Gaps in caregiving for young-onset colorectal cancer patients.

2020 ◽  
Vol 38 (4_suppl) ◽  
pp. 82-82
Author(s):  
Kim Lynn Newcomer ◽  
Ronit Yarden ◽  
Danielle Peterson ◽  
Keyword(s):  
Colorectal Cancer ◽  
Online Survey ◽  
Psychosocial Support ◽  
Self Report ◽  
Medical Community ◽  
Public Health Issue ◽  
Patient Journey ◽  
Young Onset ◽  
Medical Needs ◽  
Growing Population

82 Background: The rise of young-onset colorectal cancer (YO-CRC) is an alarming public health issue. Interestingly, the proportion of new cases diagnosed in young people (20-49) had increased from 6% in 1990 to 11% in 2013 and coincides with the declining CRC cases in older people. YO-CRC patients face unique clinical challenges as many are diagnosed at advanced stages of the disease and subjected to aggressive treatments. In addition, diagnosis often disrupts early family and career developmental tasks and goals, suggesting the need for additional psychosocial support. Caregivers are an important part of the patient journey. Caregivers serve as liaisons with the medical community and the patient’s social network. The goal of this study is to cast light and explore the experience of caregivers who were caring for YO-CRC patients. Methods: The online survey was completed by 208 caregivers, diverse in age, gender, and race/ethnicity. Participants indicated their relationship as either: spouse/partner, parents, siblings, children, and non-family members. Results: Caregivers self-report they do not understand the important aspects of patients' medical needs despite 79% of caregivers are college graduates and 43% had an advanced degree. Most of the respondents (76%) lack understanding about treatment options and 56% did not feel confident they understood healthcare decisions. Overall, caregivers needed more information and guidance for managing the side-effects of treatment, A majority of caregivers (93%) reported fatigue due to lack of sleep and 63% reporting they missed eight hours or more of work each month. Participants (73%) reported they needed help for panic and anxiety and employed different coping mechanisms to deal with the toll of caregiving. Conclusions: Our survey indicates we must recognize caregivers as the patient's healthcare partners and engage them in the entire plan of care. A growing population of YO-CRC patients means a growing population of caregivers who are navigating work, parenthood, impacts on sexual health, and role changes right along with that patient. Such understanding could help in developing appropriate interventions for caregivers aimed at reducing their burden and stress in caring for patients with YO-CRC.

scholarly journals What do health professionals need to know about young onset dementia? An international Delphi consensus study

2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Leah Couzner ◽  
Sally Day ◽  
Brian Draper ◽  
Adrienne Withall ◽  
Kate E. Laver ◽  
...  
Keyword(s):  
Health Professionals ◽  
Delphi Study ◽  
Online Survey ◽  
Psychosocial Support ◽  
Neuropsychiatric Symptoms ◽  
Contributing Factors ◽  
Delphi Consensus ◽  
Young Onset ◽  
Family Approach ◽  
Young Onset Dementia

Abstract Background People with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD. Methods An international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance. Results The panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms. Conclusions The expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.

scholarly journals Food-Insecure Household’s Self-Reported Perceptions of Food Labels, Product Attributes and Consumption Behaviours

Nutrients ◽  
2019 ◽  
Vol 11 (4) ◽  
pp. 828 ◽  
Author(s):  
Lucy M. Butcher ◽  
Maria M. Ryan ◽  
Therese A. O’Sullivan ◽  
Johnny Lo ◽  
Amanda Devine
Keyword(s):  
Food Security ◽  
Online Survey ◽  
Multinomial Logistic Regression ◽  
Short Form ◽  
Self Report ◽  
Household Food Security ◽  
Public Health Issue ◽  
Food Labels ◽  
Product Attributes ◽  
The Impact

