Perspectives Of Survivors Research Articles

Self protective health care in childhood cancer survivors from the perspective of survivors, parents, and professionals: a qualitative study

IntroductionChildhood cancer survivors experience many health problems that they must protect themselves from their destructive physical and psychological effects. Understanding experiences of children about self-protective care will help health care providers manage long-term care plans. Therefore, this study was conducted with the aim of exploring self-protection care in childhood cancer survivors.MethodsThis is a phenomenological study that was conducted in the clinics and cancer care centers of Urmia and Khoy in Iran. 27 participants were selected by purposive sampling until data saturation. The data was collected using a semi-structured and in-depth face to face interview. Content analysis approach used for data analysis and MAXQUDA 10 software used for data management.ResultsData analysis led to the emergence of “self-protection health care” as a main category, two categories “maintaining physical health” and “keeping a strong mindset” and 9 sub-categories including “abstain activities that may cause harm”, “refusing contact with others for possible infection”, “monitoring symptoms and side-effects of cancer coming back”, “avoiding unhealthy diet”, “knowing about cancer from similar others”, “keep away negative thoughts and emotions”, “drawing on spiritual resources”, “creating a bridge to life again” and “being healthy for the sake of one’s family”.ConclusionAccording to the results of this study, self-protection is one of the most important cares for childhood cancer survivors. Over time, the influence of the clinical team and parents on children’s health care diminishes. Therefore, they should promote their health and well-being behaviors and use a variety of protective approaches to self-care.

Childbearing after treatment for obstetric fistula: perspectives from survivors in Malawi

Women who suffer from an obstetric fistula endure more than just physical pain. Their ability or desire to bear children may also be affected due to physical damage to their reproductive organs. In addition, they may suffer from emotional trauma which is likely to affect their decision to have children. The aim of this study therefore was to explore in more detail the perspectives of obstetric fistula survivors about childbearing after treatment for their condition. This qualitative study was conducted at a non-governmental organisation in the Central Region of Malawi. Data was collected using in-depth interviews from 18 women who had suffered from an obstetric fistula. The study revealed that many women either had no further desire for children or were unable to bear children. Fear of dying and resulting pain from the fistula surgery deter women from wanting further pregnancies. However, there was still strong emphasis placed on childbearing, especially for the younger women who desired children as a means of maintaining their marriages. The risk of further pregnancies and mitigation strategies for reducing obstetric fistulas, should be fully communicated to women. Those who become infertile as a result of obstetric fistula may also require appropriate counselling.

Abstract B126: Enhancing awareness to improve recruitment of African American cancer survivors to a randomized controlled trial of a diet and exercise intervention

