scholarly journals “This Is the First Time I've Talked About This”: Considerations When Conducting Qualitative Research Interviews with Adolescents and Young Adults with Cancer

Author(s):  
Jane P. Davies ◽  
Brittany C. McGill ◽  
Ursula M. Sansom-Daly ◽  
Claire E. Wakefield ◽  
Daniel M. Kelly
2021 ◽  
Vol 20 ◽  
pp. 160940692199687
Author(s):  
Courtney A. Brown ◽  
Anna C. Revette ◽  
Sarah D. de Ferranti ◽  
Holly B. Fontenot ◽  
Holly C. Gooding

This methodologic paper aims to update researchers working with adolescents and young adults on the potentials and pitfalls associated with web-based qualitative research. We present a case study of synchronous web-based focus groups with 35 adolescents and young women ages 15–24 years old recruited from a clinical sample for a mixed methods study of heart disease awareness. We contrast this with two other studies, one using asynchronous web-based focus groups with 30 transgender youth ages 13 to 24 years old and another using synchronous web-based focus groups with 48 young men who have sex with men ages 18 to 26 years old, both recruited via social media. We describe general and logistical considerations, technical platform considerations, and ethical, regulatory, and research considerations associated with web-based qualitative research. In an era of technology ubiquity and dependence, researchers should consider web-based focus groups a potential qualitative research tool, especially when working with youth.


2015 ◽  
Vol 26 (3) ◽  
pp. 415-425 ◽  
Author(s):  
Morten Schrøder ◽  
Kirsten A. Boisen ◽  
Jesper Reimers ◽  
Grete Teilmann ◽  
Jesper Brok

AbstractPurposeWe performed a systematic review and meta-analysis of observational studies assessing quality of life in adolescents and young adults born with CHD compared with age-matched controls.MethodsWe carried out a systematic search of the literature published in Medline, Embase, PsychINFO, and the Cochrane Library’s Database (1990–2013); two authors independently extracted data from the included studies. We used the Newcastle–Ottawa scale for quality assessment of studies. A random effects meta-analysis model was used. Heterogeneity was assessed using the I2-test.ResultsWe included 18 studies with 1786 patients. The studies were of acceptable-to-good quality. The meta-analysis of six studies on quality of life showed no significant difference – mean difference: −1.31; 95% confidence intervals: −6.51 to +3.89, I2=90.9% – between adolescents and young adults with CHD and controls. Similar results were found in 10 studies not eligible for the meta-analysis. In subdomains, it seems that patients had reduced physical quality of life; however, social functioning was comparable or better compared with controls.ConclusionFor the first time in a meta-analysis, we have shown that quality of life in adolescents and young adults with CHD is not reduced when compared with age-matched controls.


