The Representational approach as described in the detailed description.

The Representational approach as described in the detailed description. Each participating parent receives three rounds that consist of two meetings. Each round starts with a meeting where the parent identifies an area where he/she needs more information. The nurse and the parent jointly survey the parent's representation of the area and discusses consequences of knowledge gaps or misunderstandings. Then, new information is introduced and benefits from the new information is discussed. After some days, a follow-up meeting takes place.

Representational approach

Ulla Hällgren Graneheim, Associate professor

The aim of this study is to explore whether an intensified informational intervention built upon the Representational approach framework can reduce stress in parents of children with cancer.

BACKGROUND

Parents of children with cancer have great information needs and report that these are not always met. Psychosocial suffering such as stress and anxiety is also common in this group.

HYPOTHESIS

An informational intervention emanating from the needs identified by parents is associated to decreased perceived stress, decreased depressive symptoms, decreased anxiety, increased satisfaction with information and decreased use of health care contacts in parents.

INTERVENTION

The intervention builds upon the Representational approach. This approach emanates from Leventhal's theories of illness representations and theories of conceptual change. Central qualities in the approach is that parents identify the area where information is needed themselves and that a thorough assessment of their current representation of that area is performed before information is given.

Each participating parent receives three rounds that consist of two meetings. Each round starts with a meeting where the parent identifies an area where he/she needs more information. The nurse and the parent jointly survey the parent's representation of the area and discusses consequences of knowledge gaps or misunderstandings. Then, new information is introduced and benefits from the new information is discussed. After some days, a follow-up meeting takes place.

DESIGN AND METHODS

The intervention will be evaluated using a single-case design (A-B-A-B-A-B-A) with 10 parents. All parents will receive the intervention, and repeated measures of the outcome variables both before and after will be used to assess the effect of the intervention. Data will be collected by web questionnaires with SMS- and e-mail reminders.

In parallel, a process evaluation aiming at describing treatment fidelity, experiences of participation and impact of contextual factors on the results. For this aim, qualitative interviews with participants and audio recording of intervention sessions will be used.

Information to Parents of Children With Cancer. An Exploratory Study

As measured by the Perceived stress scale (PSS). 10 items answered on a 5-point Likert scale.

Includes headache, sleep disturbances, palpitations, and heartburn, each measured on a 4-point scale.

Measured on a 7-point visual digital scale.

Includes general satisfaction with the information from the health care professionals as well as information from the intervention nurses. Measured on a 7-point visual digital scale.

Number of contacts with the health care system concerning the ill child and the parent's own health problems.

Umeå University

Associate professor

Behaviors and Mental Disorders

All Conditions

Quality of Life

David Wendler, Ph.D.

Background:

- Palliative care, also known as comfort care, is intended to keep a patient comfortable by focusing on pain and symptom management to improve quality of life. Although palliative care has been demonstrated to be beneficial, it is underutilized in children who have been diagnosed with cancer, because current trends favor palliative care primarily at the end of life and in only a small number of patients. Children with cancer likely would benefit from the incorporation of palliative care from the time of diagnosis, but both doctors and families are often reluctant to include it for a variety of reasons. Researchers are interested in understanding these reasons to determine better ways to include palliative care as part of cancer treatment methods in children with cancer.

Objectives:

- To collect information on pediatric oncology patients and their parents attitudes towards palliative care, along with cancer treatment, from the time of diagnosis.

Eligibility:

* Children and adolescents between 10 and 17 years of age who have been diagnosed with cancer in the past year.
* Parents of eligible children.

Design:

* Participants will complete a 30-minute survey about experiences with pain, symptom management, and focus on quality of life in the first month following cancer diagnosis. Child participants will be asked about their views on the importance of quality of life in the beginning of their illness, as well as their attitudes toward symptom-oriented care. Parent participants will be asked questions about their child s illness, which includes understanding, discussion, and impact of illness.
* Treatment will not be provided as part of this protocol.

Background:

* Palliative care, while demonstrated to be beneficial, is underutilized in pediatric oncology.
* The current model in the U.S. favors palliative care involvement primarily at the end of life and only in a fraction of patients.
* Children with cancer likely would benefit from the incorporation of palliative care from the time of diagnosis.
* Obstacles to the incorporation of palliative care from the time of diagnosis include the possibility that the current model provides sufficient care in these areas and the possibility that families may be averse to early palliative care involvement on the grounds that it would be intrusive, detract from their goal of cure, and/or lead to a loss of hope.
* To gather data relevant to evaluating these potential obstacles, we plan to interview pediatric oncology patients and their parents to determine their views regarding provision of palliative care, along with cancer therapy, from the time of diagnosis.