Abstract Background: Increasing awareness about research may improve willingness of African American (AA) cancer survivors to participate in clinical trials. Unknown are what types of strategies, information, and perspectives, are best harnessed and then implemented. Methods: Using a factorial-design randomized trial we tested 8 Awareness Enhancing Interventions (AWEI) to recruit survivors to a web-based diet and physical activity clinical trial (AMPLIFY). In this trial, cancer survivors 50+ received a recruitment letter followed by a recruitment call which screened them for eligibility, if willing. AA cancer survivors were randomized to receipt of the recruitment letter only (control) vs. AWEI. The 8 AWEI delivered similar content but varied in strategy, information emphasis, and perspective: 1) Brochure (BR), research emphasis, survivor perspective, 2) BR, research emphasis, researcher perspective; 3) BR, study-specific emphasis, survivor perspective; 4) BR, study-specific emphasis, researcher perspective; 5) Research educator phone call (RE), research emphasis, survivor perspective, 6) RE, research emphasis, researcher perspective; 7) RE, study-specific emphasis, survivor perspective; 8) RE, study-specific emphasis, researcher perspective. The primary outcome, measured at the time of the AMPLIFY recruitment call, was willingness to be SCREENED for eligibility. Significant differences in the proportion screened by strategy, information emphasis, and perspective were tested using Chi-square tests. Results: 4,451 AA cancer survivors were randomized; 58% female, 53% 65 +, 69% 2+ years from diagnosis, 36% breast, 31% prostate and 33% other obesity-related cancers. Overall, AMPLIFY recruiters reached 38.4% (38% AWEI, 38% control) by phone. In intention to treat analyses, among those reached, 31.6% in AWEI (all combined) vs. 27.5% in control (p=0.140) were SCREENED. Within AWEI, SCREENED were 31.5% for RE vs. 31.7% for BR (p=0.335), 32.2% research vs. 31% study specific information emphasis (p=0.301), and 32.2% researcher vs. 30.9% survivor perspective (p=0.295). In the RE arm, educators were able to fully/partially deliver the AWEI to 24% survivors. Among them, 54.3% were reached by the AMPLIFY recruiter, and among them, SCREENED were 52.6% research vs. 50% study specific information (p=0.714), and 49.6% researcher vs. 52.7% survivor perspective (p=0.650). Conclusion: Research awareness-enhancing interventions did not increase the willingness of African American cancer survivors to be assessed for eligibility for a cancer research study. Although less feasible, interventions fully or partially delivered by research educators were more successful. To increase participation of diverse populations in research, while increasing awareness may be important, it may not be sufficient. Citation Format: Maria Pisu, Iman Omairi, Yu-Mei M. Schoenberger, Wendy Demark-Wahnefried,, Robert A. Oster, Jay H. Fowke, Michelle Y. Martin. Enhancing awareness to improve recruitment of African American cancer survivors to a randomized controlled trial of a diet and exercise intervention [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B126.

Abstract B120: Understanding Barriers and Facilitators Affecting Participation in Cancer Clinical Research Studies for Racially and Ethnically Diverse Populations in Rural North Carolina

Abstract Increasing representation of minoritized racial and ethnic populations in cancer clinical research studies has been declared a priority in the US for many years. Additionally, it is widely recognized that people living in rural areas of the US have limited access to cancer clinical research studies, and solutions are needed to extend participation opportunities to rural cancer patients. Underrepresentation of minoritized racial and ethnic populations and rural communities perpetuates health inequities, and solutions are needed to remove barriers and implement facilitators for participation. However, a review of existing literature found a lack of attention on the intersection of race and rurality and the needs and values of these populations as it pertains to cancer research. To address this concern, we used a sequential mixed method, community-engaged approach to explore the barriers and facilitators affecting participation in cancer clinical research from the perspectives of cancer survivors and their caregivers, as well as cancer healthcare professionals in rural North Carolina (NC). We used existing publicly available data to identify and characterize four of the most rural, racially and ethnically diverse, and medically underserved counties in NC. The principal investigator collaborated with cancer centers, churches, and American Indian tribal leaders in NC to administer surveys to cancer survivors and caregivers to assess their beliefs and experiences regarding cancer clinical research. Eligible participants included persons who had been diagnosed with cancer or a caregiver of someone diagnosed with cancer. In addition, we conducted key informant interviews with cancer health care professionals providing cancer care in the selected rural NC counties. We analyzed surveys and interview responses with descriptive statistics. Forty-three cancer survivors/caregivers completed surveys and twenty-two cancer healthcare professionals completed semi-structured interviews. Cancer survivors and caregivers indicated that the lack of invitation to participate in cancer clinical research was their greatest barrier to participation, whereas cancer healthcare professionals cited the lack of transportation as the perceived greatest barrier for patients. Cancer survivors, caregivers and healthcare professionals agreed that having support from clinical research personnel would be amongst the most helpful facilitators, along with opportunities to participate in clinical research studies close to home. Cancer healthcare professionals suggested the lack of trust in clinical research was a barrier for their patients; however, cancer survivors and caregivers in this study indicated lack of trust was not a significant barrier to their participation. Recommendations to address barriers and promote facilitators to participation in cancer clinical research include the importance of engaging the community, addressing unconscious bias, decentralizing clinical trials, and providing recruitment materials in culturally responsive formats. Citation Format: Amy Garrett, Karine Dubé, Lisa Spees, Ronny Bell, Marjory Charlot, Sandra Greene. Understanding Barriers and Facilitators Affecting Participation in Cancer Clinical Research Studies for Racially and Ethnically Diverse Populations in Rural North Carolina [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B120.

