Compliance in adolescents with chronic diseases: a review

Abstract

One of the first applications of the term “compliance” to health issues was by Sackett (1Sackett DL. Introduction and the magnitude of compliance and noncompliance. In: Sackett DL, Haynes RB, eds. Compliance With Therapeutic Regimens. Baltimore: Johns Hopkins University Press, 1976:1–25.Google Scholar), and later by Haynes (2Haynes RB. Introduction. In: Haynes RB, Sackett DL, Taylor DW, eds. Compliance in Health Care. Baltimore: Johns Hopkins Press University Press, 1979:1–18.Google Scholar). Haynes defined compliance as “the extent to which a person’s behavior (in terms of taking medication, following diets, or executing life-style changes) coincides with medical or health advice” (pp. 1–2). The term “compliance” itself is laden with connotations of paternalism, cocercion, and acquiescence. Thus, the concept has attracted wide criticism and alternative concepts have been offered (i.e., adherence, cooperation, mutuality, and therapeutic alliance) (3DiMatteo R, DiNicola D. Achieving Patient Compliance: The Psychology of the Medical Practitioner’s Role. Los Angeles, CA: Pergamon General Psychology Series, 1986.Google Scholar, 4Kontz M.M Compliance redefined and implications for home care.Hol Nurs Pract. 1989; 3: 54-56Crossref PubMed Scopus (19) Google Scholar, 5LaGreca A.M Issues in adherence with pediatric regimens.J Pediatr Psychol. 1990; 15: 423-436Crossref Scopus (90) Google Scholar, 6Henneman E.A Lee J.L Cohen J.I Collaboration A concept analysis.J Adv Nurs. 1995; 21: 103-109Crossref PubMed Scopus (283) Google Scholar, 7Cameron C Patient compliance Recognition of factors involved and suggestions for promoting compliance with therapeutic regimens.J Adv Nurs. 1996; 24: 244-250Crossref PubMed Scopus (237) Google Scholar, 8Vivian B Reconceptualizing compliance in home health care.Nurs Forum. 1996; 31: 5-13Crossref PubMed Scopus (10) Google Scholar, 9Henson R.H Analysis of the concept of mutuality.J Nurs Scholarship. 1997; 29: 77-81Google Scholar). In nursing, attempts have been made to reformulate the concept (4Kontz M.M Compliance redefined and implications for home care.Hol Nurs Pract. 1989; 3: 54-56Crossref PubMed Scopus (19) Google Scholar, 10Dracup A Meleis A.J Compliance An interactional approach.Nurs Res. 1982; 31: 31-36Crossref PubMed Google Scholar). Compliance is seen more widely than behavior coinciding with medical advice. Recently, it has been defined as an active, intentional, and responsible process of care, in which the individual works to maintain his or her health in close collaboration with health care personnel (11Hentinen M Kyngäs H Compliance of young diabetic’s with health regimens.J Adv Nurs. 1992; 17: 530-536Crossref PubMed Scopus (37) Google Scholar, 12Kyngäs H Hentinen M Koivukangas P et al.Young diabetics’ compliance in the framework of the MIMIC model.J Adv Nurs. 1996; 24: 997-1005Crossref PubMed Scopus (19) Google Scholar). Instead of simply following medical instructions that are laid out, the individual’s active commitment to care is emphasized. Alternative terms such as “adherence,” “therapeutic alliance,” or “mutuality” have not been used in studies with adolescents to the same extent as they have with the adult population. In this article, “compliance” is chosen because of its wider application. Studies using alternative terminology have been acknowledged and incorporated into this review according to their relevance. The lack of a generally accepted definition of compliance makes difficult attempts to operationalize and measure the concept. As a behavioral concept, compliance involves complex actions, intentions, emotions, and phenomena that may not be directly observable (13Morse J.M Mitcham C Hupcey J.E Tason M.C Criteria for concept evaluation.J Adv Nurs. 1996; 24: 385-390Crossref PubMed Scopus (137) Google Scholar). Of the numerous measures of compliance none appears to be completely reliable and valid. Direct methods such as blood and urine analyses are not relevant because they measure outcomes rather than the process of compliance. Therefore, indirect methods such as interviews are generally used because they have the advantage of revealing the individual’s own assessment of their compliance (14Cramer JA. Overview of methods to measure and enhance patient compliance. In: Cramer JA, Spliker B, eds. Patient Compliance in Medical Practice and Clinical Trials. New York: Raven Press, 1991:3–11.Google Scholar, 15Spliker B. Methods of assessing and improving patient