupted study operations during the COVID-19 pandemic. Conclusion(s): FANMI was not more effective for AYALH in Haiti but was preferred by providers and highly acceptable to participants. It offers promise as a complementary program for high-risk AYALH in low-income settings facing barriers to clinic-based care.
ABSTRACT
Introduction: Working on the intensive care unit (ICU) exposes staff to the suffering of patients and their families as a consequence of devastating illnesses and injuries, often leading to psychological trauma. The COVID-19 pandemic has amplified pressures on healthcare staff, resulting in deteriorating mental health and increased incidence of stress and burn out. The Intensive Care Society (ICS) has placed emphasis on peer support to combat this;recognising that working in a 'psychologically safe' environment improves wellbeing, enables safe and compassionate care, and reduces mistakes [1]. The aim of peer support is to improve wellbeing by offering a systematic, strategic approach to sustain staff who are coping well and provide initial support to those who are struggling. Method(s): Staff who have undertaken ICS training, under the supervision of a clinical psychologist, facilitate fortnightly meetings open to all ICU trainees. They also act as an initial contact to provide advice and guidance on addressing the psychological difficulties highlighted above. An anonymous screening questionnaire at the start of each session allows a moment of reflection for trainees prior to discussion. This, in addition to anonymous feedback, provides qualitative data to both audit the programme and inform improvement. Result(s): Participation in peer support is voluntary, nonetheless attendance at meetings has been excellent. Initial qualitative results indicate that most trainees feel 'nervous, anxious or on edge', 'question their capability at work' and are 'unable to stop thinking about work/a significant event at work' at least a few days per week. Feedback from trainees regarding the programme has been intensely positive. Conclusion(s): Anxiety and stress are high amongst ICU trainees which can lead to psychological harm if not addressed. Engagement from trainees in our programme has been good and feedback positive, emphasising the need for peer support in the ICU.
ABSTRACT
Background: As a quality service improvement response since elexacaftor/ tezacaftor/ivacaftor (ELX/TEZ/IVA) became available and the yearly average number of cystic fibrosis (CF) pregnancies (n = 7 pre-2020, n = 33 in 2021) increased significantly at an adult CF center (~600 people with CF), a monthly multidisciplinary CF-maternal health virtual clinic was established with antenatal virtual CF exercise classes dedicated to providing adaptive, specialist support to this cohort, aswell as outreach guidance and education to local obstetric teams. Method(s): This was a single-center retrospective reviewof Royal Brompton Hospital CF-Maternal Health multidisciplinary team clinic records and a patient survey from March 2020 to March 2022. Result(s): Of 47 pregnancies in 41 women (median age 30;) eligible for ELX/ TEZ/IVA at start of pregnancy, 40% (n = 19) were unplanned, and 19% (n = 9) used assisted conception. Three women with a history of infertility conceived naturally, having required assisted conception for previous pregnancies, and five women had multiple pregnancies during the study period. ELX/TEZ/IVA was continued in 60% (n = 28), delayed in 28% (n = 13), and stopped in 13% (n = 6) of pregnancies through maternal choice and careful clinical counselling. Pre-pregnancy pulmonary status was poorer in women who continued than in those who delayed or stopped (Table 1). Of those who stopped, 85% (n = 5) restarted because of pulmonary deterioration by the third trimester. Prenatal CF complications included at least one episode of minor hemoptysis in 21% (n = 9/41) of women, at least one infective exacerbation in 55% of pregnancies (n = 26/47), and noninvasive ventilation in one woman. Other pregnancy-associated complications included one case of ovarian hyperstimulation syndrome, one case of sub-segmental pulmonary embolism, and two cases of pregnancy-induced hypertension. Excluding 10 first trimester terminations, 10 current pregnancies, and one patient relocation, obstetric outcomes available for 26 pregnancies confirmed a live birth rate of 85% (n = 22/26) and a 15% first-trimester miscarriage rate (n = 4). Obstetric complications included preterm delivery rate of 23% (n = 6/26), including two cases of COVID infection resulting