Parent and Child Preferences and Styles of Communication About Cancer Diagnoses and Treatment

2019 ◽  
Vol 36 (6) ◽  
pp. 390-401
Author(s):  
Lauren E. Smith ◽  
Anna M. Maybach ◽  
Amanda Feldman ◽  
Austin Darling ◽  
Terrah Foster Akard ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care Providers ◽  
Professional Education ◽  
Emotional Regulation ◽  
Developmentally Appropriate ◽  
Chronically Ill ◽  
Future Research ◽  
Care Providers ◽  
Delivery Of Care

Communication challenges frequently occur among families and health care providers of children with life-threatening conditions. These obstacles compound concerns related to children’s diagnoses and treatment, the family’s quality of life, and delivery of care. Developmentally appropriate and validated methods of addressing the communication preferences of families with chronically ill children are limited. This study used six focus groups to determine child and parent preferences and styles of communication centering on new diagnoses and changes in prognosis. Hypothetical situations were used to minimize feelings of self-consciousness among school-aged and adolescent participants. Qualitative analyses (interrater reliability 75%) of child and parent responses revealed 3 categories and 11 subcategories or themes. The category of Characteristics of Communication Exchange included (1) how to tell, (2) who should tell, (3) when to tell, (4) who should be included, and (5) what to tell. The Knowledge and Understanding category included themes of (1) side effects of treatment, (2) what children understand, and (3) questions when being diagnosed. The category of Feelings and Emotions included themes of (1) feelings about changes in prognosis, (2) children’s feelings on being informed, and (3) coping and emotional regulation. Results reveal a need for developmentally appropriate, evidence-based education to inform parents on how, what, and when to communicate information concerning their child’s disease, as well as instructions around facilitating those discussions. Moreover, a need for professional education and training programs for providers is demonstrated by some parental dissatisfaction with bedside manner and disclosure of information. The data collected from this study lay a foundation for future research in communication as a principal factor in quality of life for pediatric patients and their families.

HIV Symptoms

2007 ◽  
Vol 25 (1) ◽  
pp. 259-291 ◽  
Author(s):  
Carmen J. Portillo ◽  
William L. Holzemer ◽  
Fang-Yu Chou
Keyword(s):  
Quality Of Life ◽  
Health Care Providers ◽  
Highly Active Antiretroviral Therapy ◽  
Medical Attention ◽  
Future Research ◽  
Care Providers ◽  
Highly Active ◽  
Hiv Symptoms ◽  
Hiv Aids

People with HIV/AIDS are a vulnerable group whose symptoms can seriously affect their quality of life. HIV/AIDS symptoms can result from the disease itself, from secondary complications of the disease, or from side-effects of highly active antiretroviral therapy (HAART) and other medications related to comorbidities. HIV symptoms are the single most important indicators for patients and practitioners. Symptoms prompt patients to seek medical attention and provide health care providers with essential clues about changes in health status and quality of life. Despite increased recognition of the importance of addressing symptoms among people with HIV/AIDS, few studies have examined the management of HIV symptoms. This chapter introduces HIV symptoms, reports on the methods of review, provides an overview of contextual issues including the literature on symptoms, issues related to symptom measures, theoretical foundations on symptom management, HIV-specific measures, non-HIV-specific measures, translation of findings into practice, and implications for future research and policy.

scholarly journals Association of comorbid mood disorders and chronic illness with disability and quality of life in Ontario, Canada

2008 ◽  
Vol 28 (4) ◽  
pp. 148-154
Author(s):  
T. Gadalla
Keyword(s):  
Quality Of Life ◽  
Mood Disorders ◽  
Health Care Providers ◽  
Family Relationships ◽  
Chronically Ill ◽  
Chronic Fatigue ◽  
Canadian Community Health Survey ◽  
Care Providers ◽  
Fatigue Syndrome

Mood disorders are more prevalent in individuals with chronic physical illness compared to individuals with no such illness. These disorders amplify the disability associated with the physical condition and adversely affect its course, thus contributing to occupational impairment, disruption in interpersonal and family relationships, poor health and suicide. This study used data collected in the Canadian Community Health Survey, cycle 3.1 (2005) to examine factors associated with comorbid mood disorders and to assess their association with the quality of life of individuals living in Ontario. Results indicate that individuals with chronic fatigue syndrome, fibromyalgia, bowel disorder or stomach or intestinal ulcers had the highest rates of mood disorders. The odds of having a comorbid mood disorder were higher among women, the single, those living in poverty, the Canadian born and those between 30 and 69 years of age. The presence of comorbid mood disorders was significantly associated with short-term disability, requiring help with instrumental daily activities and suicidal ideation. Health care providers are urged to proactively screen chronically ill patients for mood disorders, particularly among the subgroups found to have elevated risk for these disorders.

