Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology. Understanding the quality of life for parents and their children who have asthma: family resources and challenges. Contemporary Family Therapy. Gerson R. The family life cycle: Phases, stages, and crises. Integrating family therapy. Grey M. Coping and psychological adjustment in mothers of young children with type 1 diabetes. Children's Health Care. Risk and resistance factors for psychological distress in icelandic parents of chronically ill children: an application of Wallander and Varni's Disability-Stress-Coping Model.
Journal of Clinical Psychology in Medical Settings. Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas: the PRINTO multinational quality of life cohort study. Rheumatology Oxford. Journal of Early Intervention. Hidden consequences of success in pediatrics: parental health-related quality of life-results from the Care Project. Arthritis Care and Research Hoboken. Brno: MSD; Health and Quality of Life Outcomes. Quality of life in chronic illness: children, parents and paediatricians have different, but stable perceptions.
Acta Paediatrica. Pediatric Diabetes. Journal of Pediatric Psychology. Family assessment: resiliency, coping and adaptation - Inventories for research and practice. Wisconsin: University of Wisconsin system Publishers; Such patients also reported more absences from school and more performance problems, and their participation in social activities with friends Coping with Illness in Adolescence 15 and family was limited. A positive relationship has also been found to exist between illness severity and poor psychological adjustment or poor coping in asthma patients MacLean et al. Illness Duration The duration of the illness represents an additional factor that may influence coping behavior.
Unfortunately, because of the lack of longitudinal studies, this claim cannot be unequivocally confirmed. Although medical adaptation has frequently been assessed by using measures of illness severity for example, the frequency of asthma attacks in asthma patients or the quality of metabolic control in diabetic patients , most studies have not considered illness duration. Similar relationships probably also apply for other chronic illnesses, although there are still no studies relating medical parameters to the duration of other illnesses. Developmental Factors Developmental factors have been largely neglected in research on coping with chronic illness in adolescence.
The variable of age is one exception. Even for adults, the phase of life in which an illness occurs is important. However, a 14 year old is affected by the onset of a severe chronic illness in a very different manner than a year-old adult, who has 16 Diabetic Adolescents and Their Families already achieved most of the developmental tasks that the 14 year old is still confronting.
Empirical studies do, in fact, suggest that chronic illness can delay or prevent adolescents from achieving important developmental tasks. From a developmental point of view, the age of illness onset is especially relevant because of the close association between cognitive development and coping. A study conducted by Rovet, Ehrlich, and Hoppe represents one of the few studies to consider this important aspect.
In their investigation of 51 children with diabetes, aged 6 to 13 years, younger male patients were found to be particularly psychologically vulnerable. Among the age-related changes described in other studies was an increase with age in intropunitivity a tendency to blame oneself when anything goes wrong. This suggests that compliance can worsen despite increased age and that an increase in cognitive understanding is not always accompanied by improved coping Hanson et al.
Several studies have confirmed that the burden on chronically ill adolescents increases with age, leading to poorer adaptation to the illness. Kager and Holden showed that among diabetic adolescents, increasing age was associated with a greater number of negative life events, which in turn corresponded to poorer metabolic control. Adolescents with other chronic illnesses also suffer from more stress or poorer adaptation as they grow older. In adolescents with sickle cell anemia, for example, age is associated with more internalizing problems Brown et al.
In older adolescent rheumatic patients with severe forms of the illness, social problems are multiplied, as may be seen in their Coping with Illness in Adolescence 17 frequent absences from school and their participation in fewer social activities. Compliance, too, appears to decrease with age. However, in studies of adolescents with various chronic illnesses including diabetes, other authors have found no relationship between age and maladaptation Perrin et al. Gender Gender differences in coping with chronic illness and physical impairments have been confirmed by a series of findings.
Studies on healthy adolescents have frequently demonstrated that girls tend to work out tensions and conflicts internally and to develop psychosomatic complaints more frequently than boys, whose reactions are characteristically more overt. These findings are mirrored in studies of chronically ill adolescents. Research has demonstrated that diabetes mellitus and eating disorders e. Diabetic adolescent boys are more prone to developing problem behavior, such as antisocial tendencies or aggression Rovet et al.
Similar gender differences in adaptation to illness have been found in studies of adolescents with cancer Sanger et al.
However, the evaluations were quite often made by mothers and teachers and thus could be biased. The finding that girls adapt more positively to some illnesses may be related to their socialization, which encourages them to be part of and maintain social networks. Nevertheless, the results of gender effects on coping with illness are not uniform, because there are also studies that have revealed no association between gender and adaptation to the illness.
