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Adolescent and young adult cancer survivors' perceptions of participating in a survey - Ethical and methodological considerations.

https://arctichealth.org/en/permalink/ahliterature299702
Source
Eur J Oncol Nurs. 2019 Apr; 39:55-61
Publication Type
Journal Article
Date
Apr-2019
Author
Maria Olsson
Gunnar Steineck
Karin Enskär
Ulrica Wilderäng
Marianne Jarfelt
Author Affiliation
Institute of Clinical Sciences, Department of Paediatrics, Sahlgrenska Academy, University of Gothenburg, S-416 85, Gothenburg, Sweden. Electronic address: maria.a.olsson@vgregion.se.
Source
Eur J Oncol Nurs. 2019 Apr; 39:55-61
Date
Apr-2019
Language
English
Publication Type
Journal Article
Keywords
Adolescent
Cancer Survivors - psychology
Case-Control Studies
Female
Humans
Male
Patient Participation - psychology
Surveys and Questionnaires
Sweden
Young Adult
Abstract
The aim of this study was to understand patient-reported perception of participation in a population-based web-survey focusing on sensitive issues for adolescent and young adult cancer survivors.
A population-based web survey for adolescent and young adult cancer survivors including a matched control group. Adolescent and young adult cancer survivors from the population-based Swedish National Cancer Registry from four of the six register holders at Regional Cancer Centers in Sweden. Controls were randomly identified from the Swedish National Population registry, from the same register holders.
Of 729 eligible participants, 540 completed the survey i.e. 74% participation rate. The study population included 285 adolescent and young adult cancer survivors and 255 matched controls. None of the participants answered that the survey had a very negative impact on them and a minority of 43 (7.9%) of the 540 responded that they were mildly negatively affected by their participation in the study. There was a no significant difference between patients and controls regarding the negative effect of the participation (p?=?0.29). Positive experiences of participating in the study were widely expressed and most participants (95%) found the study valuable.
These findings suggest that the benefits clearly outweigh the risks when adolescent and young adult cancer survivors participate in surveys including sensitive and trauma-related aspects, given that the study design is ethically sound and participants are approached carefully. We also present a modified ethical protocol for epidemiological surveys on adolescents and young adult cancer survivors.
PubMed ID
30850139 View in PubMed
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Adolescents' perception of the quality of orthodontic treatment.

https://arctichealth.org/en/permalink/ahliterature29729
Source
Scand J Caring Sci. 2005 Jun;19(2):95-101
Publication Type
Article
Date
Jun-2005
Author
Bodil Wilde Larsson
Kurt Bergström
Author Affiliation
Division for Health and Care, Karlstad University, Karlstad, Sweden. bodil.wilde@kau.se
Source
Scand J Caring Sci. 2005 Jun;19(2):95-101
Date
Jun-2005
Language
English
Publication Type
Article
Keywords
Adolescent
Adolescent Psychology
Adult
Attitude to Health
Bias (epidemiology)
Child
Cross-Sectional Studies
Decision Making
Female
Health Care Surveys
Health services needs and demand
Humans
Male
Models, Psychological
Orthodontics - standards - statistics & numerical data
Outcome Assessment (Health Care)
Patient Compliance - psychology
Patient Participation - psychology
Quality of Health Care - standards
Questionnaires
Sweden
Total Quality Management - organization & administration
Urban health
Abstract
The aim was to describe quality of care from a patient perspective among adolescents receiving orthodontic treatment and to assess the relationship between quality of care and outcome-related aspects. The research design was cross-sectional. The sample consisted of 151 young people (mean age 17.1 years, SD: 2.2; 53% girls and 47% boys) receiving orthodontic treatment in the Stockholm region in Sweden (response rate 75%). Data were collected using the Quality from the Patient's Perspective questionnaire. The highest quality of care perceptions were noted on items dealing with receiving the best possible orthodontic treatment and being treated with respect. Less favourable perceptions of the quality of care were found regarding the opportunity to participate in the decisions related to the orthodontic treatment. In order to improve the quality of care a more active involvement of these patients in the decision-making process is suggested. The item 'I received the best possible orthodontic treatment' noted the highest subjective importance rating. The youngest participants reported the most favourable scores and the oldest the least. The majority (74%) reported that they were 'completely satisfied' with the result of the orthodontic treatment. However, 52% claimed that they had not followed all of the advice obtained during the treatment period, and 29% indicated some or more hesitation about attending the same dentist for future treatment.
PubMed ID
15877634 View in PubMed
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Alcohol use and mental distress as predictors of non-response in a general population health survey: the HUNT study.