scholarly journals Psychological risk factors that characterize the trajectories of quality of life after a physical trauma: a longitudinal study using latent class analysis

2021 ◽  
Author(s):  
Eva Visser ◽  
Brenda Leontine Den Oudsten ◽  
Taco Gosens ◽  
Paul Lodder ◽  
Jolanda De Vries
Keyword(s):  
Quality Of Life ◽  
Latent Class Analysis ◽  
Health Care Providers ◽  
Psychological Health ◽  
Latent Class ◽  
Stress Disorder ◽  
Class Analysis ◽  
Care Providers ◽  
Physical Trauma

Abstract Background The course and corresponding characteristics of quality of life (QOL) domains in trauma population are unclear. Our aim was to identify longitudinal QOL trajectories and determine and predict the sociodemographic, clinical, and psychological characteristics of trajectory membership in physical trauma patients using a biopsychosocial approach. Methods Patients completed a questionnaire set after inclusion, and at 3, 6, 9, and 12 months follow-up. Trajectories were identified using repeated-measures latent class analysis. The trajectory characteristics were ranked using Cohen’s d effect size or phi coefficient. Results Altogether, 267 patients were included. The mean age was 54.1 (SD = 16.1), 62% were male, and the median injury severity score was 5.0 [2.0—9.0]. Four latent trajectories were found for psychological health and environment, five for physical health and social relationships, and seven trajectories were found for overall QOL and general health. The trajectories seemed to remain stable over time. For each QOL domain, the identified trajectories differed significantly in terms of anxiety, depressive symptoms, acute stress disorder, post-traumatic stress disorder, Neuroticism, trait anxiety, Extraversion, and Conscientiousness. Discussion Psychological factors characterized the trajectories during 12 months after trauma. Health care providers can use these findings to identify patients at risk for impaired QOL and offer patient-centered care to improve QOL.

scholarly journals Patient Suffering in Chronic Digestive Diseases: Will Primary Care-Specialist Collaboration With Effective Interactive Communication and Integrative Medicine in the Plan of Care Improve Quality of Life?

2020 ◽  
Vol 7 (6) ◽  
pp. 989-993
Author(s):  
Andrew Thomas ◽  
Annie Thomas
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Health Care ◽  
Health Care Providers ◽  
The United States ◽  
Care Providers ◽  
Physician Visits ◽  
Digestive Diseases ◽  
Care Specialist

Acute and chronic digestive diseases are causing increased burden to patients and are increasing the United States health care spending. The purpose of this case report was to present how nonconfirmatory and conflicting diagnoses led to increased burden and suffering for a patient thus affecting quality of life. There were many physician visits and multiple tests performed on the patient. However, the primary care physician and specialists could not reach a confirmatory diagnosis. The treatment plans did not offer relief of symptoms, and the patient continues to experience digestive symptoms, enduring this burden for over 2 years. The central theme of this paper is to inform health care providers the importance of utilizing evidence-based primary care specialist collaboration models for better digestive disease outcomes. Consistent with patient’s experience, the authors propose to pilot/adopt the integrative health care approaches that are proven effective for treating digestive diseases.

How Are You Feeling? Who Wants To Know? Patients’ and Oncologists’ Preferences for Discussing Health-Related Quality-of-Life Issues

2000 ◽  
Vol 18 (18) ◽  
pp. 3295-3301 ◽  
Author(s):  
S.B. Detmar ◽  
N.K. Aaronson ◽  
L.D. V. Wever ◽  
M. Muller ◽  
J.H. Schornagel
Keyword(s):  
Quality Of Life ◽  
Health Care Providers ◽  
Physical Symptoms ◽  
Psychosocial Issues ◽  
Care Providers ◽  
Health Related Quality ◽  
Wide Range ◽  
Related Quality ◽  
Health Related

PURPOSE: This study investigated (1) the attitudes of cancer patients toward discussing health-related quality-of-life (HRQL) issues; (2) the association between such attitudes and patients’ characteristics; and (3) oncologists’ attitudes and self-reported behavior regarding these same issues. PATIENTS AND METHODS: Two hundred seventy-three patients receiving palliative chemotherapy and ten physicians were asked to complete a series of questionnaires. RESULTS: Almost all patients wanted to discuss their physical symptoms and physical functioning and were also willing to address their emotional functioning and daily activities. However, 25% of the patients were only willing to discuss these latter two issues at the initiative of their physician. Patients varied most in their willingness to discuss their family and social life, with 20% reporting no interest in discussing these issues at all. Female patients were more reluctant to discuss various HRQL issues than male patients. Older and less well-educated patients were more likely to prefer that their physician initiate discussion of HRQL issues. All physicians considered it to be primarily their task to discuss the physical aspects of their patients’ health, whereas four physicians indicated that discussion of psychosocial issues was a task to be shared with other health care providers. All physicians indicated that they generally defer to their patients in initiating discussion of psychosocial issues. CONCLUSION: Although both patients and oncologists seem willing to discuss a wide range of HRQL issues, communication regarding psychosocial issues may be hampered by competing expectations as to who should take the lead in initiating such discussions.