Objectives:

* Primary

  * To assess parent and patient attitudes toward the integration of palliative care in pediatric oncology patients from the time of diagnosis.
  * To develop a survey instrument that can reliably assess the views of pediatric oncology patients and their parents with regard to patients symptom burden and management at the beginning of cancer therapy as well as attitudes toward early integration of palliative care with oncology care.
* Secondary/Specific Objectives

  * To assess the degree and effect of negative symptoms in children with cancer in the beginning of cancer therapy as well as the extent to which pediatric patients symptoms and suffering at this time are being adequately managed.
  * To assess the emphasis that families place on quality of life in symptom management and treatment decision making as well as the satisfaction with the degree of attention given to quality of life by the medical team.
  * To assess patient and parent attitudes toward palliative care in general and receptivity toward pediatric palliative care team involvement from the time of diagnosis.
  * To assess understanding of prognosis and its relationship to parent and patient attitudes toward the integration of palliative care in pediatric oncology care from the time of diagnosis.
  * To assess concordance between parents and patients in their attitudes toward the integration of palliative care in pediatric oncology patients from the time of diagnosis.

Eligibility:

-Patients eligible for inclusion will be children diagnosed with an oncologic disease at least 1 month and no greater than 1 year prior with age at diagnosis of 10 to 17 years. Both patient and parent must agree to participate to be eligible for inclusion.

Design:

* Surveys will be administered to consenting patient/parent pairs with the parent completing a written survey while the patient is surveyed in the absence of the participating parent.
* Total enrollment will be a minimum of 70 subject pairs and a maximum of 110 subject pairs with a target goal of 100 subject pairs enrolled over a 6 month period.

Data collected from responses to the surveys will be analyzed at the conclusion of the survey period to assess for individual content as well as concordance between the patients and their parents.

Evaluating Supportive Care for Children With Cancer: A Multi-Institutional Survey Study of Pediatric Oncology Patients and Parents

National Institutes of Health Clinical Center (CC)

This is quality improvement study that is descriptive and is utilizing a convenience sample of direct care registered nurses employed full-time for at least one year at St. Jude Children's Research Hospital.Participants will take a onetime researcher generated therapeutic boundaries questionnaire which will describe behaviors and attitudes regarding therapeutic boundaries.

La-Kenya Kellum, DNP, RN

Professional therapeutic boundaries are defined as the limits that protect the space between a professional's power and patient's vulnerability. It is important to develop therapeutic alliances while maintaining boundaries, thus ensuring nurses develop safe connections with patients and their families based on therapeutic needs. Due to the professional nature of nursing, boundary violations are common. For example, closeness and familiarity develops between the healthcare provider, patient, and caregiver that encompass the physical, emotional, and spiritual realms. This provides an opportunity for intense bonds with patients and families. Furthermore in oncology healthcare, providers deliver compassionate care and empathize with patients and families while sharing in the patient's illness journey. As a result of these bonds and relationships the nurse may over disclose personal information, provide excessive patient attention, meeting their own personal needs instead of the patient and family. In addition, continuity of care contributes to boundary crossings because there is frequent repeated contact with the same patients and families which allows blurring of boundary lines. When staff spend weeks, months, or even years with the same patient the opportunity to connect and talk about personal life details exist. At the national level, the National Council of State Boards of Nursing (NCSBN) has created materials for educating nurses in maintenance of therapeutic boundaries. Adherence to therapeutic boundaries has now become an education objective, with the development of educational interventions within many health care settings. Likewise, St. Jude nurses are at an increased risk of crossing therapeutic boundaries due to long term care relationships and vulnerable family members. However, nursing administration has not formally assessed the attributes or behaviors of the nursing staff. This proposal will describe the attributes and behaviors of the St. Jude staff nurse towards nurse-patient/family boundaries, providing knowledge to nursing leadership that will facilitate therapeutic boundaries focus groups with direct care nurses.

Participants will take a onetime researcher generated therapeutic boundaries questionnaire which will describe behaviors and attitudes regarding therapeutic boundaries.

The main objective of the study is to :

To describe behaviors and attitudes towards nurse-patient/family boundaries of direct patient care Registered Nurses (RNs) at St. Jude Children's Research Hospital

Evaluating Therapeutic Boundaries Among Bedside Nurses At A Pediatric Hematology/Oncology Research Hospital

Each question will be analyzed and interpreted individually. More importantly, for each question, the percentage of nurses reporting "sometimes" or "often" will be reported because the questions where nurses more likely to score high are good references for planning the future nursing education series.

St. Jude Children's Research Hospital

Infections

Neoplasms

Virus Diseases

Papilloma

Neoplasms, Squamous Cell

Neoplasms, Glandular and Epithelial

Neoplasms by Histologic Type

All Drugs and Chemicals

Vaccines

Subjects are randomized to receive one of five messages on one of the four themes about HPV vaccination.