https://arctichealth.org/en/permalink/ahliterature134764
Source
Soc Psychiatry Psychiatr Epidemiol. 2012 May;47(5):805-16
Publication Type
Article
Date
May-2012
Author
Fartein Ask Torvik
Kamilla Rognmo
Kristian Tambs
Author Affiliation
Division of Mental Health, Norwegian Institute of Public Health, Nydalen, P.O. Box 4404, 0403, Oslo, Norway. fartein.torvik@fhi.no
Source
Soc Psychiatry Psychiatr Epidemiol. 2012 May;47(5):805-16
Date
May-2012
Language
English
Publication Type
Article
Keywords
Adult
Age Distribution
Aged
Aged, 80 and over
Alcohol-Related Disorders - epidemiology - psychology
Depressive Disorder - epidemiology - psychology
Female
Health Status Indicators
Health Surveys
Humans
Male
Middle Aged
Norway - epidemiology
Odds Ratio
Patient Participation - psychology - statistics & numerical data
Population Surveillance
Questionnaires
Severity of Illness Index
Spouses - psychology
Abstract
To investigate to what degree alcohol use and mental distress are associated with non-response in a population-based health study.
From 1995 to 1997, 91,488 persons were invited to take part in a health study at Nord-Trøndelag, Norway, and the response rate was 69.2%. Demographics were available for everyone. Survey answers from a previous survey were available for most of the participants and a majority of non-participants. In addition, the survey responses from spouses and children of the invitees were used to predict participation in the aforementioned study. Crude and adjusted ORs for a number of predictors, among these alcohol consumption and mental distress, are reported.
Both heavy drinkers (OR = 1.27) and abstainers (OR = 1.64) had a higher probability of dropping out in comparison to people who usually do not drink. High levels of mental distress (OR = 1.84) also predicted attrition.
Alcohol use and mental distress are moderately associated with non-response, though probably not a major cause, as controlling for other variables weakened the associations. Nevertheless, the moderate but clear underrepresentation at the crude level of people with high alcohol consumption, abstainers and people with poor mental health should be taken into consideration when interpreting results from health surveys.
Notes
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PubMed ID
21544604 View in PubMed
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Analgesic medication--communication at pharmacies.

https://arctichealth.org/en/permalink/ahliterature71227
Source
Patient Educ Couns. 2003 Oct;51(2):155-61
Publication Type
Article
Date
Oct-2003
Author
Pär Skoglund
Dag Isacson
Karin I Kjellgren
Author Affiliation
Department of Pharmacy, Pharmacoepidemiology and Pharmacoeconomics, Uppsala University, Uppsala, Sweden.
Source
Patient Educ Couns. 2003 Oct;51(2):155-61
Date
Oct-2003
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Analgesics - administration & dosage
Communication
Community Pharmacy Services
Cooperative Behavior
Female
Humans
Male
Middle Aged
Needs Assessment
Patient Compliance - psychology
Patient Education
Patient Participation - psychology
Pharmacists - psychology
Professional-Patient Relations
Questionnaires
Research Support, Non-U.S. Gov't
Role
Sweden
Tape Recording
Abstract
Treatment conducted in co-operation with the client is decisive for a successful result i.e. adherence to medication, satisfaction and improved health outcome. The aim of this study was to capture the communication between clients and pharmacists when dispensing prescriptions of analgesics in community pharmacies. The study was based on 42 authentic audio-recordings of clients' communication with pharmacists. Most clients had a passive role and the analysis testify to a short and asymmetric communication between the interlocutors. On average, the clients asked three questions. One-third of these questions were related to medication, i.e. dose, effect, written information, symptoms or disease. Of the questions asked by pharmacists, 2% were open in character. The study confirms previous research in other settings on caregiver dominance in consultations. Concordance in pharmaceutical care assumes a much more active client. Therefore facilitating a more active role for the clients at pharmacies is of the outmost importance.
PubMed ID
14572945 View in PubMed
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An exploration of participants' treatment preferences in a partial RCT.