Exploring stroke survivors’ and physiotherapists’ perspectives of the potential for markerless motion capture technology in community rehabilitation

IntroductionMany stroke survivors do not receive optimal levels of personalised therapy to support their recovery. Use of technology for stroke rehabilitation has increased in recent years to help minimise gaps in service provision. Markerless motion capture technology is currently being used for musculoskeletal and occupational health screening and could offer a means to provide personalised guidance to stroke survivors struggling to access rehabilitation.AimsThis study considered context, stakeholders, and key uncertainties surrounding the use of markerless motion capture technology in community stroke rehabilitation from the perspectives of stroke survivors and physiotherapists with a view to adapting an existing intervention in a new context.MethodsThree focus groups were conducted with eight stroke survivors and five therapists. Data were analysed using reflexive thematic analysis.ResultsFive themes were identified: limited access to community care; personal motivation; pandemic changed rehabilitation practice; perceptions of technology; and role of markerless technology for providing feedback.ConclusionsParticipants identified problems associated with the access of community stroke rehabilitation, exacerbated by Covid-19 restrictions. Participants were positive about the potential for the use of markerless motion capture technology to support personalised, effective stroke rehabilitation in the future, providing it is developed to meet stroke survivor specific needs.

Survivors of Modern Slavery and Their Digital Inclusion: A UK Qualitative Study from the Perspective of Survivors and Organizations That Support Them

ABSTRACT This paper considers how to better support the social inclusion of survivors of modern slavery using digital technologies. As such, it explores the under-researched views and experiences of survivors themselves and representatives of civil society organizations supporting them, in relation to how they access and use digital technologies in the UK. Semi-structured interviews were conducted with 11 survivors and 18 organization representatives, and the data collected was thematically analyzed. Key findings suggest that, to support survivors’ (re)integration, it is essential to provide them with access to technology and the digital skills to be safe and pursue opportunities online. However, while survivors value digital technologies to access support and undertake everyday activities, funding for the provision of such technologies is both limited and inconsistent. Meanwhile, in terms of digital skills and safety training, balance between individualized, tailor-made support and formal training is often lacking. Bridging research on survivors of modern slavery with broader digital inequalities work, this paper argues that digital access and digital literacy are crucial to survivors’ material and socio-cultural (re)integration in the UK. Recommendations are provided for research, practice, and policy aimed at facilitating the social and digital inclusion of survivors.

“As a patient I do not belong to the clinic, I belong to the community”: co-developing multi-level, person-centred tuberculosis stigma interventions in Cape Town, South Africa

BackgroundAnticipated, internal, and enacted stigma are major barriers to tuberculosis (TB) care engagement and directly impact patient well-being. Unfortunately, targeted stigma interventions are lacking. We aimed to co-develop a person-centred stigma intervention with TB-affected community members and health workers in South Africa.MethodsUsing a community-based participatory research approach, we conducted ten group discussions with people diagnosed with TB (past or present), caregivers, and health workers (total n = 87) in Khayelitsha, Cape Town. Group discussions were facilitated by TB survivors. Discussion guides explored experiences and drivers of stigma and used human-centred design principles to co-develop solutions. Recordings were transcribed, coded, thematically analysed, and then further interpreted using the socio-ecological model and behaviour change wheel framework.ResultsIntervention components across socio-ecological levels shared common functions linked to effective behaviour change, namely education, training, enablement, persuasion, modelling, and environmental restructuring. At the individual level, participants recommended counselling to improve TB knowledge and provide ongoing support. TB survivors can guide messaging to nurture stigma resilience by highlighting that TB can affect anyone and is curable, and provide lived experiences of TB to decrease internal and anticipated stigma. At the interpersonal level, support clubs and family-centred counselling were suggested to dispel TB-related myths and foster support. At the institutional level, health worker stigma reduction training informed by TB survivor perspectives was recommended to decrease enacted stigma. Participants discussed how integration of TB/HIV care services may exacerbate TB/HIV intersectional stigma and ideas for restructured service delivery models were suggested. At the community level, participants recommended awareness-raising events led by TB survivors, including TB information in school curricula. At the policy level, solutions focused on reducing the visibility generated by a TB diagnosis and resultant stigma in health facilities and shifting tasks to community health workers.ConclusionsDecreasing TB stigma requires a multi-level approach. Co-developing a person-centred intervention with affected communities is feasible and generates stigma intervention components that are directed and implementable. Such community-led multi-level intervention components should be prioritised by TB programs, including integrated TB/HIV care services.

