Perspectives Of Survivors Research Articles

Recovery After Stroke: Perspectives of Young Stroke Survivors in Taiwan

To learn about the experiences and expectations of stroke recovery among young stroke survivors in Taiwan and to obtain an in-depth understanding of the facilitators of and barriers to their recovery.

Learning From Cancer Survivors as Standardized Patients: Radiation Therapy Students’ Perspective

Introduction/BackgroundHealthcare programs have proven the benefits of standardized patients in educational activities, but limited scholarship exists on the involvement of cancer survivors in radiation therapy education. This innovative approach to simulation-based education in radiation therapy is the first to integrate cancer survivors as standardized patients in a high-fidelity environment. This research aims to examine the impact of cancer survivors on the students’ learning during their simulation course. MethodsThis qualitative research used a phenomenological approach to gather data and analyze the students’ view of their interactions with cancer survivors in the simulation course. The researchers conducted three focus group discussions with five of the eight radiation therapy students using a set of preformulated questions. ResultsThe collected data were comparatively analyzed, and the research team identified four main themes: experience, teaching/coaching, patient-centeredness and gratitude. These represented the students’ perspective on their experiences and the unique learning opportunities provided by the cancer survivors. Findings/DiscussionThe simulation activities with the cancer survivors provided a safe and realistic experience for the students. This research highlighted the influence of the cancer survivors’ oncology journey on the skills development of the radiation therapy students. ConclusionThe students benefited from the authentic patient perspective of the cancer survivors which helped build their confidence and develop their skills prior to clinical placement. This research demonstrated that incorporating cancer survivors as standardized patients in radiation therapy simulation education has added significant value to the students’ learning.

Experiences With Help Seeking Among Non-Service-Engaged Survivors of IPV: Survivors' Recommendations for Service Providers.

Engaging with formal intimate partner violence (IPV) services can buffer the impacts of violence and reduce future risk. Many survivors do not access or engage with such services. However, much of our knowledge related to the experiences and perspectives of IPV survivors comes from samples drawn from those seeking formal services. Qualitative interviews with 23 survivors of violence who are not currently engaged with formal IPV services were conducted, focused on the process and outcomes of choosing to seek help. Themes emerged within the categories of formal help-seeking experiences, informal help seeking, and recommendations for providers.

Pediatric brain tumor survivors' lived experience of engaging in a musical training program which promoted their psychological well-being: a qualitative study.

Musical training has been found to promote psychological well-being and quality of life among pediatric brain tumor survivors. Yet, the essential elements of musical training that influence its efficacy remain unknown. This study aimed to examine the lived experience of engaging in the musical training program from the perspectives of pediatric brain tumor survivors, their parents, and interveners. We employed a descriptive phenomenological approach. Twenty pediatric brain tumor survivors (aged 8-15years) who had undergone musical training in a previous trial were selected, along with their parents (13 mothers and 7 fathers) and 7 interveners, to participate in individual semi-structured interviews. Data analysis was conducted according to Colaizzi's descriptive phenomenology method. Five main themes emerged from the interviews: overcoming difficulties encountered during the initial phase of the musical training program, improved psychological and emotional well-being, facilitation of participation in musical training program, appreciation of the benefits of joining the musical training program, and expectation of future musical training program. The musical training program improved the psychological and emotional well-being of pediatric brain tumor survivors by promoting positive mood, facilitating emotional management and expression, and enhancing self-confidence. In addition, learning in a supportive environment is crucial in facilitating survivors to overcome adversity during their learning process. This study addressed a literature gap by exploring how a musical training program promoted psychological well-being among pediatric brain tumor survivors. The study findings inform the importance of tailoring musical training program based on survivors' learning abilities and needs.

Barriers and facilitators of education provided during rehabilitation of people with spinal cord injuries: A qualitative description

