How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
Adolescent; Adolescent Behavior/psychology; advance care planning; Attitude to Death; Critical Illness/*psychology; Female; Humans; literature; literature and medicine; Male; Medicine in Literature; Modern; narrative ethics; narrative medicine; paediatrics; Terminal Care/*psychology
Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent's preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.
Kirkman A O; Hartsock J A; Torke A M
Medical Humanities
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/medhum-2017-011400" target="_blank" rel="noreferrer noopener">10.1136/medhum-2017-011400</a>
Missed opportunities-adolescents with a chronic condition (insulin-dependent diabetes mellitus) describe their cigarette-smoking trajectories and consider health risks
Female; Humans; Male; Adult; Attitude to Health; Parents; Interviews as Topic; Peer Group; adolescent; Adolescent Transitions; Chronic disease; Adolescent Behavior/psychology; Diabetes Mellitus; Type 1/psychology; Smoking Cessation/psychology; Smoking/adverse effects/prevention & control/psychology; Tobacco Use Disorder/psychology
AIM: To enhance our knowledge on why adolescents with a chronic condition (insulin-dependent diabetes mellitus, IDDM) choose to smoke despite possible awareness of health risks. METHODS: Twelve patients aged 15-20 with IDDM who smoked cigarettes volunteered to participate in qualitative interviews. The results were analyzed with content analysis according to Miles and Huberman 1994. RESULTS: One set confirmed what is earlier known on cigarette smoking among adolescents, such as plain exploring, needs to conform with group norms, identity needs and denial of risks. Other themes gave new insights. One was the emotional attitudes-or lack of emotions-expressed by important others, which exerted strong influences on the smoking trajectories. These emotions affected both initiation and motivation for quitting cigarette smoking and seemed crucial as means of meaningful communications concerning smoking. One theme was a flow path of cigarette smoking, which demonstrated opportunities for secondary prevention. Finally, developmental reasons for smoking and motivation for quitting could be described. CONCLUSIONS: There are several windows of opportunities to lower the risk of adolescents with IDDM and other chronic conditions from becoming and remaining smokers, as reported by young people themselves.
2007
Regber S; Kelly KB
Acta Paediatrica
2007
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Journal Article
<a href="http://doi.org/10.1111/j.1651-2227.2007.00566.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2007.00566.x</a>
Predictors of good adherence of adolescents with diabetes (insulin-dependent diabetes mellitus)
Female; Humans; Male; Physician-Patient Relations; Attitude to Health; Logistic Models; Questionnaires; Nurse-Patient Relations; adolescent; Adolescent Transitions; Chronic disease; social support; Adolescent Behavior/psychology; Diabetes Mellitus; Patient Compliance/psychology; Self Care/psychology; Type 1/psychology/therapy
OBJECTIVES: The purpose of this study was to identify the factors that predict good adherence to health regimens by adolescents with diabetes (insulin-dependent diabetes mellitus). METHODS: Altogether, 300 individuals aged 13-17 years were randomly selected from the Finnish Social Insurance Institution's register. Ninety-seven per cent (N=289) of the selected adolescents returned the questionnaire. The data were analysed using the SPSS (Statistical Package for Social Sciences) for Windows software package. Logistic regression was used to find the factors that predict good adherence to health regimens. RESULTS: About one-fifth (19%) of the respondents with diabetes felt that they complied fully with the health regimens, while 75% placed themselves in the category of satisfactory adherence, and the remaining 6% reported poor adherence. The most powerful predictor was the threat to mental wellbeing. The likelihood that adolescents who felt the disease to be a threat to their mental wellbeing would comply with health regimens was 7.68-fold as compared to those who did not regard the disease as a threat to their mental wellbeing. The next most powerful predictor was support from physician. The support from nurses, and the motivation, energy and willpower to take care of themselves and the threat to physical wellbeing, also predicted good adherence. The logistic regression model explained 82% of the variance, and the model predicted correctly 88% of the adolescents with good adherence. DISCUSSION: This paper shows that adolescents with diabetes show quite good adherence. It also indicates the factors that predict good adherence to health regimens. To improve adherence, these factors should be given special attention in the care of adolescents.