Dietary compromises related to food insecurity profoundly undermine health and constitute a serious public health issue, even in developed nations. The aim of this study was to explore the impact of food labelling and product attributes on the purchasing choices of food-insecure households in Australia. An online survey containing 19 food choice and 28 purchasing behaviours questions was completed by 1056 adults responsible for household grocery shopping. The short form of the US Household Food Security Survey Module was used as the food security indicator. Multinomial logistic regression modelling was employed to analyse the survey data. Respondents were classified as having either high-marginal (63.4%, n = 670), low (19.8%, n = 209) or very low (16.8%, n = 177) food security. Respondents with low or very low food security status were less likely to self-report understanding the information on the back of packaging (p < 0.001), find information on food labels useful (p = 0.002) or be influenced by product nutrition information (p = 0.002). Convenience (p < 0.001), organic (p = 0.027) and supermarket-branded products (p < 0.001) were more likely to be rated as important by food-insecure respondents when compared to their food-secure counterparts. When asked to rate “how healthy” their diet was, high–marginal FS respondents were twice as likely describe their diet as healthy than very low FS respondents (p = 0.001).

scholarly journals Mental health of Covid-19 risk groups during the first Covid-19 lockdown in Germany: a cross-sectional study

2021 ◽  
Author(s):  
Daniel Deimel ◽  
Thorsten Köhler ◽  
Janina Dyba ◽  
Niels Graf ◽  
Christine Firk
Keyword(s):  
Mental Health ◽  
Online Survey ◽  
Psychosocial Support ◽  
Risk Groups ◽  
Low Risk ◽  
Self Report ◽  
Severe Illness ◽  
Cross Sectional ◽  
Health Burden ◽  
Increased Risk

Abstract Background The ongoing Covid-19 pandemic not only threats physical health, but also affects the mental health of people. Yet, health consequences of the pandemic do not affect all members of society equally. We, therefore, assessed the mental health burden of individuals who are at increased risk of severe illness from Covid-19 compared to individuals who are at low risk of severe illness during the first lockdown in Germany. Furthermore, we investigated variables mediating the effect of being an individual at increased risk of serve illness on depression. Methods Adult German residents (n = 2.369) provided responses to a cross-sectional online survey about risk factors for an increased risk of severe illness from Covid-19 and various aspects of mental health during the first Covid-19 lockdown in Germany. Standardized and validated self-report measures (e.g. PHQ-9, GAD-7) were used using Mann-Whitney U-tests as well as regression and mediation analyses. Results The results clearly show that the mental health burden is higher among persons at increased risk of severe illness from Covid-19 compared to persons at low risk of severe illness from Covid-19. Moreover, our findings indicate that individuals at increased risk of severe illness are more worried about their health during the pandemic and may therefore respond with social withdrawal to protect themselves and, consequently, experience higher levels of loneliness, which in turn has an impact on depressive symptoms. Conclusions Individuals at increased risk of severe illness have an increased need for psychosocial support during times of lockdown. Future public health policies should pay special attention to these individuals and support them by targeted offers. More research, however, is needed on possible long-term consequences of social distancing on mental health.

A population-based study of young-onset colorectal cancer patients: Effect of knowledge gaps among patients and providers on stage at diagnosis and quality of life.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 4095-4095
Author(s):  
Ronit Yarden ◽  
Kim Lynn Newcomer ◽  
Danielle Peterson ◽  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Social Media ◽  
Young Adults ◽  
Online Survey ◽  
Young Patients ◽  
Young Onset ◽  
Number Of Patients ◽  
Incidence And Mortality