Subjects are randomized to receive one of five messages about electronic cigarettes.

Messages educate parents with facts about HPV vaccination.

Social Media Message about HPV and HPV vaccine

Messages educate parents with facts about electronic cigarettes. This is an attention control group without outcomes obtained.

Social media message about risk of electronic cigarettes.

Ardis L Olson, MD

This project involves a social media campaign to increase parent's knowledge and acceptance of the HPV (human papillomavirus) vaccine. The current vaccine protects against nine types of HPV, including seven that are known to cause cancer. The Centers for Disease Control and Prevention (CDC) estimates that the current HPV vaccine could prevent 90% of cancer cases caused by HPV, including cases of cervical cancer, oropharyngeal (mouth and throat) cancer, anal cancer, and others. About 150 and 104 cases of HPV-associated cancers are diagnosed each year in New Hampshire and Vermont, respectively-many of which could be prevented through vaccination. Currently, only 49.8% of New Hampshire adolescents and 44.3% of Vermont adolescents were not up-to-date for HPV vaccination as of 2016. This social media campaign is testing a set of campaign messages with parents locally and nationally to see which messages are most effective in improving their knowledge and acceptance of the vaccine. A study survey link will monitor the number of people reached and will measure parental intention to get their children vaccinated against HPV.

Participants are not aware of which arm of social messaging they are receiving and whether they are receiving the control message or not

HPV Message Testing and Social Media Campaign

Change in Attitudes about HPV vaccine: Pre to post test comparison of summated 9 items measured on a 7-point scale of HPV vaccine attitudes. Scores range from a minimum of 9 to a maximum of 63. Higher scores indicated more positive attitudes toward HPV vaccination. Change was calculated from two time points, the later time point(\<1 hour post messaging intervention) minus value at baseline.

A sub-group of parents of 9-14 year old children who had not been vaccinated were asked on pre- and post-test: How likely is it that she/he will receive the HPV vaccine in the next 12 months? Responses range form 1 (very likely) to 5 (not very likely).

HPV vaccination behavioral intent change scores were calculated by subtracting pre- and post- test values. It is a negative-value scale, in which smaller values indicate more positive attitude change after exposure to the viewed message.

National Cancer Institute (NCI)

Norris Cotton Cancer Center

Dartmouth-Hitchcock Medical Center

Physician, Professor of Pediatrics

Subjects are randomized to receive one of five messages on one of the four themes about HPV vaccination.

Social Media Message about HPV and HPV vaccine: Messages educate parents with facts about HPV vaccination.

HPV Messaging

Subjects are randomized to receive one of five messages about electronic cigarettes.

Social media message about risk of electronic cigarettes.: Messages educate parents with facts about electronic cigarettes. This is an attention control group without outcomes obtained.

Control Message

834 Subjects are randomized to receive one of five messages on one of the five themes about HPV vaccination.(165-167/group)

Social Media Message about HPV and HPV vaccine: Messages educate parents with facts about HPV vaccination.

164 Subjects are randomized to receive one of five messages about electronic cigarettes.

Social media message about risk of electronic cigarettes.: Messages educate parents with facts about electronic cigarettes. This is an attention control group without outcomes obtained.

Total

Years of age of parent as reported by study participant who identifies them as a parent on survey.

Age, Continuous

Sex: Female, Male

Race and Ethnicity were not collected from any participant.

Race and Ethnicity Not Collected

Prior knowledge of HPV

This is a single question with the results reported as the answer from 1 to 5 on perceived effective of vaccine in preventing the cancer. Lower scores show a higher perception of it being effective. The full title is used without abbreviation.

HPV Vaccine in prevents Cervical Cancer

5 point scale from strongly disagree to strongly agree.

This is a single question with the results reported as the answer from 1 to 5 on perceived effective of vaccine in preventing the cancer. Lower scores show a higher perception of it being effective. The full title is used without abbreviation.

HPV Vaccine in prevents Throat Cancer

1,713 participants initially recruited but 631 ineligible because no child leaving 1,043 eligible. Of eligibles 998 completed baseline survey.

Dr. Ardis Olson

834 Subjects were randomized to receive one of 25 experimental messages about HPV vaccination

164 Subjects received a control message not about HPV vaccination.

Control Messaging

1 participant in the experimental group and 2 participants in the control group withdrew from the study and are not included in the analysis.

Change in Attitudes About HPV Vaccine

Change in mean scores for behavioral intent to vaccine: negative values: smaller values indicate more likely to vaccinate.

Subjects were randomized to receive one of 25 experimental messages about HPV vaccination.