For example, in their studies of diabetic adolescents, Smith et al. As a result, they have been analyzed partly as dependent and partly as independent variables and have been operationalized in several ways, including psychosocial adaptation, psychological adjustment, and personality adaptation.
The conceptualizations of personality variables as state, trait, and process variables have been analyzed repeatedly in association with coping processes since the research work of Lazarus, Averill, and Opton Still, very few studies have focused on the relationship between personality variables and coping with illness in adolescent population samples.
Koski , for example, showed that alexithymic personality characteristics an inability to express emotion openly are accompanied by immature defense and splitting mechanisms in diabetic adolescents. However, research has been inconclusive as to whether the personality construct of extraversion represents a particular risk for diabetic control.
Howe et al. The family, however, is not only a social resource. This has been demonstrated in studies of adolescents with different chronic illnesses, for example, diabetes Hanson et al. Having a chronic illness often makes it impossible for the adolescent to attend school regularly and maintain previous levels of school performance.
The absences from school due to hospital stays and operations can sometimes be compensated for by exercising an uncommon self- 20 Diabetic Adolescents and Their Families discipline and by relinquishing leisure activities. In the long run, deterioration of health coupled with overt, often unattractive changes in physical appearance, as well as the necessity of being subjected to prolonged medical procedures, can consolidate the sick role and lead to a painful loss of status in peer groups. These important features have, however, barely been researched. Johnson showed that only a handful of studies in the previous 20 years had investigated the friendships of chronically ill adolescents.
Some studies have found an association between stressful life events and metabolic control in diabetes e. To some extent, these contradictory findings result from the failure to distinguish stressful everyday events from critical life events. A study by Delamater, Kurtz, Bubb, White, and Santiago demonstrated the mediating role of coping mechanisms.
Their results showed that diabetic adolescents with good, medium, or poor metabolic control did not differ on measures of stress.
However, there were differences in coping styles. Adolescents with poor metabolic control displayed far more wishful thinking and avoidance but also sought help more often. All in all, research still excludes too many considerations of how coping processes can vary with different life events and stressful everyday situations. It is noteworthy that defensive mechanisms were frequently found in these studies. The most common defensive mechanisms in chronically physically ill adolescents are denial and rationalization Jacobson et al.
The widespread use of denial strategies by chronically ill adolescents has been documented in many studies and has also been found to exist on the interpersonal level, for example, in the collaboration between patient, family, and physician Reiser, ; Erlich, Aside from these relatively common defensive strategies, uniform coping strategies, such as cognitive and emotional coping efforts, have been found for different types of illnesses. In view of the enormous social and biographical variation among adolescents with different illnesses, along with their differing levels of competence in coping, this is an astonishing result.
This suggests that coping processes are determined by the stressors associated with particular illnesses as well as by more general burdens and conditions. This section has summarized research on coping with illness in adolescence, based on two meta-analyses of published studies. The focus of interest here has been on coping processes and resources. Many conceptual and methodological problems were uncovered. For example, most of the studies included adolescents belonging to a narrow age range. Different aspects coping, compliance, and adaptation were often intermixed.
Aspects of general adaptation, such as adjustment or psychopathology, were most prominent. Maladjustment was frequently equated with poor coping. Furthermore, developmental factors were rarely examined. Psychopathology As mentioned already, a considerable number of studies on coping with illness in adolescence have looked at psychosocial adjustment. Again, the focus has largely been on the negative outcome of psychopathology.
The results, however, are inconclusive. Some epidemiological overviews Gortmaker et al. Psychological symptoms and problem behavior have been found, for example, in adolescents with sickle cell anemia Hurtig et al. The majority of these studies compared symptomatologies of ill and healthy adolescents. Still, it is important to consider how prevalence rates vary across illness groups.
This is partly because of the high comorbidity of internalizing symptoms, such as anxiety disorders or depression. As Grey et al. For example, severe anxiety can interfere with metabolic control in patients with diabetes, because the production of stress hormones raises blood sugar levels, thereby affecting adjustment.
As Niemcryk et al. It is often expected that adolescents with chronic diseases will be more vulnerable to developing emotional disturbances on both subclinical and clinical levels. In a study by Pumariega et al. Other authors have failed to demonstrate higher rates of internalizing symptoms.
