Chronically Ill Adolescents\u27 Involvement in Health Treatment Decision Making

The purposes of this study were to explore preferences for involvement of chronically ill adolescents in health treatment decision-making; describe, explain and predict relationships and differences in self-confidence in decision-making between older and younger chronically ill adolescents; and explore relationships between severity of symptoms and self-confidence in health treatment decision-making among chronically ill adolescents. Ten to twenty million American children have some type of chronic illnesses with 90% survival to adulthood. There is lack of current literature on adolescent preferences for involvement in health care decisions. Courts and legislators assume that minors lack the requisite capacity for information, and lack competence to make health care decisions. From a cross sectional research design, descriptive and inferential statistical analysis explored the research questions/hypothesis using SPSS version 11.0. A methodological triangulation was used to ensure corroboration of data and for complementarity. Eighty participants, 20 from each of the four chronic health conditions; cystic fibrosis, asthma, sickle cell, and leukemia were included. Upon USD-IRB and LLUMC-IRB, LLUMC-NRC and CSUSB approval, convenience samples from LLUMC Health Care that met the inclusion criteria were invited to participate with the help of the primary investigator. The researcher made initial contact with the family through the information letter to invite them join this research study. Upon their consent, the researcher made an appointment to meet with them one hour before their clinic appointment for signing of the informed consent and assent before survey questionnaires were administered. Ninety percent completed survey at the clinic while the 10% finished at home and mailed back or collected by the researcher. The study was limited to chronically ill adolescents 14 to 19 years old who spoke English at a 5th grade level. All the participants were patients at LLUMC health care and specialty clinics. Five instruments were used for data collection: (1) Adolescent Decision Making Questionnaire (ADMQ) to measure decision-making with .67 internal consistency for validity; (2) Problem Solving Inventory Form-A (PSI) to measure self-confidence has internal consistency of .72 to .90; (3) Coping Skills Inventory (CSI) to measure coping patterns has reliability ranging from.79 to .90; (4) (DK-PSDM) Deber-Kraetschmer Problem Solving Decision Making scale as a measure for preferences for involvement with Cronbach Alpha .71 to .90 reliability; and (5) Memorial Symptom Assessment Scale 10-18 (MSAS) as a measure for symptom severity with internal consistency of .70. Results revealed that chronically ill adolescents desire involvement in decisions made for their care; that adolescents have high coping ability and self-confidence in decision-making even in stressful situations. Gender, diagnosis, and severity of symptoms did not contribute to the self­ confidence of chronically ill adolescents. Overtime, coping ability contributed to self-confidence in decision-making. There were no significant differences in self-confidence in decision-making between younger and older chronically ill adolescents. Comparisons between variables and core perspectives revealed chronically ill adolescents\u27 achieving for involvement in health treatment decision-making significant for evidence-based practice. Results imply a paradigm shift in health policy to regulate involvement of chronically ill adolescents in health treatment decision-making. Results imply awareness among health care providers of the chronically ill adolescents\u27 preference to have a voice for oneself in health treatment decision-making. Having a voice reinforces self-actualization among chronically ill adolescents as a part of their maturation process