in two neonatal intensive care unit admissions, one case of endometritis after cesarean section, and a fourthdegree perineal tear. There were no ectopic pregnancies, maternal or neonatal deaths, or reports of infant cataracts or congenital malformations. Median gestational age was 37/40 weeks (range 29-40). Mode of delivery was via cesarean section in 45% (n = 10/22, of which twowere emergency) and vaginal in 55% (n = 12/22), of which 83% (n = 10/12) were via induction of labor for diabetes (CF or gestational) indication. Deliveries were supported and occurred equally at local obstetric units and in tertiarycare obstetric hospital settings (50%, n = 11/22). Patient-experience survey responses cited high levels of confidence in health optimization and prioritization during pregnancy and praised excellent inter-health care provider communication and peer-to-peer emotional support provided among expectant mothers in the virtual prenatal exercise groups. Table 1. Baseline demographic and clinical characteristics of elexacaftor/tezacaftor/ivacaftoreligible expectant mothers according to therapeutic decision (Table Presented) Conclusion(s): In the absence of clinical trial safety data, the novel approach of a dedicated CF-maternal health multidisciplinary team clinic with local obstetric outreach support has ensured regular specialist clinical and emotional peer-to-peer support for this cohort of women eligible for ELX/ TEZ/IVA to ensure optimal outcomes and experiences of their pregnancies, where appropriate, close to home.Copyright © 2022, European Cystic Fibrosis Society. All rights reserved
ABSTRACT
Introduction: Cancer support groups provide valuable peer support for patients, carers and families. Lung cancer is the biggest cause of UK cancer deaths, but few local support groups exist due to patients' social vulnerabilities and stigma. A need was identified for a support group in Bromley, South East London. The COVID pandemic provided additional challenges to meet and support others. Method(s): The group was initiated by patients and the lung Clinical Nurse Specialist (CNS). Patients and relatives were invited to participate in a "lung cancer awareness" hospital stand. Sharing experiences was hugely beneficial leading to a regular meeting outside hospital. Patients established aims to provide: A voice for people living with lung cancer A sense of community, belonging and purpose A reason for hope The group is inclusive to patients, families and bereaved relatives. It survived the pandemic as an online community. Result(s): Every breath support group has been invaluable and feedback highlights the importance of a safe space to be understood. It successfully achieved its aims and continues to grow, with over 60 active members. It is recognised as the Bromley Mayors Charity of the year. Group members provide patient representation to local NHS Integrated Care Networks, and patient perspectives educating health professionals. Examples of group member feedback: "Every Breath has been like a family to me... This group have helped me find peace in the unknown." "Lung Cancer is the dirty cancer ... we are here to help support those in need and ... to change the perception of Lung Cancer" Conclusion(s): Every Breath support group offers a model for lung cancer support. Patients and CNS team have reached out to other areas to support establishing groups. Peer support has huge psychosocial benefits and should be available to every lung cancer patient and their family. Disclosure: No significant relationships.Copyright © 2023 Elsevier B.V.
ABSTRACT
The proceedings contain 208 papers. The topics discussed include: social media use in young adult cancer survivors: a phenomenological approach to understand young adult cancer survivors' experience;creative coping programs to reduce symptoms of psychological distress and build feelings of connection among young adult cancer patients and survivors;engaging AYAs by meeting them where they are: development of an annual AYA Cancer Summit;reconnection in a post-covid world: leveraging social and peer support for young adults with cancer;social isolation and social support among young adult vs. older adult cancer survivors during one year of the COVID-19 pandemic: a propensity score matched analysis;financial concerns in parents who lost a child to cancer;caregivers' reactions to emerging stress biomarkers: a potentially innovative approach to increasing engagement with support;and closure is a myth: the importance of recognizing and managing grief in psycho-oncologists.
