Measuring the impact of extended cancer survival on broader aspects of life and wellbeing: The PROACT Study.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 227-227
Author(s):  
Valerie M Shilling ◽  
Rachel Starkings ◽  
Valerie A. Jenkins ◽  
Lesley Fallowfield
Keyword(s):  
Systematic Reviews ◽  
Cancer Survival ◽  
Treatment Options ◽  
Informal Caregivers ◽  
Well Being ◽  
Advisory Panel ◽  
Cognitive Interviews ◽  
Family Responsibilities ◽  
Roles And Responsibilities ◽  
The Impact

227 Background: Living with cancer and its treatment affects many aspects of life, impacting roles and responsibilities. Formal assessment of these impacts is not normal practice and there is a need for rigorously developed, well-validated measures for both patients (pts) and informal caregivers (cgs). We present an overview of work (PROACT) detailing the development of such tools. Methods: Stage 1: Two systematic reviews of existing PROs used to measure broad life impact in pts and cgs, mapping individual scale items to conceptual domains to identify what is currently being measured and where gaps exist. Stage 2: Qualitative 1: Thematic analysis of in-depth interviews with pt-cg dyads about the impact of extended cancer survival on broader aspects of life and wellbeing to generate potential items for new measures. Qualitative 2: Cognitive interviews with new pt-cg dyad cohort using "think aloud" and specific probes to refine items for new measures. An advisory panel of 5 people with lived experience of cancer or caregiving worked with us throughout the project. Results: Systematic reviews identified gaps in existing measures around changes in occupational, financial, household and family roles and responsibilities and informed topic guides for Qualitative 1. Interviews with 24 pt-cg dyads generated 20 themes and 33 sub-themes from which 31 pt and 64 cg items were devised. Cognitive interviews with 20 pt-cg dyads in Qualitative 2 refined the measures. The final measures consisted of 29 items for pts (intended to be administered alongside FACT-G/QLQ-C30) and 60 for cgs (stand alone). Items cover family responsibilities, financial well-being, jobs and careers and additional sections on relationships and communication, lifestyle and outlook and health and well-being for cgs. Conclusions: We have developed two scales to measure broad life impacts of cancer for patients and informal caregivers. These are currently being evaluated and validated in Stage 3 of the project. Once validated these scales will be useful tools for clinicians and researchers enabling wide-ranging longer-term evaluation of new treatments in clinical trials and to aid decision-making about treatment options and supportive interventions.

scholarly journals Impact of COVID-19 on the Health and Well-being of Informal Caregivers of People with Dementia: A Rapid Systematic Review

2021 ◽  
Vol 7 ◽  
pp. 233372142110201
Author(s):  
M. Courtney Hughes ◽  
Yujun Liu ◽  
Abby Baumbach
Keyword(s):  
Negative Impact ◽  
Living Arrangement ◽  
Informal Caregivers ◽  
Well Being ◽  
Rapid Review ◽  
People With Dementia ◽  
Psychosocial Resilience ◽  
Quantitative Descriptive ◽  
The Impact ◽  
Health And Well Being

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic.

A Proposal of an innovative program for informal caregivers of patients with mood disorders

2017 ◽  
Vol 41 (S1) ◽  
pp. S603-S603
Author(s):  
J. Cabral ◽  
C. Barreto Carvalho ◽  
P. Castilho Freitas ◽  
C. Pato
Keyword(s):  
Quality Of Life ◽  
Mood Disorders ◽  
Negative Impact ◽  
Controlled Trial ◽  
Informal Caregivers ◽  
Well Being ◽  
Control Group ◽  
Compassion Focused Therapy ◽  
The Impact

IntroductionIntervention with informal caregivers (IC) of psychiatric patients is internationally recognized as relevant and a priority. However, the existing responses in this area are still insufficient, especially regarding caregivers of individuals with mood disorders (MD). Mindfulness and compassion focused therapy have proven to be an effective approach in stress reduction and in improving emotional and social well-being of caregivers of patients with other conditions. However, no studies testing these new approaches in IC of patients with MD have been carried out. The objective of this work is to present a research project that aims to develop, implement and empirically test the effectiveness of an innovative group program to help informal caregivers of individuals with mood disorders to cope with the negative impact of the disease and reduce caregiver burdens.MethodsThe design of this experimental study to test the program's efficacy is a non-randomised controlled trial (nrct) with 12 months follow-up, with a mixed assessment methodology (quantitative and qualitative analysis). A sample of 60 informal caregivers of individuals with chronic MD will be constituted (n = 30 Control group; n= 30 Experimental group).ResultsWe expect the program to promote significant changes in participants in terms of several emotional variables (eg: burden, stress, resilience, compassion and quality of life).ConclusionsFurther efforts to continue studying the impact of interventions in caregivers should be carried out, as a way to improve the quality of life of caregivers and their ability to provide informal care to MD patients.Disclosure of interestThe authors have not supplied their declaration of competing interest.