Niemcryk et al. Similarly, Greenberg et al. While some studies have revealed clearly increased levels of symptoms, others have reported an increase of symptoms only on a subclinical level. Other studies found no 24 Diabetic Adolescents and Their Families differences at all between chronically ill adolescents and physically healthy control subjects. These contradictory results are probably related to the fact that most studies did not control for the duration and severity of illness.
Moreover, they rarely took the time phases of the illness into account. The time around diagnosis, the chronic phase, the time after successful treatment or recovery, and the terminal period all involve different stressors, along with different amounts of social support that might buffer the adverse effects of stress. Although comparisons with healthy control subjects might be considered appropriate for some time phases e. Nearly half of the studies used a global measure of psychopathology, whereas roughly one third assessed specific disorders.
Internalizing symptoms were found most often. In summary, studies on the links between chronic physical illness and psychopathology suffer from major limitations and thus have produced contradictory results. An explanation of these links would be highly relevant to the understanding of coping. It is well known that adolescents with clinical disorders show poorer coping skills than normal adolescents Seiffge-Krenke, a. The coping style of chronically ill adolescents could be impaired if behavioral or emotional problems existed alongside the chronic illness.
Diabetes is a comparatively frequently occurring chronic disease in adolescence and exhibits the typical aspects of a chronic illness as detailed in chapter 1. Consequently, compliance and adherence are highly relevant aspects to be considered in assessing the coping process. After the main medical features of diabetes have been described, a preliminary model for understanding the relationships among variables involved in the process of coping with a chronic illness is outlined.
This model may serve as a guide in the discussions of the theoretical questions related to coping. Then, a 4-year longitudinal study of diabetic adolescents and their families, which aimed to integrate medical, developmental, psychosocial, and family dynamics perspectives, is presented. It is characterized by an absolute or relative lack of circulating insulin. It develops as a consequence of an imbalance between insulin production and release on the one hand and hormonal or tissue factors modifying the insulin requirement on the other hand.
Insulin, a hormone produced by beta cells of the pancreas and secreted into the blood, facilitates entry of glucose to body cells. Without insulin, excess glucose accumulates in the blood. The burning of fat leads to the formation of highly acidic ketones, which also accumulate in the blood. The kidneys work overtime in an effort to clear the blood of both excess glucose and ketones, resulting in frequent urination.
Diabetic Adolescents and their Families: Stress, Coping, and Adaptation ( Cambridge Studies on Child and Adolescent Health) [Inge Seiffge-Krenke] on. A chronic illness in adolescence complicates the developmental problems faced by Diabetic adolescents and their families: Stress, coping, and adaptation.
This leads to dehydration and concurrent losses of essential substances such as sodium. The diagnosis of diabetes is frequently suggested by a history of polydipsia excessive thirst , polyuria excessive urination , and polyphagia excessive food intake , associated with weight loss. It is the most frequently occurring endocrine disorder in American and European adolescents.
Although the exact cause of the disorder is not known, several factors, including heredity and viral infections, are thought to play a role. Medical treatment of diabetes primarily strives to maintain blood glucose levels within a range that avoids wide swings, which may lead to severe hyperglycemia or hypoglycemia. Most physicians use glycosylated hemoglobin HbA1 or HbA1c values. The HbA1 or HbA1c value, that is, the fraction of glycosylated hemoglobin in the blood, provides information about the average state of the metabolism over the preceding 4 to 8 weeks.
The timing of insulin injections must be balanced with food intake and energy expenditure on a daily basis. Diabetes is not a static illness. Generally, a critical time takes place around the start of puberty, when hormonal changes interfere with therapeutic efforts to maintain metabolic control.
The management of diabetes places a variety of complex demands on both the patient and the family. For example, insulin injections must be performed at specified times, blood and urine glucose levels must be tested, and dietary regulations must be followed. Obviously, successful therapy requires that the patient be conscientious about following instructions.
In this regard, the burden of illness management is largely placed on the adolescents themselves. The adolescent has to live by the clock and to administer insulin at predetermined times during the day. Adhering to diet and checking blood and urine glucose levels are also important daily activities.
Yet, these are not necessarily matters that concern the adolescent alone. Although it is essentially up to the diabetic adolescent patient to carry out the procedures belonging to the treatment regimen and to maintain adequate blood glucose levels, the parents still need to monitor their adolescent on a continual basis. In addition, numerous family activities are interrupted or impaired by diabetes management, including mealtimes and leisure time activities.
The threat of long-term physical damage poses additional burdens on adolescents with diabetes and their families. As detailed in chapter 2, it is one of the most frequently occurring illnesses in adolescence and has recently received increased attention in research.
