Journal articles on the topic 'Survivors'
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1
Reed, Mark D., and Jason Y. Greenwald. "Survivor‐Victim Status, Attachment, and Sudden Death Bereavement." Suicide and Life-Threatening Behavior 21, no. 4 (December 1991): 385–401. http://dx.doi.org/10.1111/j.1943-278x.1991.tb00576.x.
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ABSTRACT: This research examines the significance of the survivor‐victim relationship in understanding grief following sudden death bereavement. Data for this study come from medical examiner's reports and mailed self‐report surveys of survivors of suicide and accidental death. In general, the results show that survivor‐victim attachment is more important than survivor's status in explaining grief reactions. Also, suicide survivors experience significantly less emotional distress and shock, but greater feelings of guilt/shame and rejection, than survivors of accidental death. This paper concludes by directing future research to explore more fully the importance of survivor‐victim relationships in understanding grief following bereavement.
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Shepp, Veronica, Erin O’Callaghan, Anne Kirkner, Katherine Lorenz, and Sarah Ullman. "Sexual Assault Survivors Who Exchange Sex: Identity, Stigma, and Informal Responses From Support Providers." Affilia 35, no. 1 (August 18, 2019): 105–28. http://dx.doi.org/10.1177/0886109919866161.
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It is well established in the literature that individuals who engage in sex work are more likely to experience sexual trauma/violence, but little research has examined experiences of sexual assault survivors who exchange sex from the survivor’s perspective. Sexual assault survivors and their informal support providers (SPs; e.g., family, friends, romantic partners) were interviewed separately about disclosure, social reactions, and help-seeking following assault. Sixteen survivors mentioned experiences exchanging sex, which comprise the sample for the current study as well as comments from twelve SPs. Qualitative analysis revealed several themes including violence experienced engaging in sex work, navigating stigma and the identity of both sexual assault survivor and sex worker, and how survivors’ social supports impact their recovery. Survivors endorsed their sex worker identities at varying levels, and others used their identity as a sexual assault survivor to explain why they engaged in sex work. Social work implications regarding service provision and advocacy work are discussed.
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Quillen, Joanne, Yimei Li, Michele Demski, Claire Carlson, Holli Bradley, Lisa Schwartz, Jill P. Ginsberg, and Wendy Hobbie. "Comparing the Knowledge of Parents and Survivors Who Attend a Survivorship Clinic." Journal of Pediatric Oncology Nursing 35, no. 1 (November 2, 2017): 56–64. http://dx.doi.org/10.1177/1043454217735828.
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Background: This study underscores the importance of the survivor/parent dynamic in understanding the knowledge level of childhood cancer survivors and their parents with regard to cancer diagnosis, treatments, and potential late effects, and to assess the impact of parental knowledge on survivor’s knowledge. Procedure: A convenience sample (N = 219 dyads) consisting of childhood cancer survivors with a parent match was used. Survivors 2 years out from completion of therapy, aged 16 to 25 years, and fluent in English or Spanish completed 2 questionnaires to assess adolescent and young adult and parental knowledge regarding diagnosis, treatment, and long-term risks. Results: Data from the survivor/parent dyad confirm that parents are more knowledgeable than their child regarding treatment specifics. However, survivors are more accurate when assessing second tumor and fertility risk. More knowledgeable parents led to more knowledgeable survivors. Conclusions: Although parents were well-informed about treatment specifics, they were not as accurate in identifying risks appropriately. Therefore, education must be directed at both parent and survivors to maximize knowledge.
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Mertens, Ann, Rebecca Williamson, Jordan Gilleland-Marchak, Lillian R. Meacham, Brooke Cherven, and Paula Edwards. "Evaluation of the adoption, acceptance, and satisfaction of SurvivorLink as a communication tool for pediatric cancer survivors." Journal of Clinical Oncology 34, no. 3_suppl (January 20, 2016): 89. http://dx.doi.org/10.1200/jco.2016.34.3_suppl.89.
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89 Background: With the number of cancer survivors growing, focus on early recognition and treatment of late effects is even more imperative for life-long survivorship care. Electronic personal health records (PHR) potentially offer self-management and e-learning support which can empower the survivor, as well be used as a communication tool with healthcare providers (HCP). Methods: We developed a PHR, SurvivorLink (www.cancersurvivorlink.org), as a patient-centered tool to support pediatric cancer survivors, increase knowledge of late effects and survivor care, and promote communication between patients/parents and providers. Measures of success for a sustainable PHR implementation include adoption/use, acceptance, satisfaction and usability. The objectives of this feasibility study are to determine characteristics that predict the success of this PHR tool. An online pre-/post survey was administered to young adult survivors and parents of child survivors who registered on SurvivorLink. Results: Overall, 155 parents and 93 survivors completed the pre-test survey; 75% and 86% respectively have subsequently logged into SurvivorLink after initial registration. Individuals who used this PHR were more likely to be survivors (vs. parents; Odds Ratio (OR): 2.2, 95% CI: 1.1, 4.2). Other demographic variables were analyzed but no significant differences were found between users and non-users. Among users not aware of their need for specialized survivor care at the pre-survey, 52% reported awareness of the need for survivor care in the post-survey (vs 0% of non-users). Parents/survivors also reported high acceptance: 90% would use in the future, 82% stated it would help with advocating for survivor's health; and usability: 96% would recommend to other survivors/parents, 95% would recommend to their healthcare provider. Conclusions: SurvivorLink can improve knowledge around the importance of survivor care, and is both adopted and accepted by survivors/ parents independent of demographic differences. Research is underway to establish SurvivorLink's effectiveness as an advocacy/communication tool for survivor/parent with HCP in the self-management of their healthcare.
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Reynolds, Francoise M. T., and Peter Cimbolic. "Attitudes toward Suicide Survivors as a Function of Survivors' Relationship to the Victim." OMEGA - Journal of Death and Dying 19, no. 2 (October 1989): 125–33. http://dx.doi.org/10.2190/kr1x-qng3-2ygm-udyq.
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This study examined attitudes toward suicide survivors. Two variables were assessed: the impact of information on attitudes toward suicide survivors and whether the survivor's relationship to the victim affects the attitudes of others towards the survivor. Sixty participants responded to one of three fictional case histories that described a child's suicide, a spouse's suicide, or a parent's suicide. Prior to reading case vignettes, thirty of the participants read an article about suicide; the other thirty read death-related but not suicide-related materials. Results indicated that suicide information did not affect attitudes toward survivors. Further results indicated that reactions to suicide survivors are generally negative and the relationship of survivors to victims affects these reactions. Children of victims were seen least negatively; parents of a child who died by suicide received the most negative reactions.
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Soley, Berta. "Engaging torture survivors in the global fight against torture." Torture Journal 31, no. 1 (May 11, 2021): 88–92. http://dx.doi.org/10.7146/torture.v31i1.125764.
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Lived experience can be emancipating and also paralysing, but foremost, it is immensely valuable to combat what has been suffered in first person (Henry, 2021). How to recognise that contribution and engage torture survivors in the global fight against torture? What role do survivors play in society? How to involve survivors in advocacy and policy-making processes? What are the existing power (in)balances at play? Who gets to decide whether a survivor should speak up or not? Acknowledging that it can prompt some organisational, therapeutic, and professional considerations, what are the limits? How do we ensure that the survivor’s well-being is protected along the process? To what extend should survivors be engaged in our organisation’s decision-making?
In front of the current on-going debate on the need of actively engaging torture survivors in the global fight against torture, IRCT held a webinar to explore this topic. The webinar examined torture survivor engagement in the rehabilitation process of rebuilding lives, seeking justice and torture prevention. This article summarises the discussion held during the webinar with the presentations from Léonce Byimana[1], Feride Rushiti[2], Kolbassia Haoussou[3] and Vasfije Karsniqi-Goodman[4] and further inputs from other IRCT-members.
[1] Executive Director of Torture Abolition and Survivors Support Coalition (TASSC)
[2] Executive Director of the Kosova Rehabilitation Center for Torture Victims (KRCTV)
[3] Director of Survivor Empowerment at Freedom From Torture
[4] Survivor and member of the Kosovan parliament
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Hoffman, Barbara, and Ellen Stovall. "Survivorship Perspectives and Advocacy." Journal of Clinical Oncology 24, no. 32 (November 10, 2006): 5154–59. http://dx.doi.org/10.1200/jco.2006.06.5300.
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From the moment of diagnosis, a cancer survivor faces serious life-altering decisions. Survivors who are informed about their options and who feel they have personal control over decision making generally perceive a higher quality of life than those who feel less informed and less in control. Health care providers are in a unique position to define a survivor's cancer care and to guide a survivor through treatment and post-treatment care. By implementing survivorship care plans and directing their patients to survivorship resources, health care providers can advocate for survivors and teach them to be effective self-advocates.
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Huemmer, Jennifer, Bryan McLaughlin, and Lindsey E. Blumell. "Leaving the Past (Self) Behind: Non-Reporting Rape Survivors’ Narratives of Self and Action." Sociology 53, no. 3 (May 24, 2018): 435–50. http://dx.doi.org/10.1177/0038038518773926.