"It made me feel more alive": A qualitative analysis of quality of life improvements following completion of trauma-focused therapy for posttraumatic stress disorder.

Posttraumatic stress disorder (PTSD) is associated with poor quality of life. Although randomized clinical trial data show improvements in quality of life following trauma-focused therapies (TFTs), including prolonged exposure therapy (PE) and cognitive processing therapy (CPT), less is known about how these improvements are experienced from the trauma survivor's perspective. A national sample of 60 veterans who recently completed TFT as part of routine care at U.S. Department of Veterans Affairs facilities participated in semistructured qualitative interviews during which the impact of treatment on quality of life was explored. Following a mixed deductive/inductive approach, six interrelated themes describing changes in quality of life emerged: full participation in social activities, greater emotional intimacy in relationships, improvements in parenting, expanded engagement in hobbies and community, increased occupational commitment and confidence, and more joy in life. The data highlight the positive impact of treatment on quality of life and provide depth to quantitative findings demonstrating improvements in quality of life following TFT.

Experiences of Exercise-Related Worry Among Chinese Childhood Cancer Survivors and Their Carers: A Qualitative Study.

The low levels of physical activity in childhood cancer survivors have increasingly garnered attention from nursing scholars. Exercise-related worry is a prominent barrier, yet the understanding of such experiences among childhood cancer survivors and their primary caregivers remains scarce. The aim of this study was to further understand the factors contributing to exercise-related worry from the perspective of childhood cancer survivors and their primary caregivers. In this qualitative study, we conducted face-to-face semistructured interviews with childhood cancer survivors (n = 20) and carers (n = 20) in 2 hospitals in China. The interviews were analyzed according to thematic analysis. Two main themes and 8 subthemes emerged: (1) internal factors: changes in the perception of physical activity (threat perception from the disease, active avoidance of stressful events, lack of safety due to past experiences), and (2) external factors: weak support system (limited peer support, family strength, feeling abandoned by the tumor team, reintegration into school, external environmental constraints). In summary, exercise-related worry is from internal factors and can be influenced by external factors. There are various factors contributing to the concerns of exercise in childhood cancer survivors, which may be a key factor for their significantly lower levels of physical activity compared to guideline recommendations. The findings of this study call for healthcare professionals to provide additional assistance for childhood cancer survivors with exercise-related worry and establish personalized mechanisms for supporting physical activity in pediatric cancer survivors within the Chinese healthcare system.

Qualitative Descriptive Research Investigating Burn Survivors’ Perspectives on Quality of Care Aspects

Burn care quality indicators are used to monitor and improve quality of care and for benchmark purposes. The perspectives of burn survivors, however, are not included in current sets of quality indicators while patient-centred care gains importance. The aim of this study was to explore burn survivors’ perspectives on quality aspects of burn care, which was used to translate their perspectives into patient-centred quality of care indicators. Qualitative descriptive research was conducted in a patient panel group. First, thematic analysis was applied to the focus groups to identify overarching themes. Second, patient-centred quality indicators, informed by burn survivors’ valued aspects of care, were defined. Ten burn survivors with an average age of 54 years (SD = 11; range 38–72 years) and mean TBSA burned of 14% (SD = 11%; range 5–35%) participated in two focus groups. Four overarching themes were identified, pointing to the importance of (1) information tailored to the different phases of recovery, (2) significant others’ wellbeing and involvement, (3) a therapeutic relationship and low-threshold access to healthcare professionals and (4) to participate in decision-making. Eighteen patient-centred process quality of care indicators within nine aspects of care were formulated. The overarching themes are reflected in patient-centred quality indicators, which present a broadened and complementary view of existing clinical quality indicators for burn care. Evaluating these patient-centred quality indicators may increase quality of care and refine patient-centred care.