ABSTRACT
Background/Purpose: Young adults with cancer (YAs), ages 18-39, often feel "stuck": they do not identify with children in pediatric clinics, nor older adults in medical oncology. YAs have unique psychosocial challenges that create significant disruptions. At a stage where peers are the primary social support, YAs express feelings of isolation and yearning for normalcy, especially on the heels of the COVID-19 pandemic. To combat this isolation, social programs are only offered to patients under age 18, leaving a gap in YA support. Without opportunities to connect with others who understand similar experiences, YAs lose essential access to informal peer support that could drastically shape their coping. Method(s): The Young Adult Program at Dana-Farber Cancer Institute planned and implemented two in-person social events to connect the YA community outside of hospital walls. Event 1: Patients with metastatic cancer were invited with one guest to attend an MLB baseball game in a private suite. Event 2: Patients were invited with one guest to attend an outdoor fall Block Party *at a local food hall. Each attendee received a favor bag of items to encourage emotional well-being. Access barriers were lowered by covering costs of food/ beverage, parking, and offering handicap accessibility options. Result(s): Attendance at both events exceeded expectations, with 15 individuals (8 patients, 7 caregivers) at event 1 and 74 individuals (42 patients, 32 caregivers) at event 2. Some YAs decided to attend alone, signifying a strong desire to connect with others outside existing social circles. Inviting caregivers provided the experience of meeting other caregivers and normalized cancer's impact on the family. Post-event comments included: "I never knew there were so many YAs";"We were so happy to meet other wonderful examples of strength! It really comforted us so much.thank you for helping us cope!";"Everyone was so relaxed and happy". Conclusions and Implications: These programmatic events highlight the benefit of social opportunities for YAs and caregivers. Spending time together in-person outside of the medical setting allows YAs to build meaningful connections and reduce loneliness. Future endeavors for YAs ought to acknowledge the gaps for this age group by implementing programs that meet YAs where they are in their life stage and cancer experience.
ABSTRACT
Outcomes: 1. Explore the ways that palliative and mental health providers can collaborate to offer a novel, interdisciplinary wellness curriculum. 2. Evaluate impacts of a wellness course on secondary trauma, self-compassion, and burnout. Background(s): Palliative care and mental health providers possess skill sets that, when combined, can uniquely foster the well-being of colleagues within and beyond our specialties. The need for such peer support has become more urgent during the COVID pandemic. Self-care, compassion satisfaction, and trauma-informed training have been positively associated with an ability to cope with stressors in healthcare. We designed a 2-week GME elective intended to increase self-compassion and connection and reduce secondary trauma and burnout. Description: The course has been offered annually since 2019 to cohorts of 12-15 trainees across 14 specialties. Trainees participated in-person (2019, 2021) and virtually (2020). Coursework includes psychological safety, burnout/suicide prevention, self-compassion, occupational trauma and recovery, expressive art, medical error, cultural humility/upstanding, narrative medicine, conflict resolution, mindfulness, and others. We sought to evaluate the impact of the elective on burnout, self-compassion, and secondary trauma using the Professional Quality of Life (PROQOL) survey in the 2021 cohort. We evaluated trainee satisfaction with the course in all three cohorts (2019-2021). Result(s): 1 month after the elective, trainees reported a reduction in secondary trauma (p<0.0001) and an increase in self-compassion (p<0.005). The effect on burnout was not significant (p=0.57). Over 3 years, 100% of trainees (n=43) strongly agreed that the course was worth their time. Participants reported the course gave them "skills to better tolerate distress about things I cannot change" as well as self-agency through connection: "My peers helped me find new power that I didn't know I had." Conclusion(s): We generated a curriculum that impacted self-compassion and secondary trauma. We did not see an effect on burnout, which could be related to returning to an unchanged stressful environment following the course. Expanding access to this curriculum would afford opportunities to assess impact on a larger scale.Copyright © 2023