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Using a symbolic interactionist framework, this study considers the narratives of non-reporting rape survivors. We use interviews to examine the complex processes that inform a survivor’s decision not to report. Rape is not interpreted as an isolated event; it is something that is seen as caused by, connected to, and affecting the survivor’s sense of self and agency. Rape forces the survivor to reconstruct a sense of agency in the aftermath of the traumatic attack. Rather than report the rape, the survivors constructed narratives that direct blame and accountability toward the “old self”. This less visible, yet still agentic strategy, allows the survivors to regain a sense of agency and control. As a result, a more positive, optimistic self can be constructed, while pursuing legal justice would force them to reenact an “old” self that cannot be disentangled from the rape.
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Elam, Jerome. "The OSCE/ODIHR Code of Practice for Ensuring the Rights of Victims and Survivors of Human Trafficking: A Survivor's Perspective." Journal of Human Trafficking, Enslavement and Conflict-Related Sexual Violence 4, no. 1 (July 7, 2023): 47–57. http://dx.doi.org/10.7590/266644723x16875292791265.
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The Organization for Security and Cooperation in Europe (OSCE) Office for Democratic Institutions and Human Rights (ODIHR) officially launched the Code of Practice for Ensuring the Rights of Victims and Survivors of Human Trafficking on 18 April 2023 at the 23rd Alliance Conference Against Trafficking in Persons in Vienna, Austria. Developed from survivor leader Jerome Elam's idea for a Victim and Survivor's Bill of Rights, the Code of Practice seeks to extend relevant international and regional standards for the protection of victims and survivors. To accomplish this, the Code of Practice offers specific guidance to Member States of the OSCE in the treatment, engagement and empowerment of victims and survivors of human trafficking. Drafted in collaboration with the Inaugural OSCE Office for Democratic Institutions and Human Rights (ODIHR) International Survivors of Trafficking Advisory Board (ISTAC), the 'Code of Practice' relies on the lived experience of ISTAC to create an umbrella of knowledge and support to protect victims and survivors. In addition, the Code of Practice seeks to minimize any additional trauma imparted upon victims and survivors upon their engagement by anti-trafficking stakeholders, including governmental organizations, the media and civil society. This is primarily accomplished by giving specific guidance on using trauma informed care in all aspects of victim and survivor identification and recovery and during their involvement with the legal system. The Code of Practice also offers recommendations for gender sensitive, disability sensitive, cultural and religious considerations to be employed by the anti-trafficking community. The role of survivor leaders is highlighted by the Code of Practice and member states are advised to foster the inclusion of survivor leaders in the development and refurbishment of legislation, policies and protocols for addressing the crime of human trafficking. The OSCE/ODIHR Code of Practice is an extension of existing policies and broadens the scope of protecting victim and survivors' rights so that the opportunity to reclaim their lives is allowed into full bloom. The unique nature of the Code of Practice in using the lived experience of survivor leaders adds a new dimension to the tools used by the anti-trafficking community and expands the reach of the fight against the darkness of human trafficking.
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Eng, Xue Wen, Sandra G. Brauer, Suzanne S. Kuys, Matthew Lord, and Kathryn S. Hayward. "Factors Affecting the Ability of the Stroke Survivor to Drive Their Own Recovery outside of Therapy during Inpatient Stroke Rehabilitation." Stroke Research and Treatment 2014 (2014): 1–8. http://dx.doi.org/10.1155/2014/626538.
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Aim. To explore factors affecting the ability of the stroke survivor to drive their own recovery outside of therapy during inpatient rehabilitation.Method. One-on-one, in-depth interviews with stroke survivors (n=7) and their main carer (n=6), along with two focus groups with clinical staff (n=20). Data was thematically analysed according to group.Results. Stroke survivors perceived “dealing with loss,” whilst concurrently “building motivation and hope” for recovery affected their ability to drive their own recovery outside of therapy. In addition, they reported a “lack of opportunities” outside of therapy, with subsequent time described as “dead and wasted.” Main carers perceived stroke survivors felt “out of control … at everyone’s mercy” and lacked knowledge of “what to do and why” outside of therapy. Clinical staff perceived the stroke survivor’s ability to drive their own recovery was limited by the lack of “another place to go” and the “passive rehab culture and environment.”Discussion. To enable the stroke survivor to drive their own recovery outside of therapy, there is a need to increase opportunities for practice and promote active engagement. Suggested strategies include building the stroke survivor’s motivation and knowledge, creating an enriched environment, and developing daily routines to provide structure outside of therapy time.
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Hasan, Ali, Farhan Mirza, Zaineb Khalid, Nida Komal, and Hira Yaqoob. "Impact of Stigma on Survivor's Productivity: Moderating Role of Perceived Organizational Support." International Journal of Family Business and Management 3, no. 1 (April 13, 2019): 1–7. http://dx.doi.org/10.15226/2577-7815/3/1/00126.
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The main purpose of this study is to examine the relationship between stigma and survivor’s productivity. Earlier studies show that stigma has a negative impact on survivor’s productivity. Therefore, the purpose of this research is to examine and provide satisfactory justification of relationship among stigma and organizational support on survivors’ productivity. Methodology of the study is quantitative with the survey as a main research strategy. 250 Questionnaire was distributed along with employees of Telecom industry of Pakistan. Data was analyzed using SPSS regression and beta analysis. The findings suggest that there is negative relationship between stigma and survivor’s because stigma creates negative effects. But POS is moderating the negative relation of stigma and survivors. Future research could be conducted on the some other variables such as Training, Knowledge management, Procedural justice these can be studied during stigma on survivor’s productivity. Key words: Stigma; perceived organizational support; survivor productivity;
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Reb, Anne M., and Diane G. Cope. "Quality of Life and Supportive Care Needs of Gynecologic Cancer Survivors." Western Journal of Nursing Research 41, no. 10 (May 12, 2019): 1385–406. http://dx.doi.org/10.1177/0193945919846901.
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Gynecologic cancer survivors experience significant distress that can impact quality of life (QOL). Optimal survivorship care requires an understanding of the survivor’s QOL and supportive care needs. The purpose of this study was to describe the QOL and needs of gynecologic cancer survivors. Women with an initial diagnosis of gynecologic cancer within 7 months of completing primary treatment ( N = 34) completed the QOL-Cancer Survivor tool and the Cancer Survivors’ Unmet Needs Survey. Fear of cancer recurrence was a repetitive theme for both tools. The lowest ranking QOL items were distress from diagnosis and treatment, family distress, and uncertainty about the future. Commonly reported needs included help to reduce stress, manage side effects, cope with fears of cancer recurrence, and gain reassurance that providers were communicating, and providing the very best medical care. Appreciating QOL and needs can facilitate the development of support services specifically tailored to gynecologic survivors.
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Snyder, Claire F., Kevin D. Frick, Melinda E. Kantsiper, Kimberly S. Peairs, Robert J. Herbert, Amanda L. Blackford, Antonio C. Wolff, and Craig C. Earle. "Prevention, Screening, and Surveillance Care for Breast Cancer Survivors Compared With Controls: Changes from 1998 to 2002." Journal of Clinical Oncology 27, no. 7 (March 1, 2009): 1054–61. http://dx.doi.org/10.1200/jco.2008.18.0950.
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Purpose To examine how care for breast cancer survivors compares with controls. Patients and Methods Using the Surveillance, Epidemiology, and End Results–Medicare database, we examined five cohorts of stages 1 to 3 breast cancer survivors diagnosed from 1998 to 2002. For each survivor cohort (defined by diagnosis year), we calculated the number of visits to oncology specialists, primary care providers (PCPs), and other physicians and the percentage who received influenza vaccination, cholesterol screening, colorectal cancer screening, bone densitometry, and mammography during survivorship year 1 (days 366 to 730 postdiagnosis). We compared survivors' care to that of five cohorts of screening controls who were matched to survivors on age, ethnicity, sex, and region and who had a mammogram in the survivor's year of diagnosis and to that of five cohorts of comorbidity controls who were matched on age, ethnicity, sex, region, and comorbidity. We examined whether survivors' care was associated with the mix of physician specialties that were visited. Results A total of 23,731 survivors were matched with 23,731 screening controls and 23,396 comorbidity controls. There was no difference in trends over time in PCP visits between survivors and either control group. The survivors' rate of increase in other physician visits was greater than screening controls (P = .002) but was no different from comorbidity controls. Survivors were less likely to receive preventive care than screening controls but were more likely than comorbidity controls. Trends over time in survivors' care tended to be better than screening controls but were no different than comorbidity controls. Survivors who visited both a PCP and oncology specialist were most likely to receive recommended care. Conclusion Involvement by both PCPs and oncology specialists can facilitate appropriate care for survivors.
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SCHIFFRIN, DEBORAH. "Mother and friends in a Holocaust life story." Language in Society 31, no. 3 (July 2002): 309–53. http://dx.doi.org/10.1017/s0047404502020250.
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Although oral histories about the Holocaust are increasingly important sources of public commemoration, as well as data for historians, they also provide opportunities for survivors to recount life stories that describe intensely personal and painful memories. One type of memory concerns relationships with significant and familiar “others.” By analyzing the linguistic construction (through variation in the use of referring terms and reported speech) of two relationships (with mother and friends) in one Holocaust survivor's life story, this article shows how survivors' life stories position “others” within both their own lives and more broadly construed matrices of cultural archetypes and historically contingent identities (victim, survivor, bystander).
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Chow, Esther, and Sai-fu Fung. "UNDERSTANDING STROKE SURVIVOR–CARER DYNAMICS USING THE ACTOR-PARTNER INTERDEPENDENCE MODEL: A SYSTEMATIC REVIEW." Innovation in Aging 6, Supplement_1 (November 1, 2022): 634. http://dx.doi.org/10.1093/geroni/igac059.2351.