2018 ◽  
Author(s):  
Jac Kee Low ◽  
Elizabeth Manias

BACKGROUND With the large amount of material that is readily available on the internet, there are endless opportunities for electronic health–literate patients to obtain and learn new information. Although novel, a Web- or mobile-based program can be a powerful way to engage adolescents and young adults (AYAs). The ongoing engagement of AYAs with chronic disease is vital not only to empower them but also to ensure a smooth transition from pediatric to adult health care. OBJECTIVE This study aimed to evaluate the current evidence on Web- or mobile-based interventions designed for AYAs. METHODS This review was registered with PROSPERO: CRD42018096487. A systematic search of MEDLINE Complete, EMBASE, and CINAHL Complete was conducted on April 10, 2019, for studies that examined the perspectives of transition-age patients about technology-based interventions, the process involved in intervention development, or the evaluation of intervention efficacy. For each study, the comprehensiveness of reporting was appraised. The Downs and Black checklist was used for intervention efficacy trials, the Standards for Reporting Qualitative Research checklist was used for qualitative work, and a 16-item tool developed by Tong et al was used for questionnaire research. RESULTS The search uncovered 29 relevant studies, which included qualitative studies (n=14), intervention efficacy studies (n=7), questionnaire studies (n=4), mixed qualitative and questionnaire studies (n=2), and a mixed qualitative and pilot randomized controlled trial study (n=1). The reporting comprehensiveness score of questionnaires was rated considerably lower (n=6, 13%-57% [2/16-8/14]) than the scores of intervention efficacy trials (n=8, 48%-85% [13/27-23/27]) and qualitative research (n=17, 40%-93% [8.5/21-19.5/21]). AYAs were receptive to obtaining information via a website or mobile app. An intervention was more likely to be perceived as useful by AYAs when there was a concerted effort to involve AYAs and subject matter experts in the process of intervention design, as opposed to relying solely on the AYAs or the experts alone. The preferred medium of intervention delivery varied greatly for AYAs, ranging from static text to audiovisual materials. However, AYAs considered being concise was the most important aspect. Across different conditions, AYAs were interested in receiving information on diverse topics, such as anxiety and stress management, dealing with insurance, and having social relationships. Patients also requested for disease-specific information, such as weather forecasts and pollen levels for patients with asthma and information related to the pretransplant period for organ transplant recipients. Meta-analyses showed no significant group differences across time on quality of life, self-efficacy, and self-management. CONCLUSIONS Owing to the lack of intervention efficacy trials, no conclusion can be drawn if an intervention delivered via a mobile app is better than that delivered via a website. However, through this systematic review, it is confirmed that AYAs were receptive to receiving medical information electronically.


2018 ◽  
Vol 2018 ◽  
pp. 1-8 ◽  
Author(s):  
Tarek Owaidah ◽  
Mahasen Saleh ◽  
Hazzah Alzahrani ◽  
Mahmood Abu-Riash ◽  
Ali Al Zahrani ◽  
...  

Background.Bleeding disorders vary in prevalence. While some are rare, some can be common in both sexes. Most bleeding disorders manifest as chronic bleeding tendencies or as an increase in bleeding during surgical procedures or trauma. The consequences of bleeding can be as simple as iron deficiency or catastrophic, resulting in severe morbidity and mortality. Bleeding disorders typically affect both sexes except hemophilia A and B, which mainly affects males.Method.We conducted a questionnaire-based survey among adolescents and young adults (1901[49%]boys, 1980[51%]girls) in Riyadh city regarding bleeding symptoms. Of these, 1849 (47.6%) responded “Yes/Positive” for at least one question about the bleeding symptoms.Results.The most common bleeding symptom was epistaxis (19.7% of the sample population) detected in Phase I of the study. A tandem survey was conducted among 525 adolescents who had responded “Yes/Positive” to any one of the questions inquiring about bleeding symptoms.Conclusion.In this study, we report for the first time the prevalence of bleeding symptoms in a representative sample of Saudi adolescents and young adults.


2000 ◽  
Vol 32 (4) ◽  
pp. 495-512 ◽  
Author(s):  
WILLIAM K. A. AGYEI ◽  
RICHARD B. BIRITWUM ◽  
A. G. ASHITEY ◽  
ROBERT B. HILL

A fertility survey of unmarried adolescents and young adults (953 males and 829 females) in Greater Accra and Eastern regions of Ghana revealed that a substantial proportion of the respondents were sexually experienced. Overall, 66·8% of the males and 78·4% of the females were sexually experienced. The mean ages (±SD) of the males and females were 15·5±2·5 and 16·2±2·0 years, respectively. Most respondents claimed to have received adequate information on reproductive health and sexually transmitted diseases (STDs), including AIDS. However, 20% and 30% of the respondents in peri-urban and rural areas, respectively, did not know that a girl could get pregnant the first time she has sexual intercourse. The incidence of pregnancy among the unmarried female respondents was relatively high (37%), and was higher in urban than in rural areas. Approximately 47% of those who had ever been pregnant reported that they had had an abortion. Levels of contraceptive awareness were high (98·2% among males and 95·5% among females) but many still engaged in unprotected sexual relations. The most commonly used methods were the condom and the pill. The main reasons given for non-use were that they did not think about contraception, were concerned about the safety of contraceptives, and partner objection. These findings point to the need for targeting of unmarried adolescents and young adults with information on reproductive health and family planning to increase their awareness of the risks of pregnancy, STDs and HIV infection.