Exploring Perspectives of Disaster Survivors on Islamic-Based Nurses' Disaster Response Competencies: A Study from Disaster Front Area

Exploring Perspectives of Disaster Survivors on Islamic-Based Nurses' Disaster Response Competencies: A Study from Disaster Front Area

“We Grow Together.” Perspectives of Latina Survivors and Providers on the Benefits of Incorporating Culturally Specific Factors into Intimate Partner Violence Services

ABSTRACT Intimate Partner violence (IPV) is prevalent psychosocial phenomenon with disproportionate consequences among Latina survivors. We incorporate the perspectives of Latina survivors, service providers, and community partners to explore congruence between survivors’ needs and the implementation of culturally specific IPV services, as well as their benefits for Latina survivors. Three main themes were identified: Establishing Psychological Safety and Trust; Exploring and Managing the Impact of IPV; Enhancing Connections. Our findings support prior research demonstrating the benefits of culturally specific IPV services, and the importance of congruence between culturally specific IPV service provision and the expressed needs and desires of Latina survivors.

QOL-17. LIFE AFTER PAEDIATRIC LOW-GRADE GLIOMA: THE SURVIVOR NARRATIVE. QUALITATIVE INTERVIEWS OF ADULT PLGG SURVIVORS

Abstract BACKGROUND Most patients with PLGG will survive, but long-lasting functional & Quality of Life (QOL) impairments can occur. No PLGG survivorship research has yet included individual survivor narratives. The true impact of the tumour & its treatment on lived experiences from the survivor perspective remains to be explored. AIMS To evaluate PLGG survivor narratives across a heterogeneous group of adult survivors atleast 5 years from PLGG treatment. METHODS An interview guide was created comprising topics around survivors’ past and present experiences and hopes for the future. Open-ended semi-structured interviews were completed with adult survivors diagnosed with PLGG at Great Ormond Street Hospital, UK, 1980-2005. Video interviews were completed on zoom with the same interviewer, and recordings dictated verbatim to transcripts for Framework Analysis(FA). The codebook for analysis was created according to prior literature & themes emerging within and across the transcripts. RESULTS 10 of 26 (38%) eligible survivors (median age 21.5yrs) completed interviews 28-73 minutes long. Median duration 12 years from diagnosis (9-18yrs). FA comprised 18 codes categorised into 4 major themes: The Self, The Social World, Experiences Of A PLGG, & Survivorship. Interviews allowed novel identification that seizures universally contributed long-lasting trauma and mental health disturbance. They also demonstrated that personality, adaptation to a new normal, and both the social & practical support received significantly influenced the impact of objective functional deficits on perceived QOL.All 10 survivors directly reported considering themselves to continue to be functionally affected by their PLGG as an adult. CONCLUSIONS We provide novel first-hand accounts of adult PLGG survivors, representing an important first-attempt at incorporating the survivor narrative and lived experiences as a core component of the evaluation of PLGG survivor outcomes. The narrative accounts allowed us to gain a more in-depth understanding of life for PLGG survivors; and allowed identification of new themes and topics not identified by PedsQl or similar quantitative QOL instruments.

Protocol for the 'Supporting Young Cancer Survivors who Smoke' study (PRISM): Informing the development of a smoking cessation intervention for childhood, adolescent and young adult cancer survivors in England.