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Abstract Background Family members often take on the caregiver roles to stroke survivors due to kinships and cultural responsibilities. Yet, little is known about the the impact of survivor-caregiver dynamics on stroke rehabilitation. To understand the dyadic relationships between the dyads, a systematic review was conducted to examine studies which have adopted Actor–Partner Interdependence Model (APIM) analysis. Methods A systematic review and meta-analysis were conducted using the following electronic databases: PubMed, SAGE Journals, MEDLINE, PsycINFO and Cochrane Review to identify eligible studies published from their inception to December 2021, following the PRISMA guidelines. Results Nine studies involving 1183 stroke survivors (male = 57%) and 1181 caregivers (male = 37%) had met the inclusion criteria and were identified in this review. The interaction among the following outcomes were self-esteem, optimism, stress, depression, emotional distress, quality of life, and life satisfaction. The review provided evidence that (1) APIM is valuable tool in analyzing dyadic interactions; (2) support from caregivers has a significant impact on the stroke survivor’s recovery; (3) the mental health status of caregivers can influence that of stroke survivors and vice versa; (4) Due to the interconnected nature of dyadic interaction, providing dyadic intervention have positive impact on dyads. Conclusion These findings highlight the interdependence nature between survivor-caregiver dyads in the context of stroke rehabilitation. The APIM provides conclusive evidence on the effectiveness of survivor-caregiver dyadic interactions, with significant theoretical and practice implications for both health and social care professions. More research is needed to support dyadic strategies for stroke survivors.
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Venables, Emilie. "‘Atomic Bombs’ in Monrovia, Liberia." Anthropology in Action 24, no. 2 (June 1, 2017): 36–43. http://dx.doi.org/10.3167/aia.2017.240205.
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AbstractSurvivors of the Ebola virus have been widely profiled as the success stories of the outbreak, yet they still face challenges relating to their identity and reintegration. A survivor’s body takes on new meanings after experiencing Ebola, and the label ‘survivor’ is as problematic as it is celebratory. Using data conducted during fieldwork in Monrovia, Liberia, this article discusses the complex identities of Ebola survivors. In Monrovia, most of the stigma and discrimination relating to survivors was directed towards men, who were considered ‘atomic bombs’ because of concerns that they could transmit Ebola through sexual intercourse. Health promotion messages around sexual transmission were often misunderstood, and communities requested the quarantine of men to reduce what they felt was a threat to the wider community. Understanding the meanings and sources of such stigmatisation is necessary to be able to work with and support survivors through psychosocial care and health promotion activities.
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Stephan, Rana M., Vina Vargas, and Clifford C. Sheckter. "730 Does Post-hospitalization Outreach Create a Sustainable Burn Survivor Community?" Journal of Burn Care & Research 45, Supplement_1 (April 17, 2024): 214. http://dx.doi.org/10.1093/jbcr/irae036.273.
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Abstract Introduction Burn survivors face many challenges after injury. Physical challenges include persistent wounds, scar contractures, thermal body dysregulation, and loss of limb. The psychological challenges can be equally challenging. Confronting isolation, depression, anxiety, post-traumatic stress, guilt, and change in body image are some of the many obstacles burn survivors face. However, a burn survivor’s participation in a burn community has shown to help alleviate the stress of reintegration by improving social interaction, maintaining friendships, improving body image, and giving tools to communicate. We hypothesize that post-hospital outreach develops a sustainable community for burn survivors. Methods Burn survivor outreach begins during hospitalization. Burn center staff are versed on the spectrum of outreach services, and patients are invited to partake in events, as appropriate. Support group is the primary introduction to outreach services, as patients and survivors are invited to a monthly group. Additionally, post-hospital outreach consists of regular community events, recreational programs, one-on-one peer support, virtual support group and volunteer opportunities. Participation in burn outreach is voluntary at the time of hospitalization and at discharge, with patients agreeing to receive monthly burn newsletter with information about community outreach events, including support group. All voluntary participants were reviewed from 2018 – 2023 from an ABA verified burn center. Survivor community sustainability was measured by the number of survivors coming to support group. Results Support groups were held monthly from 2018-2023, totally 69 sessions involving 61 burn staff. During the COVID-19 pandemic, support group was adapted to online version for 20 months. Post-pandemic, support group has been conducted hybrid (virtual and in-person). 372 burn survivors agreed to receive information about community outreach and support group of which 49% (182) participated. Of the 182 that participated, 111 were female and 71 were male. 11 brought family to support group. 113 participants only attended one session, while 90 participants attended two or more. Attendance ranged from 2 to 50, with a median of 25 in attendance. The median number of sessions attended per survivor was 4.0 for all-comers and 9.2 for those who attended 2 or more sessions. Conclusions Burn survivor support group demonstrated consistent participation validating its purpose. Through building a community, psychological healing continues post-hospitalization. Furthermore, the sense of burn community is deepened by not only by continued participation in group but also by survivors extending into other outreach events. Applicability of Research to Practice Regular support group creates a sustainable burn survivor community for those interested in participation. The hybrid format is conducive to many lifestyles and can be adopted by burn centers across the US.
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Halpern, Michael T., Brenda Vincent, and Dana Wollins. "Physician office visits for cancer survivors: Results from a national survey." Journal of Clinical Oncology 34, no. 3_suppl (January 20, 2016): 33. http://dx.doi.org/10.1200/jco.2016.34.3_suppl.33.
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33 Background: Cancer survivors may require specialized medical care to address their unique needs. However, there are few reports of nationally-representative outpatient-care patterns among survivors. Methods: We examined adult cancer survivors’ outpatient medical visits using data from the 2010 & 2012 National Ambulatory Medical Care Survey (NAMCS), a survey of U.S. physician office-based visits. Survivors were identified as individuals with medical visits related to cancer (based on physician diagnosis codes or patient-supplied reasons for visit) but who did not currently have cancer. Weights from the NAMCS were used to produce results corresponding to the overall U.S. population. Results: The NAMCS data included 477 survivor visits, corresponding to a two-year nationally-representative weighted total of 7,435,753 visits. Most survivors were White (75%); 13% were Black and 8% Hispanic. Most survivors had private insurance (49%) or Medicare (40%); 4% had Medicaid. Almost all (99%) saw a physician during the recorded visit. Only 20% of survivor’s outpatient visits were with oncologists; 20% were with primary care physicians, 12% with OB/GYN physicians, 5% with general surgeons, and more than one-third (35%) with other physician specialties. The most common services received during survivors' visits include general physical exams (57%) and imaging studies (20%). Visits with oncologists were less likely to include depression screening or counseling regarding nutrition, exercise, stress management, tobacco use, or weight reduction than were visits with other types of physicians. Conclusions: Cancer survivors experience diverse outpatient medical care interactions; only a minority of these are with oncologists. Oncologist visits are less likely to involve important counseling services. The NAMCS represents an important data source for examining outpatient care patterns among survivors.
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Gilmore, Katherine Ramsey, Shamsha Damani, Rachel M. King, Bonnie Nelson, Allica Austin, Sally Scroggs, Therese Bartholomew Bevers, and Frances Ann Zandstra. "A program evaluation of best practice methods to assess integrated health needs for breast cancer survivors." Journal of Clinical Oncology 32, no. 30_suppl (October 20, 2014): 111. http://dx.doi.org/10.1200/jco.2014.32.30_suppl.111.
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111 Background: A fundamental tenet of survivorship care is to identify and deliver a wide range of supportive care services. Survivors rely on clinicians to provide integrated care personalized to their own supportive care needs. Yet there is lack of evidence demonstrating which method is “best practice” when assessing survivor’s needs. The aim of our Plan-Do-Study-Act quality improvement project was to determine the best method to identify survivors’ supportive care needs and coordinate services. Methods: We used the appointment list of the Breast Survivorship Clinic to identify 114 adult survivors seen for their initial survivorship visit between January-March 2014. Survivors were asked to complete a questionnaire assessing their needs related to: 1) energy-balance, 2) complementary medicine, 3) lymphedema, 4) psychosocial concerns, 5) sexual health, and 6) tobacco use. Survivors were randomly assigned into 3 groups to identify the best method to assess their health care needs: 1) Mail, 2) Secure Electronic Messaging, and 3) Navigation Visit with Health Educator (HE). Questionnaires for the mail and electronic messaging groups were distributed before being seen in the clinic. Navigation participants completed the questionnaire during the visit with HE. Descriptive statistics were used to describe and compare group characteristics. Results: A total of 114 patients were randomized to complete the assessment by either mail (N=28), secured electronic message (N=50), or during the navigation visit (N=36). The in-person, navigation visit had the highest completion rate (78%) compared to secured message (22%), and mail (7%). An overwhelming majority of survivors’ in the navigation group (93%) indicated they had needs in in at least one of the 6 domains. The top two needs across all groups were nutrition and physical activity. Conclusions: This evaluation suggests the use of a health navigator to guide the survivor through the needs assessment was the most successful way to assess needs of long-term breast cancer survivors. Enhanced navigation during a cancer survivor’s visit can be used to tailor integrative health services, which can improve their well-being and mental health outcomes.
