scholarly journals Compounded trauma: A qualitative study of the challenges for refugees living with advanced cancer

2021 ◽  
pp. 026921632110002
Author(s):  
Ping Guo ◽  
Sawsan Alajarmeh ◽  
Ghadeer Alarja ◽  
Waleed Alrjoub ◽  
Ayman Al-Essa ◽  
...  
Keyword(s):  
Social Support ◽  
Qualitative Study ◽  
Advanced Cancer ◽  
Psychosocial Support ◽  
Large Population ◽  
Community Support ◽  
Support Network ◽  
Psychosocial Needs ◽  
Physical And Mental Health ◽  
The Impact

Background: Although palliative care is now an essential health service under Universal Health Coverage, ensuring access and appropriate care for refugees is a specific challenge for this large population. Aim: To identify the needs and experiences of adult refugees in Jordan with advanced cancer and informal caregivers. Design: A qualitative study using semi-structured interviews. Setting/participants: Participants were purposively sampled at two Jordanian hospitals to achieve heterogeneity by age, gender, country of origin, and primary diagnosis. Results: Twenty-nine refugees (22 patients, 7 caregivers) participated, and four themes were generated: (1) Psychological distress and sustaining social support. Refugees often experienced unmet psychosocial needs. However, psychosocial support was reported either absent or limited. (2) Knowledge and uncertainty. Lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. (3) Family anxiety and support roles. Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. (4) Compounded trauma and poverty. Many refugees have experienced trauma related to war that may affect their physical and mental health. They faced serious financial crises caused by the rising cost of medicines and treatment. Conclusions: This study reveals the impact of fractured families and networks on social support in advanced cancer, and the compounding trauma of the disease for refugees. Detailed person-centred assessment and emphasis on psychosocial support is essential, and home-based care should not presume community support for patients to remain at home.

scholarly journals Impact of Pediatric COVID-19 on Family Health-Related Quality of Life: A Qualitative Study from Latvia

2021 ◽  
Vol 8 ◽  
pp. 2333794X2110123
Author(s):  
Inese Stars ◽  
Liene Smane ◽  
Zanda Pucuka ◽  
Ieva Roge ◽  
Jana Pavare
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Family Relationships ◽  
Family Health ◽  
Support Network ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Information on family health-related quality of life (FHRQoL) among families of children with the coronavirus disease 2019 (COVID-19) is limited. This qualitative study explores the impact of pediatric COVID-19 on FHRQoL from the parents’ perspective. Semi-structured interviews were conducted with parents (n = 20) whose children had tested positive for the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Inductive thematic analysis revealed the following 10 themes that represented parents’ perception of FHRQoL while taking care of a child with COVID-19: pediatric COVID-19 as a disease with many unknowns; emotional saturation; internal family relationships in the context of “a new experience”; routine household activities and daily regimen while family is in lockdown; plenty of free time; a wide social support network; social stigma associated with COVID-19; different options for work; savings and debts; challenges with family housing and transport availability. Our results show that parents experience multiple effects of pediatric COVID-19 with regard to FHRQoL.

Scope for Psychosocial Treatments in Psychosis: An Overview of Collaborative Therapy

2003 ◽  
Vol 11 (2) ◽  
pp. 220-224 ◽  
Author(s):  
Monica Gilbert ◽  
Kathryn Miller ◽  
Lesley Berk ◽  
Velma Ho ◽  
David Castle
Keyword(s):  
Mental Health ◽  
Psychotic Disorders ◽  
Psychosocial Support ◽  
Controlled Trial ◽  
Psychosocial Needs ◽  
Psychosocial Treatments ◽  
Mental Health Consumers ◽  
Collaborative Therapy ◽  
Modular Treatment ◽  
The Impact

Objectives: The psychosocial needs of people with psychotic disorders are not being addressed adequately. The present paper outlines a proposed framework that will help to meet some of this deficit and deliver psychosocial treatments for these individuals, as part of routine clinical practice. Conclusions: The recent Australian study on low prevalence (psychotic) disorders found that, although most Australians (91%) with a psychotic illness were taking medication, few were receiving adequate psychosocial support from mental health services; fully 47% of these saw the need for a particular type of service that was not able to be accessed by them, either because of it simply not being available or not being affordable. The programme described herein will develop, evaluate and disseminate comprehensive modular treatment packages addressing the psychosocial needs of people with psychotic disorders. It is novel in terms of the comprehensiveness of the approach, the rigour of the evaluation (using a controlled experimental design), and the extent of intersectoral and multidisciplinary involvement in mapping needs, developing the interventions, and dissemination. The potential impact for mental health consumers with psychosis is enormous because currently there is no coherent and consistent approach to addressing their psychosocial needs. The impact for the scientific community will be great because there is currently very little by way of controlled trial data in this important area of activity.

scholarly journals Red de soporte social y apoyo comunitario en miembros de una organización de desplazados por violencia política residentes en Cañete, Perú/Social Support Network and Community Support Among Members of an Organization of Persons Displaced by Political Violence Residing in Cañete, Peru

