The caregiver voice: Insights into caring for the young adult colorectal cancer patient.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 148-148
Author(s):  
Martha Raymond ◽  
Margaret-Ann Simonetta
Keyword(s):  
Colorectal Cancer ◽  
Young Adult ◽  
Focus Groups ◽  
Support Services ◽  
Psychosocial Support ◽  
Colorectal Cancer Patient ◽  
Well Being ◽  
Vital Role ◽  
Caregiver Support ◽  
Young Caregivers

148 Background: According to data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) Program, since 1994 statistics show a 50% increase in young onset colorectal cancer incidence in the 20-49 age group. Researchers estimate that by 2030, more than 1 in 10 colon cancers and 1 in 4 rectal cancers will be diagnosed in young adults under 50 years of age. Based on these alarming statistics and understanding the vital role caregivers play throughout the cancer continuum, our study explores the emotional and psychosocial implications for caregivers of young adult colorectal cancer survivors. Methods: From September 2015 – September 2017, our professional facilitator with over 25 years of cancer advocacy work hosted nationwide caregiver focus groups. Primary goals included reaching caregivers in rural, urban and community oncology settings to gain perspective from diverse populations. During the study period, we spoke with caregivers in 32 states via traditional focus group settings and online via Skype format. Results: 576 caregivers (37% male, 63% female) participated in our national focus groups. When asked to describe in one word their current feelings, the top ten responses were: Stressed, Anxious, Alone, Exhausted, Angry, Needed, Guilty, Burned-Out, Overwhelmed, Frustrated. 55% of the young caregivers reported they were experiencing self-health decline ( Can’t sleep, can’t focus – feel sad all the time). 73% reported they felt lost and totally helpless ( No control over situation or outcome). 89% reported depression ( We hurt because we can’t take their pain away). 76% reported they felt ill-equipped to help their loved one leading to stress and anxiety ( Desperate for whatever might help). Conclusions: New and expanded caregiver support services are needed. Emotional and psychosocial support are essential to the well-being of our caregivers as they provide vital support to patients in need throughout the cancer care continuum. We will continue the conversation with caregivers as we create programs and expand support services.

L'adesione allo screening del tumore colorettale nell'Ausl di Cesena: metodologie di intervento

2009 ◽  
pp. 179-189
Author(s):  
Laura Briganti ◽  
Mauro Palazzi ◽  
Mirna Severi
Keyword(s):  
Colorectal Cancer ◽  
Focus Groups ◽  
Key Words ◽  
Well Being ◽  
Target Population ◽  
Average Percentage ◽  
Emilia Romagna Region ◽  
Colorectal Cancer Prevention ◽  
Local Agencies ◽  
Future Work

- In March 2005 the Emilia Romagna region started a screening for the colorectal cancer prevention. Over a period of 2 years, all the target population of the region, between 50 and 69 years old, was asked to undergo a screening of their faeces. Within the Cesena Ausl, 36% of the target population replied to the call, against a regional average percentage estimated at 46%. As a result, a co-operation with the 4 local agencies dealing with cancers was started in Cesena Ausl. This was done in order to increase the compliance of the target population and it involved: ACISTOM, ARRT, IOR, LILT and Assiprov. This work was carried out through an analysis of the phenomenon, the organization of conferences, focus groups and other communicative activities for the population. After 2 years of work, the compliance in September 2008 was estimated to have increased up to 48% and is believed to be improving furthermore throughout the implementation of future work.Key words: screening, prevention, colorectal cancer, style of life, well-being promotion, action ResearchParole chiave: screening, prevenzione, tumore colorettale, stili di vita, promozione del benessere, ricerca intervento

scholarly journals Personnel Well-Being in the Helsinki University Hospital during the COVID-19 Pandemic—A Prospective Cohort Study

2020 ◽  
Vol 17 (21) ◽  
pp. 7905
Author(s):  
Henna Haravuori ◽  
Kristiina Junttila ◽  
Toni Haapa ◽  
Katinka Tuisku ◽  
Anne Kujala ◽  
...  
Keyword(s):  
Nursing Staff ◽  
Support Services ◽  
Psychosocial Support ◽  
Psychological Symptoms ◽  
Well Being ◽  
University Hospital ◽  
Baseline Survey ◽  
Hospital District ◽  
Electronic Survey ◽  
First Results

