Abstract Objective To examine the implications of use of differential thresholds for studying medical Posttraumatic Stress Disorder (PTSD). Methods Self-report data from 6,542 young adult survivors ...of childhood cancer and 374 of their siblings were used to create clearly differentially defined groups to compare prevalence, correlations and predictors of posttraumatic stress. Results Prevalence of posttraumatic stress in survivors compared to siblings differed by definition used, ranging from an odds ratio of 4.21 (95% CI 2.11–8.38) when posttraumatic stress was defined as meeting full symptoms plus functional impairment to 1.42 (95% CI 0.79–2.56) for partial symptoms with functional impairment. Re-experiencing symptoms did not substantially contribute to the ability to identify functional impairment and emotional distress. Although most of the variables associated with posttraumatic stress symptoms and impairment were consistent across definitions of PTSD, marital status and employment demonstrated nonproportional relationships. Conclusions Choice of the definition used in studying posttraumatic stress after serious illness alters not only epidemiological findings, but also associations with correlates and predictors. This is important in the current debate about the criteria for PTSD in the upcoming DSMV. Further study is needed to determine if these findings are applicable to people exposed to other types of traumatic events.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK
Although mastectomy is the standard treatment modality for breast cancer patients in Ethiopia, our previous study revealed that one in five patients do not receive the recommended procedure, half due ...to patient refusal or lack of returning to the hospital. Therefore, this study aimed to explore reasons for refusing mastectomy and identify challenges among breast cancer patients in Ethiopia.
An explorative qualitative study was conducted in four hospitals located in the towns of Woliso, Butajira, Hossana, and Assela. A total of 14 in-depth interviews (IDIs) and eight focus group discussions (FGDs) were held with breast cancer patients, patient relatives, and health professionals. Four semi-structured interview guides were used to facilitate the IDIs and FDGs. All recorded IDIs and FGDs were transcribed and translated verbatim and entered in NVivo 12 software. Emerging ideas were categorised and explained using an inductive content analysis approach.
Our participants reported that particularly elderly and very young women refuse to have mastectomy. The main reasons identified in this study were summarised into six themes: (i) fear of the surgical procedure, (ii) religious beliefs and practice, (iii) utilisation of traditional treatments, (iv) in relation to having a baby and breastfeeding their children (young patients often request to remove only the lump, leaving their breast tissue intact), (v) lack of awareness about the disease, and (vi) sociocultural factors and advice from the community that influence women, since breasts are considered an attribute of femininity, beauty, and motherhood. In addition, knowing someone who died after mastectomy emerged as a main reason for not having breast cancer surgery.
High refusal rate for mastectomy has direct implication on increased breast cancer mortality. Hence, expansion of radiotherapy service is instrumental to initiate breast-conserving surgery as an alternative surgical procedure, especially for young women with early-stage breast cancer. Involving religious leaders, traditional healers, and breast cancer survivors could be an effective strategy to persuade newly diagnosed breast cancer patients. Addressing individual patient psychosocial needs and preferences may substantially improve retention of breast cancer patients in the health system.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
24.
Managed Care Zebrack, Bradley J.; Chesler, Mark A.
Social work in health care,
01/2000, Volume:
31, Issue:
2
Journal Article
Peer reviewed
The changing organization of health care requires social workers to deal with a variety of new demands, and in some cases alter their traditional professional practice. Using the specific case of ...childhood cancer as a framework (or set of case examples), this paper identifies key issues faced by oncology social workers in hospital settings under managed care and ways they have responded to them. The general content involves pressures on oncology social workers to adapt to the new corporate culture and ideals fundamental to managed care at the same time that the expressed psychsocial needs and desires of survivors of childhood cancer necessitate increased attention and expansion of service provision. Caught in conflicts that challenge them to reconcile simultaneous commitments to client service/empowerment and institutional conformity, social workers must establish a more powerful position to negotiate institutional and public policies that uphold the primacy of a core Social Work ethic: A commitment to client-centered service.
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BFBNIB, NUK, PILJ, SAZU, UL, UM, UPUK, VSZLJ
Cancer for adolescents and young adults (AYA) differs from younger and older patients; AYA face medical challenges while navigating social and developmental transitions. Research suggests that these ...patients are under or inadequately served by current support services, which may affect health-related quality of life (HRQOL).
We examined unmet service needs and HRQOL in the National Cancer Institute's Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort (n = 484), age 15-39, diagnosed with cancer 6-14 months prior, in 2007-2009. Unmet service needs were psychosocial, physical, spiritual, and financial services where respondents endorsed that they needed, but did not receive, a listed service. Linear regression models tested associations between any or specific unmet service needs and HRQOL, adjusting for demographic, medical, and health insurance variables.
Over one-third of respondents reported at least one unmet service need. The most common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and mental health (p's < 0.0001). Specific unmet services were related to particular outcomes e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p's < 0.001). Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consistently associated with poorer functioning across domains.
Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant practices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services.