https://arctichealth.org/en/permalink/ahliterature177356
Source
Can J Nurs Res. 2004 Sep;36(3):100-14
Publication Type
Article
Date
Sep-2004
Author
Joyal Miranda
Author Affiliation
Faculty of Nursing, University of Toronto, Ontario, Canada. joyal.miranda@utoronto.ca
Source
Can J Nurs Res. 2004 Sep;36(3):100-14
Date
Sep-2004
Language
English
Publication Type
Article
Keywords
Adult
Behavior Therapy - standards
Choice Behavior
Female
Health Knowledge, Attitudes, Practice
Humans
Male
Middle Aged
Nursing Methodology Research
Ontario
Patient Education as Topic - standards
Patient Participation - psychology
Patient Selection
Qualitative Research
Questionnaires
Randomized Controlled Trials as Topic - psychology
Research Design - standards
Sleep Initiation and Maintenance Disorders - psychology - therapy
Abstract
The partial RCT is a modified design meant to account for participants' treatment preferences. Little is known about the factors that influence such preferences. This study investigated the extent to which participants are willing to be randomized and the factors that affect their treatment preferences. The quantitative and qualitative data collected as part of a partial RCT evaluating 2 behavioural interventions for insomnia were analyzed. Of the participants, 75% were unwilling to be randomly allocated to a treatment group. This figure increased to 90% after information on the 2 interventions was provided. Participants' knowledge of the treatment, its suitability, and their perceived ability to adhere to it influenced their treatment preference. A few participants who had no strong preference and who required treatment were willing to be randomized. The findings raise questions about the impact of treatment preference and allocation procedures on the validity of study conclusions.
Notes
ReprintIn: Can J Nurs Res. 2009 Mar;41(1):276-9019485057
PubMed ID
15551665 View in PubMed
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An item response theory evaluation of three depression assessment instruments in a clinical sample.

https://arctichealth.org/en/permalink/ahliterature123205
Source
BMC Med Res Methodol. 2012;12:84
Publication Type
Article
Date
2012
Author
Mats Adler
Jerker Hetta
Göran Isacsson
Ulf Brodin
Author Affiliation
Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden. adler.mats@gmail.com
Source
BMC Med Res Methodol. 2012;12:84
Date
2012
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Bipolar Disorder - diagnosis - epidemiology - psychology
Female
Health Status Indicators
Humans
Male
Middle Aged
Mood Disorders - diagnosis - epidemiology - psychology
Patient Participation - psychology - statistics & numerical data
Personality Assessment - statistics & numerical data
Psychiatric Status Rating Scales
Psychometrics - instrumentation
Questionnaires
Self-Assessment
Sensitivity and specificity
Severity of Illness Index
Statistics, nonparametric
Sweden - epidemiology
Abstract
This study investigates whether an analysis, based on Item Response Theory (IRT), can be used for initial evaluations of depression assessment instruments in a limited patient sample from an affective disorder outpatient clinic, with the aim to finding major advantages and deficiencies of the instruments.
Three depression assessment instruments, the depression module from the Patient Health Questionnaire (PHQ9), the depression subscale of Affective Self Rating Scale (AS-18-D) and the Montgomery-?sberg Depression Rating Scale (MADRS) were evaluated in a sample of 61 patients with affective disorder diagnoses, mainly bipolar disorder. A '3- step IRT strategy' was used.
In a first step, the Mokken non-parametric analysis showed that PHQ9 and AS-18-D had strong overall scalabilities of 0.510 [C.I. 0.42, 0.61] and 0,513 [C.I. 0.41, 0.63] respectively, while MADRS had a weak scalability of 0.339 [C.I. 0.25, 0.43]. In a second step, a Rasch model analysis indicated large differences concerning the item discriminating capacity and was therefore considered not suitable for the data. In third step, applying a more flexible two parameter model, all three instruments showed large differences in item information and items had a low capacity to reliably measure respondents at low levels of depression severity.
We conclude that a stepwise IRT-approach, as performed in this study, is a suitable tool for studying assessment instruments at early stages of development. Such an analysis can give useful information, even in small samples, in order to construct more precise measurements or to evaluate existing assessment instruments. The study suggests that the PHQ9 and AS-18-D can be useful for measurement of depression severity in an outpatient clinic for affective disorder, while the MADRS shows weak measurement properties for this type of patients.
Notes
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PubMed ID
22721257 View in PubMed
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Are Canadians providing advance directives about health care and research participation in the event of decisional incapacity?