In March 2020, strict measures took place in Finland to limit the COVID-19 pandemic. Majority of Finnish COVID-19 patients have been located in southern Finland and consequently cared for at the Hospital District of Helsinki and Uusimaa (HUS) Helsinki University Hospital. During the pandemic, HUS personnel’s psychological symptoms are followed via an electronic survey, which also delivers information on psychosocial support services. In June 2020, the baseline survey was sent to 25,494 HUS employees, 4804 (19%) of whom answered; altogether, 62.4% of the respondents were nursing staff and 8.9% were medical doctors. While the follow-up continues for a year and a half, this report shares the sociodemographic characteristics of the respondents and the first results of psychological symptoms from our baseline survey. Out of those who were directly involved in the pandemic patient care, 43.4% reported potentially traumatic COVID-19 pandemic-related events (PTEs) vs. 21.8% among the others (p < 0.001). While over a half of the personnel were asymptomatic, a group of respondents reported PTEs and concurrent depression, insomnia, and anxiety symptoms. This highlights the need to ensure appropriate psychosocial support services to all traumatized personnel; especially, nursing staff may require attention.

scholarly journals Psychosocial support services provided for Syrian refugees with disabilities: a systematic review and thematic analysis

2021 ◽  
Vol 28 (1) ◽  
Author(s):  
Ali M. Alodat ◽  
Hanan I. Alshagran ◽  
Al-Muatasem M. Al-Bakkar
Keyword(s):  
Mental Health ◽  
Systematic Review ◽  
Thematic Analysis ◽  
Support Services ◽  
English Language ◽  
Web Of Science ◽  
Psychosocial Support ◽  
Well Being ◽  
Syrian Refugees

AbstractThis study systematically reviewed and thematically analyzed studies that investigated psychosocial support services provided to Syrian refugees with disabilities between 2011 and 2020. Nine studies published in the English language were identified from database searches (Google Scholar, PsychInfo, EBSCOhost, Web of Science, and Scopus). Results showed that the forms of psychosocial support services provided to Syrian refugees with disabilities were varied based on the nature of the study and the disability type. The results also provided detailed information about methods, participants, and findings of the identified studies. The thematic analysis results identified six themes that represent the factors related to the psychosocial support services, which were assessment, mental health, psychological well-being, rehabilitation, social participation, and vulnerability. This study provided a set of recommendations that may improve the quality of mental health and psychosocial support services provided to Syrian refugees with disabilities and their families, which are professional development, researches, and policy reforming.

scholarly journals Nurses’ and occupational therapists’ experiences of conducting a home-based psychosocial intervention following stroke: a qualitative process evaluation

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Randi Martinsen ◽  
Gabriele Kitzmüller ◽  
Margrete Mangset ◽  
Kari Kvigne ◽  
Anne Svelstad Evju ◽  
...  
Keyword(s):  
Health Care ◽  
Focus Groups ◽  
Process Evaluation ◽  
Psychosocial Intervention ◽  
Psychosocial Support ◽  
Occupational Therapists ◽  
Well Being ◽  
Adjustment Process ◽  
Professional Skills ◽  
Home Based

Abstract Background Persons with stroke are susceptible to psychosocial problems, and express disappointment at how health care professionals fail to meet their psychosocial needs following discharge to home. The responsibility of nurses and occupational therapists in stroke rehabilitation is to assist the persons and their families during the recovery and adjustment process. A home-based dialogical intervention aiming to enhance psychosocial support was therefore developed and tested in a randomized controlled trial. This study is a part of the process evaluation conducted alongside the trial. The aim was to explore the nurses’ and occupational therapists’ experiences of conducting the intervention. Methods Eighteen nurses and four occupational therapists participated in six focus groups to explore their experiences when providing the intervention. The themes discussed in the focus groups were the aspects that facilitated the delivering of the intervention and the challenges they encountered during the study period. The interviews were analysed using qualitative content analysis. Results The analysis generated two themes. The theme Developing a supportive relationship to facilitate the adjustment process following stroke had two subthemes: Getting personally involved and Handling challenges. This theme reveals how the nurses and occupational therapists experienced their relationship with the persons with stroke and potential threats which challenged them while conducting the intervention. The theme Developing professional skills in providing psychosocial support had two subthemes: Becoming confident in conducting dialogues and Integrating psychosocial topics. This theme reveals the aspects that the nurses and occupational therapists perceived as facilitating the development of their professional skills in conducting the dialogues. Conclusion Delivering the psychosocial intervention was perceived as deeply meaningful and increased the nurses’ and occupational therapists’ understanding of how to support stroke survivors to live with the consequences of stroke. However, balancing the professional and the personal relationship was challenging. A basic educational programme, training, supervision and having dedicated time were crucial elements to instil confidence in professionals conducting theme-based dialogues to promote post-stroke psychosocial well-being. Individual clinical experience and knowledge of stroke care were considering important to enable professionals to integrate psychosocial rehabilitation into community health care. Trial registration ClinicalTrials.gov, NCT 02338869, registered 10/04/2014.