4095 Background: Colorectal cancer (CRC) is one of the leading cause of cancer-related death in the US. Despite a decrease in overall incidence and mortality, there has been an alarming increase in CRC diagnosis among young adults (20-49 years old) and causes remain unknown. To explore the unique challenges and unmet needs of the young-adult patients many still establishing their life-long goals, the Colorectal Cancer Alliance launched a comprehensive survey for young-onset CRC patients and survivors via social media to track the self-reported pre-diagnosis awareness, path to diagnosis, and post-diagnosis quality of life experiences of this often overlooked group. Methods: A cross-sectional study, conducted in the form of an online survey, was launched via multiple channels of social media. The questionnaire was based on established instruments including PROMIS, EORTC-QOL-30, and EORTC-CR-29 and EORTC-SHC-22. Results: The survey was completed by 885 patients and survivors. The median age at diagnosis was 42 +/-7, significantly lower than the recommended screening age. Only 6% of respondents were diagnosed with Lynch syndrome although 29% reported some family history. Most respondents (63%) indicated they were not aware that CRC can affect people younger than 50, which may explain why the majority of patients waited more than 3 months and 23% waited over 12 months after noticing their symptoms to visit their doctor. The majority, 75%, of all patients visited 2+ doctors and 11% of those patients visited 10+ doctors before their doctor suspected colorectal cancer. A significant number of patients felt their doctors were dismissive of their symptoms. 77% of patients were diagnosed with advanced disease and were subjected to aggressive therapies that substantially affected their quality of life including neuropathy, anxiety, clinical depression, sexual morbidity, unemployment, and financial toxicity. Many young patients indicated that their doctors did not inform them about fertility preservation. Conclusions: Our survey indicates that medical professionals and young adults need to be aware of the increasing incidence of young-onset CRC, and the importance of timely screening when signs and symptoms are present, regardless of age.

Young-onset colorectal: Emotional and psychosocial effects on patients, survivors, and caregivers.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 3592-3592
Author(s):  
Laura Diane Porter ◽  
Ronit Yarden ◽  
Kim Lynn Newcomer ◽  
Keyword(s):  
Mental Health ◽  
Colorectal Cancer ◽  
Emotional Exhaustion ◽  
Online Survey ◽  
Well Being ◽  
The United States ◽  
Psychosocial Effects ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Young Onset

3592 Background: Colorectal cancer is the third-most commonly diagnosed cancer and the second-leading cause of cancer death in men and women combined in the United States. Young-onset colorectal cancer refers to individuals diagnosed under the age of 50. In recent years, the incidence has increased by 2.2% annually in individuals younger than 50 years, and 1% in individuals 50-64, in contrast to a 3.3% decrease in adults 65 years and older. The Colorectal Cancer Alliance launched the Never Too Young Survey and the Caregiver Survey to assess and better understand the unmet needs of the young-onset population and their caregivers. Methods: A cross-sectional study, conducted in the form of an online survey, was launched to better understand the experiences around YO-CRC patients and caregivers. YO-CRC patients and survivors (N = 885) and caregivers (N = 204) completed an online questionnaire that was based on established instruments including PROMIS, EORTC-QOL-30, and EORTC-CR-29. The final survey instrument and study plan were reviewed and approved by the Aspire Inc. Institutional Review Board. Results: Nearly 75% of patients/survivors shared that they have been concerned about their mental health, and 64% responded that they have needed help for their depression. Further, 67% of caregivers surveyed responded that they were also concerned about their mental health, and 68% responded that they needed help with their depression. Seventy-one percent of caregivers often felt sadness, and 30% indicated that they had lost hope. Emotional exhaustion was reported by 77% of caregivers, whether they were providing round-the-clock care or caregiving from a distance. The effect was more pronounced in the patient/survivor cohort, with 95% indicating that emotional exhaustion impacted their lives. As a result, 71% of caregivers and 29% of patients/survivors indicated that they had withdrawn from other people. These results indicate the emotional toll that colorectal cancer has on patients/survivors and caregivers and their need for further resources. Conclusions: The Colorectal Cancer Alliance is committed to meeting these needs and providing resources that support patients, survivors and caregivers. Information and services may assist the caregiver in helping the patient make decisions, including shifting roles and routines in response to changing demands of YO-CRC. Further studies should investigate psychological well-being and support strategies.

