Understanding of Prognosis Among Parents of Children With Cancer: Parental Optimism and the Parent-Physician Interaction

2007 ◽  
Vol 25 (11) ◽  
pp. 1357-1362 ◽  
Author(s):  
Jennifer W. Mack ◽  
E. Francis Cook ◽  
Joanne Wolfe ◽  
Holcombe E. Grier ◽  
Paul D. Cleary ◽  
...  
Keyword(s):  
Decision Making ◽  
Functional Outcome ◽  
Response Rate ◽  
Cross Sectional Survey ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Factors Associated ◽  
Dana Farber Cancer Institute ◽  
Unrealistic Expectations

Purpose Patients often overestimate their chances of surviving cancer. Factors that contribute to accurate understanding of prognosis are not known. We assessed understanding of likelihood of cure and functional outcome among parents of children with cancer and sought to identify factors that place parents at risk for overly optimistic beliefs about prognosis. Patients and Methods We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) who were treated at the Dana-Farber Cancer Institute and Children's Hospital in Boston, MA, and the children's physicians. Parent and physician expectations for likelihood of cure and functional outcome were compared. In 152 accurate or optimistic parents, we determined factors associated with accurate understanding of likelihood of cure compared with optimism. Results The majority of parents (61%) were more optimistic than physicians about the likelihood of cure. Parents' beliefs about other outcomes of cancer treatment were similar (quality-of-life impairment, P = .70) or more pessimistic (physical impairment, P = .01; intellectual impairment, P = .01) than physicians' beliefs. Parents and physicians were more likely to agree about chances of cure when physicians had confidence in knowledge of prognosis (odds ratio [OR] = 2.55, P = .004) and allowed parents to take their preferred decision-making role (OR = 1.89, P = .019). Conclusion Parents of children with cancer are overly optimistic about chances of cure but not about other outcomes of cancer therapy. Parents tend to be overly optimistic about cure when physicians have little confidence and when the decision-making process does not meet parents' preferences. These findings suggest that physicians are partly responsible for parents' unrealistic expectations about cure.

Parents' Roles in Decision Making for Children With Cancer in the First Year of Cancer Treatment

2011 ◽  
Vol 29 (15) ◽  
pp. 2085-2090 ◽  
Author(s):  
Jennifer W. Mack ◽  
Joanne Wolfe ◽  
E. Francis Cook ◽  
Holcombe E. Grier ◽  
Paul D. Cleary ◽  
...  
Keyword(s):  
Decision Making ◽  
Cancer Treatment ◽  
First Year ◽  
Physician Communication ◽  
Cross Sectional Survey ◽  
High Quality ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Physician Perceptions ◽  
Dana Farber Cancer Institute

Purpose To evaluate the extent to which parents of children with cancer are involved in decision making in the ways they prefer during the first year of treatment. Methods We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) in their first year of cancer treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) and the children's physicians. We measured parents' preferred and actual roles in decision making and physician perceptions of parents' preferred roles. Results Most parents (127 of 192; 66%) wanted to share responsibility for decision making with their children's physician. Although most parents (122 of 192; 64%) reported that they had their preferred role in decision making, those who did not tended to have more passive roles than they wished (47 of 70; 67%; P < .001). Parents were no more likely to hold their ideal roles in decision making when the physician accurately identified the parents' preferred role (odds ratio [OR], 1.04; P = .92). Parents were less likely to hold more passive roles than they wished in decision making when they felt that physician communication (OR, 0.39; P = .04) and information received (OR, 0.45; P = .04) had been of high quality. Parents who held more passive roles than they wished in decision making were less likely to trust their physicians' judgments (OR, 0.46; P = .03). Conclusion Most parents of children in their first year of cancer treatment participate in decision making to the extent that they wish; although, nearly one fourth hold more passive roles than desired. High-quality physician communication is associated with attainment of one's preferred role.