BackgroundAfter a spinal cord injury (SCI), individuals must acquire their maximum level of independence before returning to their previous social and working conditions. The education provided during rehabilitation is one of the basic but complex aspects that influence the health perspectives of people with SCI. Gaining the perspective of SCI survivors experienced barriers and resources to enhance the education process may assist healthcare professionals in understanding this complex aspect of their practice. Through a qualitative descriptive analysis, this study aimed to identify the perceived barriers and facilitators of education provided during the rehabilitation of individuals with SCI.MethodsA purposive sample of 22 adults with SCI and at least six months of home experience was recruited. Participants were assigned into four mini focus groups according to their level of independence. The focus groups were audio-recorded, transcribed verbatim, and analysed using a thematic analysis.ResultsThree themes were identified: the readiness to education, the individual characteristics, and the environmental and social characteristics influencing education. Participants perceived education to be an ongoing process made up of consecutive phases, each of which had to be overcome before participants felt ready to reappraise their health and well-being. This process was affected by individual, environmental, and social factors.ConclusionsEducation is constantly provided by all members of the rehabilitation team. These must stress the relevance of the contents presented, increase SCI survivors’ motivation to set achievable goals, and consider filling the gap that the patients perceive between rehabilitation centres and available community resources. The findings of this study promote the design of structured educational programmes, increasing knowledge, and improve the health perspective of SCI survivors, their families, and providers.

Effect of COVID-19 pandemic on women’s health and safety: A study of immigrant survivors of intimate partner violence

Intimate partner violence (IPV) is a significant national and global public health concern, with COVID-19 pandemic increasing IPV and associated health issues. Immigrant women may be disproportionately vulnerable to IPV-related health risks during the pandemic. Using qualitative in-depth interviews, we explored the perspectives of service providers (n = 17) and immigrant survivors of IPV(n = 45) on the impact of COVID-19 on immigrant women, existing services for survivors and strategies needed needed to enhance women’s health and safety. Participants reported issues such as increased IPV and suggested strategies (e.g. strengthening virtual platforms). The findings could be informative for providers in national and international settings.

Resilience of adult survivors five years after the Wenchuan earthquake: A qualitative study

Adult survivors' resilience process after a disaster is crucial for their adaptation and well-being, and is dependent on cultural context. The aim of this study was to explore the development process structural connotation of adult survivors' resilience five years after the Wenchuan Earthquake. A qualitative descriptive study was conducted. Twenty-six adult survivors were recruited by purposive sampling from four reconstructed communities in Beichuan County, China. Individual semi-structured interviews were conducted and conventional content analysis was used to analyze the data. Their resilience centered on reconstructing life through post-earthquake challenges. Four themes emerged regarding their resilience process: realizing personal resources, maintaining family integrity, negotiating for cohesion in community living, and navigating social support opportunities. Bereavement, personal or family member's illness and family member's disability, and financial burdens acted as risk factors for their resilience. This study provides knowledge on how to maintain resilience after earthquake from the perspective of adult survivors in China. Adult survivors in this study struggled to reconstruct life through post-earthquake challenges by negotiating personal resources, family integrity, cohesive community and social support.

Intimate Partner Violence and Employment-Seeking: A Multilevel Examination of Barriers and Facilitators.

Intimate partner violence (IPV) impacts career development and negatively influences employment prospects, education attainment, and financial earnings; yet there is a gap in research exploring the experiences of employment-seeking from the perspectives of survivors. An intersectional and social ecological perspective provides an important framework and highlights the multiple intersecting barriers of IPV and employment ranging from mental health concerns such as trauma, anxiety and depression to lack of shelter and childcare, limited access to employment services, and other forms of discrimination. This article responds to this gap in research and provides findings from a constructivist grounded theory study of 16 employment-seeking survivors of IPV. To theorize and understand IPV and employment utilizing an intersectional and social ecological framework, the following research question were addressed: (a) What are the contextual barriers or facilitators that shape the employment-seeking process of survivors of IPV? (b) How do the experiences of discrimination shape the employment-seeking experience of survivors of IPV? (c) What employment services were helpful or unhelpful during the employment-seeking process? Two main themes emerged from analysis: (a) Multilevel barriers to employment and (b) Employment barriers/facilitators to employment-seeking. Findings indicate that survivors of IPV face multiple barriers to employment at the intrapersonal (e.g., depression, anxiety, trauma, low self-esteem), interpersonal (e.g., ties to an abusive partner, responsibilities related to childcare), community (lack of social support, few employment opportunities, poverty), and structural/institutionalized levels (e.g., racism, sexism, transphobia). Implications from these findings illustrate that employment-seeking is shaped by structural inequities, intersecting stigma, individual level barriers, and social identities, as well as experience of abuse, which is an important contribution to IPV research. This study provides insight into the complexities of employment-seeking and helps improve knowledge on the social ecological and intersecting barriers of employment from the perspectives of survivors.