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Shen, Beiyi, Wei Hou, Zhao Jiang, Haifang Li, Adam J. Singer, Mahsa Hoshmand-Kochi, Almas Abbasi, et al. "Longitudinal Chest X-ray Scores and their Relations with Clinical Variables and Outcomes in COVID-19 Patients." Diagnostics 13, no. 6 (March 15, 2023): 1107. http://dx.doi.org/10.3390/diagnostics13061107.
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Background: This study evaluated the temporal characteristics of lung chest X-ray (CXR) scores in COVID-19 patients during hospitalization and how they relate to other clinical variables and outcomes (alive or dead). Methods: This is a retrospective study of COVID-19 patients. CXR scores of disease severity were analyzed for: (i) survivors (N = 224) versus non-survivors (N = 28) in the general floor group, and (ii) survivors (N = 92) versus non-survivors (N = 56) in the invasive mechanical ventilation (IMV) group. Unpaired t-tests were used to compare survivors and non-survivors and between time points. Comparison across multiple time points used repeated measures ANOVA and corrected for multiple comparisons. Results: For general-floor patients, non-survivor CXR scores were significantly worse at admission compared to those of survivors (p < 0.05), and non-survivor CXR scores deteriorated at outcome (p < 0.05) whereas survivor CXR scores did not (p > 0.05). For IMV patients, survivor and non-survivor CXR scores were similar at intubation (p > 0.05), and both improved at outcome (p < 0.05), with survivor scores showing greater improvement (p < 0.05). Hospitalization and IMV duration were not different between groups (p > 0.05). CXR scores were significantly correlated with lactate dehydrogenase, respiratory rate, D-dimer, C-reactive protein, procalcitonin, ferritin, SpO2, and lymphocyte count (p < 0.05). Conclusions: Longitudinal CXR scores have the potential to provide prognosis, guide treatment, and monitor disease progression.
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Laufer, Talya, Bryan Lerner, Anett Petrich, Anna M. Quinn, Leah Ernst, Alicin Roop, Janet Knoblauch, et al. "Evaluation of a Technology-Based Survivor Care Plan for Breast Cancer Survivors: Pre-Post Pilot Study." JMIR Cancer 5, no. 2 (December 20, 2019): e12090. http://dx.doi.org/10.2196/12090.
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Background As of 2016, almost 16 million individuals were cancer survivors, including over 3.5 million survivors of breast cancer. Because cancer survivors are living longer and have unique health care needs, the Institute of Medicine proposed a survivor care plan as a way to alleviate the many medical, emotional, and care coordination problems of survivors. Objective This pilot study for breast cancer survivors was undertaken to: (1) examine self-reported changes in knowledge, confidence, and activation from before receipt to after receipt of a survivor care plan; and (2) describe survivor preferences for, and satisfaction with, a technology-based survivor care plan. Methods A single group pretest-posttest design was used to study breast cancer survivors in an academic cancer center and a community cancer center during their medical visit after they completed chemotherapy. The intervention was a technology-based survivor care plan. Measures were taken before, immediately after, and 1 month after receipt of the survivor care plan. Results A total of 38 breast cancer survivors agreed to participate in the study. Compared to baseline levels before receipt of the survivor care plan, participants reported increased knowledge both immediately after its receipt at the academic center (P<.001) and the community center (P<.001) as well as one month later at the academic center (P=.002) and the community center (P<.001). Participants also reported increased confidence immediately following receipt of the survivor care plan at the academic center (P=.63) and the community center (P=.003) and one month later at both the academic center (P=.63) and the community center (P<.001). Activation was increased from baseline to post-survivor care plan at both the academic center (P=.05) and community center (P<.001) as well as from baseline to 1-month follow-up at the academic center (P=.56) and the community center (P<.001). Overall, community center participants had lower knowledge, confidence, and activation at baseline compared with academic center participants. Overall, 22/38 (58%) participants chose the fully functional electronic survivor care plan. However, 12/23 (52%) in the community center group chose the paper version compared to 4/15 (27%) in the academic center group. Satisfaction with the format (38/38 participants) and the content (37/38 participants) of the survivor care plan was high for both groups. Conclusions This study provides evidence that knowledge, confidence, and activation of survivors were associated with implementation of the survivor care plan. This research agrees with previous research showing that cancer survivors found the technology-based survivor care plan to be acceptable. More research is needed to determine the optimal approach to survivor care planning to ensure that all cancer survivors can benefit from it.
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Fulginiti, Anthony, and Laura M. Frey. "Suicide Attempt Survivorship and Designation as a Concealable Stigmatized Identity." Families in Society: The Journal of Contemporary Social Services 99, no. 3 (June 22, 2018): 193–208. http://dx.doi.org/10.1177/1044389418781556.
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Despite literature on unique challenges faced by people living with concealable stigmatized identities (CSIs), no research has explored this concept among suicide attempt survivors. Social network interviews with 26 attempt survivors about their family relationships were used to assess whether attempt-survivor status is consistent with CSI criteria. Participants concealed their attempt from 51% of family members and perceived that 46% of them held stigmatizing attitudes toward attempt survivors. Additionally, 42% agreed that being a survivor is central to who they are, and 46% indicated they commonly thought about being an attempt survivor. Applying the CSI concept to attempt survivors establishes conceptual linkages to resources and interventions developed for other CSIs, which could increase the field’s ability to respond to attempt-survivor needs.
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McManamon, Alyssa Claire, and Marie Thompson. "Survivors’ stories are the teacher: Narrative mapping and survivorship care plans as educational innovation for pre-clerkship medical students." Journal of Clinical Oncology 35, no. 5_suppl (February 10, 2017): 90. http://dx.doi.org/10.1200/jco.2017.35.5_suppl.90.
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90 Background: The IOM’s recommendation for Survivorship Care Plans (SCPs) has met slow adoption, further hampered by growth in survivorship. Inviting patients into SCP creation supports individualized care goals. Narrative mapping is a visual tool to navigate challenging communicative landscapes. We describe an educational innovation that values SCP completion, engages physicians & trainees to solicit patient narrative, and allows emergence of collaborative care. We hypothesized it is feasible to: provide preclerkship medical students “legitimate peripheral participation” via meaningful use of the electronic health record (EHR) to review an individual patient’s cancer history; engage survivors and learners through narrative mapping to improve the SCP process; provide a student-prepared, clinician/survivor vetted SCP, leveraging UME in support of survivors’ needs. Methods: 170 second-year students at the Uniformed Services University were invited to enroll in a pilot curriculum on cancer survivorship. Oncology providers identified patients without an SCP and interested in sharing their stories since time of diagnosis. Survivors and students (in separate 90 min workshops) created and shared drawn maps of personal health stories. Students received EHR training to inform use of the ASCO SCP template for an assigned survivor. Following student-survivor review of survivors’ narrative maps, triads (student-survivor-oncologist) met to finalize SCPs for EHR upload. Results: Over three months, 18 medical students drafted an SCP on behalf of an assigned survivor. 19 survivors received an SCP following creation and sharing of their narrative map. Post-pilot, 95% of participating students submitted written reflections (uniformly positive) and survivors requested to remain involved in UME, finding meaning in sharing their stories. Conclusions: Survivors are enthusiastic educational partners in complex care environments. It is feasible to engage medical students with cancer survivors to create SCPs, with narrative mapping as a contextualizing approach. UME learning needs dovetail with those of survivors to address the call for SCP adoption.
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Clevenger, Shelly, and Jordana Navarro. "The “Third-Victimization”: The Cybervictimization of Sexual Assault Survivors and Their Families." Journal of Contemporary Criminal Justice 37, no. 3 (May 25, 2021): 356–78. http://dx.doi.org/10.1177/10439862211001616.
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Sexual assault has a devastating effect on survivors as well as their family and friends (i.e., secondary survivors). Research shows that survivors’ abilities to cope in the aftermath of sexual trauma are particularly difficult in the “internet” age. This struggle stems from the abilities of perpetrators to use cyberspace to abuse, harass, and threaten survivors vis-à-vis various cybercrimes: cyberstalking, cybersexual abuse, and cyberfraud. Indeed, a survivor in this study referred to the cybervictimizations as the “third-victimization” because it followed the sexual assault (first) and the “revictimization” experienced during the pursuit of justice (second). This article presents the results of semistructured interviews about the third-victimization of 48 female survivors and 89 secondary survivors, the family of the survivor. These results show that all primary and most secondary survivors (91%) experienced at least one third-victimization, with a majority experiencing multiple forms.
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Catzen, Hannah Z., Christopher Kobe, Paul Abrahamse, Kevin C. Ward, Sarah T. Hawley, and Christine M. Veenstra. "Communication and fear of recurrence in colorectal cancer survivors and their partners." JCO Oncology Practice 19, no. 11_suppl (November 2023): 502. http://dx.doi.org/10.1200/op.2023.19.11_suppl.502.