scholarly journals Development of the Bereavement Risk Inventory and Screening Questionnaire (BRISQ): Item generation and expert panel feedback

2016 ◽  
Vol 15 (1) ◽  
pp. 57-66 ◽  
Author(s):  
Kailey Roberts ◽  
Jimmie Holland ◽  
Holly G. Prigerson ◽  
Corinne Sweeney ◽  
Geoffrey Corner ◽  
...  
Keyword(s):  
Family Member ◽  
Online Survey ◽  
Screening Tool ◽  
Psychosocial Support ◽  
Family Members ◽  
Self Report ◽  
Research Knowledge ◽  
Screening Questionnaire ◽  
Loved One ◽  
Before And After

ABSTRACTObjective:Following the loss of a loved one to cancer, a significant subset of bereaved family members are at heightened risk for mental and physical health problems; however, these family members often “fall through the cracks” of the healthcare system. A brief, clinically useful self-report bereavement risk-screening tool could facilitate more effective identification of family members in need of psychosocial support before and after a cancer loss. Thus, the purpose of this study was to develop and refine the Bereavement Risk Inventory and Screening Questionnaire (BRISQ), a self-report bereavement screening tool, and to assess its utility using feedback from bereavement experts.Method:Quantitative and qualitative feedback from a panel of 15 clinical and research experts in bereavement was obtained through an online survey to identify the most clinically useful items and understand expert opinion on bereavement screening.Results:The qualitative and quantitative feedback were synthesized, resulting in a 22% reduction of the item pool. While there was a general consensus between experts on the most clinically useful risk factors for bereavement-related mental health challenges and on the utility of screening, they also offered feedback on language and formatting that guided substantial revisions to the BRISQ.Significance of results:These findings were utilized to refine the BRISQ in preparation for a second study to obtain family member feedback on the measure. By incorporating both expert and family member feedback, the intention is to create a screening tool that represents top clinical and research knowledge in bereavement in a way that effectively addresses barriers to care.

Does Dispositional Mindfulness Predict the Development of Grit?

2018 ◽  
Vol 39 (2) ◽  
pp. 76-87 ◽  
Author(s):  
Buaphrao Raphiphatthana ◽  
Paul Jose ◽  
Karen Salmon
Keyword(s):  
Undergraduate Students ◽  
Online Survey ◽  
Cross Sectional Study ◽  
Self Report ◽  
Dispositional Mindfulness ◽  
Cross Sectional ◽  
Report Data ◽  
Self Report Data ◽  
Acting With Awareness ◽  
Mindfulness Facets

Abstract. Grit, that is, perseverance and passion for long-term goals, is a novel construct that has gained attention in recent years ( Duckworth, Peterson, Matthews, & Kelly, 2007 ). To date, little research has been performed with the goal of identifying the antecedents of grit. Thus, in order to fill this gap in the literature, self-report data were collected to examine whether mindfulness, a mindset of being-in-the-present in a nonjudgmental way, plays a role in fostering grittiness. Three hundred and forty-three undergraduate students completed an online survey once in a cross-sectional study, and of these, 74 students completed the survey again 4.5 months later. Although the cross-sectional analyses identified a number of positive associations between mindfulness and grit, the longitudinal analysis revealed that the mindfulness facets of acting with awareness and non-judging were the most important positive predictors of grit 4.5 months later. This set of findings offers implications for future grit interventions.

scholarly journals Online Peer Counseling for Suicidal Ideation: Participant Characteristics and Reasons for Using or Refusing This Service

Psych ◽  
2021 ◽  
Vol 3 (2) ◽  
pp. 61-71
Author(s):  
Maren Weiss ◽  
Anja Hildebrand ◽  
Hellmuth Braun-Scharm ◽  
Mark Stemmler
Keyword(s):  
Suicidal Ideation ◽  
Online Survey ◽  
Psychosocial Support ◽  
Peer Counseling ◽  
Online Counseling ◽  
Data Utilization ◽  
Perceived Need ◽  
Positive Attitudes ◽  
Final Sample ◽  
Counseling Clients