2018 ◽  
Vol 37 (2) ◽  
pp. 107
Author(s):  
Ma. Teresa Schoof Aguirre ◽  
Eduardo Manzanares Medina ◽  
Miriam Grimaldo Muchotrigo
Keyword(s):  
Social Support ◽  
Political Violence ◽  
Community Support ◽  
Positive Association ◽  
Support Network ◽  
Social Support Network ◽  
Significant Positive Association ◽  
The Social ◽  
La Red ◽  
Violencia Politica

<p><em><strong>Español</strong></em></p><p>El objetivo de la presente investigación fue determinar la relación entre la red de soporte social y el apoyo comunitario en los miembros de una organización de personas desplazadas por violencia política. Para tal fin, el estudio descriptivo correlacional incluyó a 80 participantes (49 mujeres y 31 hombres) con una edad promedio de 45.79 años (DE = 11.41), quienes residían en una provincia de Lima y provenían, en su mayoría, del departamento de Ayacucho. Se les administró el Cuestionario de Red Social (SNQ) y el Cuestionario de Apoyo Comunitario Percibido (PCSQ). Entre los principales resultados, se encontró que el componente Integración y Participación Comunitaria del PCSQ correlaciona con dos funciones y dos categorías del SNQ. Se presenta asociación positiva estadísticamente significativa con la función guía cognitiva (rs = .32), la función socialización (rs = .24) y la categoría satisfacción (rs = .24) y asociación negativa y estadísticamente significativa con la categoría heterogeneidad (rs = -.23). Se discuten las implicancias de los presentes hallazgos.</p><p> </p><p><em><strong>English</strong></em></p><p>The present study’s aim was to determine the relationship between the social support network and community support among members of an organization of persons displaced by political violence. The correlational-descriptive research included 80 individuals (49 females and 31 males) with a mean age of 45.79 years old (SD = 11.41), who reside in a province of Lima and came, mostly, from the department of Ayacucho. Participants completed the Social Network Questionnaire (SNQ), as well as the Perceived Community Support Questionnaire (PCSQ). Among the main findings, we found that the Integration component and Community Participation from the PCSQ correlate with two functions and two categories from the SNQ. Specifically there is a statistically significant positive association with the Cognitive Guide function (rs = .32), the Socialization function (rs = .24) and the Satisfaction category (rs = .24); and a statistically significant negative association with the Heterogeneity category (rs = -.23). Implications of the results obtained will be discussed in the present paper.</p>

Abstract 14127: Measures of Patient Activation and Social Support in a Peer-led Support Network for Women With CVD

Circulation ◽  
2015 ◽  
Vol 132 (suppl_3) ◽  
Author(s):  
Dawn Witt ◽  
Gretchen Benson ◽  
Arthur Sillah ◽  
Susan Campbell ◽  
Kathy Berra
Keyword(s):  
Social Support ◽  
Heart Disease ◽  
Online Survey ◽  
Local Community ◽  
Patient Activation ◽  
Well Being ◽  
Active Role ◽  
Support Network ◽  
Strong Impact ◽  
The Impact

Introduction: Social support has been recognized as having a strong impact on health and well-being and has also been shown to have beneficial effects in a wide variety of disease states. Social support from friends, family or peers can augment the care offered in traditional healthcare settings by providing advice, encouragement and education However, there is limited research on the impact of peer-led support programs among women living with cardiovascular disease (CVD). Objective: To examine the relationship between patient activation and measures of social support among women who attended a WomenHeart: The National Coalition for Women with Heart Disease peer-led support program in their local community. We hypothesized that high levels of social support would be associated with high levels of patient activation in this study population. Methods: Participants were recruited from 50 national WomenHeart Support Network groups. A 70 item, online survey was administered and the main analytic sample for this study included 157 women. Multivariable logistic regression was used to examine the association between patient activation levels (Lower activation levels: 1,2 vs higher activation levels: 3,4) and social support scores (range: lowest 8 to highest 34), adjusting for age. Results: Study participants reported high levels of social support and patient activation. Those who were at or above the median for the social support measures (indicating high levels of social support) had greater odds of high levels of patient activation (levels 3 or 4) compared to individuals reporting low levels of social support (OR 2.23 95%CI1.04, 4.76, p = 0.012). Conclusions: Results of our survey demonstrate that this group of women with coronary heart disease who regularly attended a peer-led support group and indicated a high level of social support report taking a more active role in self-management behaviors.

scholarly journals Improving mental health and psychosocial wellbeing in humanitarian settings: reflections on research funded through R2HC

2020 ◽  
Vol 14 (1) ◽  
Author(s):  
Wietse A. Tol ◽  
Alastair Ager ◽  
Cecile Bizouerne ◽  
Richard Bryant ◽  
Rabih El Chammay ◽  
...  
Keyword(s):  
Mental Health ◽  
Psychosocial Support ◽  
Scale Up ◽  
Lessons Learned ◽  
Research Projects ◽  
Psychosocial Needs ◽  
Knowledge Gaps ◽  
Humanitarian Settings ◽  
Wide Range ◽  
The Impact