Instead, the majority of studies focused on global indices of adaptation or maladaptation. At best, investigators typically elected to study several psychological variables that might be associated with metabolic control or compliance. Most studies were cross-sectional and produced weak to moderate correlations. In addition, many results were contradictory, as seen in the controversy over the mental health of diabetic adolescents see chapter 2.
Such an approach cannot do justice to the complexity of the events and processes involved with the illness. Above all, in creating such a theoretical model, the complexity and interrelatedness of the variables outlined above must be taken into consideration. According to the model, psychosocial factors are organized into levels of increasing complexity. Factors on one level can interact with those on another and thus mask or potentiate their effects. Nevertheless, although the factors included in the model are important for diabetic control, the selection is not exhaustive.
A more complete model must also contain the diachronic perspective because coping is a complex process spread out across a long time span, which affects individuals in particular ways depend- Coping with Diabetes: A Longitudinal Study 29 Figure 3. Consequently, the developmental perspective must also be considered, along with interactions between individual and environment.
Such changes have barely been studied to date. Furthermore, this study has endeavored to systematically observe and document how diabetic adolescents and their families cope with this illness over time. In particular, attempts have been made to identify which coping strategies adolescents employ in each phase of the illness. Changes in family dynamics and parental roles as a result of an adolescent developing a severe chronic illness have also been important aspects.
Due to the low incidence of the disease, diabetic adolescents were recruited from a total of 17 hospitals in Germany. Every effort was made to ensure that the sample population closely matched healthy adolescents. It was especially important to study adolescents who had only recently been diagnosed with diabetes. A total of diabetic adolescents participated in the study, as well as healthy adolescents and their families.
The majority of families in the sample were intact, with both parents married to each other or living together. The study began when the adolescents were about 13 years old. As indicated above, this study is still in progress, and the participants in the original sample are currently being followed up as they make the transition to early adulthood.
The results of four longitudinal surveys, conducted from until , are reported here. Adolescents, their parents, and their physicians participated in each of the annual surveys, which included extensive questionnaires as well as interviews concerning stress, coping, and interpersonal relationships.
Adaptation to the illness was measured according to three criteria: the realization of the developmental tasks typical of this age group, the frequency of behavior and emotional problems, and the level of metabolic control. After this general overview of the study, its important features, such as the sample population, its representativeness, and the instruments used, will be described. Further details can be found under the individual section headings elsewhere in this book.
The gender ratio was balanced in each survey. The dropout rate over four annual surveys was low, with of the original adolescents continuing their participation to the end of the fourth year. These included mothers and 79 fathers of adolescents in the diabetic group, along with mothers and 90 fathers of healthy adolescents. By the time of the fourth survey, a total of parents were still participating, including parents of diabetics 86 mothers and 66 fathers and parents of healthy adolescents mothers and 81 fathers.
The gender ratio remained even across time. Demographic and Socioeconomic Characteristics of the Sample. All participants resided in Germany. The families had an average of 2. Medical Data of the Diabetic Sample. Glycosylated hemoglobin HbA1 or HbA1c values served as criteria for metabolic control in the group of diabetic adolescents. These laboratory values were determined immediately before the research project team members visited the families at home. At the beginning of the study, the sample was divided into three groups according to their status of metabolic control.
Thus on the whole, the adolescents showed a positive physiological adjustment. The representativeness of the diabetic sample was checked by comparing biographical and social data with the distributions provided by the German Federal Bureau of Statistics for a sample of German adolescents of the same age Statistisches Bundesamt, The sample of diabetic adolescents was found to be representative of adolescents of the same age for most age-relevant variables.
Coping with Diabetes: A Longitudinal Study 33 Altogether, the diabetic sample in this study may be considered to be largely representative in terms of the variables analyzed. Age and gender distributions did not differ between groups, nor did variables associated with family structure intactness of the family, number of siblings or educational levels. As already mentioned, there was a small difference in socioeconomic status, with slightly more adolescents in the healthy sample belonging to the upper socioeconomic classes. This difference was statistically controlled for in all further analyses.
No statistical differences were found between the characteristics of those families that participated in all four surveys and those who dropped out. The remaining sample was still representative with respect to the selection criteria. Adolescents diagnosed with insulin-dependent diabetes mellitus were recruited from hospitals offering outpatient care. During a 9-month period, all adolescents and parents who had made appointments in 17 different hospitals and specialized clinics were asked to participate in the study.