https://arctichealth.org/en/permalink/ahliterature135134
Source
Can J Psychiatry. 2011 Apr;56(4):209-18
Publication Type
Article
Date
Apr-2011
Author
Gina Bravo
Marie-France Dubois
Carole Cohen
Sheila Wildeman
Janice Graham
Karen Painter
Suzanne Bellemare
Author Affiliation
Department of Community Health Sciences, University of Sherbrooke, Sherbrooke, Quebec. Gina.Bravo@USherbrooke.ca
Source
Can J Psychiatry. 2011 Apr;56(4):209-18
Date
Apr-2011
Language
English
Publication Type
Article
Keywords
Adult
Advance Care Planning - ethics - organization & administration - statistics & numerical data
Advance Directive Adherence - standards
Advance Directives - ethics - psychology
Aged
Attitude of Health Personnel
Bioethical Issues
Canada
Choice Behavior
Decision Making
Female
Health services needs and demand
Humans
Male
Mental Competency
Middle Aged
Patient Advocacy
Patient Participation - psychology
Patient Rights
Patient Selection - ethics
Physician-Patient Relations - ethics
Abstract
Advance planning for health care and research participation has been promoted as a mechanism to retain some control over one's life, and ease substitute decision making, in the event of decisional incapacity. Limited data are available on Canadians' current advance planning activities. We conducted a postal survey to estimate the frequency with which Canadians communicate their preferences about health care and research should they become incapacitated.
We surveyed 5 populations (older adults, informal caregivers, physicians, researchers in aging, and research ethics board members) from Nova Scotia, Ontario, Alberta, and British Columbia. We asked respondents whether they had expressed their preferences regarding a substitute decision maker, health care, and research participation in the event of incapacity.
Two out of 3 respondents (62.0%; 95% CI 59.1% to 64.8%) had been advised to communicate their health care preferences in advance. Oral expression of wishes was reported by 69.1% of respondents (95% CI 66.8% to 71.3%), and written expression by 46.7% (95% CI 44.3% to 49.2%). Among respondents who had expressed wishes in advance (orally or in writing), 91.2% had chosen a substitute decision maker, 80.9% had voiced health care preferences, and 19.5% had voiced preferences regarding research participation. Having been advised to communicate wishes was a strong predictor of the likelihood of having done so.
Advance planning has increased over the last 2 decades in Canada. Nonetheless, further efforts are needed to encourage Canadians to voice their health care and research preferences in the event of incapacity. Physicians are well situated to promote advance planning to Canadians.
PubMed ID
21507277 View in PubMed
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Are improvements in shame and self-compassion early in eating disorders treatment associated with better patient outcomes?

https://arctichealth.org/en/permalink/ahliterature106757
Source
Int J Eat Disord. 2014 Jan;47(1):54-64
Publication Type
Article
Date
Jan-2014
Author
Allison C Kelly
Jacqueline C Carter
Sahar Borairi
Author Affiliation
Department of Psychology, University of Waterloo, Waterloo, Ontario, N2L 3G1, Canada.
Source
Int J Eat Disord. 2014 Jan;47(1):54-64
Date
Jan-2014
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Canada - epidemiology
Eating Disorders - psychology - therapy
Female
Humans
Male
Middle Aged
Patient Participation - psychology - statistics & numerical data
Personality Inventory
Predictive value of tests
Psychotherapy - methods
Questionnaires
Self Concept
Shame
Treatment Outcome
Young Adult
Abstract
Compassion-focused therapy (CFT; Gilbert, 2005, 2009) is a transdiagnostic treatment approach focused on building self-compassion and reducing shame. It is based on the theory that feelings of shame contribute to the maintenance of psychopathology, whereas self-compassion contributes to the alleviation of shame and psychopathology. We sought to test this theory in a transdiagnostic sample of eating disorder patients by examining whether larger improvements in shame and self-compassion early in treatment would facilitate faster eating disorder symptom remission over 12 weeks. Participants were 97 patients with an eating disorder admitted to specialized day hospital or inpatient treatment. They completed the Eating Disorder Examination-Questionnaire, Experiences of Shame Scale, and Self-Compassion Scale at intake, and again after weeks 3, 6, 9, and 12. Multilevel modeling revealed that patients who experienced greater decreases in their level of shame in the first 4 weeks of treatment had faster decreases in their eating disorder symptoms over 12 weeks of treatment. In addition, patients who had greater increases in their level of self-compassion early in treatment had faster decreases in their feelings of shame over 12 weeks, even when controlling for their early change in eating disorder symptoms. These results suggest that CFT theory may help to explain the maintenance of eating disorders. Clinically, findings suggest that intervening with shame early in treatment, perhaps by building patients' self-compassion, may promote better eating disorders treatment response.
PubMed ID
24115289 View in PubMed
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Associations between family characteristics and parental empowerment in the family, family service situations and the family service system.