Improving survivorship care: Perspectives of cancer survivors 75 years and older

PurposeThis work describes perspectives of older adult cancer survivors about improvements that should be considered during the early period of survivorship. Findings will be useful in program development of age-appropriate services following completion of cancer treatment for older adults. MethodsA national survey was conducted across ten Canadian provinces to understand follow-up experiences of cancer survivors one to three years post-treatment. The survey included open-ended questions enabling respondents to offer insight into their experiences. This publication presents analysis of responses from older adults (75+ years) about suggestions for improving survivorship care. ResultsIn total, 3274 older adults (75+ years) responded to the survey and 1424 responded to the question about improvements. Fifty-five percent of the older adults were male, 28% had experienced metastatic disease and 75% reported comorbid conditions. A total of 640 respondents offered 932 suggestions in the areas of service delivery (n = 763, 81.9%), support (n = 108, 11.6%), and practical assistance (n = 61, 6.5%). Improvements in information/communication (n = 291) and follow-up care (n = 180) accounted for the highest number of suggestions regarding service delivery. Thematic analysis revealed three key messages about improvement: ‘offer me needed support’, ‘make access easy for me’, and ‘show me you care’. ConclusionSuggestions for improvement in survivorship care by older adults treated for cancer emphasize need for changes in the approaches taken by health care providers in interactions and organization of care delivery. Proactive provision of information, detailed schedules for follow-up care, and ease of access to post-treatment care are needed.

"It's All Sort of Cool and Interesting…but What Do I Do With It?" A Qualitative Study of Stroke Survivors' Perceptions of Surface Electromyography.

Background: Stroke is one of the most common neurologic injuries worldwide. Over decades, evidence-based neurorehabilitation research and advancements in wireless, wearable sensor design have supported the deployment of technologies to facilitate recovery after stroke. Surface electromyography (sEMG) is one such technology, however, clinical application remains limited. To understand this translational practice gap and improve clinical uptake, it is essential to include stakeholder voices in an analysis of neurorehabilitation practice, the acceptability of current sEMG technologies, and facilitators and barriers to sEMG use in the clinic and the community. The purpose of this study was to foreground the perspectives of stroke survivors to gain a better understanding of their experiences in neurorehabilitation, the technologies they have used during their recovery, and their opinions of lab-designed and commercially-available sEMG systems.Methods: A qualitative, phenomenological study was completed. In-depth, semi-structured interviews were conducted with eight stroke survivors (age range 49–78 years, 6 months to 12 years post-stroke) and two caregivers from a large metropolitan region. A demonstration of four sEMG systems was provided to gather perceptions of sensor design, features and function, and user interface. Interviews were audio-recorded, transcribed verbatim, and coded for analysis using constant comparison until data saturation was reached.Results: Three themes emerged from the data: (1) “Surface EMG has potential….but…” highlights the recognition of sEMG as a valuable tool but reveals a lack of understanding and need for clear meaning from the data; (2) “Tracking incremental progress over days or years is important” highlights the persistence of hope and potential benefit of sEMG in detecting small changes that may inform neurorehabilitation practice and policy; and (3) “Neurorehabilitation technology is cumbersome” highlights the tension between optimizing therapy time and trying new technologies, managing cost, logistics and set-up, and desired technology features.Conclusion: Further translation of sEMG technology for neurorehabilitation holds promise for stroke survivors, but sEMG system design and user interface needs refinement. The process of using sEMG technology and products must be simple and provide meaningful insight to recovery. Including stroke survivors directly in translational efforts is essential to improve uptake in clinical environments.

Recovery after stroke: perspectives of young stroke survivors in Taiwan

Purpose To learn about the experiences of stroke recovery among young stroke survivors in Taiwan and to elucidate the beliefs, goals, and facilitators of and barriers to their recovery. Methods A qualitative approach was used for data collection, and data were obtained from five focus groups consisting of stroke survivors aged 20–64 years (n = 25). Data were transcribed verbatim and analyzed thematically by two independent coders using NVivo version 10. Results “Returning to prestroke status” was a common belief of recovery for stroke survivors; their goals of recovery changed overtime from regaining physical functions, independent living, and participating in work and leisure activities to maintaining functions or returning to normality. Their perceived personal and environmental facilitators of recovery included positive attitude, family and friends, and rehabilitation, whereas barriers to recovery included psychological factors, social stigma, and physical environment. Conclusion These findings provide useful insights for rehabilitation clinicians to develop culturally tailored interventions to improve poststroke recovery outcomes in young stroke survivors. Implications for rehabilitation Rehabilitation clinicians should understand stroke survivors’ beliefs and goals of recovery to provide tailored services. Optimizing the goal-setting process and patient–provider communication may help clinicians and survivors examine and adjust their expectations toward recovery during rehabilitation. Interventions will be needed to address personal and environmental supports and barriers, such as motivation, psychological factors, social support, and the physical environment to help survivors achieve their recovery goals.