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502 Background: Little is known about how colorectal (CRC) survivors and their partners communicate about cancer or about their fears of recurrence. CRC survivors who are discordant with their partner in communication about cancer and fear of recurrence may have worse health-related quality of life (HrQoL), but this is not known. Methods: From 2019-2020 we surveyed survivors of stage III CRC diagnosed 2014-2018 at an academic cancer center, a community oncology practice, and the Georgia cancer registry, and their domestic partners. We measured dyadic communication about cancer using the 23-item Lewis Mutuality and Interpersonal Sensitivity Scale (MIS). To measure fear of recurrence, we asked survivors and partners 3 questions about how often worry about recurrence has a negative psychosocial impact in their life. We measured survivors’ HrQoL using the PROMIS-29+2 profile, v 2.1. We used bivariate analyses and multivariable logistic regressions to 1) compare paired survivor and partner responses to individual items about communication in the MIS and compare fear of recurrence scores, 2) describe characteristics of dyads who were discordant in communication and fear of recurrence, 3) assess associations between survivors’ HrQoL and discordance in communication and fear of recurrence. Results: 501/986 eligible survivors returned surveys (51% response rate). 428 survivors (86%) had a partner; 311 partners (73%) returned surveys. We analyzed data from 307 paired survivor-partner dyads. Survivors were mostly > age 50 (88%), male (64%), white (77%) and had at least some college education (77%). 6/23 MIS items (23%) evoked discordant responses in ≥30% of dyads (Table). Most dyads were concordant in responses to fear of recurrence questions. Greater dyadic discordance in communication and fear of recurrence was differentially associated (p<0.05) with some survivor factors and partner factors (communication: female survivor gender and greater partner education; recurrence: younger survivor age). Worse survivor HRQoL was associated with greater discordance in fear of recurrence (p<0.01) but not with discordance in communication (p=0.55). Conclusions: There is dyadic discordance in communication about negative feelings, sadness, and fear about the cancer. Dyadic discordance in fear of recurrence is associated with worse survivor HRQoL. Clinicians should be aware of and acknowledge negative feelings and fear during surveillance.[Table: see text]
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Pradhan, Savana. "Overview of Gang Rape Registered in High Court Province Five of Nepal: An Analytical Study." Women's Health Science Journal 5, no. 1 (2021): 1–7. http://dx.doi.org/10.23880/whsj-16000157.
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Rape, which is a heinous crime criminalized by law in Nepal is increasing and includes cases of gang rape. The Case Law Study was done on the 5 years registered cases of gang rape in High Court, Butwal Bench with official ethical permission. There are 6 district courts under the jurisdiction of High Court with diverse population and geographical distribution. There were 472 cases registered as sexual violence. 141 cases with 149 survivors were awarded with final summary hearing; 12% of these were gang rape cases. There were 18 survivors of gang rape with 52 male perpetrators. More than half the survivors of gang rape were minors and almost 90% of perpetrators were adult men, two third of them known to the survivor. The gang attacked to rape a sole vulnerable survivor range from 2 to 8 perpetrators. There were more than 10% male children accompanying adults in the activity. Most of the noted site of gang rape was fields, followed by the survivor’s home. Two thirds of the cases had medical evidence suggestive of violence. One third of the cases were acquitted due to lack of evidence, and few of the survivors were punished with fines for wrongful accusation in the final verdict. There are several challenges and loopholes in the socio-cultural as well as criminal justice system in Nepal which demands to be scrutinized to justify the maxim, ‘Let hundred guilty be acquitted but one innocent should not be convicted’ in heinous crimes such as gang rape.
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Williamson, Rebecca S., Brooke O. Cherven, Jordan Gilleland Marchak, Paula Edwards, Michael Palgon, Cam Escoffery, Lillian R. Meacham, and Ann C. Mertens. "Meaningful Use of an Electronic Personal Health Record (ePHR) among Pediatric Cancer Survivors." Applied Clinical Informatics 26, no. 01 (2017): 250–64. http://dx.doi.org/10.4338/aci-2016-11-ra-0189.
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Summary Background and Objectivs: Survivors of pediatric and adolescent cancer are at an increased risk of chronic and debilitating health conditions and require life-long specialized care. Stand-alone electronic personal health records (ePHRs) may aid their self-management. This analysis characterizes young adult survivors and parents who meaningfully use an ePHR, Cancer SurvivorLinkTM, designed for survivors of pediatric and adolescent cancer. Methods: This was a retrospective observational study of patients seen at a pediatric survivor clinic for annual survivor care. Young adult survivors and/or parent proxies for survivors <18 years old who completed ePHR registration prior to their appointment or within 90 days were classified as registrants. Registrants who uploaded or downloaded a document and/or shared their record were classified as meaningful users. Results: Overall, 23.7% (148/624) of survivors/parents registered and 38% of registrants used SurvivorLink meaningfully. Young adult registrants who transferred to adult care during the study period were more likely to be meaningful users (aOR: 2.6 (95% CI: 1.1, 6.1)) and used the ePHR twice as frequently as those who continued to receive care in our institution’s pediatric survivor clinic. Among survivors who continued to receive care at our institution, being a registrant was associated with having an annual follow-up visit (aOR: 2.6 (95% CI: 1.2, 5.8)). Conclusions: While ePHRs may not be utilized by all survivors, SurvivorLink is a resource for a subset and may serve as an important bridge for patients who transfer their care. Using SurvivorLink was also associated with receiving recommended annual survivor care.
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Lumbasi, Joseph, and Ian Barron. "Male Survivor Perceptions of Seeking Support: Hermeneutic Analysis of a Cluster Case Study." International Journal of Social Work 3, no. 1 (May 2, 2016): 91. http://dx.doi.org/10.5296/ijsw.v3i1.8626.
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<p>Studies with male survivors of child sexual abuse (CSA) are limited in focus and only one study, to date, has explored survivor perceptions of sexual assault treatment services. The current study, sought to deepen the understanding of survivor experience by identifying the triggers and barriers for seeking support as well as how survivors overcome these barriers. A cluster case study design was used with three adult males. A hermeneutic analysis was utilized to identify and explore meanings from male survivor perspectives. The study found male survivors dealt with barriers to support, through a range of strategies, including adopting helping others, rather than seeking sexual assault treatment services. Hermeneutic analysis was identified as an empowering process that enabled male survivors express their experiences. Large scale studies are needed to explore the potential wide range of male survivor experience.</p>
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Hellman, Chan M., Casey Gwinn, Gael Strack, Michael Burke, Ricky T. Munoz, Shane R. Brady, Natalia Aguirre, and Yesenia Aceves. "Nurturing Hope and Well-Being Among Survivors of Domestic Violence Within the Family Justice Center Model." Violence and Victims 36, no. 5 (October 1, 2021): 651–66. http://dx.doi.org/10.1891/vv-d-19-00123.
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Family Justice Centers (FJCs) represent a multi-disciplinary coordinated approach co-located to serve survivors of domestic violence. This study examined the change in hope and well-being among 130 survivors receiving domestic violence services through seven FJCs. Using a pretest, posttest design, Analyses of Variance results indicated that survivors exhibited robust increases in hope, emotional well-being, and flourishing. Correlational analyses showed that survivor defined goal success has important relationships with hope and well-being. Finally, hierarchical regression analyses revealed hope contributed unique variance of survivor flourishing over-and-above survivor defined success and emotional well-being. These findings are discussed in the context that hope may be an important coping resource for survivors of domestic violence and offers a common conceptual framework for FJCs.
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Schachter, Candice L., Carol A. Stalker, and Eli Teram. "Toward Sensitive Practice: Issues for Physical Therapists Working With Survivors of Childhood Sexual Abuse." Physical Therapy 79, no. 3 (March 1, 1999): 248–61. http://dx.doi.org/10.1093/ptj/79.3.248.
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Abstract Background and Purpose. The high rates of prevalence of childhood sexual abuse in the United States and Canada suggest that physical therapists work, often unknowingly, with adult survivors of childhood sexual abuse. The purposes of this qualitative study were to explore the reactions of adult female survivors of childhood sexual abuse to physical therapy and to listen to their ideas about how practitioners could be more sensitive to their needs. The dynamics and long-term sequelae of childhood sexual abuse, as currently understood by mental health researchers and as described by the participants, are summarized to provide a context for the findings of this study. Subjects and Methods. Twenty-seven female survivors (aged 19–62 years) participated in semistructured interviews in which they described their reactions to physical therapy. Results. Survivors' reactions to physical therapy, termed “long-term sequelae of abuse that detract from feeling safe in physical therapy,” are reported. Participant-identified suggestions that could contribute to the sense of safety are shared. Conclusions and Discussion. Although the physical therapist cannot change the survivor's history, an appreciation of issues associated with child sexual abuse theoretically can increase clinicians' understanding of survivors' reactions during treatment. We believe that attention by the physical therapist to the client's sense of safety throughout treatment can maximize the benefits of the physical therapy experience for the client who is a survivor. [Schachter CL, Stalker CA, Teram E. Toward sensitive practice: issues for physical therapists working with survivors of childhood sexual abuse.
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Feigelman, Beverly, and William Feigelman. "Surviving After Suicide Loss: The Healing Potential of Suicide Survivor Support Groups." Illness, Crisis & Loss 16, no. 4 (October 2008): 285–304. http://dx.doi.org/10.2190/il.16.4.b.
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With participant observations from peer-facilitated suicide survivor support group meetings, collected over a four-year period, this article applies Shulman's dynamics of mutual aid theory to explain how survivors' healing is facilitated by support group participation. Shulman's principles provide guidance on how survivors help and empower each other to deal with their grief in survivor support groups. Group facilitators can provide more clarity and direction to survivors with Shulman's principles, better helping survivors to navigate the bewildering course of healing after suicide loss. We also suggest ways group facilitation knowledge—an essential resource for enhancing healing—can be more widely distributed.
