Leen Oris

Parental and peer support in adolescents with a chronic condition: a typological approach and developmental implications

Research has consistently demonstrated that contextual support is crucial towards the psychological functioning of adolescents with chronic conditions. However, the literature has predominantly focused on parental support instead of adopting an integrated approach to parental and peer support. The present manuscript with two longitudinal studies in adolescents with Type 1 diabetes and congenital heart disease examined the extent to which different clusters of maternal, paternal, and peer support at baseline were related to well- and ill-being over time. In both studies, four clusters emerged: combined support, parental support, peer support, and lack of support. Follow-up longitudinal analyses indicated that especially combined support from parents and peers proved to be of crucial importance towards psychological functioning. The present studies demonstrated the value of a typological approach for assessing social support in adolescents with chronic conditions. In addition to focusing on parental support, future research should assess peer support as well in these adolescents.

Bringing Antonovsky's salutogenic theory to life: A qualitative inquiry into the experiences of young people with congenital heart disease

Objective Antonovsky coined sense of coherence (SOC) as the central concept of his salutogenic theory focusing on the origins of well-being. SOC captures the degree to which one perceives the world as comprehensible, manageable, and meaningful. Life events and resources are considered to be the building blocks of a persons SOC. However, mainly quantitative studies have looked into the role of life events and resources. Therefore, the present study aims to gain a deeper insight into the experiences of patients with congenital heart disease (CHD) regarding resources and life events. Method For this qualitative study, patients were selected from the sample of a preceding study on development of SOC (n = 429). In total, 12 young individuals with CHD who had either a weak (n = 6) or strong SOC (n = 6) over time were interviewed (8 women, median age of 20 years). Data analysis was based on the constant comparative method as detailed in the Qualitative Analysis Guide of Leuven. Commonalities and differences between patients from both groups were explored. Results The following themes emerged: (1) self-concept; (2) social environment; (3) daytime activities; (4) life events and disease-related turning points; (5) stress and coping; and (6) illness integration. Additionally, the degree of personal control was identified as an overarching topic that transcended the other themes when comparing both groups of patients. Conclusion These results may have implications for the structure and content of interventions improving well-being in young people with CHD.Objective Antonovsky coined sense of coherence (SOC) as the central concept of his salutogenic theory focusing on the origins of well-being. SOC captures the degree to which one perceives the world as comprehensible, manageable, and meaningful. Life events and resources are considered to be the building blocks of a persons SOC. However, mainly quantitative studies have looked into the role of life events and resources. Therefore, the present study aims to gain a deeper insight into the experiences of patients with congenital heart disease (CHD) regarding resources and life events. Method For this qualitative study, patients were selected from the sample of a preceding study on development of SOC (n = 429). In total, 12 young individuals with CHD who had either a weak (n = 6) or strong SOC (n = 6) over time were interviewed (8 women, median age of 20 years). Data analysis was based on the constant comparative method as detailed in the Qualitative Analysis Guide of Leuven. Commonalities and differences between patients from both groups were explored. Results The following themes emerged: (1) self-concept; (2) social environment; (3) daytime activities; (4) life events and disease-related turning points; (5) stress and coping; and (6) illness integration. Additionally, the degree of personal control was identified as an overarching topic that transcended the other themes when comparing both groups of patients. Conclusion These results may have implications for the structure and content of interventions improving well-being in young people with CHD.

Illness Identity in Adolescents and Emerging Adults With Type 1 Diabetes: Introducing the Illness Identity Questionnaire.

OBJECTIVE The current study examined the utility of a new self-report questionnaire, the Illness Identity Questionnaire (IIQ), which assesses the concept of illness identity, or the degree to which type 1 diabetes is integrated into one’s identity. Four illness identity dimensions (engulfment, rejection, acceptance, and enrichment) were validated in adolescents and emerging adults with type 1 diabetes. Associations with psychological and diabetes-specific functioning were assessed. RESEARCH DESIGN AND METHODS A sample of 575 adolescents and emerging adults (14–25 years of age) with type 1 diabetes completed questionnaires on illness identity, psychological functioning, diabetes-related problems, and treatment adherence. Physicians were contacted to collect HbA1c values from patients’ medical records. Confirmatory factor analysis (CFA) was conducted to validate the IIQ. Path analysis with structural equation modeling was used to examine associations between illness identity and psychological and diabetes-specific functioning. RESULTS CFA indicated that the IIQ has a clear factor structure, meaningfully differentiating four illness identity dimensions. Rejection was related to worse treatment adherence and higher HbA1c values. Engulfment was related to less adaptive psychological functioning and more diabetes-related problems. Acceptance was related to more adaptive psychological functioning, fewer diabetes-related problems, and better treatment adherence. Enrichment was related to more adaptive psychological functioning. CONCLUSIONS The present findings underscore the importance of the concept of illness identity. A valid and reliable measure, the IIQ, is introduced to measure four illness identity dimensions in individuals with type 1 diabetes. These four illness identity dimensions were uniquely related to psychological and diabetes-specific functioning.