Behavioral intention to vaccinate only asked of the 155 HPV messaginglgroup parents with children 9-14 years who had not vaccinated their children at time of this experiment

Subjects received a control message not about HPV vaccination.

Behavioral intention to vaccinate only asked of the 34 HPV controllgroup parents with children 9-14 years who had not vaccinated their children at time of this experiment

A sub-group of parents of 9-14 year old children who had not been vaccinated were asked on pre- and post-test: How likely is it that she/he will receive the HPV vaccine in the next 12 months? Responses range form 1 (very likely) to 5 (not very likely).

Behavioral Intention to Vaccinate Their Child With HPV Vaccine

834 Subjects were randomized to receive an experimental message about HPV vaccination.

Overall Study

This study will explore what research patients understand about financial collaborations in the research setting and their concerns about these collaborations. Financial partnerships are crucial to advancing medical research; however, they are giving rise to increasing concerns about financial conflicts of interest and possible impacts on the integrity of research and patient safety. This study will examine patients' views about financial ties between drug companies and the doctors running research studies, as well as ties between the drug companies and the cancer centers where the studies are conducted.

Patients 18 years of age and older who are enrolled in cancer studies at the National Cancer Institute in Bethesda, MD; the Fred Hutchinson Cancer Research Center in Seattle, WA; the Dana-Farber Cancer Institute in Boston, MA; the Columbia Comprehensive University Herbert Irving Cancer Center in New York, NY; and the University of Colorado Cancer Center in Denver, CO, may be eligible for this study.

Participants are interviewed about the following:

* Patients' awareness and understanding about individual and institutional financial conflicts of interest, and how such conflicts, if they exist, are being managed
* The impact of a researcher's financial ties on the patient's decision to participate in that researcher's study
* The impact of the institution's financial ties on the patient's decision to participate in research at that institution
* Attitudes about policies and practices regarding conflicts of interest in the research setting
* Attitudes about disclosure of conflicts of interest in the research setting
* Patient symptoms and performance
* Patient's cancer trial
* Patient's cancer history
* Patient's trust
* Patient demographics (gender, age, race, religion, education, income, health insurance, employment).

This study seeks to inform deliberation of ethical issues related to financial conflicts of interest in clinical research through empirical data obtained from patients participating in cancer studies. In particular, this study endeavors to describe and summarize the views of patients about both individual and institutional financial conflicts of interest pertaining to clinical research. This study will assess awareness of financial conflicts of interest and the current safeguards in place to manage financial ties; assess the impact of hypothetical financial conflicts of interest on a research subject's decision to participate in a clinical study; identify the reasons that financial conflicts of interest either do or do not influence patients' research participation; summarize views regarding the presence of financial conflicts of interest and what limits should be in place to manage them; identify interests about disclosure of these financial conflicts of interest; describe demographic characteristics of subjects enrolled in the survey and evaluate the impact of demographic information on subjects' views regarding financial conflicts of interest. Participants will be recruited from all phases of oncology studies being conducted at 5 sites, the National Cancer Institute in Bethesda, MD; the Dana-Farber Cancer Institute in Boston, MA; the Fred Hutchinson Cancer Research Center in Seattle, WA; the University of Colorado Cancer Center in Denver, CO, and the Columbia University Herbert Irving Comprehensive Cancer Center in New York, NY. The primary methodology for the study is an in-person administration of a questionnaire.

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Information to Parents of Children With Cancer. An Exploratory Study	NCT01502189	Stress Health Knowledg...	Representationa...	18 Years -	Umeå University
Information to Parents of Children With Cancer. An Exploratory Study	NCT01502189	Stress Health Knowledg...	Representationa...	18 Years -	Umeå University
Evaluating Supportive Care for Children With Cancer: A Multi-Institutional Survey Study of Pediatric Oncology Patients and Parents	NCT01273194	Pediatric Cance...		10 Years - 99 Years	National Institutes of Health Clinical Center (CC)
Evaluating Therapeutic Boundaries Among Bedside Nurses At A Pediatric Hematology/Oncology Research Hospital	NCT01355731	Therapeutic Bou... Nurse-Patient R...		18 Years -	St. Jude Children's Research Hospital
HPV Message Testing and Social Media Campaign	NCT03747302	Vaccine Human Papilloma...	Social Media Me... Social media me...	-	Dartmouth-Hitchcock Medical Center
Views of Cancer Patients Regarding Financial Conflicts of Interest	NCT00097682	Neoplasms		18 Years -	National Institutes of Health Clinical Center (CC)

Spots Global Cancer Trial Database for attitudes

Every month we try and update this database with for attitudes cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Spots Global Cancer Trial Database for attitudes

Every month we try and update this database with for attitudes cancer trials from around the world to help patients and their families find trials that might be right for them. We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Every month we try and update this database with for attitudes cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.