Emotional Wellbeing in Adolescents Living With Chronic Conditions: A Metasynthesis of the Qualitative Literature
Adolescents; Anxiety; Depression; Mental health; Pediatrics; Positive health assets; Psychological wellbeing; Subjective wellbeing; Suicide; Teen
Adolescents living with chronic conditions (ALWCCs) are at a higher risk of suicide (odds ratio: 4.3) than their peers. No consensus exists in the scientific community on a definition or conceptual elements of emotional well-being in this vulnerable population, hindering informed interventional research. This study investigated the meaning of emotional well-being in ALWCCs. A systematic metasynthesis of the qualitative literature was performed and structured using ENTREQ guidelines for reporting qualitative metasynthesis. A final sample of 11 primary qualitative studies met inclusion criteria and was critically analyzed using a team-based thematic synthesis and reciprocal translation approach. The meaning of emotional well-being in ALWCCs is having positive relationships that ease loss, foster hope and resilience, and promote self-efficacy and self-actualization. The role of healthcare providers as a safe, stable nurturing relationship which promotes hope and positive body image emerges an area for future research. Spirituality as it relates to emotional well-being in this population is scarce in the qualitative literature and should be further explored.
Courtwright SE; Le Pard A; Jones J
Journal of Adolescent Health
2022
<a href="http://doi.org/10.1016/j.jadohealth.2021.12.020" target="_blank" rel="noreferrer noopener">10.1016/j.jadohealth.2021.12.020</a>
Transition to adult care: Experiences and expectations of adolescents with a chronic illness
Adolescent Transitions
Purpose: We hypothesized that adults with CHD are likely to be better adapted to their disease and as likely to have met their adolescent developmental milestones, as adults with acquired heart disease (AHD) of the same organ. Methods: A convenience sample of 25 adults with CHD were surveyed in hospital based outpatient clinics and at CHD conferences in 2003, using a 45 item instrument, the Patient Adjustment to Illness Self Report (PAIS-SR: Derogatis, 1978,1983) It is a standardized, reliable and valid measure, which reflects adolescent milestones. Norms have been established for adults with AHD, but not for adults with CHD. Results: Results were compared with already established norms for acquired adult cardiac patients. CHD patients ranged in age from 22 to 53. In terms of individual scores based on percentiles, the CHD patient’s scores are above the normative midpoint (50th percentile) for Heath Care Orientation and Family Relations. Overall, however, the CHD patients are less well adjusted at the 25th percentile compared to AHD. CHD patients fall substantially below the midpoint on Vocational, Social, and Domestic Environment, as well as Sexual Relations and Psychological Distress, suggesting that the developmental challenges of adolescence have not been met. Variability exists with the standard deviation greater than the mean, and a range from the 1st percentile to above the 99th percentile. Conclusions: The psychosocial needs of CHD patients are not being met and may be masked by their good Extended Family Relations and Health Care Orientation. Individuals who are long-term survivors may find that the previous expectation regarding the terminal nature of the disorder left them unprepared for the transition into adolescence and adulthood. In addition, scarring from surgery in childhood may compromise body image and the associated risk of isolation, because of fear of rejection by potential sexual partners. Normal developmental tasks, such as finding a mate, may also be avoided. Research is needed into how these needs may be met. PII: S1054-
2005
Tuchman L; Slap G; Britto M
Journal Of Adolescent Health
2005
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/10.1016/j.jadohealth.2004.11.068" target="_blank" rel="noreferrer">10.1016/j.jadohealth.2004.11.068</a>
Chronic illness and disability in adolescence
Adolescent Transitions
1992
Blum R
Journal Of Adolescent Health
1992
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/10.1016/1054-139X(92)90029-B" target="_blank" rel="noreferrer">10.1016/1054-139X(92)90029-B</a>
A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
Adolescent; Adult; Advance Care Planning/statistics & Numerical Data; Advance Directives/psychology; Advance Directives/statistics & Numerical Data; Anxiety/complications; Anxiety/psychology; Depression/complications; Depression/psychology; Family; Feasibility Studies; Female; Follow-up Studies; Humans; Longitudinal Studies; Male; Neoplasms/complications; Neoplasms/psychology; Patient Satisfaction/statistics & Numerical Data; Quality Of Life/psychology; Spirituality; Surveys And Questionnaires; United States; Young Adult
Adolescent; Advance Care Planning; Advance Directive; African-american; Cancer; Communication; Decision-making; End Of Life; Family Intervention; Pediatric Palliative Care
To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion.
RESULTS:
Acceptability was demonstrated with enrollment of 72% of eligible families, 100% attendance at all three sessions, 93% retention at 3-month post-intervention, and 100% data completion. Intervention families rated FACE-TC worthwhile (100%), whereas adolescents' ratings increased over time (65%-82%). Adolescents' anxiety decreased significantly from baseline to 3 months post-intervention in both groups (β = -5.6; p = .0212). Low depressive symptom scores and high quality of life scores were maintained by adolescents in both groups. Advance directives were located easily in medical records (100% of FACE-TC adolescents vs. no controls). Oncologists received electronic copies. Total Spirituality scores (β = 8.1; p = .0296) were significantly higher among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when first ill or hospitalized, 25% when dying, and 38% for all of the above.
CONCLUSIONS:
Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability. Courageous adolescents willingly participated in highly structured, in-depth pediatric advance care planning conversations safely.
M.E. Lyon; Wang J
Journal Of Adolescent Health
2014
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).
DOI: 10.1016/j.jadohealth.2013.10.206