Development and persistence of depressive symptoms in adolescents with CHD.

Patients with CHD are vulnerable to psychiatric disorders. The present study compared baseline depressive symptoms between adolescents with CHD and community adolescents, and also assessed the development and persistence of depressive symptoms in patients. We examined the implications of persistent depressive symptoms towards quality of life and patient-reported health. In total, 296 adolescents with CHD participated in a four-wave longitudinal study, with 9-month intervals, and completed measures of depressive symptoms - Center for Epidemiologic Studies Depression Scale (CES-D) - at time points one to four and of quality of life - linear analogue scale (LAS) - and patient-reported health - LAS and Pediatric Quality of Life Inventory - at T (time) 4. Information about diagnosis, disease complexity, and previous heart surgery was collected from medical records. At T1, 278 patients were matched 1:1 with community adolescents, based on sex and age. The findings of this study indicate that patients scored significantly lower on depressive symptoms compared with community adolescents. Depressive symptoms in the total patient sample were stable over time and were unrelated to disease complexity. Based on conventional cut-off scores of the CES-D, substantial individual differences existed in the extent to which depressive symptoms persisted over time: 12.2% of the patients reported elevated depressive symptoms at minimally three out of the four time points. Especially physical functioning, cardiac symptoms, and patient-reported health at T4 were predicted by persistent depressive symptoms, even when controlling for the level of depressive symptoms at T4. Our findings indicate that those involved in the care of adolescents with CHD should remain vigilant to persistent depressive symptoms and arrange timely referral to mental healthcare services.

Parenting and Treatment Adherence in Type 1 Diabetes Throughout Adolescence and Emerging Adulthood

Objective To examine the role of diabetes-specific parental regulation and general parenting dimensions (responsiveness and psychological control) in treatment adherence throughout adolescence and emerging adulthood. Methods A total of 521 patients (aged 14-25 years) with Type 1 diabetes, 407 mothers, and 345 fathers were included. Analyses within and across informants examined the associations between the parenting variables and treatment adherence (and potential moderation effects in these associations). Results Lower psychological control and higher parental responsiveness were associated with better treatment adherence. Diabetes-specific parental regulation was not linked to treatment adherence, except when combined with high levels of responsiveness. Some effects of psychological control and responsiveness were more pronounced in the older age-group. Conclusions Researchers and clinicians should remain attentive to the potential role of parenting for treatment adherence, even in emerging adult patients.

Coping with type 1 diabetes through emerging adulthood: Longitudinal associations with perceived control and haemoglobin A1c

Objective: This study, which is part of a larger longitudinal study focusing on the biopsychosocial functioning of emerging adults with type 1 diabetes, examined how perceived personal control, coping and HbA1c relate to one another over time. Design and main outcome measures: Emerging adults with type 1 diabetes (18–30 years old) participated in a two-wave longitudinal study spanning five years (N = 164 at Time 1). At both times, patients completed questionnaires on perceived control and coping (i.e. diabetes integration, avoidant coping and passive resignation). HbA1c values were obtained from treating clinicians. We investigated the directionality of effects using cross-lagged path analysis. Results: Higher HbA1c values predicted relative decreases in diabetes integration and increases in avoidant coping five years later. Feeling less in control over diabetes predicted the use of passive coping over time. Passive coping predicted a relative decrease in perceived control five years later. Conclusion: These findings indicate that tackling poor glycaemic control is not only important to avoid medical complications but also to prevent patients from resorting to more avoidant coping strategies. Furthermore, given the longitudinal interplay between perceived control and passive coping, it is important that intervention efforts include both cognitive and behavioural components to be effective.