compliance in clinical trials. In: Cramer, JA, Spliker B, eds. Patient Compliance in Medical Practice and Clinical Trials. New York: Raven Press, 1991;37–56.Google Scholar). Assessment by nurses and physicians has usually been based on either the outcome of compliance or information obtained in interviews. Self-report measures are the most commonly used to evaluate the compliance of adolescents with chronic disease (16Dunbar-Jacob J, Burke LE, Puczynski S. Clinical assessment and management of adherence to medical regimens. In: Nicassio M, Smith T, eds. Managing Chronic Illness: A Biopsychosocial Perspective. Washington, DC: American Psychological Association, 1995:313–41.Google Scholar). Reasons for their popularity can be seen in easy applicability and low costs. Adolescence is a period of transition from dependence to independence, when adolescents begin to adopt a multitude of new social and emotional roles and learn to cope with altered bodily functions. Adolescents with a chronic illness are constantly struggling with independence. At the same time, their illnesses often keep them tied physically, emotionally, and financially to their families. This transition period is vital to maintain self-esteem and confidence (17Oerter R, Dreher E. Jugendalter. In: Oerter R, Montada L, eds. Entwicklungspsychologie, 3rd rev. ed. Weinheim: PVU, 1995:311–95.Google Scholar). The chronic disease itself [e.g., juvenile rheumatoid arthritis (JRA)] or treatment (e.g., steroids, radiation therapy) may interfere with the normal growth process. Also, muscle strength and sexual maturation may be delayed as a consequence of the treatment. At the same time, physical attractiveness becomes increasingly important for the adolescent (18Seiffge-Krenke I. Gesundheitspsychologie des Jugendalters. Göttingen: Hogrefe, 1994.Google Scholar). In particular, adolescents with visible changes of their physical appearance seem to be at a heightened risk for social adjustment difficulties, a problem exacerbated by society’s focus on physical attractiveness (19Varni J.W Katz E.R Colegrovejr R Dolgin M The impact of social skills training on the adjustment of children with newly diagnosed cancer.J Ped Psychol. 1993; 6: 751-767Crossref Scopus (134) Google Scholar). Adolescents with a chronic illness are forced to consider the limitations resulting from their illness (20Seiffge-Krenke I. Health related behaviour and coping with illness in adolescence: A cross-cultural perspective. Theoretical and applied aspects of health psychology. In: Schmidt LR, Schwenknezer P, Weinman J, et al., eds. Theoretical and Applied Aspects of Health Psychology. New York, Harwood Academic, 1990:267–79.Google Scholar, 21Wysocki T Hough B.S Ward K.M et al.Diabetes mellitus in the transition to adulthood Adjustment, self-care, and health status.Dev Behav Paediatr. 1992; 13: 194-201Crossref PubMed Google Scholar). For example, diabetes, asthma, epilepsy, and JRA influence many aspects of daily life and require a lifelong process of self-care. One important aspect of an adolescent’s life is becoming part of a peer group (21Wysocki T Hough B.S Ward K.M et al.Diabetes mellitus in the transition to adulthood Adjustment, self-care, and health status.Dev Behav Paediatr. 1992; 13: 194-201Crossref PubMed Google Scholar). The peer group assumes that all of its members behave in the same way and follow the groups’ rules. If the lifestyle recommended to adolescents with a chronic disease does not fit that of their peers, it may be difficult for them to feel part of this group. Chronic illness and daily treatment regimens have negative implications for peer relationships owing to functional limitations, frequent interruptions of daily activities by treatment requirements, changed physical appearance, and altered lifestyle (5LaGreca A.M Issues in adherence with pediatric regimens.J Pediatr Psychol. 