scholarly journals Impacts on employment, finances, and lifestyle for working age people facing an expected premature death: A systematic review

2017 ◽  
Vol 16 (3) ◽  
pp. 347-364 ◽  
Author(s):  
Slavica Kochovska ◽  
Tim Luckett ◽  
Meera Agar ◽  
Jane L. Phillips
Keyword(s):  
Systematic Review ◽  
English Language ◽  
Financial Burden ◽  
Premature Death ◽  
Well Being ◽  
Family Responsibilities ◽  
Language Studies ◽  
Working Age ◽  
Nonmalignant Disease ◽  
The Impact

ABSTRACTObjective:The working ages (25–65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families.Method:A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children.Results:Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease.Significance of results:Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.

Psychosocial Consequences Among Nurses in the Affected Area of the Great East Japan Earthquake of 2011 and the Fukushima Complex Disaster: A Qualitative Study

2018 ◽  
Vol 13 (03) ◽  
pp. 519-526 ◽  
Author(s):  
Hideko Sato ◽  
Teeranee Techasrivichien ◽  
Atsuko Omori ◽  
Masako Ono-Kihara ◽  
Masahiro Kihara
Keyword(s):  
Qualitative Study ◽  
Interpersonal Relationships ◽  
Acute Stress ◽  
Positive Impact ◽  
Well Being ◽  
Great East Japan Earthquake ◽  
Family Responsibilities ◽  
Psychosocial Consequences ◽  
Mutual Care ◽  
The Impact

AbstractObjectiveThe goal of this study was to assess the psychosocial consequences among nurses affected by the Great East Japan Earthquake in order to identify their coping strategies and explore possible countermeasures against complex disasters.MethodsIn 2012, we conducted a qualitative study and screened participants for posttraumatic stress disorder (PTSD).ResultsThirty-eight nurses participated in this study. The result showed a relatively high proportion of probable PTSD (39%). Thirty-two conceptual codes emerged from the data and were grouped into 8 categories: “initial acute stress,” “acute stress turning chronic,” “chronic physical and mental fatigue,” “occupational stress,” “fear of the impact of radiation on children’s health,” “occupational satisfaction,” “positive influences of the disaster experiences,” and “impact of mutual care through interpersonal cognition.”ConclusionsThe study reveals that mutual care may have a positive impact in assisting recovery and enhancing the psychological well-being of nurses. We suggest that disaster management should take into consideration the conflict between professional and family responsibilities. In the light of the chronic impact of the nuclear crisis, enhanced support for interpersonal relationships and human resources, as well as appropriate safety precautions, is urgently needed to help affected nurses. (Disaster Med Public Health Preparedness. 2019;13:519-526)

Perceived organizational support and employee well-being

2018 ◽  
Vol 12 (2) ◽  
pp. 469-484 ◽  
Author(s):  
Mashal Ahmed Wattoo ◽  
Shuming Zhao ◽  
Meng Xi
Keyword(s):  
Organizational Support ◽  
Structural Equation ◽  
Perceived Organizational Support ◽  
Well Being ◽  
Work And Family ◽  
Equation Modeling ◽  
Family Responsibilities ◽  
Content Type ◽  
Work Family ◽  
The Impact

Purpose Considering work and family responsibility has become an important issue due to changes in the lives of people, understanding work and family responsibilities is essential for organizations in assisting employees to increase their well-being. Therefore, the purpose of this paper is to find the impact of perceived organizational support (POS) on work–family facilitation (WFF) and work–family conflict (WFC) and eventually on employee well-being. Design/methodology/approach A survey questionnaire is administered to 1,340 employees of Chinese enterprises. Structural equation modeling is used to test the model fit. Findings Results of this study indicate a significant positive relationship between POS and WFF and significant negative relation between POS and WFC. Results of this paper also indicate that WFF and WFC partially mediate the relationship between POS and employee well-being. Originality/value Over the past two decades, the extent of research on work–family literature has been increased. Most of the work–family research works have been conducted in the Western countries. Very little is known about whether these results are applicable to Eastern societies. This study is extended to focus on work–family literature by drawing a sample from different regions of China. The findings of this study may provide a good understanding of WFC and WFF for Chinese employees. This study stresses the importance of providing organizational support to increase the well-being of employees.