These hospitals and clinics provided primary treatment facilities for children and adolescents with IDDM in Germany and offered standard care for adolescents, such as regular blood and urine tests or dietary assistance. The centers typically recommended that the adolescents participate in annual summer camps for diabetes education.
Families that had early adolescents aged 12 to 14 years and that were largely representative with respect to the criteria mentioned in the previous section were selected for participation in the study. The healthy adolescents and their families were recruited by written requests distributed in various schools. In the individual requests to participate, it was made clear to all potential participants that a longitudinal study about coping with chronic illness in the context of adolescent development was planned.
It was explained 34 Diabetic Adolescents and Their Families that it involved annual interviews with ill as well as healthy adolescents together with their families at home. Parents were requested to complete a letter of consent. It is worth mentioning that the recruited diabetic adolescents and their families were highly motivated to participate in the study. It appeared that the adolescents and their families agreed to participate because they themselves were genuinely interested in the developmentally relevant questions to be examined, such as self-concept, body image, relationships with friends, and family interactions.
The ease with which the sample was recruited, with the exception of the very recently diagnosed diabetics see the explanations of seasonal variation in chapter 4 , and the high rate of continued participation over the years indicate that the study contained interesting and motivating aspects for the families with healthy and ill adolescents alike. Procedure for the Annual Surveys. After the initials contacts were made and the research plan explained to the families in more detail, appointments for further meetings were made for each family.
From to , the research project team members visited the families at home each summer and carried out interviews first with the adolescent, then with the parents, and finally with the entire family. In families with a diabetic adolescent, inquiries were made about individual and family coping with the illness. In designing the layout and organization of the questionnaires, every possible attempt was made to use ideas appropriate to the age groups.
The questionnaire packets, divided into three Coping with Diabetes: A Longitudinal Study 35 separate parts, were to be completed within 3 weeks and sent back to the research project team members. The families each received 50 German marks per survey as compensation for their time. Questionnaire packets from the families were sent back quite quickly, whereas the physicians tended to need more prompting to return the materials. Care and Maintenance of the Survey Sample.
Close contact was maintained with all the families that took part in the study. This team member was responsible for interviewing those families over the entire 4 years, so that each family always met with the same interviewer. In general, one or two telephone calls were necessary to remind families to return their test packets. This was quite understandable in view of the volume of questions and tasks assigned to them. The fact that so many families participated in all the surveys suggests that not merely the contents of the questions but also the form of contact with the project team members and the continuity of the relationship were important to them.
The contact between a family and the responsible project team member was often very close. Sometimes a team member would receive telephone calls between interviews, usually when something special had happened or if a question needed explanation. Aside from this, each adolescent was sent amusing Christmas and birthday cards each year, which were well received.
Not infrequently, the adolescents called to thank the research project team for the greetings and congratulations. Brief annual reports about the progress of the project were prepared for the adolescents and their families and were mailed or brought to them on the occasion of the following interview.
The physicians also received these reports. Thus, in addition to seminars held for the purpose of reviewing individual cases, regular meetings with the attending physicians and psychotherapists were planned to exchange pertinent information related to the progress of the study as well as to discuss any questions related to medical problems or psychological disturbances that the participants might show. Case Discussions during Project Team Meetings.
In the framework of meetings relating to the progress of the study, individual families were discussed in regular case seminars. About two families were reviewed in each meeting. Additional aims of the case discussions were to understand what caused particular problems as well as to determine which concrete measures might be suggested to assist the family in solving the problems.
For example, should counseling or psychotherapy be suggested to an adolescent who had developed an eating disorder? Although the cases usually involved families with poorly adjusted diabetics, problems needing discussion also arose in families with healthy adolescents. It is worth mentioning that the case seminars were exceptionally productive.
Supervision by Psychotherapists. In parallel to the case seminars, all members of the project team participated twice annually in a consultation with a trained psychoanalyst. One central aim of these consultations was to better understand the psychodynamics of some problem families; another aim was to be advised about the possible preventive or therapeutic measures.
The collaboration with an external expert was very fruitful, and new insights into the participating families were often gained. Colloquium with the Physicians. All physicians were regularly informed about the progress of the research project. The contact with a few of the Coping with Diabetes: A Longitudinal Study 37 participating physicians was more extensive. The idea of discussing questions in a joint medical-psychological colloquium arose from this close contact.