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McGinn, Tony, Mary McColgan, Margaret Daly, and Brian Taylor. "Participants' Views About the Survivor Contact Element of IPV Perpetrator Programs: A Preliminary Study." Violence and Victims 34, no. 6 (December 1, 2019): 889–909. http://dx.doi.org/10.1891/0886-6708.vv-d-17-00150.
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Advocacy services, for victims and survivors, are at the core of our response to Intimate Partner Violence (IPV). The survivor contact element of IPV perpetrator programs is recognized as a necessary safety measure for their operation. Within the context of equivocal evaluations of these programs, and the impetus to find opportunities to enhance their effectiveness, this study report explores the service user perspective on survivor contact work. In-depth semi-structured interviews were completed with 18 perpetrators and 18 survivors involved in three Irish-based programs, and findings were analyzed using grounded theory principles. Almost without exception, survivors were positive about their engagement with an outreach service. There was evidence to suggest that perpetrator program outreach services do reach survivors who may not ordinarily make contact with an advocacy service. In general terms, survivors felt validated as survivors, they felt supported, they learned about abusive behaviors and some saw the service as a monitor of what their partner was saying during group work. However, some survivors described their fear that any reports of ongoing abuse, which they offered, would attract reprisals from their partner or the attentions of child protection services. More determined application of criminal justice measures, and enhanced resourcing of the survivor contact element of these programs, should be considered.
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BUDABIN, GEORGE. "Survivors Day." Palliative and Supportive Care 5, no. 2 (May 22, 2007): 175–76. http://dx.doi.org/10.1017/s1478951507070265.
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Castro, Alexis, Marissa Muro, William Dominic, and Nicole M. Kopari. "561 Impact of Support Group for Teen Burn Survivors." Journal of Burn Care & Research 41, Supplement_1 (March 2020): S121—S122. http://dx.doi.org/10.1093/jbcr/iraa024.189.
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Abstract Introduction The recovery of a burn survivor continues long after the physical wounds are healed. Peer support groups offer survivors an opportunity for psychosocial recovery, particularly in the areas of self-acceptance, changes in perspective, and identity. Multiple published studies have found group support to be beneficial. We identified a need to provide a separate teen burn survivor support group to optimize engagement and to address specific age appropriate discussions. Methods The support group included female burn survivors 14–17 years of age. The group sessions were facilitated by a child life specialist and a burn nurse. Meetings were held on the same evenings as adult support groups to allow parents of the teen survivors to attend the adult meeting. During the first meeting, participants were given the opportunity to share topics they would like to discuss, and these were incorporated into the curriculum. Topics specific to teens included identity issues, body image, peer relationships, and what it means to be a burn survivor advocate. Additional outings have been incorporated such as family dinners and movie nights. After 15 months, participants were surveyed on their overall experience. Results The group was established in February 2018 and has had a steady participation of teen burn survivors. All teen burn survivors completed the participation survey. All teens strongly agreed their experience was positive, felt more connected to the other participants through the group activities, felt accepted by the other group members, and would recommend the teen support group to other teen burn survivors. Teens rated positive results for learning about themselves as a burn survivor, changing their perspective on their recovery, and the importance of participating in a support group. Conclusions Teen burn survivor support group has been shown to be a sustainable method to support these burn survivors and provide them with an opportunity for psychosocial recovery. Applicability of Research to Practice By sharing our experience with a teen burn survivor support group, we hope to inspire other burn centers in developing ways that their facility can meet the needs of burn survivors.
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ANDERSON, SHARON, and NORAH KEATING. "Marriage after the transition to stroke: a systematic review." Ageing and Society 38, no. 11 (June 19, 2017): 2241–79. http://dx.doi.org/10.1017/s0144686x17000526.
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ABSTRACTIn health and chronic illness, satisfying marriages promote wellbeing and life satisfaction, yet stroke research has focused on either the stroke survivor as the patient or the spouse as a care-giver. Using Pope, Mays and Popay's framework for synthesising qualitative and quantitative methods, we conducted a systematic review and synthesis of 39 peer-reviewed studies to determine what happens to marital relationships after one partner has suffered a stroke. All the articles examined the impact of stroke. Three overarching themes characterise the evolution of marriage after stroke: chaos in the marriage, work to re-establish the marriage and evolution of the marriages. While both the stroke condition itself and the survivors’ need for care undermined the emotional qualities of the relationship for some couples, about two-thirds were able to retain or regain the relationship closeness. As in other chronic illnesses, the relationship closeness and a couple's ability to collaborate contributed to the survivor's recovery and to the satisfaction with life of the stroke survivor and the spouse. Our results underscore the need to consider the quality of, and the qualities of, the relationship between stroke survivors and their spouses. Future research could include a greater focus on qualitative or mixed-methods approaches to explore the interactions between stroke survivors and spouses that impact the wellbeing of both partners.
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Record, Elizabeth O., and Lillian R. Meacham. "Survivor care for pediatric cancer survivors." Current Opinion in Oncology 27, no. 4 (July 2015): 291–96. http://dx.doi.org/10.1097/cco.0000000000000195.
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Harel, Zev. "Serving Holocaust Survivors and Survivor Families." Marriage & Family Review 21, no. 1-2 (February 8, 1995): 29–49. http://dx.doi.org/10.1300/j002v21n01_03.
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Pantaleon, Karisma, Courtney Chan, Ying Yuan, and Jenny J. Lin. "Illness perception and concordance between prostate cancer survivors and caregivers and adherence to self-management behaviors." Journal of Clinical Oncology 40, no. 16_suppl (June 1, 2022): e24002-e24002. http://dx.doi.org/10.1200/jco.2022.40.16_suppl.e24002.
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e24002 Background: Illness beliefs are important determinants of self-management behaviors (SMBs). Spousal or informal caregiver involvement improves clinical outcomes in non-cancer survivors with chronic diseases. However, very little is known about the influence that caregivers have on comorbid disease SMBs in cancer survivors. In this study, we aim to understand and identify concordance in illness beliefs and perceptions between caregivers and prostate cancer survivors and to determine their impact on hypertension (HTN) SMBs. Methods: Survivors and their caregivers completed surveys assessing their beliefs and perceptions and SMBs regarding survivors’ HTN. Both survivors and caregivers answered the Brief Illness Perception Questionnaire (BIPQ) to assess beliefs and perceptions of survivors’ HTN. The BIPQ score is a sum of eight questions with a higher sum score indicating a more threatening view of the illness. Survivors reported adherence to SMBs using the Medication Adherence Report Scale (MARS) and Hypertension Self-Care Activity Level Effects (HSCALE). MARS scores >4.5 were considered adherent. The HSCALE isdivided into five sub-scores – diet, physical activity, smoking behavior, weight management and alcohol intake and each was score was dichotomized. Cohen’s Kappa statistic assessed concordance between survivor and caregiver dyad responses to the BIPQ. Logistic regression assessed associations between survivor and caregiver BIPQ scores and odds of SMB adherence. Results: This analysis included 55 dyads. Mean age of survivors was 70.4 years ± 9.6; 12 (22%) were Black, 36 (65%) were White, 2 (4%) were Asian and 3 (5%) were other race. Mean age of caregivers was 64.4 years ± 10.5, 9 (16%) self-identified as Black, 35 (64%) White, 2 (4%) Asian and 3 (5%) other race. Survivors and caregivers had fair agreements about how much HTN affected survivors’ lives (k = 0.147, p = 0.008), how concerned survivors are about their HTN k = 0.130, p = 0.014), and HTN’s emotional impact on survivors (k = 0.185, p = 0.002). However, survivor-caregiver concordance about HTN had no significant impact on survivors’ SMBs. In contrast, caregivers’ beliefs about HTN was associated with survivors’ SMB such that a 1-point increase in caregiver’s BIPQ score was associated with 8% increase in the odds of survivors’ self-reported weight adherence (p = 0.0314). Survivors’ HTN beliefs were not associated with adherence to SMBs. Conclusions: Caregivers have a significant influence on prostate cancer survivors’ adherence to weight-related SMB, demonstrating that it is important to also educate caregivers who support cancer survivors with chronic comorbidities. Future analysis will include a larger cohort to better understand the interrelationship between caregivers’ illness beliefs and survivors’ SMBs and may help clinicians better direct interventions to improve survivorship outcomes.
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Pantaleon, Karisma, Courtney Chan, Ying Yuan, and Jenny J. Lin. "Illness perception and concordance between prostate cancer survivors and caregivers and adherence to self-management behaviors." Journal of Clinical Oncology 40, no. 16_suppl (June 1, 2022): e24002-e24002. http://dx.doi.org/10.1200/jco.2022.40.16_suppl.e24002.