2007
Kyngas HA
Chronic Illness
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1742395307079191" target="_blank" rel="noreferrer">10.1177/1742395307079191</a>
Adolescent development in interpersonal and societal contexts
Female; Humans; Male; Parent-Child Relations; Interpersonal Relations; Peer Group; Sibling Relations; Social Environment; Love; adolescent; Family/psychology; Adolescent Transitions; Social Behavior; Adolescent Behavior/psychology; Intergenerational Relations
In this chapter we review theoretical and empirical advances in research on adolescent development in interpersonal and societal contexts. First, we identify several trends in current research, including the current emphasis on ecological models and the focus on diversity in and relational models of adolescent development. Next, we discuss recent research on interpersonal relationships, with an eye toward identifying major research themes and findings. Research on adolescents' relationships with parents, siblings, other relatives, peers, and romantic partners, and adolescents' involvement in community and society is reviewed. Future directions in research on adolescent development are discussed.
2006
Smetana JG; Campione-Barr N; Metzger A
Annual Review Of Psychology
2006
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Journal Article
<a href="http://doi.org/10.1146/annurev.psych.57.102904.190124" target="_blank" rel="noreferrer">10.1146/annurev.psych.57.102904.190124</a>
Treatment adherence of youth and young adults with and without a chronic illness
Child; Female; Humans; Male; Adolescent Psychology; Adult; Questionnaires; Age Factors; Needs Assessment; Mental Health; Internal-External Control; Predictive Value of Tests; Case-Control Studies; Practice; adolescent; Adaptation; Psychological; Attitudes; Health Knowledge; Adolescent Behavior/psychology; Chronic Disease/psychology; Patient Education; Acute Disease/psychology; Patient Compliance/psychology; Self Care/psychology
The present study was undertaken to explore the psychosocial functioning of young people with chronic illness, their beliefs about treatment adherence, difficulties with adherence and concerns about living with their illness. A small correlational study was undertaken to compare the psychosocial functioning of young people, with and without chronic illness, aged between 12 and 24 years. Subjects were recruited from a metropolitan teaching hospital. Group 1 included 44 young people with chronic illness; Group 2 included 41 young people without chronic illness. Both groups were divided on the basis of age: younger (12-18 years, n = 24); older (19-24 years, n = 61) and sex (female = 43; male = 42). Subjects completed the Achenbach self-report questionnaire as a measure of psychosocial functioning, and a second questionnaire constructed for this study to explore treatment adherence. Psychosocial functioning scores were found to be similar on the majority of subscales. Young women with chronic illness were, however, found to have significantly higher internalizing scores than young women without chronic illness. A significant negative relationship was found for the chronic illness group between internalizing scores and treatment adherence. The findings highlight potential areas of difficulty in psychosocial functioning of some young people with chronic illness. They also suggest the existence of a subgroup of young people with chronic illness who experience more problems than their peers. More research is needed to generate evidence about this possible subgroup to determine predictors of psychosocial functioning and test the timing and efficacy of psychosocial interventions.
2003
Rosina R; Crisp J; Steinbeck K
Nursing & Health Sciences
2003
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Journal Article
<a href="http://doi.org/10.1046/j.1442-2018.2003.00149.x" target="_blank" rel="noreferrer">10.1046/j.1442-2018.2003.00149.x</a>
Causal links between stressful events, coping style, and adolescent symptomatology
Female; Humans; Male; Follow-Up Studies; Prospective Studies; Life Change Events; Stress; adolescent; Adaptation; Psychological; Psychological/psychology; Adolescent Behavior/psychology
In a longitudinal study, the causal links between different types of stressors, coping styles and adolescent symptomatology were investigated. A total of 94 adolescents and their mothers participated in three annual assessments of critical life events, daily stressors and coping styles. The longitudinal associations between life events, everyday stressors, a dysfunctional coping style and symptomatology were analyzed via a path-analytic model. Critical life events and daily stressors were found to be strongly related over time; however, the type of stressor was not consistently linked with adolescent symptomatology. In contrast, withdrawal, a form of avoidant coping, emerged as a significant predictor of adolescent symptomatology across all times. Further, emotional and behavioral problems led to a time-lagged increase in withdrawal, creating a vicious circle. The results are discussed with reference to the coping-skill deficit model.