Childhood, adolescent and young adult (CAYA) cancer survivors are vulnerable to adverse late-effects. For CAYA cancer survivors, tobacco smoking is the most important preventable cause of ill-health and early death. Yet, effective strategies to support smoking cessation in this group are lacking. The PRISM study aims to undertake multi-method formative research to explore the need for, and if appropriate, inform the future development of an evidence-based and theory-informed tobacco smoking cessation intervention for CAYA cancer survivors. PRISM involves three phases of: 1) an environmental scan using multiple strategies to identify and examine a) smoking cessation interventions for CAYA cancer survivors that are published in the international literature and b) current smoking cessation services in England that may be available to, or tailorable to, CAYA cancer survivors; 2) a qualitative study involving semi-structured interviews with CAYA cancer survivors (aged 16-29 years and who are current or recent ex-smokers and/or current vapers) to explore their views and experiences of smoking, smoking cessation and vaping; and 3) stakeholder workshops with survivors, healthcare professionals and other stakeholders to consider the potential for a smoking cessation intervention for CAYA cancer survivors and what such an intervention would need to target and change. Findings will be disseminated to patient groups, healthcare professionals and researchers, through conference presentations, journal papers, plain English summaries and social media. PRISM will explore current delivery of, perceived need for, and barriers and facilitators to, smoking cessation advice and support to CAYA cancer survivors from the perspective of both survivors and healthcare professionals. A key strength of PRISM is the user involvement throughout the study and the additional exploration of survivors' views on vaping, a behaviour which often co-occurs with smoking. PRISM is the first step in the development of a person-centred, evidence- and theory-based smoking cessation intervention for CAYA cancer survivors who smoke, which if effective, will reduce morbidity and mortality in the CAYA cancer survivor population.

Pediatric Cancer Communication on Twitter: Natural Language Processing and Qualitative Content Analysis.

During the COVID-19 pandemic, Twitter (recently rebranded as "X") was the most widely used social media platform with over 2 million cancer-related tweets. The increasing use of social media among patients and family members, providers, and organizations has allowed for novel methods of studying cancer communication. This study aimed to examine pediatric cancer-related tweets to capture the experiences of patients and survivors of cancer, their caregivers, medical providers, and other stakeholders. We assessed the public sentiment and content of tweets related to pediatric cancer over a time period representative of the COVID-19 pandemic. All English-language tweets related to pediatric cancer posted from December 11, 2019, to May 7, 2022, globally, were obtained using the Twitter application programming interface. Sentiment analyses were computed based on Bing, AFINN, and NRC lexicons. We conducted a supplemental nonlexicon-based sentiment analysis with ChatGPT (version 3.0) to validate our findings with a random subset of 150 tweets. We conducted a qualitative content analysis to manually code the content of a random subset of 800 tweets. A total of 161,135 unique tweets related to pediatric cancer were identified. Sentiment analyses showed that there were more positive words than negative words. Via the Bing lexicon, the most common positive words were support, love, amazing, heaven, and happy, and the most common negative words were grief, risk, hard, abuse, and miss. Via the NRC lexicon, most tweets were categorized under sentiment types of positive, trust, and joy. Overall positive sentiment was consistent across lexicons and confirmed with supplemental ChatGPT (version 3.0) analysis. Percent agreement between raters for qualitative coding was 91%, and the top 10 codes were awareness, personal experiences, research, caregiver experiences, patient experiences, policy and the law, treatment, end of life, pharmaceuticals and drugs, and survivorship. Qualitative content analysis showed that Twitter users commonly used the social media platform to promote public awareness of pediatric cancer and to share personal experiences with pediatric cancer from the perspective of patients or survivors and their caregivers. Twitter was frequently used for health knowledge dissemination of research findings and federal policies that support treatment and affordable medical care. Twitter may serve as an effective means for researchers to examine pediatric cancer communication and public sentiment around the globe. Despite the public mental health crisis during the COVID-19 pandemic, overall sentiments of pediatric cancer-related tweets were positive. Content of pediatric cancer tweets focused on health and treatment information, social support, and raising awareness of pediatric cancer.

Exploring the perspective of adolescent childhood cancer survivors on follow-up care and their concerns regarding the transition process-A qualitative content analysis.