Understanding of prognosis among parents of children with cancer: Parental optimism and the role of the parent-physician interaction

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 6033-6033
Author(s):  
J. W. Mack ◽  
E. F. Cook ◽  
J. Wolfe ◽  
H. E. Grier ◽  
P. D. Cleary ◽  
...  
Keyword(s):  
Decision Making ◽  
Emotional Support ◽  
Overall Response Rate ◽  
Cross Sectional Survey ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Physician Perceptions ◽  
Successful Communication ◽  
Dana Farber Cancer Institute

6033 Background: Patients often overestimate their chances of surviving cancer. Factors that contribute to accurate understanding of prognosis among parents of children with cancer are not known. Methods: We conducted a cross-sectional survey of 194 parents of children with cancer (overall response rate 70%), treated at the Dana-Farber Cancer Institute and Children’s Hospital, Boston, Mass, and the children’s physicians. Our main outcome measure was agreement between parent and physician ratings of the child’s likelihood of cure. Results: The majority of parents (61%) were more optimistic about the likelihood of their child’s cure than their child’s physician was. Most parents, however, believed that their opinions about prognosis either matched (70%) or were more pessimistic (26%) than those of their physicians. When physicians were confident in their knowledge of the child’s prognosis, parent and physician perceptions of prognosis were more likely to agree (OR 2.55, P = .004). Parents whose role in decision-making matched their ideal role were more likely to give prognostic estimates that agreed with physician perceptions of prognosis (OR 1.89, P = .019). In contrast, parent confidence in knowledge (OR .07, P < .0001), coping strategies (disengagement, OR .31, P = .007; reliance on emotional support from others, OR .31, P = .029), and use of intuition to understand prognosis (OR .51, P = .012), were associated with overestimation of likelihood of cure. Conclusions: Many parents overestimate their children’s chances of being cured of cancer. Neither physician nor parent attributes alone account for this finding; rather, successful communication about prognosis requires that physicians relate to parents’ individual communication and decision-making needs. No significant financial relationships to disclose.

scholarly journals Cross-sectional survey of orthotic service provision in the UK: does where you live affect the service you receive?

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e028186
Author(s):  
Nachiappan Chockalingam ◽  
Nicola Eddison ◽  
Aoife Healy
Keyword(s):  
Outcome Measures ◽  
Service Provision ◽  
Response Rate ◽  
Waiting Times ◽  
Lead Times ◽  
Limited Information ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
The Uk

ObjectiveTo investigate the quantity and quality of orthotic service provision within the UK.DesignCross-sectional survey obtained through freedom of information request in 2017.SettingNational Health Service (NHS) Trusts/Health Boards (HBs) across the UK.Main outcome measuresDescriptive statistics of survey results, including information related to finance, volume of appointments, patients and orthotic products, waiting times, staffing, complaints, outcome measures and key performance indicators.ResultsResponses were received from 61% (119/196) of contacted Trusts/HBs; 86% response rate from Scotland (12/14) and Wales (6/7), 60% (3/5) from Northern Ireland and 58% (98/170) from England. An inhouse service was provided by 32% (35/110) of responses and 68% (74/110) were funded by a block contract. Long waiting times for appointments and lead times for footwear/orthoses, and large variations in patient entitlements for orthotic products across Trusts/HBs were evident. Variations in the length of appointment times were also evident between regions of the UK and between contracted and inhouse services, with all appointment times relatively short. There was evidence of improvements in service provision; ability for direct general practitioner referral and orthotic services included within multidisciplinary clinics. However, this was not found in all Trusts/HBs.ConclusionsThe aim to provide a complete UK picture of orthotic service provision was hindered by the low response rate and limited information provided in some responses, with greater ability of Trusts/HBs to answer questions related to quantity of service than those that reflect quality. However, results highlight the large discrepancies in service provision between Trusts/HBs, the gaps in data capture and the need for the UK NHS to establish appropriate processes to record the quantity and quality of orthotic service provision. In addition to standardising appointment times across the NHS, guidelines on product entitlements for patients and their lead times should be prescribed to promote equity.