Session One: Positive Introduction and Gratitude Journal

2018 ◽  
pp. 8-13
Author(s):  
Tayyab Rashid ◽  
Martin Seligman
Keyword(s):  
Case Studies ◽  
Well Being ◽  
Clinical Environment ◽  
Positive Psychotherapy ◽  
Roles And Responsibilities ◽  
Positive Experiences ◽  
The Impact

In Session One, clients learn about the clinical environment; this chapter also clarifies client and clinician roles and responsibilities. This session teaches how to start the ongoing practice of cultivating gratitude through journaling positive experiences and appreciating the impact of gratitude on well-being. The two positive psychotherapy practices covered in this session are Positive Introduction and Gratitude Journal. The chapter provides a list of readings, videos, and websites that relate to both the Positive Introduction and the Gratitude Journal and offers a worksheet to practice the concepts learned in the chapter. The chapter also includes two case studies to illustrate the use of Positive Introduction and the Gratitude Journal.

scholarly journals Preliminary insights into the impact of primary radiochemotherapy on the salivary microbiome in head and neck squamous cell carcinoma

2020 ◽  
Vol 10 (1) ◽  
Author(s):  
Christina Kumpitsch ◽  
Christine Moissl-Eichinger ◽  
Jakob Pock ◽  
Dietmar Thurnher ◽  
Axel Wolf
Keyword(s):  
Squamous Cell Carcinoma ◽  
Cell Carcinoma ◽  
Head And Neck ◽  
Squamous Cell ◽  
Treatment Options ◽  
Well Being ◽  
Amplicon Sequencing ◽  
Neck Squamous Cell Carcinoma ◽  
Rrna Gene ◽  
The Impact

Abstract Squamous cell carcinoma is the most common type of throat cancer. Treatment options comprise surgery, radiotherapy, and/or chemo(immuno)therapy. The salivary microbiome is shaped by the disease, and likely by the treatment, resulting in side effects caused by chemoradiation that severely impair patients’ well-being. High-throughput amplicon sequencing of the 16S rRNA gene provides an opportunity to investigate changes in the salivary microbiome in health and disease. In this preliminary study, we investigated alterations in the bacterial, fungal, and archaeal components of the salivary microbiome between healthy subjects and patients with head and neck squamous cell carcinoma before and close to the end point of chemoradiation (“after”). We enrolled 31 patients and 11 healthy controls, with 11 patients providing samples both before and after chemoradiation. Analysis revealed an effect on the bacterial and fungal microbiome, with a partial antagonistic reaction but no effects on the archaeal microbial community. Specifically, we observed an individual increase in Candida signatures following chemoradiation, whereas the overall diversity of the microbial and fungal signatures decreased significantly after therapy. Thus, our study indicates that the patient microbiome reacts individually to chemoradiation but has potential for future optimization of disease diagnostics and personalized treatments.

scholarly journals Memory and communication support strategies in dementia: Effect of a training program for informal caregivers

2012 ◽  
Vol 24 (12) ◽  
pp. 1927-1942 ◽  
Author(s):  
Jacki Liddle ◽  
Erin R. Smith-Conway ◽  
Rosemary Baker ◽  
Anthony J. Angwin ◽  
Cindy Gallois ◽  
...  
Keyword(s):  
Training Program ◽  
Controlled Trial ◽  
Informal Caregivers ◽  
Training Group ◽  
Well Being ◽  
Care Recipient ◽  
Control Group ◽  
People With Dementia ◽  
Person With Dementia ◽  
The Impact