https://arctichealth.org/en/permalink/ahliterature277516
Source
Child Care Health Dev. 2016 Jan;42(1):25-35
Publication Type
Article
Date
Jan-2016
Author
M. Vuorenmaa
M-L Perälä
N. Halme
M. Kaunonen
P. Åstedt-Kurki
Source
Child Care Health Dev. 2016 Jan;42(1):25-35
Date
Jan-2016
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adult
Child
Child Health Services - standards
Child, Preschool
Family Characteristics
Female
Finland - epidemiology
Humans
Infant
Infant, Newborn
Male
Parents - psychology
Patient Participation - psychology
Pediatrics - standards
Physician's Role
Professional-Family Relations
Quality of Life
Social Support
Stress, Psychological
Abstract
Parental empowerment signifies parents' sense of confidence in managing their children, interacting with services that their children use and improving child care services. High empowerment is associated with parents' resilience to demands and their confidence to make decisions and take actions that positively affect their families. Most families with children access various healthcare and education services. Professionals working in these services are therefore ideally placed to reinforce parental empowerment. However, little is known about the characteristics associated with parental empowerment within a generic sample of parents or in the context of basic child care services.
The aim of this study was to assess how family characteristics are associated with maternal and paternal empowerment in the family, in service situations and in the service system.
Parental empowerment was measured among 955 parents (mothers?=?571; fathers?=?384) of children aged 0-9?years using the Generic Family Empowerment Scale. Family characteristics were assessed through questions on children, parents and the life situation. Associations between empowerment and family characteristics were evaluated using one-way analysis of variance and t-test. Parental empowerment was predicted by multiple linear regression analysis.
Parents' concerns related to their parenting, such as whether they possessed sufficient skills as a parent or losing their temper with children, as well as experiences of stress in everyday life, were negatively associated with all dimensions of maternal and paternal empowerment. Both determinants were more common and more significant in empowerment than child-related problems.
Promoting parental self-confidence and providing appropriate emotional and concrete support for everyday functioning may reinforce parental empowerment, thereby enhancing families' well-being and coping, as well as improving their access to required services and timely support. Finally, it may facilitate the provision of better services to all families.
PubMed ID
26134361 View in PubMed
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Asymptomatic breast cancer in non-participants of the national screening programme in Norway: a confounding factor in evaluation?

https://arctichealth.org/en/permalink/ahliterature128414
Source
J Med Screen. 2012 Dec;19(4):177-83
Publication Type
Article
Date
Dec-2012
Author
Solveig R Hoff
Olbjørn Klepp
Solveig Hofvind
Author Affiliation
Department of Radiology, Aalesund Hospital, Helse Møre og Romsdal HF, NO-6026 Aalesund, Norway. sorohoff@gmail.com
Source
J Med Screen. 2012 Dec;19(4):177-83
Date
Dec-2012
Language
English
Publication Type
Article
Keywords
Aged
Algorithms
Asymptomatic Diseases - epidemiology
Breast Neoplasms - diagnosis - epidemiology
Carcinoma in Situ - diagnosis - epidemiology
Carcinoma, Ductal, Breast - diagnosis - epidemiology
Confounding Factors (Epidemiology)
Early Detection of Cancer
Female
Health Status Indicators
Humans
Mass Screening - methods - statistics & numerical data
Middle Aged
National Health Programs
Norway - epidemiology
Patient Participation - psychology - statistics & numerical data
Prognosis
Abstract
To evaluate the extent and histopathological characteristics of asymptomatic breast cancer detected outside the Norwegian Breast Cancer Screening Program (NBCSP) in women targeted by the programme.
Our study included 568 primary breast cancers (523 invasive and 45 ductal carcinoma in situ) diagnosed in 553 women aged 50-70, residing in Møre og Romsdal County, 2002-2008. The cancers were divided into screening-detected cancers in the NBCSP, interval cancers (ICs) and cancers detected in women not participating in the NBCSP (never participated and lapsed attendees), and further into asymptomatic and symptomatic cancers. Nottingham Prognostic Index (NPI) was used for comparisons across the groups and the distributions were compared using chi-square tests for statistical significance.
Twenty percent (19/97) of the ICs and 32% (69/213) of the breast cancers in non-participants were asymptomatic, with opportunistic screening as the most frequent detection method (42%, 8/19 for ICs and 54%, 37/69 for non-participants). There were no differences in distribution of NPI prognostic categories across subgroups of asymptomatic invasive cancers (screening-detected cancers in the NBCSP, asymptomatic ICs and asymptomatic cancers in non-participants) or between subgroups of symptomatic invasive cancers (symptomatic ICs and symptomatic cancers in non-participants). Asymptomatic cancers had a significantly more favourable distribution of NPI prognostic categories compared with symptomatic cancers (P
PubMed ID
23486698 View in PubMed
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140 records – page 1 of 14.