Caring for the caregiver: factors associated with the quality of life of family caregivers to palliative care patients

2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Patient ◽  
Terminal Phase ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
The Impact

Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients. Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving. Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.    

scholarly journals Institutional design and utilisation of evaluation results in Uganda’s public universities: Empirical findings from Kyambogo University

2017 ◽  
Vol 5 (1) ◽  
Author(s):  
James Kabuye ◽  
Benon C. Basheka
Keyword(s):  
Decision Making ◽  
Institutional Design ◽  
Monitoring And Evaluation ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Evaluation Systems ◽  
Effective Decision ◽  
Effective Decision Making ◽  
The University

Background: The need for evidence-based decision-making scaled up the need for monitoring and evaluation systems in Africa. The education sector has received increasing scrutiny, owing to its centrality in promoting the national agenda of countries. The higher education sub-sector has expanded in its drive to increase accessibility, albeit with numerous challenges and doubts, especially about the quality of education. Numerous evaluations in this sub-sector in Uganda have been carried out, but their results have not been used for effective decision-making. In this regard, the non-utilisation trend of evaluation findings is attributable to the design of the institutions where these evaluations are carried out.Objectives: The study examined the relationship between institutional design (procedural rules, evaluation processes and institutional capacity) and utilisation of evaluation results at Kyambogo University.Methodology: This was a cross-sectional survey involving a sample of 118 respondents whose views were obtained through the use of questionnaires and key informant interviews triangulated with documentary analysis.Results: The study found that procedural rules, evaluation processes and evaluation capacity had a positive (0.459, 0.486 and 0.765, respectively) and a statistically significant (sig. = 0.000) effect on utilisation of evaluation results. This means that the dimensions of institutional design were important predictors of utilisation of evaluation results by a public sector agency.Conclusion: Strengthening of the evaluation competences and capacity of the university by empowering the Directorate of Planning and Development to coordinate and harmonise all evaluations and be charged with the follow-up of utilisation of the results is an emerging recommendation from this study.

Attitudes toward disease and prognosis disclosure and decision making for terminally ill patients in Japan, based on a nationwide random sampling survey of the general population and medical practitioners

2006 ◽  
Vol 4 (4) ◽  
pp. 389-398 ◽  
Author(s):  
MITSUNORI MIYASHITA,. ◽  
SHUJI HASHIMOTO ◽  
MASAKO KAWA ◽  
YASUO SHIMA ◽  
HIROMI KAWAGOE ◽  
...  
Keyword(s):  
Decision Making ◽  
General Population ◽  
Response Rate ◽  
Cross Sectional Survey ◽  
Related Factors ◽  
Cross Sectional ◽  
Medical Practitioners ◽  
Incurable Disease ◽  
Anonymous Questionnaire ◽  
The Family

Objective: Employing a nationwide cross-sectional survey, we investigated the Japanese general population's attitudes toward disease and prognosis disclosure and related factors. Furthermore, we investigated Japanese medical practitioners' attitudes toward disease and prognosis disclosure for patients and decision making.Methods: A nationwide anonymous questionnaire survey was conducted. A total of 5000 individuals were randomly sampled from the general population and 3104 physicians and 6059 nurses were randomly sampled in Japan.Results: Finally, 2422 people from the general population (response rate, 48%), 1577 physicians (51%), and 3361 nurses (56%) returned questionnaires. Among the general population, 73% of participants answered that they “want to know” about their disease and prognosis when in an incurable disease state. Ninety percent desired direct disclosure and 8% disclosure through their family. However, few medical practitioners answered “patient himself” (physician 3%, nurses 4%) as the person whom they would primarily notify about the disease and prognosis when in charge of a patient with an incurable disease. On the other hand, physicians answered “family” most frequently (59%), whereas nurses most commonly responded, “depends on patient's condition” (63%).Significance of research: Several detailed analyses of factors associated with prognosis disclosure were conducted. Japanese physicians need to carefully communicate with the patients individually about whether direct disclosure or disclosure primarily to the family is preferred.

scholarly journals Factors associated to quality of life of orthodontists graduated from a public university (1993-2016): A mixed-methods approach

2020 ◽  
Vol 25 (5) ◽  
pp. 23e1-23e12 ◽  
Author(s):  
Natalia Muñoz-Pino ◽  
Anderson E. Tibaná-Guisao ◽  
Johnatan D. Cardona-Hincapié ◽  
Alejandro Hurtado-Aristizábal ◽  
Andrés A. Agudelo-Suárez
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Public University ◽  
Bivariate Analysis ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
Independent Variables ◽  
Research Activities