1990; 15: 423-436Crossref Scopus (90) Google Scholar). These changes may evoke feelings of being different and lead to a temporary social withdrawal entailing a social development contrary to cohesive peer relationships. Initially, health research in adolescence was limited to life-threatening and substantially disabling conditions. More research has shifted toward chronic illnesses which can be better controlled medically, including asthma and diabetes (22Seiffge-Krenke I. Chronisch kranke Jugendliche und ihre Familien: Belastung, Bewältigung und psychosoziale Folgen. Stuttgart: Kohlhammer, 1996.Google Scholar). Based on a review of two meta-analyses (23Seiffge-Krenke I, Brath, K. Krankheitsverarbeitung bei Kindern und Jugendlichen. Forschungstrends und Ergebnisse. In: Seiffge-Krenke I, ed. Krankheitsverarbeitung bei Kindern und Jugendlichen. Jahrbuch der Medizinischen Psychologie, Vol. 4. Berlin: Springer, 1990:3–22.Google Scholar, 24Hanl J. Bewältigung chronischer Krankheiten im Jugendalter. Diplomarbeit am Psychologischen Institut der Universität Bonn, 1995.Google Scholar), Seiffge-Krenke (22Seiffge-Krenke I. Chronisch kranke Jugendliche und ihre Familien: Belastung, Bewältigung und psychosoziale Folgen. Stuttgart: Kohlhammer, 1996.Google Scholar) concluded that the number of empirical publications is rather small. Moreover, most of the studies show significant methodological flaws. The purposes of this article are to discuss the factors that affect compliance in adolescents with a chronic disease and to summarize the results from intervention studies aimed at increasing compliance. Four diseases—asthma, type 1 diabetes mellitus, arthritis, and epilepsy—have been selected since they share the features of an unpredictable course, necessary behavioral adjustments, long-term dependency on treatment, and a high commitment to self-management strategies. The term “chronic illness” refers to an illness or a handicap that is medically long-term and requires at least 6 months of continuous medical care (25Eiser C Psychological effects of chronic disease.J Child Psychol Psychiatry. 1990; 31: 434-450Crossref Scopus (181) Google Scholar). Perrin et al. (26Perrin E.C Newacheck P Pless B et al.Issues involved in the definition and classification of chronic health conditions.Pediatrics. 1993; 91: 787-793PubMed Google Scholar) suggested that the requirement for continuous care be extended to 12 months because the time of onset may be unknown, diagnosis may occur long after the initial symptoms appears (e.g., JRA), or a recurrent acute illness may be confused with a chronic disease. Chronic illnesses permanently change a person’s lifestyle and require continuous adaptation. Chronicity is characterized by its unpredictable disease course; reduced physical performance/ability; changes in physical appearance; prolonged dependence on medical specialists, treatments, technical aids, and physical assistance; and changes in life’s prospects (27Petermann F, Kroll T. Psychische Bewältigung chronischer Krankheiten. In: Kolip P, Hurrelmann K, Schnabel P-E, eds. Jugend und Gesundheit: Interventionsfelder und Präventionsbereiche. Weinheim: Juventa, 1995:213–233.Google Scholar). Chronic disease and its treatments place extensive behavioral demands on adolescents. The need for precisely scheduled daily medications, consumption of special dietary products, regular physical exercise, regular visits to health care providers, and monitoring of blood glucose levels are some of the demands. Asthma attacks, periods of intense pain, seizures, immobility, and the management of unpredictable situations aggravate the situation. These demands invade nearly every aspect of adolescents’ lives, including school, eating, sports, work, travel, and dating (21Wysocki T Hough B.S Ward K.M et al.Diabetes mellitus in the transition to adulthood Adjustment, self-care, and health status.Dev Behav Paediatr. 1992; 13: 194-201Crossref PubMed Google Scholar, 28Burroughs T.E Pontious S.L Santiago J.V The relationship among six psychosocial domains, age, health care adherence, and metabolic control in adolescents with IDDM.Diab Educ. 1993; 19: 396-402Crossref PubMed Scopus (41) Google Scholar). Hence, problems related to caring for oneself are common among chronically ill adolescents. Lack of compliance is a major problem. 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Acta Universitatis Ouluensis Medica D 352, Oulu, Oulun yliopisto, Monistus–ja kuvakeskus, 1995.Google Scholar• Strict control, negative feedbackHinder compliance78Chaney J.M Peterson L Family variables and disease management in juvenile rheumatoid arthritis.J Pediatr Psychol. 1989; 14: 389-403Crossref PubMed Scopus (49) Google ScholarAction of peersSupport compliance12Kyngäs H Hentinen M Koivukangas P et al.Young diabetics’ compliance in the framework of the MIMIC model.J Adv Nurs. 1996; 24: 997-1005Crossref PubMed Scopus (19) Google Scholar, 69Shillitoe R, Christie M. Psychological approaches to the management of chronic illness: The example of diabetes mellitus. In: Bennett P, Weinman J, Spurgeon P, eds. Current Developments in Health Psychology. 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