As mentioned, several interviews were carried out in each annual round of surveys. These interviews were semistructured and dealt with a general set of questions concerning the adolescent generally and the family generally , which were employed in both samples. In the adolescent generally interviews, adolescents were asked about experiences in school, friendships, dating, and romantic relationships. In families with a diabetic adolescent, the standard, general questions were supplemented by additional questions pertaining to individual coping and family coping. Similar questions were also posed in the interviews about family coping, in which the interview guide developed by Hauser et al.
Interviews were carried out both with parents and with the adolescent alone. This task concluded the session. A large number of variables were assessed in the adolescents, considerably fewer in their parents, and the least in the physicians. This funnel principle followed from the idea that the adolescent should be the focus of the study. In summary, this was a process—outcome study, which followed healthy and diabetic adolescents, starting in early adolescence, and their families over a course of 4 years.
The overall developmental changes in families with a diabetic adolescent were compared with those in families with a healthy adolescent. In the group of diabetic adolescents, emphasis was placed on examining the interaction between adaptation to the illness and developmental progression. In this regard, great importance was assigned to eliciting the different perspectives of the adolescents themselves, along with the views of their parents, siblings, and physicians, and integrating these perspectives into the analysis. A Developmentally Oriented Model of Coping with Diabetes in Adolescence The overview of research results on coping with chronic illness in adolescence in chapter 2 has made it clear that previous research has suffered from many methodological and conceptual weaknesses.
The conceptual weaknesses have been many. For one, too many studies have focused on the aspects of general adaptation, compliance with medical advice, or the pattern of symptoms in the chronically ill. Too few studies have attempted to identify adaptive coping strategies used in dealing with the illness.
The perspectives of the physicians treating the patients have remained almost entirely unknown. Above all, the developmental aspect has hardly been addressed. Because the majority of studies used a cross-sectional design, no appropriate conclusions can be drawn about general progress in coping and adaptation.
At best, extrapolating statements have been made, based on a summation of means taken from a sample with a large range of ages. Such a developmental orientation would, of course, encourage the use of longitudinal experimental designs to explain development and change. In any case, this kind of approach is especially suitable for this age group, because it is generally important to understand how adolescents deal with the abundance of various normative developmental stressors occurring during this time.
If a chronic illness should occur in this phase, then the adolescent is doubly confronted with a nonnormative and highly demanding stressor in addition to normative developmental stressors. Social support systems may be most decisive for ensuring positive adaptation, as they can help the adolescent to cope with the illness or other developmental tasks.
Owing to the changing quality of the parent—child relationship at this age, friends and romantic partners become increasingly important. In addition, their adaptive and maladaptive forms of coping with problems can serve as a model for the adolescent. This phenomenon, although frequently described in the literature Blos, , has not received enough attention in research. The close, long-standing relationship a chronically ill adolescent develops with his or her physician deserves similar consideration.
This study encouraged the development of a broader model for understanding the process of coping with chronic illness in adolescence. Figure 3. The following chapters, which are oriented toward the results of the longitudinal study introduced in this chapter, will examine these associations in detail. Adaptation to the illness and overall development was assessed in a longitudinal study of early adolescents with diabetes and compared with the development of healthy adolescents until both groups approached late adolescence.
Furthermore, numerous developmental variables, such as self- Figure 3. Developmental model of coping with diabetes in adolescence. Symptomatology and the realization of developmental tasks were selected for both groups as measures of general adaptation. Metrics details. Psychosocial problems are common in patients with diabetes. However, data on psychosocial issues affecting patients with diabetes in Zambia are scarce.
The present study explored sources of stress, stress coping strategies, stigma and perceived quality of life and care as experienced by adolescents living with Type 1 Diabetes in Zambia. Semi-structured interviews were carried out. Transcripts were analyzed using a thematic approach. Stress was commonly reported by adolescents mainly stemming from social, psychological and physical sources.
To deal with stress, adolescents often employed different coping strategies such as adapting, accepting and avoiding among others. In addition, low quality of life was an issue among adolescents and their families. Poor diet, low socioeconomic status and lack of medicine were factors affecting quality of health care.
Stress was an issue affecting adolescents; the coping strategies employed were sometimes maladaptive such as avoiding injecting themselves to escape stress. Several aspects of quality of life were suboptimal in both adolescents and their families, such as stigmatization, short life expectancy, low socioeconomic status and poor social participation.
Findings show that there is an urgent need for a strong response from all stakeholders governments, patients, organizations and companies to improve diabetes care and living conditions for young people with type 1 diabetes living in Zambia. Diabetes is one of the leading causes of mortality and disability around the world.
The most common complications of diabetes that lead to mortality and disability include cardiovascular diseases, neuropathy, nephropathy, retinopathy and foot ulcers [ 1 ].