The StrokeCog study: development and description of a cognition-focused psychological intervention to address cognitive impairment following stroke

Objective To describe the process of developing a cognitive rehabilitation intervention for patients with post-stroke cognitive impairment (PSCI) and to describe the intervention prior to evaluation in a pilot randomised controlled trial (RCT). Method: The Medical Research Council framework, ‘Developing and evaluating complex interventions’, was used to develop the cognitive rehabilitation intervention. We conducted a combined analysis of the existing evidence base for PSCI rehabilitation alongside qualitative exploration of the perspectives of stroke survivors, their families, and healthcare professionals providing stroke care, on the necessary components for a cognitive rehabilitation intervention for PSCI. The Template for Intervention Description and Replication checklist was used as a structural framework for the description of the intervention. Results: The intervention comprises a five-week intervention integrating group-based activities, supported by a clinical neuropsychologist, with home-based activities to encourage self-efficacy through the practice of adjustment and compensatory strategies learned in the group format to achieve the patients’ identified goals in managing their PSCI. Conclusion: A cognitive rehabilitation intervention for patients with PSCI has been developed and described. We are in the process of developing a structured intervention manual to standardise the content and delivery of the intervention for further testing in a pilot RCT.

‘We are very individual’: anticipated effects on stroke survivors of using their person-generated health data

BackgroundPerson-generated health data (PGHD) are produced by people when they use health information technologies. People who use PGHD may experience changes in their health and care process, such as engagement...

Using Photovoice to Understand Survivors' Healthcare Experiences and Strategies

The unique, individual nature of traumatic experiences and trauma symptoms and the limited healthcare resources typically allocated for individual patients pose barriers to implementing trauma-informed care. Developing knowledge on how survivors of violence engage in healthcare and self-advocate can lead to more empowering and efficient implementation of trauma-informed care. However, survivor perspectives on trauma-informed care are underrepresented in current literature and survivors' strategies for navigating healthcare are understudied. The aims of this participatory Photovoice study were to describe the healthcare experiences of female survivors of violence and their strategies for dealing with difficult healthcare experiences, healthcare providers, and the healthcare system. A sample of community-based women participated in an iterative series of five Photovoice meetings. Participants discussed multifaceted vulnerability in healthcare settings with regard to past traumatic violence, triggering or retraumatizing health care experiences, medical knowledge, and provider-patient relationships. They agreed that providers believing their symptoms, health concerns, and trauma disclosures was essential for positive provider-patient relationships and healthcare experiences. Findings on the importance of perceived belief with regard to trauma disclosure and health concerns and survivors' healthcare strategies are unique contributions to the literature. Providers should be accountable for integrating survivors’ self-knowledge in collaborative healthcare decision-making, for making medical records and information easily accessible, and for expressing belief in trauma disclosures and health concerns. Future research should continue using participatory methods to assess evolving trauma-informed practices and patient engagement among survivors and to hasten progress toward trauma-informed care that effectively meets the needs of survivors.

Perspectives of Stroke Survivors and Healthcare Professionals on the Use of Mobile Health to Support Participation in Physical Activity

Abstract Date Presented 03/27/20 Physical activity is a key component of primary and secondary stroke prevention. However, stroke survivors frequently do not meet physical activity guidelines, and calls have been made for the use of mobile and wireless devices, i.e., mobile health, to support participation in physical activity. The current study explores the perspectives of stroke survivors and health professionals on the use of mobile health to support engagement in physical activity. Primary Author and Speaker: Daniel Carter Contributing Authors: Katie Robinson, John Forbes, Jane Walsh, Sara Hayes

Living With Neglect: A Qualitative Analysis of Stroke Survivor Perspectives

Abstract Date Presented 03/26/20 Neglect is a common impairment following stroke. Currently, there is a lack of evidence regarding the impact of neglect on performance of instrumental activities of daily living, participation, safety, perceived quality of life, and caregiver burden. This study examined the experience of living with poststroke neglect. These findings can help clinicians better understand the long-term needs of stroke survivors with neglect and the daily challenges they face. Primary Author and Speaker: Emily Grattan Additional Authors and Speakers: Emerson Hart Contributing Authors: Nicholas Dean, Brianna Eberl, Hannah Hooks, Lindsay Manning, Katie Schafer, Stacie McLamb