2000
Seiffge-Krenke I
Journal Of Adolescence
2000
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Journal Article
<a href="http://doi.org/10.1006/jado.2000.0352" target="_blank" rel="noreferrer">10.1006/jado.2000.0352</a>
The determinants of health care seeking behaviour of adolescents attending STD clinics in South Africa
Female; Humans; Male; Adult; Attitude to Health; Patient Acceptance of Health Care; adolescent; Adolescent Health Services/utilization; Adolescent Behavior/psychology; Ambulatory Care Facilities; Sexually Transmitted Diseases/prevention & control/therapy; South Africa
The study investigated the determinants of delay behaviour in health care seeking in a sample of 292 adolescent patients (20 years and younger) with STD symptoms. Fifty six percent (56%) of the adolescents sought health care within the first 6 days of noticing symptoms, 23% waited between 7 to 10 days and 21% waited longer than 10 days before seeking health care. Early health care seeking was determined by perceived seriousness of STDs, an absence of self treatment prior to seeking care and positive attitudes regarding personal autonomy in condom use behaviour. Facilitation of early health care seeking remain critical in curbing the threat of AIDS among the South African youth.
2000
Meyer-Weitz A; Reddy P; Van Den Borne HW; Kok G; Pietersen J
Journal Of Adolescence
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1006/jado.2000.0356" target="_blank" rel="noreferrer">10.1006/jado.2000.0356</a>
Non-compliance in adolescents with chronic lung disease: causative factors and practical approach
Female; Humans; Family Relations; adolescent; Chronic disease; Cystic Fibrosis/therapy; Adolescent Behavior/psychology; Treatment Refusal/psychology; Asthma/therapy; Lung Diseases/therapy; Respiratory Insufficiency/therapy
Compliance with medical therapies may be considered a challenge in many age groups but especially so in adolescence. The adolescent patient with chronic lung disease may struggle to progress smoothly through the phases of adolescence because of fears of peer rejection and isolation occurring as a result of social, emotional and physical consequences of their underlying lung disease and its treatment. Non-compliance can be viewed as a scale from episodic compliance to frequent compliance with patients moving between ends of the spectrum. Health professionals need to consider the likely degree of compliance with therapies that they recommend, discuss the issue of compliance and the consequences of non-compliance with the adolescent patient and arrive at a workable compromise. This article discusses persistent asthma, cystic fibrosis and advanced neuromuscular disease to illustrate practical approaches to enhancing patient compliance in adolescence.
2001
Fitzgerald D
Paediatric Respiratory Reviews
2001
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Journal Article
<a href="http://doi.org/10.1053/prrv.2001.0149" target="_blank" rel="noreferrer">10.1053/prrv.2001.0149</a>
Support as a crucial predictor of good compliance of adolescents with a chronic disease
Female; Humans; Male; Physician-Patient Relations; Interpersonal Relations; Logistic Models; Questionnaires; Nurse-Patient Relations; Finland; Predictive Value of Tests; Motivation; adolescent; Arthritis; Family/psychology; Adolescent Transitions; social support; Adolescent Behavior/psychology; Diabetes Mellitus; Chronic Disease/psychology/therapy; Adolescent Psychology/statistics & numerical data; Asthma/prevention & control/psychology; Epilepsy/prevention & control/psychology; Juvenile Rheumatoid/prevention & control/psychology; Patient Compliance/psychology/statistics & numerical data; Type 1/prevention & control/psychology
The purpose of this study was to describe the factors that predict compliance among adolescents with a chronic illness. The data were collected by questionnaires from adolescents with asthma, epilepsy, juvenile rheumatoid arthritis (JRA) and insulin-dependent diabetes mellitus (IDDM). Groups of 300 adolescents with these illnesses were selected from the Finnish Social Insurance Institution's register, giving a total study series of 1200 individuals. The final response percentage was 88% (n = 1061). The data were analysed with the SPSS software. Logistic regression was used to indicate the predictors of good compliance. The compliance of adolescents with a chronic disease was predicted on the basis of support from parents, nurses, physicians and friends, as well as motivation, energy and willpower. The most powerful predictor was support from nurses. The likelihood of adolescents supported by nurses complying with health regimens was 7.28-fold compared to the adolescents who did not receive support from nurses. The next powerful predictor was energy and willpower. Adolescents who had the energy and willpower to take care of themselves complied with health regimens with a 6.69-fold likelihood compared to the adolescents who did not have energy and willpower. Adolescents who had good motivation were 5.28 times more likely to comply than the adolescents who did not have motivation. Support from parents, physicians and friends similarly predicted good compliance with health regimens.
2001
Kyngas H; Rissanen M
Journal Of Clinical Nursing
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2702.2001.00538.x" target="_blank" rel="noreferrer">10.1111/j.1365-2702.2001.00538.x</a>