It is also common to find co-morbid problems among diabetes patients such as depression [ 2 ], hypertension [ 3 ], HIV and AIDS [ 4 ], and malaria especially in developing countries. Constantly seeking treatment and engaging in everyday self-care activities such as frequent glucose monitoring, following a meal plan, and correctly preparing or remembering to take insulin or oral medications at the right times can be a source of diabetes-specific emotional stress and can be difficult to follow a regime in times of stress for people with diabetes [ 5 ].
Stress refer to a physiological or a psychological response to external stimuli or to stressful events themselves which can be negative or positive or both [ 5 ]. Common signs of stress in patients include changes in sleep patterns, changes in appetite, anxious thoughts, and irritability [ 6 ]. General emotional stress can affect the blood glucose levels and glycemic control, and interfere with the ability to self-manage diabetes.
Moreover it has been found to be associated with poor quality of life [ 5 , 7 ]. Stressful experiences influence diabetes control not only because of the devastating effect on poor blood glucose control but also because of the association between high blood glucose levels and the development of diabetes related complications [ 5 , 8 ]. For example, in prospective studies involving individuals with type 1 diabetes, patients who reported negative stress showed deteriorating glycemic control over time [ 9 ].
In addition to the physiological influence that stress has on glycemia, stress interferes with the ability to self-manage diabetes such as monitoring glucose frequently, following a meal plan and correctly preparing or remembering to take insulin or oral medication at the right time [ 5 ]. In adolescents with type 1 diabetes specifically, research shows that stress stems from the need to manage a complex medical condition that requires daily completion of multiple self-care behaviors, the impact of diabetes on social interactions with family members, peers and teachers as well as the interference of symptoms such as hypoglycemia with daily activities [ 10 ].
The observed effect of stress on individuals with diabetes shows great intra-individual and inter-individual variance depending on situational factors, type and amount of stress, personal characteristics and coping strategies [ 11 ]. The few African studies that have been conducted suggest that there is a link between stress and development of diabetes.
In Kenya for example, patients linked diabetes to stress caused by disharmony, and conflicts within the family and strong emotions due to shock [ 12 ]. In South Africa, children with diabetes were found to have experienced more frequent stressful events compared to control children [ 13 ]. Chronic stress is an important risk factor for depression and depressed persons with diabetes have considerably lower Quality of Life QoL [ 14 ].
Most of the studies in this area have been conducted in Western countries, African data are still scarce. For instance in Zambia at baseline, mean values of QoL were significantly lower in adolescents with diabetes compared to health controls 19 vs. In a Nigerian sample of patients with diabetes, poor QoL was associated with diabetes-related physical complications, lower education status and having type 2 diabetes [ 16 ]. In Sub-Saharan countries, low QoL is exacerbated by inaccessibility of medical care and the relatively high costs of insulin, a lack of medical tools such as blood glucometers, poor infrastructure, inadequate training of health workers, and increased risk of misdiagnosis and failure to detect diabetes [ 17 ].
Given the above background, in the present study we explored sources of stress, ways of coping with stress, perceived quality of care and life as experienced by Zambian adolescents living with type 1 diabetes T1D from the viewpoints of the adolescents themselves, their caregivers and their health care providers. Specific objectives were to explore:. Zambia is located in the southern part of Africa with an estimated population of 13,, inhabitants. Zambia is categorized as a lower middle income nation [ 18 ]. Lusaka is the biggest city in Zambia with 2,, inhabitants [ 19 ].
The Diabetes clinic serves approximately diabetes patients age range: newborns to 17 year olds. The services offered to them include medical reviews and examinations, such as blood glucose and ketone testing, treatment and disease management plans, diabetes education and whenever available, free supply of medical essentials, such as needles and syringes. Participants adolescents, guardians of adolescents and health providers of adolescents with diabetes were recruited using a purposive sampling method from the University Teaching Hospital in Lusaka.
Adolescents with diabetes had to be aged between 12 and 18 years and currently using insulin therapy to meet inclusion criteria. Adolescents were included in the study because they were key informants on their experience living with diabetes. Guardians had to be primary caregivers guardian here means any one responsible of taking care of the adolescent. It was important to include guardians because they had first-hand experience living with an adolescent with diabetes while health care practitioners had to work at the diabetes clinic to be involved in the study.