ALS caregiver quality of life and psychological implications

2018 ◽  
Author(s):  
Peggy Z. Shipley
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Care Providers ◽  
Physical And Mental Health ◽  
Emotional Challenges ◽  
Disease Trajectory ◽  
Caregiver Quality ◽  
High Distress

Amyotrophic lateral sclerosis (ALS) impacts greatly not only those who have the disease, but also family caregivers who provide the majority of care for their loved ones throughout the ALS disease trajectory. In the provision of this care, these family caregivers frequently experience significant threats to their own physical and mental health, and thus to their quality of life. The burden of caregiving can be high, distress is not uncommon, and support is needed to best address these issues. Despite the physical and emotional challenges faced by family caregivers, limited research has been directed at this caregiving phenomenon. The more health care providers understand the key elements of the ALS caregiving experience, the better equipped they will be to recognize the caregivers as not only co-providers of care, but as potential recipients of care to meet the unique physical and mental challenges of this caregiving population.

scholarly journals A Canadian perspective on the subcutaneous administration of rituximab in non-Hodgkin lymphoma

2017 ◽  
Vol 24 (1) ◽  
pp. 33 ◽  
Author(s):  
D. MacDonald ◽  
T. Crosbie ◽  
A. Christofides ◽  
W. Assaily ◽  
J. Wiernikowski
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Hodgkin Lymphoma ◽  
Health Care Providers ◽  
Subcutaneous Administration ◽  
Fixed Dose ◽  
Care Providers ◽  
Health Care Resources ◽  
Non Hodgkin Lymphoma

Rituximab is widely used for the treatment of non-Hodgkin lymphoma, being a key component in most therapeutic regimens. Administration of the intravenous (IV) formulation is lengthy and places a significant burden on health care resources and patient quality of life. A subcutaneous (sc) formulation that provides a fixed dose of rituximab is being examined in a number of studies. Results indicate that the pharmacokinetics are noninferior and response rates are comparable to those obtained with the IV formulation. Moreover, the sc formulation is preferred by patients and health care providers and reduces administration and chair time. Additional advantages include a lesser potential for dosing errors, shorter preparation time, reduced drug wastage, and fewer infusion-related reactions. Despite the success of the sc formulation, correct administration is needed to reduce administration-related reactions. By using a careful procedure, the sc formulation can be given safely and effectively, potentially reducing the burden on health care resources and improving quality of life for patients.

scholarly journals Complementary and Alternative Medicine Use and Its Association with Quality of Life among Cancer Patients Receiving Chemotherapy in Ethiopia: A Cross-Sectional Study

2016 ◽  
Vol 2016 ◽  
pp. 1-8 ◽  
Author(s):  
Daniel Asfaw Erku
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Cancer Patients ◽  
Health Care Providers ◽  
Cross Sectional Study ◽  
Care Providers ◽  
Sectional Study ◽  
Cross Sectional ◽  
Cam Use

Background.Today, complementary and alternative medicine (CAM) use is being routinely practiced by cancer patients worldwide. This study aimed at examining the prevalence of CAM use in patients with cancer and comparing the quality of life (QoL) in CAM users and nonusers.Methods.A cross-sectional study was employed on 195 cancer patients receiving chemotherapy at Gondar University Referral Hospital (GURH) chemotherapy center. Interviewer-administered questionnaires were used and the collected data were analyzed by the Statistical Package for the Social Sciences (SPSS) software version 21.0 for Windows.Results.154 (79%) patients were found to be users of CAM. Educational status, average monthly income, disease stage, and comorbidity were strong predictors of use of CAM. The most commonly utilized types of CAM were traditional herbal based medicine (72.1%) and only 20.8% of patients discuss with their doctors CAM use. No significant difference was found in QoL between CAM users and nonusers except in financial difficulties (p=0.020).Conclusions.This study revealed a high rate of CAM use with very low disclosure rate to their health care providers. Health care providers should be open to discuss the use of CAM with their patients as it will lead to better health outcome.

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