[U25] is a German online-peer-counseling service for adolescents with suicidal ideation, who typically do not seek or receive adequate counseling. We conducted an online survey in order to compare persons who receive online counseling by [U25] compared to those who are visitors of [U25] websites but do not (yet) receive counseling. Via online survey, all visitors to the [U25] websites were invited to fill in a questionnaire on sociodemographic data, utilization reasons, and barriers. Our final sample consisted of n = 318 counseling clients, n = 1127 persons who have not yet sought help but intend to do so (“prospective clients”), and n = 444 persons who do not consider [U25] counseling for themselves (“refusers”). Clients were more often female and showed positive attitudes toward online counseling. Low perceived need for counseling was the most frequent barrier reported by the refusers, whereas fear of stigma and practical barriers were rarely reported; younger and male refusers reported needing to write down one’s problems as a barrier more often. Self-selection might reduce generalizability of our results. Online counseling can facilitate receiving psychosocial support for young persons with suicidal ideation, particularly if barriers are addressed.

scholarly journals Psychosocial Effects and Use of Communication Technologies during Home Confinement in the First Wave of the COVID-19 Pandemic in Italy and The Netherlands

2021 ◽  
Vol 18 (5) ◽  
pp. 2619
Author(s):  
Sofia Bastoni ◽  
Christian Wrede ◽  
Achraf Ammar ◽  
Annemarie Braakman-Jansen ◽  
Robbert Sanderman ◽  
...  
Keyword(s):  
The Netherlands ◽  
Communication Technology ◽  
Online Survey ◽  
Digital Communication ◽  
Psychosocial Support ◽  
Psychosocial Impact ◽  
Mental Wellbeing ◽  
Communication Tool ◽  
Psychosocial Effects ◽  
Cross Sectional

(1) Background: The COVID-19 pandemic forced people from all around the globe to strongly modify their daily routines, putting a significant strain on the social aspects of daily lives. While the first wave of the pandemic was a very challenging time in all countries, it is still uncertain whether various lockdown intensities and infection rates differed regarding their psychosocial impact. This work therefore aimed to investigate (i) the psychosocial effects of home confinement in two European countries that underwent different lockdown intensities: Italy and the Netherlands and (ii) the role of communication technology in relation to feelings of loneliness. (2) Methods: A cross-sectional online survey inquiring about different psychosocial variables and the use of and satisfaction towards communication technology was circulated among the general public during the first wave of the COVID-19 pandemic. In total, 629 participants (66% female, 68% from the Netherlands) answered each question twice, referring to “before” and “during” the pandemic. (3) Results: We found significant negative effects of COVID-19 home confinement on depressive feelings (p < 0.001, %∆ = +54%), loneliness (p < 0.001, %∆ = +37.3%), life satisfaction (p < 0.001, %∆ = −19.8%) and mental wellbeing (p < 0.001, %∆ = −10.6%) which were accompanied with a significantly increased need for psychosocial support (p < 0.001, %∆ = +17.3%). However, the magnitude of psychosocial impact did not significantly differ between residents undergoing a more intense (Italy) versus a less intense (Netherlands) lockdown, although the decrease in social participation was found to be significantly different for both countries (z = −7.714, p < 0.001). Furthermore, our findings demonstrate that the increase in loneliness was associated with the adoption of new digital communication tools (r = 0.21, p < 0.001), and significantly higher for individuals who started to adopt at least one new digital communication tool during confinement than for those who did not (z = −4.252, p < 0.001). (4) Conclusions: This study highlights that, although COVID-19 home confinement significantly impacted psychosocial wellbeing during the first wave of the pandemic, this impact did not differ based on lockdown intensity. Recognizing the increasing adoption of digital communication technology in an attempt to reduce lockdown loneliness, future studies should investigate what is needed from the technology to achieve this effect.

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