scholarly journals Working with refugees during COVID-19: Social worker voices from Turkey

2020 ◽  
Vol 63 (5) ◽  
pp. 685-690
Author(s):  
Aslihan Nisanci ◽  
Rumeysa Kahraman ◽  
Yusuf Alcelik ◽  
Ulviyenur Kiris
Keyword(s):  
Social Workers ◽  
Support Services ◽  
Psychosocial Support ◽  
Vital Role ◽  
Financial Resources ◽  
Governmental Organizations ◽  
Non Governmental Organizations ◽  
Children’S Wellbeing ◽  
Short Essay ◽  
Near Future

This short essay aims to share social workers’ experiences of working with refugees during the COVID-19 pandemic in Turkey. Three of the authors work in different non-governmental organizations (NGOs) in different cities. NGOs play a vital role in the delivery of psychosocial support services to refugees in Turkey and have been inevitably affected by the pandemic. The major practice challenges are being unprepared for tele-social work, a decrease in financial resources, increasing barriers to resources, and threats to refugee children’s wellbeing. Finally, suggestions are made for the near future.

scholarly journals Barriers to the Use of Psychosocial Support Services Among Adolescent and Young Adult Survivors of Pediatric Cancer

2014 ◽  
Vol 3 (3) ◽  
pp. 112-116 ◽  
Author(s):  
Molly H. Gardner ◽  
Margaux J. Barnes ◽  
Shilpa Bopanna ◽  
Caroline S. Davis ◽  
Pat B. Cotton ◽  
...  
Keyword(s):  
Young Adult ◽  
Pediatric Cancer ◽  
Support Services ◽  
Psychosocial Support ◽  
Adult Survivors ◽  
Adolescent And Young Adult ◽  
Young Adult Survivors

scholarly journals Personnel Well-being in the Helsinki University Hospital During the COVID-19 Pandemic – A Prospective Cohort Study

2020 ◽  
Author(s):  
Henna Haravuori ◽  
Kristiina Junttila ◽  
Toni Haapa ◽  
Katinka Tuisku ◽  
Anne Kujala ◽  
...  
Keyword(s):  
Nursing Staff ◽  
Support Services ◽  
Psychosocial Support ◽  
Psychological Symptoms ◽  
Well Being ◽  
University Hospital ◽  
Baseline Survey ◽  
Electronic Survey ◽  
First Results

On March 2020 strict measures took place in Finland to limit the COVID -19 pandemic. A majority of the Finnish COVID -19 &ndash;patients have been located in the southern Finland and consequently cared for in the HUS Helsinki University Hospital. During the ongoing pandemic, HUS personnel&rsquo;s psychological symptoms are followed via an electronic survey, which also delivers information on psychosocial support services. The baseline survey in June 2020 was sent to 25494 HUS employees out of whom 4804 (19%) answered; altogether 62.4% of the respondents were nursing staff and 8.9% medical doctors. While the follow-up continues for a year and a half, this report shares the sociodemographic characteristics of the respondents and the first results of psychological symptoms from the baseline survey. Out of those who were directly involved in pandemic patients` care, 43.4% reported potentially traumatic COVID-19 pandemic-related experiences vs. 21.8% among the other (p &amp;lt; 0.001). While over a half of the personnel was symptomless, a group of respondents reported pandemic work &ndash;related traumatic events and concurrent depressive, insomnia and anxiety symptoms. This highlights the need to ensure appropriate psychosocial support services to all traumatized personnel and PTEs were present especially among nursing staff.