Voluntary, Survivor-Centered Advocacy in Domestic Violence Agencies

Voluntary, survivor-centered advocacy is a model of practice used in domestic violence organizations; however, more information is needed from the perspective of survivors on how to best facilitate survivor-centered approaches in a voluntary service format. This qualitative study used a thematic analysis to uncover core advocacy approaches from 25 female-identified survivors dwelling in domestic violence emergency shelter and transitional housing programs in two states. Themes revealed that three core approaches aid a voluntary, survivor-centered advocacy model: 1) Establishing a safe base for support, 2) Facilitating access and connection, and 3) Collaboration. Advocacy approaches that emphasize safety, mutuality, and availability of support best engage survivors in voluntary services to address needs and meet goals. Use of a strengths-based approach, psychoeducation, and resource-building contributes to the social and emotional well-being of survivors. Findings indicate community DV advocates should use adaptable advocacy models aimed at service access, connection, and collaborative resource acquisition. Voluntary, survivor-centered models use principals of trauma-informed care, though more widespread use of trauma-informed care (TIC) in voluntary services are needed. Advocates need organizational support to meet survivor needs. Implications for research include the need for fidelity studies and longitudinal research.

“I would get real people involved”: The perspectives of end users in policymaking

The implementation of health care services is important for public health. Although the current literature provides much insight into the perspectives of policymakers in charge of such implementations, we know very little about the perspectives of end users. Our study addresses this gap by exploring the perspectives of cancer survivors with regard to the notion of forming a cancer coalition. We found health communication to be highly important and much desired among cancer survivors. Policymakers should include end users in planning and decision-making, and focus on communicating the purposes and benefits of an initiative to end users.

Positive Cancer Experiences: Perspectives From Cancer Survivors.

The purpose was to review the perspectives of cancer survivors about what they perceive constitutes positive cancer experiences. A national survey was conducted in collaboration with 10 Canadian provinces to identify experiences and unmet needs for cancer survivors between 1 and 3 years of posttreatment. The survey included open-ended questions designed to allow the respondents to add topics and details of importance. This publication presents the analysis of quantitative data and open-ended questions regarding cancer survivors’ perspectives about positive experiences and gaps in care during their cancer journey. Of the 13 534 unique adult survey respondents, 7794 (57.6%) responded to the positive experiences question and 6434 (47.5%) to the question about gaps in care. Elements of positive experiences included the compassionate health care workers, maintaining a positive outlook and the support of family and friends. Gaps in care included a lack of access to services, information, and support. Respondents were able to identify positive aspects of their cancer experiences and where improvements were needed. These findings assist in determining how health care professionals can address the needs of cancer patients based on what survivors have identified as helpful.

Functional, work-related rehabilitative programming for cancer survivors experiencing cancer-related fatigue

IntroductionCancer-related fatigue negatively impacts 50–90% of cancer survivors. In North America, approximately 50% of return-to-work interventions initially fail for survivors, with cancer-related fatigue often cited as a barrier to workability. Occupational therapy-driven cancer-related fatigue work-related programming for survivors is sparse, despite many published reviews calling for interdisciplinary interventions; to address work-related performance, specific functional interventions are likely to be needed. Further exploration and a broader understanding of survivors’ cancer-related fatigue management, participation in rehabilitative programmes, and plans for return to work are necessary to target survivor needs better.MethodDrawing on social theory, this exploratory descriptive study utilised content and thematic analysis of interviews from 12 survivors to explore and describe the perspectives of survivors experiencing cancer-related fatigue yet desiring to work.ResultsContent analysis reflected distinct differences in fatigue-related terminology. Thematic analysis identified three themes specific to cancer-related fatigue and workability: valuing physical wellness, perceived cognitive impacts of cancer-related fatigue on function and workability, and the lack of transition from physical exercise to functional work-related activities.ConclusionSurvivors identified gaps in care related to managing cognitive symptoms and the need for functional, work-related interventions to manage cancer-related fatigue. With their expertise in function, occupational therapists are well positioned to facilitate work-specific interventions, within cancer-specific exercise programming.