Author(s):  
Marc Allroggen ◽  
Peter Rehmann ◽  
Eva Schürch ◽  
Carolyn C. Morf ◽  
Michael Kölch

Abstract.Narcissism is seen as a multidimensional construct that consists of two manifestations: grandiose and vulnerable narcissism. In order to define these two manifestations, their relationship to personality factors has increasingly become of interest. However, so far no studies have considered the relationship between different phenotypes of narcissism and personality factors in adolescents. Method: In a cross-sectional study, we examine a group of adolescents (n = 98; average age 16.77 years; 23.5 % female) with regard to the relationship between Big Five personality factors and pathological narcissism using self-report instruments. This group is compared to a group of young adults (n = 38; average age 19.69 years; 25.6 % female). Results: Grandiose narcissism is primarily related to low Agreeableness and Extraversion, vulnerable narcissism to Neuroticism. We do not find differences between adolescents and young adults concerning the relationship between grandiose and vulnerable narcissism and personality traits. Discussion: Vulnerable and grandiose narcissism can be well differentiated in adolescents, and the pattern does not show substantial differences compared to young adults.


Crisis ◽  
2009 ◽  
Vol 30 (3) ◽  
pp. 115-119 ◽  
Author(s):  
Stephanie De Munck ◽  
Gwendolyn Portzky ◽  
Kees Van Heeringen

Background: Notwithstanding the epidemiological studies indicating an increased risk of attempted suicide among adolescents and young adults, there is a scarcity of international studies that examine long-term epidemiological trends in rates and characteristics of this vulnerable group. Aims: This article describes the results of a 9-year monitoring study of suicide attempts in adolescents and young adults referred to the Accident and Emergency Department of the Gent University Hospital (Belgium). Methods: Between January 1996 and December 2004, trends, sociodemographic, and methodrelated characteristics of suicide attempts were assessed by a psychiatrist on data sheets. Results: Attempted suicide rates declined from 1996 to 2001 and then rose until 2004, but did not exceed previous rates. During the 9 years of monitoring, there was a preponderance of female suicide attempters, except for 1997. Rates of attempts and of fatal suicide were negatively correlated. Significantly more males than females deliberately injured themselves. Younger attempters, especially females, significantly more often poisoned themselves with analgesics. In nearly one in five attempts, alcohol was used in combination with other methods, and alcohol intake was more commonly observed in older suicide attempters. Nearly half of the adolescents were identified as repeaters. Conclusions: The results of this study warrant further monitoring of trends and characteristics of young suicide attempters.


2017 ◽  
Vol 33 (2) ◽  
pp. 123-128 ◽  
Author(s):  
Anne van Alebeek ◽  
Paul T. van der Heijden ◽  
Christel Hessels ◽  
Melissa S.Y. Thong ◽  
Marcel van Aken

Abstract. One of the most common personality disorders among adolescents and young adults is the Borderline Personality Disorder (BPD). The objective of current study was to assess three questionnaires that can reliably screen for BPD in adolescents and young adults (N = 53): the McLean Screening Instrument for BPD (MSI-BPD; Zanarini et al., 2003 ), the Personality Diagnostic Questionnaire 4th edition – BPD scale (PDQ-4 BPD; Hyler, 1994 ), and the SCID-II Patient Questionnaire – BPD scale (SCID-II-PQ BPD). The nine criteria of BPD according to the Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV; APA, 1994 ) were measured with the Structural Clinical Interview for DSM-IV Axis II disorders – BPD scale (SCID-II; First, Spitzer, Gibbon, Williams, & Benjamin, 1995 ). Correlations between the questionnaires and the SCID-II were calculated. In addition, the sensitivity and specificity of the questionnaires were tested. All instruments predicted the BPD diagnosis equally well.


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