ABSTRACTBackground: People with dementia have a range of needs that are met by informal caregivers. A DVD-based training program was developed using research-based strategies for memory and communication in dementia. The effectiveness of the training on the caregiver experience and the well-being of the person with dementia was evaluated.Methods: A pre-test/post-test controlled trial was undertaken with caregiver–care-recipient dyads living in the community. Measures of the carers’ knowledge of memory and communication strategies, burden, positive perceptions of caregiving, and perceptions of problem behaviors were taken pre- and three months post-intervention. The depression and well-being of the person with dementia were also evaluated. Satisfaction with the training and feedback were measured.Results: Twenty-nine dyads (13 training group, 16 control group) participated. Bonferroni's correction was made to adjust for multiple comparisons, setting α at 0.00385. A significant improvement was found in caregivers’ knowledge for the training group compared to the control group (p = 0.0011). The training group caregivers reported a reduction in the frequency of care recipient disruptive behaviors (p = 0.028) and increased perceptions of positive aspects of caregiving (p = 0.039), both at a level approaching significance. The training group care recipients had increased frequency of verbally communicated depressive behaviors at a level approaching significance (p = 0.0126). The frequency of observed depressive behaviors was not significantly different between groups.Conclusions: This approach to training for caregivers of people with dementia appears promising for its impact on knowledge and the caregiving experience. Further research could monitor the impact of the training on broader measures of depression and well-being, with a larger sample.

scholarly journals Well-being, mood and calcium homeostasis in patients with hypoparathyroidism receiving standard treatment with calcium and vitamin D

2002 ◽  
pp. 215-222 ◽  
Author(s):  
W Arlt ◽  
C Fremerey ◽  
F Callies ◽  
M Reincke ◽  
P Schneider ◽  
...  
Keyword(s):  
Vitamin D ◽  
Standard Treatment ◽  
Treatment Options ◽  
Well Being ◽  
Controlled Study ◽  
Mineral Density ◽  
Current Standard ◽  
Cross Sectional ◽  
Calcium Phosphorus ◽  
The Impact

OBJECTIVE: Standard treatment in hypoparathyroidism consists of calcium and vitamin D (or vitamin D analogs) but does not employ replacement of the actual missing hormone. Only few studies have evaluated the efficacy of calcium/vitamin D treatment in hypoparathyroidism; the impact of chronic hypoparathyroid disease on well-being has not been investigated previously. DESIGN: Cross-sectional, controlled study in 25 unselected women with postsurgical hypoparathyroidism since 6.4plus minus8.0 years (s.d.) on stable treatment with calcium and vitamin D (or analogs) and in 25 controls with a history of thyroid surgery but intact parathyroid function, who were matched for sex, age and time since surgery. METHODS: Assessment of well-being and mood using validated questionnaires (the revised version Symptom Checklist 90 (SCL-90-R); the Giessen Complaint List (GBB-24); and the von Zerssen Symptom List (B-L Zerssen)), serum and urinary calcium/phosphorus homeostasis, and in the hypoparathyroid patients also screening for secondary disease by kidney ultrasound, ophthalmological split lamp examination, and measurement of bone mineral density. RESULTS: Serum calcium was in the accepted therapeutic range in the majority of hypoparathyroid patients. However, calcium/phosphorus homeostasis as a whole was clearly non-physiological. Nephrolithiasis was detected in 2 and cataracts in 11 of 25 hypoparathyroid patients. As compared with controls, hypoparathyroid patients had significantly higher global complaint scores in GBB-24 (P=0.036), B-L Zerssen (P=0.002) and SCL-90-R (P=0.020) with predominant increases in the subscale scores for anxiety, phobic anxiety and their physical equivalents. CONCLUSIONS: Current standard treatment in hypoparathyroidism is not only associated with an altered calcium/phosphorus homeostasis but also fails to restore well-being in these patients. Future studies need to address the impact of more physiological treatment options like parathyroid hormone(1-34) or parathyroid transplantation on well-being and mood in these patients.

Session One: Positive Introduction and Gratitude Journal

2018 ◽  
pp. 75-88
Author(s):  
Tayyab Rashid ◽  
Martin Seligman
Keyword(s):  
Well Being ◽  
Positive Psychotherapy ◽  
Roles And Responsibilities ◽  
Positive Experiences ◽  
The Impact

Session One orients clients to the clinical milieu and clarifies client and clinician roles and responsibilities. This session also teaches how to start the ongoing practice of cultivating gratitude through journaling positive experiences and appreciating the impact of gratitude on well-being. The two positive psychotherapy practices covered in this session are Positive Introduction and Gratitude Journal.

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