In Germany, children diagnosed with cancer survive their initial disease in more than 80%, and the majority will become long-term survivors. Around the age of 18, survivors are transferred to adult healthcare. The transition can be a critical period in the process of care at which many childhood cancer survivors discontinue to participate in regular follow-up care. Hence, the objective of the paper was to explore (a) survivors' attitudes towards pediatric follow-up care and (b) their concerns regarding the transition process to draw conclusions for optimizing pediatric care and transition processes. We conducted semi-structured interviews with 21 adolescent childhood cancer survivors between the ages of 14 and 20. The survivors were recruited via a pediatric oncology department of a university hospital in Germany. Based on the principles of qualitative content analysis, a deductive-inductive method according to Kuckartz was applied. Based on the interview guide and derived from the exploratory research questions, two key categories were generated: (a) Survivors' attitudes towards pediatric follow-up care, which encompasses all formal and emotional aspects of survivors regarding follow-up care, and (b) their concerns regarding transition from pediatric to adult healthcare, where hindering and facilitating factors for a successful transition occur. Our results show high satisfaction among survivors with follow-up care. Nevertheless, they wish to be more integrated into processes and the organization of their follow-up care. Most adolescent survivors do not feel ready for transition. The integration of survivors into the organization processes and routines, and the promotion of emotional detachment from pediatric health care professionals (HCPs) are important to reduce concerns and uncertainties of adolescent survivors regarding the transition process and to promote subjective readiness for transition. To gain confidence in the adult healthcare, it is crucial to provide tailored education depending on individual requirements and needs and to build trusting relationships between survivors and adult HCPs.

Human-centered design of a novel soft exosuit for post-stroke gait rehabilitation

BackgroundStroke remains a major cause of long-term adult disability in the United States, necessitating the need for effective rehabilitation strategies for post-stroke gait impairments. Despite advancements in post-stroke care, existing rehabilitation often falls short, prompting the development of devices like robots and exoskeletons. However, these technologies often lack crucial input from end-users, such as clinicians, patients, and caregivers, hindering their clinical utility. Employing a human-centered design approach can enhance the design process and address user-specific needs.ObjectiveTo establish a proof-of-concept of the human-centered design approach by refining the NewGait® exosuit device for post-stroke gait rehabilitation.MethodsUsing iterative design sprints, the research focused on understanding the perspectives of clinicians, stroke survivors, and caregivers. Two design sprints were conducted, including empathy interviews at the beginning of the design sprint to integrate end-users’ insights. After each design sprint, the NewGait device underwent refinements based on emerging issues and recommendations. The final prototype underwent mechanical testing for durability, biomechanical simulation testing for clinical feasibility, and a system usability evaluation, where the new stroke-specific NewGait device was compared with the original NewGait device and a commercial product, Theratogs®.ResultsAffinity mapping from the design sprints identified crucial categories for stakeholder adoption, including fit for females, ease of donning and doffing, and usability during barefoot walking. To address these issues, a system redesign was implemented within weeks, incorporating features like a loop-backed neoprene, a novel closure mechanism for the shoulder harness, and a hook-and-loop design for the waist belt. Additional improvements included reconstructing anchors with rigid hook materials and replacing latex elastic bands with non-latex silicone-based bands for enhanced durability. Further, changes to the dorsiflexion anchor were made to allow for barefoot walking. Mechanical testing revealed a remarkable 10-fold increase in durability, enduring 500,000 cycles without notable degradation. Biomechanical simulation established the modularity of the NewGait device and indicated that it could be configured to assist or resist different muscles during walking. Usability testing indicated superior performance of the stroke-specific NewGait device, scoring 84.3 on the system usability scale compared to 62.7 for the original NewGait device and 46.9 for Theratogs.ConclusionThis study successfully establishes the proof-of-concept for a human-centered design approach using design sprints to rapidly develop a stroke-specific gait rehabilitation system. Future research should focus on evaluating the clinical efficacy and effectiveness of the NewGait device for post-stroke rehabilitation.

Impact of sociodemographic factors, stress, and communication on health-related quality of life in survivors of pediatric cancer.