Health care practitioners were included because they interacted with adolescents during clinical care; hence their views on experiences of adolescents with diabetes were valuable. However, because only a few guardians accompanied the adolescents during medical appointments we did not reach data saturation in the guardians; time and cost could not allow us to follow them up in their respective homes. Further, given a small number of health care providers who routinely attend to adolescents with diabetes, we interviewed all we could identify at the time of the study.
The current study employed semi-structured interviews, because this qualitative methodology is particularly useful when researchers aim to understand the lived experiences, opinions, stories and views of the specific respondents on a certain phenomenon [ 20 ]. Interviews were conducted using open-ended questions. All interviews were held in a quiet place that was most convenient to participants and interviews were conducted by the first author GH. The majority of interviews were conducted in English and five in either Bemba, Nyanja or Tonga three local Bantu languages.
The interviewer is a native Tonga speaker and individual multilingualism is common in Zambia. Interviews were audio recorded after permission of the participant and notes were also taken by the researcher. Interviews that were in the local languages were translated to English and all transcripts were checked by a research assistant who was fluent in the three local languages and English. Guiding questions focused on sources of stress, coping strategies and perceived quality of care and life as experienced by adolescents living with T1D. Semi-structured interviews were not piloted but they were discussed with health practitioners under the diabetes association for content-related validity expert validity before data was collected.
The interviews lasted between 25 and 40 minutes. Audio recorded interviews were transcribed verbatim and translated to English whenever applicable and further checked for accuracy. In order to develop the themes and the categories, as near as possible to the material, an inductive category process was used [ 21 ]. After careful and thorough reading and re-reading, the initial coding and categorization of the themes was done by the first author and verified by the second author to ensure trustworthiness.
Sentences or paragraphs related through their content or context were assigned codes and related codes were finally categorized as themes in a tally table. This process continued until no new themes emerged from the data. Emergent themes were discussed and refined by authors G. H and A. Data were analyzed manually. The study explored: stressors, stress coping strategies, diabetes care, quality of diabetes health care and life as experienced by young patients with diabetes in Zambia.
Here we present data on the main forms of stressors in patients with diabetes which fall under social stressors e. An important social stressor in adolescents came from their need not to disclose their diabetes condition to others. Many adolescents worked hard to keep their condition a private issue. They were also stressed because of the discrimination they faced from others, mainly because peers thought diabetes is a communicable disease:. Sometimes they face segregation, they let them play alone or let them do things alone because some of them think that it is communicable and they can get it if they hang out with them.
Another factor that contributed to social stress was lack of family support as exemplified by some family members pressuring the adolescents to stop injecting themselves insulin:. In my family, they want me to stop injecting myself insulin.
What they say stresses me a lot. They say that injecting myself is damaging my body. Female, grade 9. Most adolescents were frustrated and wondered why they had to do certain things that their peers were not doing, such as carrying insulin and injection kits. Adolescents, especially the girls, were also stressed by the fact that the use of insulin was contributing to their weight gain but they still had to continue using it:.
Insulin makes them fat and when you look at adolescents particularly if I narrow it to the girls, they want to be slim. Adolescents were also scared of diabetes related death which became a source of stress especially among the boys who thought having diabetes was a death sentence. There was also a worry especially among the female guardians and adolescents girls with diabetes that they were unwanted by men who think that they cannot bear a child:. Children with such condition diabetes find it difficult to get married and cannot have children.
Diabetes comes with many complications; so many men will not want to marry such a girl. Female guardian 36 years old. Sometimes I just ask why me? I have friends and most of them have no diabetes. And I also now wonder whether people with diabetes give birth, so I feel stressed. Female grade Physical stressors revolved around self-care activities including dietary limitations that adolescents faced because certain food stuffs e.
In addition to diet restrictions, strict and rigid diabetes self-care was a source of stress especially the thought of injecting themselves multiple and painful insulin shots per day:. Some inject themselves two times a day some three times a day. So the thing of injecting themselves every time is a stress as well.
Diabetes Peer educator. Most of my stress comes from injecting myself. Female, grade Adolescents were stressed by the limitations they faced. Many adolescents had challenges managing their sugar levels and experienced side effects of low or high sugar levels:. I am stressed if the blood sugar is high I start feeling very sick and sometimes vomiting and become tired. For girls, having infections in their sexual organs vaginal thrush as a result of diabetes was stressful perhaps because they worried that they may have contracted sexually transmitted infections which are rampant among Zambian adolescents:.
Female adolescents often get stressed in the sense that they usually have vaginal thrush and that stresses them more because they think how did I get it especially if they do not engage in sexual relationships. Social stigmatization was also common during play with peers.