ABSTRACT Introduction: For dental professionals, including orthodontists, Quality of life (QOL) is a topic of growing concern and could be determined by objective and subjective complex factors. Objective: This study analyzed the factors that influence the QOL of orthodontists graduated between 1993 and 2016 of a public university (Medellín, Colombia). Methods: A mixed-methods study was conducted (cross-sectional survey; 88 participants; 3 focus groups, 21 participants). Quantitative analysis: the research included sociodemographic, labor and health characteristics as independent variables and the WHOQOL-BREF questionnaire as main outcome for QOL. Frequencies were calculated and the association between QOL and independent variables was estimated by bivariate analysis (Chi square tests) and a linear multivariate regression. Qualitative analysis: Narrative content analysis according to thematic categories. Mixed methods: a conceptual framework for QOL using the triangulation was developed. Results: All the scores surpassed 55 points on the 4 domains of WHOQOL-BREF. A lower value was found in the physical dimension (57.1±10.7) and a greater value in the psychological dimension (70.8±8.3). The variables associated positively to QOL were permanent contract, teaching/research activities, monthly income, resting days per week and sex. Factors associated negatively were low social support, mental health and rent housing. Discourses of participants allowed to identify the concept of QOL and the contextual and social determinants and satisfiers. Conclusion: QOL of orthodontists is influenced by sociodemographic, employment, working and health factors. Therefore, QOL is a multidimensional concept that recognizes the political and socio-economic context and personal and professional experiences.

Pediatric cancer communication in Guatemala.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18508-e18508
Author(s):  
Dylan E. Graetz ◽  
Silvia Elena Rivas ◽  
Huiqi Wang ◽  
Yuvanesh Vedaraju ◽  
Meenakshi Devidas ◽  
...  
Keyword(s):  
Decision Making ◽  
Information Exchange ◽  
Cultural Awareness ◽  
The United States ◽  
Cross Sectional Survey ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Middle Income ◽  
Communication Processes ◽  
Healing Relationships

e18508 Background: Effective diagnostic communication is a cornerstone of cancer care. While > 90% of children with cancer live in low- and middle-income countries, little is known about patients’ and families’ communication priorities and experiences. We examined parent priorities for communication and the quality of information-exchange and decision-making during diagnostic communication in Guatemala. Methods: This study was conducted at Unidad Nacional de Oncologia Pediatrica. A cross-sectional survey was verbally administered in Spanish to 100 parents of children with cancer within 8 weeks of diagnosis. The survey included items utilized in pediatric communication studies from high-income countries and novel questions developed specifically for the study population. Results: Guatemalan parents prioritized communication functions including information exchange (99%), fostering healing relationships (98%), decision-making (97%), enabling self-management (96%) and managing uncertainty (94%) over functions such as responding to emotions (66%) and cultural awareness (48%). Almost all Guatemalan parents (96%) wanted as many details as possible about their child’s cancer. However, only 67% reported that they were always given the information they needed without asking for it, and most said they sometimes (56%) or always (18%) had questions they wanted to discuss with the doctor but did not. Half of parents (54%) correctly identified their child’s diagnosis, primary site, extent of disease (localized versus metastatic), length of proposed treatment, and treatment intent (curative versus palliative). Parents of children diagnosed with leukemia were more likely to understand all pieces of information than those whose children had solid tumors (p < 0.001). Most parents (76%) preferred to share in decision-making with oncologists. Two-thirds of parents (65%) held their preferred role in decision-making, with fathers more likely to hold their preferred role than mothers (p = 0.02). Reflecting on decisions they had made, 94% of parents strongly agreed they had made the right decisions. However, 17% of parents endorsed feeling that their choices had caused their children harm. Conclusions: Similar to findings from the United States, parents in Guatemala prioritize many aspects of diagnostic communication, especially information exchange, development of healing relationships, and decision-making. Nonetheless, many parents report challenges in information exchange and decision-making, suggesting a need for interventions to support communication processes.

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