scholarly journals Time from Diagnosis and Correlates of Health-Related Quality of Life among Young Adult Colorectal Cancer Survivors

Cancers ◽  
2021 ◽  
Vol 13 (16) ◽  
pp. 4045
Author(s):  
Kimberly A. Miller ◽  
Julia Stal ◽  
Phuong Gallagher ◽  
Zhen Weng ◽  
David R. Freyer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Young Adult ◽  
Online Survey ◽  
Well Being ◽  
Disease Stage ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

The incidence of colorectal cancer (CRC) is rising among young adults. Health-related quality of life (HRQoL) in survivorship is not well-described in this population. We assessed HRQoL among young adult CRC survivors diagnosed from age 18–39 (AYAs) to examine differences by time from diagnosis, and to identify key correlates. A cross-sectional online survey was administered in collaboration with a national patient advocacy organization. The Functional Assessment of Cancer Therapy (FACT-C) was used to measure HRQoL, which assesses HRQoL globally and across 4 domains: emotional, physical, social, and functional. T-tests were conducted to compare HRQoL between survivors who were 6–18 months versus 19–36 months from diagnosis or relapse and multiple linear regression was conducted to identify correlates. The sample (n = 196) had a mean age of 32.2(SD ± 4.5); 116 (59.9%) were male; and the self-reported tumor location was colon (39.3%) or rectal (60.7%). The majority (56.4%) were diagnosed with stage 2 disease; 96.9% were non-metastatic. The mean global HRQoL score was 67.7 out of a possible score of 136. Across domains, mean scores were low. Emotional and physical well-being were significantly higher among survivors who were 19–36 months from diagnosis/relapse compared to those 6–18 months from diagnosis/relapse. Longer time from diagnosis and older current age were associated with higher HRQoL, while more intensive treatment and higher clinical disease stage were negatively associated, particularly in the emotional and physical domains. Overall, HRQoL was low in this population, and further research is needed to inform age-appropriate interventions to improve HRQoL for AYA CRC survivors.

scholarly journals Implementing Caregiver Support Programs in a Regional Stroke System

Stroke ◽  
2019 ◽  
Vol 50 (12) ◽  
pp. 3585-3591 ◽  
Author(s):  
Victrine Tseung ◽  
Susan B. Jaglal ◽  
Nancy M. Salbach ◽  
Jill I. Cameron
Keyword(s):  
Focus Groups ◽  
Program Implementation ◽  
Best Practice ◽  
Well Being ◽  
Healthcare Systems ◽  
System Level ◽  
Structured Interviews ◽  
Term Care ◽  
Caregiver Support ◽  
Regional Variations

Background and Purpose— Family caregivers play a central role in the recovery of people with stroke. They need support to optimize the care they provide and their own health and well-being. Despite support from the literature and best practice recommendations, healthcare systems are not formally adopting caregiver programs. This study aimed to describe system-level facilitators and barriers to caregiver support program implementation in a regional stroke system. Methods— Using a qualitative descriptive study design, focus groups were conducted with regional rehabilitation specialists, education coordinators, community and long-term care specialists, and regional/district program directors. Semi-structured interviews were conducted with regional medical directors, health professionals providing stroke care in acute care, rehabilitation and community settings, regional health executives, and primary care leaders. Data were analyzed using inductive thematic analysis. Results— Four focus groups (n=43) and 29 interviews were conducted. We identified 4 themes related to caregiver program implementation: (1) establishing the need for caregiver education and support in an integrated healthcare system; (2) incorporating caregiver programs into the system of care across the care continuum; (3) uncertainty regarding ownership and responsibility for implementation; and (4) addressing regional variations related to access, availability, and culture. Conclusions— This study provides a comprehensive understanding of organization and system-level considerations for implementing caregiver programs in a regional stroke system. Program implementation requires evidence to establish the need for caregiver programs, practical strategies, and establishing ownership to incorporate programs into existing healthcare systems, and consideration of regional variations across healthcare systems. Ultimately, adopting programs to support caregivers will improve recovery in people with stroke and caregiver well-being.

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