The Role of Peers for Diabetes Management in Adolescents and Emerging Adults With Type 1 Diabetes: A Longitudinal Study

OBJECTIVE The increasing importance of peers in adolescence and emerging adulthood has been widely acknowledged. However, longitudinal research linking the peer context to diabetes management and outcomes is scarce. The present longitudinal study in a large sample of youths with type 1 diabetes related both positive and negative peer variables to diabetes outcomes over a time interval of 1 year. RESEARCH DESIGN AND METHODS Our sample consisted of 467 adolescents (14–17 years of age) and emerging adults (18–25 years of age) with type 1 diabetes who participated in a two-wave longitudinal study. Questionnaires tapped into peer support, extreme peer orientation, parental responsiveness, diabetes-related distress, and treatment adherence. HbA1c values were obtained from the treating physicians of patients. Cross-lagged analysis from a structural equation modeling approach was performed to assess the directionality of effects. RESULTS Peer support negatively predicted diabetes-related distress over time. Extreme peer orientation positively predicted treatment distress over time. Parental responsiveness negatively predicted food distress over time. Treatment adherence negatively predicted extreme peer orientation, treatment distress, and HbA1c values over time. For emerging adults specifically, there was a reciprocal relationship between HbA1c values and extreme peer orientation because they positively predicted each other. CONCLUSIONS This study highlights the importance of peers in predicting the functioning of youths with type 1 diabetes. Additionally, treatment adherence at baseline was found to negatively predict extreme peer orientation, treatment distress, and worse glycemic control over time. In sum, the current study underscores the importance of the peer context for adolescents and emerging adults with type 1 diabetes.

Longitudinal trajectories of benefit finding in adolescents with type 1 diabetes

Objectives: Benefit finding, which refers to perceiving positive life changes resulting from adversity, has been associated with better psychosocial well-being in different chronic illnesses. However, little research to date has examined how benefit finding develops in the context of Type 1 diabetes (T1D). The present study aimed to identify trajectories of benefit finding across adolescence and to investigate prospective associations with depressive symptoms, self-care, and metabolic control. Method: Adolescents with T1D aged 10 to 14 (Mage = 12.49 years, 54% girls) participated in a 4-wave longitudinal study spanning 1.5 years (N = 252 at Time 1). Adolescents filled out questionnaires on benefit finding, self-care, depressive symptoms, and illness perceptions. HbA1c values were obtained through point of care assays. We used latent growth curve modeling (LGCM) and latent class growth analysis (LCGA) to examine the development of benefit finding. Cross-lagged path analysis and multi-group LGCM were used to examine prospective associations among the study variables. Results: Adolescents reported moderate levels of benefit finding which decreased over time. Three benefit finding trajectory classes were identified: low and decreasing, moderate and decreasing, and high and stable. These trajectory classes differed in terms of self-care, perceived personal and treatment control, and perceptions of illness cyclicality. Higher levels of benefit finding predicted relative increases in self-care 6 months later. Benefit finding was not prospectively related to depressive symptoms and metabolic control. Conclusions: Benefit finding may serve as a protective factor for adolescents with Type 1 diabetes and may motivate these adolescents to more closely follow their treatment regimen.

Change and stability in depressive symptoms in young adults with Type 1 diabetes

This study examined inter-individual differences in depressive symptom development in young adults with type 1 diabetes. Individuals with persistent depressive symptoms were at risk for suboptimal development in terms of illness perceptions, illness functioning, and self-esteem. Individuals reporting no/minimal depressive symptoms over time were characterized by the most optimal development.

Illness Identity: A Novel Predictor for Healthcare Use in Adults With Congenital Heart Disease

Background To optimize healthcare use of adults with congenital heart disease, all important predictors of healthcare utilization should be identified. Clinical and psychological characteristics (eg, age and depression) have been found to be associated with healthcare use. However, the concept of illness identity, which assesses the degree to which congenital heart disease is integrated into ones identity, has not yet been investigated in association with healthcare use. Hence, the purpose of the study is to examine the predictive value of illness identity for healthcare use. Methods and Results In this ambispective analytical observational cohort study, 216 adults with congenital heart disease were included. The self‐reported Illness Identity Questionnaire was used to assess illness identity states: engulfment, rejection, acceptance, and enrichment. After 1 year, self‐reported healthcare use for congenital heart disease or other reasons over the past 6 months was assessed including hospitalizations; visits to general practitioner; visits to medical specialists; and emergency room visits. Binary logistic and negative binomial regression analyses were conducted, adjusting for age, sex, disease complexity, and depressive and anxious symptoms. The more profoundly the heart defect dominated ones identity (ie, engulfment), the more likely this person was to be hospitalized (odds ratio=3.76; 95% confidence interval=1.43–9.86), to visit a medical specialist (odds ratio=2.32; 95% confidence interval=1.35–4.00) or a general practitioner (odds ratio=1.78; 95% confidence interval=1.01–3.17), because of their heart defect. Conclusions Illness identity, more specifically engulfment, has a unique predictive value for the occurrence of healthcare encounters. This association deserves further investigation, in which the directionality of effects and the contribution of illness identity in terms of preventing inappropriate healthcare use should be determined.