While most research has largely focused on medical risks associated with reduced health-related quality of life (HRQOL) in survivors, sociodemographic and family factors may also play a role. Thus, we longitudinally examined sociodemographic factors and family factors associated with survivor HRQOL, including adolescent's cancer-specific stress, mother's general stress, and mother-adolescent communication. Mothers (N=80) and survivors (ages 10-23, N=50) were assessed 5years following initial diagnosis. Mothers completed measures regarding sociodemographic background adolescent's cancer-specific stress, mother's general stress, mother-adolescent communication, and adolescent HRQOL. Survivors also reported on their own HRQOL. Two hierarchical multiple regressions examined predictors of (a) mother's report of adolescent HRQOL, and (b) survivor's self-report of HRQOL. The final model predicting mother-reported adolescent HRQOL was significant, F(5,74)=21.18, p<.001, and explained 59% of the variance in HRQoL. Significant predictors included adolescent stress (β=-.37, p<.001), mothers' stress (β=-.42, p<.001), and communication (β=.19, p=.03). The final model predicting survivor-reported HRQOL was also significant, F(5,44)=5.16, p<.01 and explained 24% of the variance in HRQOL. Significant predictors included adolescent stress (β=-.37, p=.01) and communication (β=-.31, p=.04). Sociodemographic factors were not a significant predictor of HRQOL in any model. Family stress and communication offer potential points of intervention to improve HRQOL of pediatric cancer survivors from mother and survivor perspectives. While additional research is needed, healthcare professionals should encourage stress management and strong mother-child communication to enhance survivors' long-term HRQOL. Such interventions may be complimentary to efforts targeting the known sociodemographic factors that often affect health.

Voices of rape: Cognitive networks link passive voice usage to psychological distress in online narratives

Past studies of sexual assault have found that passive voice descriptions of rape elicit an increased perception of victim responsibility compared to active voice narratives (Bohner, 2001), contributing to victim blaming and the perpetuation of rape myths. Building on this, we investigate the relationship between passive/active voice usage and perception, but from the perspective of rape survivors as disclosed in their online rape narratives. We collect rape narratives from Reddit's r/sexualassault board and group them into a passive voice group and an active voice group. We detect differences between the two groups of text using a cognitive network science approach that creates network representations from text such that nodes represent words/concepts while links represent syntactic and semantic relationships between them. We systematically identify nodes that are significantly more central to one network compared to the other, thus identifying characteristic concepts that semantically differentiate the two groups of narratives. We then investigate the contexts of these concepts applying semantic frame analysis. We find that concepts related to psychological distress (e.g. PTSD, flashback) are significantly more central to passive voice narratives, providing quantitative evidence of a link between passive voice usage and an increased focus on psychological distress. We also find that family members (e.g. parent, brother) are more central to active voice narratives, suggesting a connection between active voice usage and an increased focus on others' roles in rape survivors' experiences. Our quantitative results reveal an important link between language and mental health that has valuable implications for therapeutic interventions.

Adult Maltese Women's Understanding of How Childhood Domestic Violence Has Impacted Their Relationships with Their Parents and Siblings: A Grounded Theory Study.

Most of the literature that has looked at children's relationships with their parents in the domestic violence context has focused solely on the children's relationship with one parent or is studied from the perspective of one parent, usually the mother. Sibling relationships in the same context are also under-studied. This paper explores in more detail the complexity of children's relationships with their mothers, fathers, and siblings over time from the perspective of adult women and survivors of childhood domestic violence. Methods: A grounded theory methodology was used to analyse the interviews with 15 women aged twenty to forty-three years of age living in Malta. Results: the analysis showed that the domestic violence context remains significant in these important relationships for these women. The relationship with the father remains strongly influenced by the dynamics of fear, love, and retaliation, with cycles of cut-off and connection from the adult daughter's end. The relationship with the mother is complicated-feelings of love that are seen as having been limited and complicated by betrayal if there was abuse from the mother. Similarly, for the siblings, the roles of the early family of origin remain persistent and significant. However, in some of these relationships, there has been transformation, reconciliation, and forgiveness. The article offers implications for therapeutic practice for dealing with the complexity of these relationships and ideas for future research.