Cancer diagnosis and treatment can be physically arduous, disrupting patients' social and work lives. Understanding the extent of these problems is key to addressing patients' needs, but specific ...psychosocial challenges have not yet been well studied in resource-limited settings. A qualitative study was conducted in the capital and two regions of Ethiopia with the aim of exploring psychosocial challenges among cancer patients. A total of 14 in-depth interviews (IDIs) and 16 focus group discussions (FGDs) were done with cancer patients, health professionals, community representatives, and religious leaders. Four separate interview guides were used to facilitate the interviews and discussions. All transcribed documents, field notes, and reflexive memos were entered into NVivo 12 software, and deductive thematic analysis using the social-ecological model was applied to summarize the main findings. At an individual level, emotional distress, suicidal risk, denial, and refusal of treatment were identified immediately after diagnosis while hopelessness, feeling depressed, and fear of death were commonly reported psychosocial challenges during the course of treatment. Involvement of family members in major treatment decisions was recognized at an interpersonal level. Our result also revealed that cancer patients had strong social support from family members and close friends. In the community, traditional medicine and religious rituals were considered an alternative treatment for cancer. The findings indicate that counselling and psychoeducation are crucial for cancer patients, family members, and close friends. Awareness creation programmes should be delivered through collaboration with religious leaders and traditional healers.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK, VSZLJ
Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain ...tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support.
We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization.
This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research.
clinicaltrials.gov , Registration number: NCT04268979 ; Date of registration: February 10, 2020, retrospectively registered.
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CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Global cancer estimations for Ethiopia announced 77 352 new cases in 2020 based on the only population-based registry in Addis Ababa. This study characterizes cancer patients in rural Ethiopia at 8 ...primary and secondary hospitals between 2014 and 2019.
All clinically or pathologically confirmed cancer cases that were diagnosed between 1 May 2014 and 29 April 2019 were included. A structured data extraction tool was used to retrospectively review patients' charts and descriptive analysis was done.
A total of 1298 cancer cases were identified, of which three-fourths were females with a median age of 42 years. Breast (38%) and cervical (29%) cancers were the most common among females, while prostate (19%) and oesophageal cancers (16%) were the most common among males. Only 39% of tumors were pathologically confirmed. Nearly two-thirds of the cases were diagnosed at an advanced stage. Surgery was the only accessible treatment option for more than half of the cancer patients, and systemic treatment (except endocrine) was rarely available. One in 5 patients did not receive the recommended surgical procedure, half due to patient refusal or lack of the patient returning to the hospital.
The pattern of cancer diagnoses in rural hospitals shows an exceptionally high burden in women in their middle-ages due to breast and cervical cancers. Advanced stage presentation, lack of pathology services, and unavailability of most systemic treatment options were common. The surgery was offered to nearly 60% of the patients, showing the significant efforts of health workers to reduce sufferings.
The provision of psychosocial services has a substantial impact on cancer care by reducing emotional distress and improving both the quality of life and survival of patients, but the availability and ...utilization of such services have not been well studied in developing countries, particularly, Ethiopia. Therefore, we explored the types of psychosocial services available for breast cancer patients in Addis Ababa, Ethiopia. A mixed method study was conducted using a cross-sectional survey involving 428 breast cancer patients, followed by a qualitative study. A total of nine in-depth interviews (IDIs) were conducted with four breast cancer patients and five key informants using two separate interview guides. In addition to descriptive statistics, logistic regression was performed to identify factors associated with the provision of psychosocial services. Thematic analysis was used for the qualitative data, using NVivo 12 plus software. Only 47 (11.1%) patients received psychosocial services in the form of counselling, emotional support, or information provision. Health professionals reportedly provided such services along with their routine activities, and patients predominantly received social/emotional support from family members, friends, and colleagues. There were no well-structured counselling services, emotional support, or group discussion sessions for breast cancer patients in these health facilities. The main reasons for not providing these services were high patient flow/workload, inadequate space, lack of training, and not having qualified professionals to organise and deliver psychosocial services in these hospitals. Only one in ten breast cancer patients received psychosocial services from health professionals, and the services were not delivered in a structured way. Therefore, psychosocial services should be integrated in both private and government health facilities in Ethiopia.
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BFBNIB, FZAB, GIS, IJS, KILJ, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
Patient navigation is increasingly common in cancer care. While navigation programs often involve informal family caregivers, few navigation interventions specifically target the family caregiver. We ...developed the eSNAP and Caregiver Navigator Intervention to help cancer family caregivers identify and capitalize on informal and formal social support resources. While the skill set for patient navigators may be adequate for supporting caregivers, other skills and areas of knowledge expertise are needed. In addition, sparse documentation of navigator training best practices creates further challenges for dissemination and implementation. Our goal is to describe the education and training of cancer caregiver navigators within key competencies used to prepare and support navigators to deliver our manualized intervention. Nationally recognized navigation competencies, related to developing a sensitivity to ethical, cultural, and professional issues, knowledge development, skills development, and practice-based learning, were identified and adapted. Performance goals were identified within each competency. Training activities were selected to support competency development. Based on adult learning theories, we emphasize multiple learning strategies, including experiential learning and critical reflection. Two caregiver navigators engaged in initial training between December, 2019 and February, 2020. Initial training was supervised by study leadership, who coordinated with experts and stakeholders. Navigators completed initial training. We describe lessons learned. To ensure that navigators are well-equipped to provide effective services, evidence-based training programs that include navigation and protocol-specific competencies are needed. Given the lack of detailed training programs in the literature, we created a flexible, multimodal learning approach that other teams may adopt.
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