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e24002 Background: Illness beliefs are important determinants of self-management behaviors (SMBs). Spousal or informal caregiver involvement improves clinical outcomes in non-cancer survivors with chronic diseases. However, very little is known about the influence that caregivers have on comorbid disease SMBs in cancer survivors. In this study, we aim to understand and identify concordance in illness beliefs and perceptions between caregivers and prostate cancer survivors and to determine their impact on hypertension (HTN) SMBs. Methods: Survivors and their caregivers completed surveys assessing their beliefs and perceptions and SMBs regarding survivors’ HTN. Both survivors and caregivers answered the Brief Illness Perception Questionnaire (BIPQ) to assess beliefs and perceptions of survivors’ HTN. The BIPQ score is a sum of eight questions with a higher sum score indicating a more threatening view of the illness. Survivors reported adherence to SMBs using the Medication Adherence Report Scale (MARS) and Hypertension Self-Care Activity Level Effects (HSCALE). MARS scores >4.5 were considered adherent. The HSCALE isdivided into five sub-scores – diet, physical activity, smoking behavior, weight management and alcohol intake and each was score was dichotomized. Cohen’s Kappa statistic assessed concordance between survivor and caregiver dyad responses to the BIPQ. Logistic regression assessed associations between survivor and caregiver BIPQ scores and odds of SMB adherence. Results: This analysis included 55 dyads. Mean age of survivors was 70.4 years ± 9.6; 12 (22%) were Black, 36 (65%) were White, 2 (4%) were Asian and 3 (5%) were other race. Mean age of caregivers was 64.4 years ± 10.5, 9 (16%) self-identified as Black, 35 (64%) White, 2 (4%) Asian and 3 (5%) other race. Survivors and caregivers had fair agreements about how much HTN affected survivors’ lives (k = 0.147, p = 0.008), how concerned survivors are about their HTN k = 0.130, p = 0.014), and HTN’s emotional impact on survivors (k = 0.185, p = 0.002). However, survivor-caregiver concordance about HTN had no significant impact on survivors’ SMBs. In contrast, caregivers’ beliefs about HTN was associated with survivors’ SMB such that a 1-point increase in caregiver’s BIPQ score was associated with 8% increase in the odds of survivors’ self-reported weight adherence (p = 0.0314). Survivors’ HTN beliefs were not associated with adherence to SMBs. Conclusions: Caregivers have a significant influence on prostate cancer survivors’ adherence to weight-related SMB, demonstrating that it is important to also educate caregivers who support cancer survivors with chronic comorbidities. Future analysis will include a larger cohort to better understand the interrelationship between caregivers’ illness beliefs and survivors’ SMBs and may help clinicians better direct interventions to improve survivorship outcomes.
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Lindahl, Carl. "We are all Survivors:Verbal, Ritual and Material Ways of Narrating Disaster and Recovery." Fabula 58, no. 1-2 (January 12, 2017): 1–24. http://dx.doi.org/10.1515/fabula-2017-0001.
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Abstract:This essay introduces a collection of articles by ethnographers concerned with the questions of how survivors narrate disaster, how survivors use traditional techniques to recover from disaster, and how ethnographers can best respond to disaster. The introduction describes a survivor-to-survivor interviewing project created in response to Hurricane Katrina in 2005, and focuses on ways in which ethnographers can help survivors simply by ceding control to them, by working with them to enhance their sense of
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Moon, Tae-Joon, Ming-Yuan Chih, Dhavan V. Shah, Woohyun Yoo, and David H. Gustafson. "Breast Cancer Survivors’ Contribution to Psychosocial Adjustment of Newly Diagnosed Breast Cancer Patients in a Computer-Mediated Social Support Group." Journalism & Mass Communication Quarterly 94, no. 2 (January 19, 2017): 486–514. http://dx.doi.org/10.1177/1077699016687724.
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This study investigated the role of breast cancer survivors in a computer-mediated social support (CMSS) group for women with breast cancer. Applying a computer-aided content analytic method, the present study examined the differences in support provision between survivors and newly diagnosed patients. This study further investigated the impacts of survivor-provided social support on psychosocial adjustment of newly diagnosed patients. The results revealed that, compared with newly diagnosed patients, breast cancer survivors provided more emotional and informational support. Receiving emotional support from survivors contributed to an improvement in the quality of life and the depression of patients. The effects of survivor-provided informational support were not significant.
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Dorgan, Kelly A., Kathryn L. Duvall, Sadie P. Hutson, and Amber E. Kinser. "Mothered, Mothering, and Motherizing in Illness Narratives: What Women Cancer Survivors in Southern Central Appalachia Reveal About Mothering-Disruption." Journal of Appalachian Studies 19, no. 1-2 (April 1, 2013): 59–81. http://dx.doi.org/10.2307/42635927.
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Abstract Informed by a mothering-disruption framework, our study examines the illness narratives of women cancer survivors living in Southern Central Appalachia. We collected the stories of twenty-nine women cancer survivors from northeast Tennessee and southwest Virginia using a multi-phasic qualitative design. Phase I consisted of women cancer survivors participating in a day-long story circle (n=26). Phase II consisted of women cancer survivors who were unable to attend the story circle; this sample sub-set participated in in-depth interviews (n=3) designed to capture their illness narratives. Participants’ illness narratives revealed the presence of: (1) mothering-disruption whereby cancer adversely impacted the mothering role; and (2) mothering-connection, whereby the cancer experience motivated mother-survivors. Participants’ illness narratives reflected that the role of mother was the preeminent role for mother-survivors and whenever there was oppositional tension between the roles of mother and survivor, the women-survivors seemed to linguistically relocate away from the survivor role and toward the mothering role. As a result, women-survivors seemingly rejected medicalization of their identities by emphasizing their mothering responsibilities, something we term motherizing.
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Buchanan, Natasha D., Jessica B. King, Juan L. Rodriguez, Arica White, Katrina F. Trivers, Laura P. Forsythe, Erin E. Kent, Julia H. Rowland, and Susan A. Sabatino. "Changes among US Cancer Survivors: Comparing Demographic, Diagnostic, and Health Care Findings from the 1992 and 2010 National Health Interview Surveys." ISRN Oncology 2013 (June 16, 2013): 1–9. http://dx.doi.org/10.1155/2013/238017.
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Background. Differences in healthcare and cancer treatment for cancer survivors in the United States (US) have not been routinely examined in nationally representative samples or studied before and after important Institute of Medicine (IOM) recommendations calling for higher quality care provision and attention to comprehensive cancer care for cancer survivors. Methods. To assess differences between survivor characteristics in 1992 and 2010, we conducted descriptive analyses of 1992 and 2010 National Health Interview Survey (NHIS) data. Our study sample consisted of 1018 self-reported cancer survivors from the 1992 NHIS and 1718 self-reported cancer survivors from the 2010 NHIS who completed the Cancer Control (CCS) and Cancer Epidemiology (CES) Supplements. Results. The prevalence of reported survivors increased from 1992 to 2010 (4.2% versus 6.3%). From 1992 to 2010, there was an increase in long-term cancer survivors and a drop in multiple malignancies, and surgery remained the most widely used treatment. Significantly fewer survivors (<10 years after diagnosis) were denied insurance coverage. Survivors continue to report low participation in counseling or support groups. Conclusions. As the prevalence of cancer survivors continues to grow, monitoring differences in survivor characteristics can be useful in evaluating the effects of policy recommendations and the quality of clinical care.
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Casillas, Jacqueline N., Qi Liu, Melissa M. Hudson, Mark Greenberg, Mark W. Yeazel, Kirsten K. Ness, Leslie L. Robison, et al. "Longitudinal changes in health care utilization by adult survivors of childhood cancer in the Childhood Cancer Survivor Study (CCSS)." Journal of Clinical Oncology 30, no. 15_suppl (May 20, 2012): 6030. http://dx.doi.org/10.1200/jco.2012.30.15_suppl.6030.
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6030 Background: The incidence of late effects increases as childhood cancer survivors age. Survivors require lifelong care focused on the risks arising from prior cancer therapy (survivor-focused care). Methods: We assessed longitudinal changes in health care utilization in adult survivors of childhood cancer participating in the CCSS. Utilization at baseline and most recent follow-up was classified into one of three mutually exclusive hierarchical categories: no health care, general medical care, or survivor-focused care. Relative risk (RR) and 95% confidence intervals (CI) were calculated for predictors of reduction in care over time from survivor-focused to general or no care. Multivariable models, adjusted for key treatment exposures, were created to assess the risk factors for reductions in level of care over time. Results: Among 8591 eligible survivors, mean age at last follow-up was 35.1 years (SD=7.8) with a mean of 11.6 years (SD=2.2) since baseline. Of 3993 (46%) survivors who reported survivor-focused care at baseline, 2383 (59.7%) reported a lower level of care at follow-up. Among 4598 (54%) not receiving survivor-focused care at baseline, 915 (20%) reported survivor-focused care at follow-up. Baseline predictors of a decreased level of care were no health insurance (RR=1.5, 95% CI 1.2-1.9), male sex (RR=1.4, 95% CI 1.2-1.6), being 10-19 years from diagnosis compared with 20+ years (RR=1.4, 95% CI 1.1-1.7). In contrast, factors associated with a maintenance in survivor-focused care were Canadian residency compared to U.S. residency with insurance (RR=0.7, 95% CI 0.6-0.9), unemployment (RR=0.8, 95% CI 0.7-0.9), physical limitations (RR=0.7, 95% CI 0.6-0.9), cancer-related pain (RR=0.7, 95% CI 0.5-0.8), poor emotional health (RR=0.7, 95% CI 0.5-0.9), having mild-moderate (RR=0.5, 95% CI 0.4-0.6) or severe-disabling chronic health condition (RR=0.6, 95% CI 0.5-0.7). Conclusions: Less than a third of adult survivors of childhood cancer report survivor-focused care. Rates decrease over time. Targeted interventions to maximize survivor-focused care in at-risk survivors should be tested so preventive and risk-reducing opportunities are not lost.
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Deeter, Lyndsay, and Rebecca Garber. "505 Support Group Lives on Virtually Despite Pandemic." Journal of Burn Care & Research 42, Supplement_1 (April 1, 2021): S99—S100. http://dx.doi.org/10.1093/jbcr/irab032.156.