Abstract Major knowledge gaps remain concerning the most effective ways to address mental health and psychosocial needs of populations affected by humanitarian crises. The Research for Health in Humanitarian Crisis (R2HC) program aims to strengthen humanitarian health practice and policy through research. As a significant portion of R2HC’s research has focused on mental health and psychosocial support interventions, the program has been interested in strengthening a community of practice in this field. Following a meeting between grantees, we set out to provide an overview of the R2HC portfolio, and draw lessons learned. In this paper, we discuss the mental health and psychosocial support-focused research projects funded by R2HC; review the implications of initial findings from this research portfolio; and highlight four remaining knowledge gaps in this field. Between 2014 and 2019, R2HC funded 18 academic-practitioner partnerships focused on mental health and psychosocial support, comprising 38% of the overall portfolio (18 of 48 projects) at a value of approximately 7.2 million GBP. All projects have focused on evaluating the impact of interventions. In line with consensus-based recommendations to consider a wide range of mental health and psychosocial needs in humanitarian settings, research projects have evaluated diverse interventions. Findings so far have both challenged and confirmed widely-held assumptions about the effectiveness of mental health and psychosocial interventions in humanitarian settings. They point to the importance of building effective, sustained, and diverse partnerships between scholars, humanitarian practitioners, and funders, to ensure long-term program improvements and appropriate evidence-informed decision making. Further research needs to fill knowledge gaps regarding how to: scale-up interventions that have been found to be effective (e.g., questions related to integration across sectors, adaptation of interventions across different contexts, and optimal care systems); address neglected mental health conditions and populations (e.g., elderly, people with disabilities, sexual minorities, people with severe, pre-existing mental disorders); build on available local resources and supports (e.g., how to build on traditional, religious healing and community-wide social support practices); and ensure equity, quality, fidelity, and sustainability for interventions in real-world contexts (e.g., answering questions about how interventions from controlled studies can be transferred to more representative humanitarian contexts).

scholarly journals Parenting while living with advanced cancer: A qualitative study

2016 ◽  
Vol 31 (3) ◽  
pp. 231-238 ◽  
Author(s):  
Eliza M Park ◽  
Devon K Check ◽  
Mi-Kyung Song ◽  
Katherine E Reeder-Hayes ◽  
Laura C Hanson ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Functional Status ◽  
Advanced Cancer ◽  
Metastatic Cancer ◽  
Eastern Cooperative Oncology Group ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Parental Concerns ◽  
The Impact

Background: Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs. Aim: To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status. Design: We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. Setting and participants: A total of 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale = 0–1) and 17 with low functional status (ECOG=2–4). Results: We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) “missing out” and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns. Conclusion: Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.

From where does my support come? Unpacking the contribution of support for police

2020 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
April D. Schantz ◽  
Stefany Coxe ◽  
Valentina Bruk-Lee
Keyword(s):  
Social Support ◽  
Social Network ◽  
Police Officers ◽  
Psychological Health ◽  
Well Being ◽  
Support Network ◽  
Social Support Network ◽  
Component Structure ◽  
Content Type ◽  
The Impact

PurposeThe purpose of this research is to explore the structure and impact of police officers' social support network on health and well-being. Social integration promotes opportunities for regular positive experiences and a set of stable, socially rewarded roles within one's work and life domains. Identifying the structure and impact areas of police officers' social support network provide guidance for initiatives in improving psychological health for the department and individual officers.Design/methodology/approachSurvey of 162 police officers' sources of support provided a holistic representation of their social network across seven sources. Principle component analyses were conducted to explore the structure of one's social network. Multiple regression analyses were conducted to examine overall impact of one's social support network and relative contributions of support sources in terms of increased well-being and reduced strain.FindingsA three-component structure of social support was partially supported. Overall models of the impact of one's social support network related to increased well-being and reduced strain was supported. Relative contributions of support sources show different patterns based on outcome of interest.Practical implicationsProvides guidance for addressing the psychological well-being needs for officers holistically. In other words, treating officers as whole beings, whose system of support and psychological health is integrated, not piecemeal.Originality/valueExamination of principle effects of support provides a parsimonious approach to considering the holistic value of one's support system, apart from specific stressors or conditions.

scholarly journals Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

2020 ◽  
Author(s):  
Sarah Berrocoso ◽  
Imanol Amayra ◽  
Esther Lázaro ◽  
Oscar Martínez ◽  
Juan Francisco López-Paz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Support Groups ◽  
Coping Styles ◽  
Negative Relationship ◽  
Well Being ◽  
Postnatal Growth ◽  
Support Network ◽  
The Impact

Abstract Background : Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being. Results: The sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impact on the parents' QoL and negative relationship with the symptomatology were assessed. The use of engagement strategies such as problem focused coping was associated with improved psychological QoL and social support. Conclusions: WHS caregivers share similarities in their profile and needs with caregivers of children with other rare diseases. Pychosocial support groups involving parents caring for children with the same disease could improve caregivers’ well-being and QoL by strengthening their social support network and using positive coping styles. Keywords: Wolf-Hirschhorn syndrome; 4p deletion; caregivers; quality of life; coping; depression; social support; spirituality.

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