ABSTRACT
We previously reported on our experience of an in-person Scottish Photobiology Service (SPS) patient engagement event in 2019 and of its utility in defining what matters to patients with photosensitivity. We identified key issues with delays in referral from primary care, lack of availability of peer support and a need for disease-specific information to raise awareness of photosensitivity for family and employers. Through a follow- up workshop, we identified a workstream of activities planning to address these issues, which were modified by the subsequent COVID-19 pandemic. However, we successfully moved our programme to a virtual platform, and we report on our progress. Twice-yearly virtual TEAMS patient engagement half-day events, attended by patients and staff, provided patients with a forum to discuss with each other issues that they have identified as being important to them. These ranged from the isolation, anxiety and embarrassment associated with photosensitivity, dealing with friends who do not understand their condition, through to coping mechanisms and practicalities, such as sourcing sun protective clothing, dealing with sports activities and photoprotective measures in schools. The virtual events have received extremely positive feedback both in terms of content and utility for patients, as well as the convenience of the virtual format. To supplement these activities, we have also distributed twice-yearly SPS newsletters since 2020, initiated at the start of the COVID-19 pandemic, to ensure our patients knew we were there for them, despite the challenges of the pandemic and, again, this was most positively received. Regarding delays in referral from primary care, patient feedback indicated that this was mainly due to not being taken seriously, possibly due to a lack of understanding of photosensitivity in community care. We are addressing this by developing a 'photosensitivity red flag' poster for distribution throughout primary care in Scotland to raise awareness of the symptoms to look out for in photosensitivity conditions. Finally, we have also embarked on creating a series of diseasespecific podcasts. These involve an informal discussion between a patient with photosensitivity and a consultant photodermatologist, with a mediator present, to raise awareness of the true impact of a range of photodermatoses on many aspects of life. We demonstrate this ongoing programme of diverse patient engagement and educational activities in photodermatology, to highlight the model of a multifaceted hybrid approach to provide additional support for patients with photodermatoses. Acknowledgments: we wish to acknowledge all our SPS patients, their families and staff for their invaluable contributions.
ABSTRACT
The impact of the pandemic shifted the focus of global healthcare systems to treating and preventing COVID-19 infection. In October 2021 the World Health Organisation published a clinical case definition of Post COVID syndrome which included symptoms of post viral infection that had lasted for over 3 months which followed the work of patient led groups naming this condition Long Covid (Callard and Perego 2021). Globally more than 100 million people are living with prolonged symptoms of COVID-19 infection which is creating a huge demand on clinical services. Impact of Post COVID Syndrome: The symptoms of Post COVID syndrome are extensive, can fluctuate, be relapsing - remitting and can have a significant impact on an individuals activities of daily living including work. It was recognised by Greenhalgh et al (2020) that people with prolonged symptoms will require an interprofessional holistic assessment and a paced approach to recovery embracing self-management and peer support strategies. Personalised care approaches to Post COVID Care: The universal personalised care model embeds six evidencebased components of personalised care with well documented benefits in many conditions including asthma and COPD. These approaches must be embedded for people with Post COVID Syndrome and involve people with lived experience. Conclusion(s): Post COVID Syndrome can be a debilitating multisystem relapsing condition which needs a holistic, individualised, personalised approach to care.