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Abstract Introduction Support group for burn survivors is immensely beneficial for reintegration and normalization of the burn recovery. The corona virus pandemic, however, limited in-person interactions significantly and decreased the travel capabilities. Our regional burn center serves an 8-state region, and as such, our every other month in-person support group consisted of survivors and family members from a large geographic area. Methods Support group volunteers and staff members recognized the need for continued support of survivors during the pandemic. Limitations of large, in-person meetings were implemented by our host organization to comply with pandemic safety guidelines. Evaluation of resources available led to development of a virtually supported meeting space. Email addresses were gathered to schedule. This allowed for interaction of survivors from an unlimited geographic area. Results Support group survivor volunteers and staff met to develop parameters, topics, IT support and logistics. Every other month support group was converted to a monthly gathering virtually due to easier access by survivors. Attendees completed a survey to evaluate and make recommendations for opportunities for improvement. The same number of survivors were present for in person and virtual meetings. Conclusions During this pandemic, limitations were placed that further isolate survivors. A virtually based support group has allowed for more frequent interactions between volunteers and new survivors. Various topics were discussed including survivor preparedness for public reintegration, worker’s compensation and care giver burnout. Speakers from multiple disciplines have been able to address issues requested by survivors. In this format, we have been able to continue the support of our survivors as they continue to recover. Social distancing has isolated many people during the pandemic; virtual support group has been paramount in continuing to connect our survivor family.
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McIntosh, John L. "Survivors of Suicide: A Comprehensive Bibliography Update, 1986–1995." OMEGA - Journal of Death and Dying 33, no. 2 (October 1996): 147–75. http://dx.doi.org/10.2190/bcwl-bl0j-nly2-k161.
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An update of a 1985–86 Omega bibliography of the literature on survivors of suicide is presented. Following brief introductory comments, including the identification of research and therapy needs and unresolved issues, the bibliography listings are organized by the following subtopics: general references on family members and friends as suicide survivors; children, adolescents, youth, and parents as survivors; school and educational settings; parental suicide; elderly suicide survivors; mental health professionals and clinicians in training as survivors; survivors of professionals' suicides; and research on attitudes toward survivors. Published works in professional journals, books, book chapters, and doctoral dissertations on the topic of survivor-victims are included.
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Park, Elyse R., Anne C. Kirchhoff, Giselle K. Perez, Wendy Leisenring, Joel S. Weissman, Karen Donelan, Ann C. Mertens, et al. "Childhood Cancer Survivor Study Participants' Perceptions and Understanding of the Affordable Care Act." Journal of Clinical Oncology 33, no. 7 (March 1, 2015): 764–72. http://dx.doi.org/10.1200/jco.2014.58.0993.
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Purpose The Patient Protection and Affordable Care Act (ACA) established provisions intended to increase access to affordable health insurance and thus increase access to medical care and long-term surveillance for populations with pre-existing conditions. However, childhood cancer survivors' coverage priorities and familiarity with the ACA are unknown. Methods Between May 2011 and April 2012, we surveyed a randomly selected, age-stratified sample of 698 survivors and 210 siblings from the Childhood Cancer Survivor Study. Results Overall, 89.8% of survivors and 92.1% of siblings were insured. Many features of insurance coverage that survivors considered “very important” are addressed by the ACA, including increased availability of primary care (94.6%), no waiting period before coverage initiation (79.0%), and affordable premiums (88.1%). Survivors were more likely than siblings to deem primary care physician coverage and choice, protections from costs due to pre-existing conditions, and no start-up period as “very important” (P < .05 for all). Only 27.3% of survivors and 26.2% of siblings reported familiarity with the ACA (12.1% of uninsured v 29.0% of insured survivors; odds ratio, 2.86; 95% CI, 1.28 to 6.36). Only 21.3% of survivors and 18.9% of siblings believed the ACA would make it more likely that they would get quality coverage. Survivors' and siblings' concerns about the ACA included increased costs, decreased access to and quality of care, and negative impact on employers and employees. Conclusion Although survivors' coverage preferences match many ACA provisions, survivors, particularly uninsured survivors, were not familiar with the ACA. Education and assistance, perhaps through cancer survivor navigation, are critically needed to ensure that survivors access coverage and benefits.
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Chin, Lay Fong, Ingrid C. M. Rosbergen, Kathryn S. Hayward, and Sandra G. Brauer. "A self-directed upper limb program during early post-stroke rehabilitation: A qualitative study of the perspective of nurses, therapists and stroke survivors." PLOS ONE 17, no. 2 (February 4, 2022): e0263413. http://dx.doi.org/10.1371/journal.pone.0263413.
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Introduction This study aimed to explore the perspective of nurses, therapists and stroke survivors on the performance of upper limb self-exercise and use outside therapy during early inpatient stroke rehabilitation. Methods A descriptive qualitative approach was used in focus groups with nurses (n = 21) and therapists (n = 8), as well as in-depth semi-structured interviews with stroke survivors (n = 8) who were undergoing subacute inpatient stroke rehabilitation. Inductive thematic analysis of data was performed according to participant group. Results Nurses and therapists perceived that stroke survivors played a central role in determining the success of a self-directed upper limb program. Nurses perceived that stroke survivors needed a lot of prompting to be motivated to perform self-directed upper limb therapy outside therapy. Therapists perceived that not all stroke survivors would be able to perform self-directed upper limb therapy and deemed it important to consider stroke survivor factors before commencing a program. Although some stroke survivors expressed initial reservations with performing self-practice, many indicated that they would participate in the self-directed upper limb program because they wanted to recover faster. Conclusion A difference between the perspective of nurses/therapists and stroke survivors towards self-directed upper limb performance outside therapy was found. Deeper stroke survivor engagement and a shift in rehabilitation culture to encourage stroke survivor autonomy are important considerations for a self-directed upper limb program. Teamwork amongst healthcare professionals and families is essential to support stroke survivors to participate in a self-directed upper limb program during early inpatient stroke rehabilitation.
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Russell, K. Brooke, Erin L. Merz, Kathleen Reynolds, Fiona Schulte, and Lianne Tomfohr-Madsen. "Sleep Disturbances in Survivors of Pediatric Acute Lymphoblastic Leukemia and Their Siblings." Journal of Pediatric Psychology 45, no. 7 (June 17, 2020): 707–16. http://dx.doi.org/10.1093/jpepsy/jsaa043.
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Abstract Objective Sleep disturbances have been identified by patients with cancer as common and distressing; however, conflicting evidence about the prevalence of these outcomes exists for survivors of childhood cancers. Additionally, little is known about how the experience of cancer might impact survivor siblings’ sleep. The current study compared the sleep of survivors of acute lymphoblastic leukemia who were 2–7 years off therapy and their siblings to healthy control/sibling dyads. Methods Participants (survivors, n = 45; survivor siblings, n = 27; controls, n = 45; control siblings, n = 41; 58% male) aged 8–18 (m = 11.64) completed a 7-day sleep diary and seven consecutive days of actigraphy. Parents (n = 90) completed the Children’s Sleep Habits Questionnaire for each of their children. Results No between-group differences were found on measures of sleep diaries or actigraphy. Parents reported that survivor siblings had significantly poorer sleep habits than survivors or controls. For survivors, greater time off treatment and younger age at diagnosis were associated with less total sleep time, more wake after sleep onset, and decreased sleep efficiency via actigraphy. Conclusion Sleep across all groups was consistent and below national guidelines. Although the survivor group did not have poorer sleep compared to their siblings or matched controls, within the survivor group, those who were diagnosed at an earlier age and those who were further off treatment had more disrupted sleep. Parent reports suggested that survivor siblings may be at risk for sleep problems.
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Bernacchi, Veronica, Jamie Zoellner, Jess Keim-Malpass, and Pamela DeGuzman. "Rural Resilience in Cancer Survivors: Conceptual Analysis of a Global Phenomenon." Online Journal of Rural Nursing and Health Care 21, no. 1 (May 4, 2021): 159–78. http://dx.doi.org/10.14574/ojrnhc.v21i1.676.
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Aim: The aims of this analysis are to (1) identify the concept of rural resiliency in cancer survivors in the nursing literature and (2) propose a conceptual framework that may help nurses leverage rural resilience to improve survivorship care.
Background: Rural cancer survivors demonstrate rural resiliency by utilizing aspects of rural culture to improve their psychosocial distress. However, resiliency in rural cancer survivors is poorly understood.
Design: We used Walker & Avants’ concept analysis approach to direct article selection, review, and analysis.
Review methods: We identified a definition, antecedents, consequences, attributes, empirical referents, and related terms, and provide model, contrary, and borderline case examples.
Results: We identified 29 articles that met inclusion criteria. We propose a conceptual model of rural resiliency that is grounded in three domains of rural culture: spirituality, cultural norms, and social capital. Attributes of rural culture within these domains impact a cancer survivor’s psychosocial health, leading to either negative or positive psychosocial outcomes.
Conclusion: A better understanding of how rural resiliency impacts cancer survivors can help clinicians and researchers provide culturally-targeted post-treatment interventions. Our proposed conceptual framework may guide nurse researchers to develop measurement tools that evaluate rural resilience and its impact on health outcomes.
Keywords: rural, cancer survivor, resilience, concept analysis, conceptual frameworkDOI: https://doi.org/10.14574/ojrnhc.v21i1.676