ABSTRACT
Introduction: Psychological distress is common in people with aphasia, it causes avoidable suffering and impacts on healthcare outcomes and length of hospital stays. This pilot aimed to implement and evaluate a stepped psychological care approach for people with post-stroke aphasia in inpatient stroke rehabilitation. Method(s): A pathway was created to trial;[1] assessing mood using the Distress Thermometer [2] establishing goals to either improve or maintain mood, [3] creating an intervention plan in line with levels 1-2 of the stepped psychological care approach including mindfulness, behavioural activation, education, peer-group experience, and opportunities for mood discussion. Between June-September 2021, data was collected for all patients with aphasia admitted to the rehabilitation unit including Signs of Depression Screening Scale (SDSS) scores, and therapy assistant/researcher reflections. Result(s): Data was collected for nine patients;due to missing data five complete data sets were included. The pre-intervention median SDSS=3, and post-intervention SDSS=1. Reflection notes indicated positive feedback from two patients, increased rapport, greater role satisfaction, short term mood improvements within sessions. Several interventions were declined;mindfulness (3 patients), group/peer sessions (2 ), behavioural activation (2) and any mood intervention (3). Mood interventions had to be deprioritised at times due to workload. The COVID-19 pandemic also meant some activities were unavailable. Conclusion(s): This pilot showed that not all patients wanted to engage with specific or all mood interventions at this early rehabilitation stage. Further research is needed to establish which patients benefit from which intervention and at what stage it should be offered.
ABSTRACT
Significance and Background: Metastatic Breast Cancer (MBC) or Advanced Breast Cancer (ABC) is multifaceted and requires high levels of support and resource utilization. The ABC Program at MD Anderson Cancer Center began in 2014 with a goal to increase the quantity and quality of life for patients living with MBC. It offers emotional support, personalized visits with a nurse practitioner navigator, access to clinical trials, specialty clinics, tailored patient education and innovative care projects. Prior to COVID-19, the ABC Program held a 90-minute quarterly town hall series featuring 2-3 presenters and topics of patient interest. In response to COVID-19, it pivoted to a weekly virtual 60-minute educational series called "ABCs of Healthy Living in Challenging Times" that is for patients with breast cancer, caregivers, faculty, staff, community members and advocates. Purpose(s): To address COVID-19 social-distancing related isolation and changes to healthcare, build community, empower patients, and educate on diverse topics including patient services, treatment, symptom management and quality of life. Interventions and Evaluation: The series was facilitated by a nurse practitioner navigator via Zoom. A distribution list created from town hall meetings was the basis for the series' notices and has grown by referrals, word of mouth and marketing opportunities;it began with less than 150 people and has grown to more than 550 people. The facilitator offered a format where the attendees and speakers could interact visually and verbally with each other. From 4/2020 to 6/2022, 104 webinars were held for 2,546 attendees for an average of 24 attendees each week. Topics covered were side effect management/quality of life/healthy lifestyle (26%), patient education/empowerment (18%), treatment (19%), clinical trials/research (11%), quality of life related to COVID-19 (8%), COVID-19 (7%), innovation projects (4%), palliative/end of life care (7%), and financial/disability concerns (3%). The series was evaluated using the Qualtrics survey software (n=53). Respondents said that the series has positively influenced their interactions with healthcare providers (65%), how patients with MBC think about their cancer experiences (65%) and provided an opportunity to connect with others like themselves (65%). Respondents stated actions taken based on the series: shared the information with family/friends (77%), joined or remained in a support group (34%), spoke with a provider for information and services (32%), requested an appointment with the ABC Program or other specialty clinics (26%), started a new healthy behavior (21%), joined a clinical trial (11%), or started using a patient reported outcome tool (9%). The series served mostly patients living with MBC (70%), established patients at MD Anderson (38%) or patients at MD Anderson as well as a community cancer center (17%). Most respondents indicated that they attended about half of the time, usually or always (60%) and are very or completely satisfied with the series (92%). Demographics of the respondents were White (77%), Black (13%), Asian (4%) and Hispanic (16%). Discussion(s): The ABC Program pivoted to COVID-19 by offering services virtually. The virtual series has allowed for more digestible patient education, varied presentations, and participation for those living outside of Houston, TX. Peer support and continuing education are imperative dynamics for patients to use their voice to impact their overall quality of life. The series has impacted attendees with a change in behavior when speaking with their clinical team, awareness and utilization of support resources, and starting healthy behaviors. While the series was created in response to demands of COVID-19, it effectively addressed psychosocial and educational needs and overall quality of life of MBC patients. The series was an easy intervention to initiate with lasting changes relative to the effort and resources required.