Adolescent Self-management Research Articles

Mechanisms Of Change in Adolescent Pain Self-management

Mechanisms Of Change in Adolescent Pain Self-management

Adolescent HIV Self-management: Lived Experiences of Adolescents, Caregivers, and Health Care Workers in a South African Context.

Adolescence is a complex developmental phase, made more complex by chronic disease. When dealing with treatment and the health impact of chronic diseases, adolescents need to learn to self-manage an array of challenges. Unfortunately, there is a gap in the literature related to chronic disease self-management in adolescents living with HIV. We describe the phenomenon from the perspectives of adolescents, caregivers, and health care workers (HCWs) in South Africa. Individual interviews were conducted with 6 adolescents, 6 caregivers, and 6 HCWs, followed by 5 adolescent focus groups. Interpretive phenomenology guided exploration of social and cultural experiences and found that adolescent self-management required an understanding of HIV and hope for the future. Adolescents also needed skills to prioritize and negotiate care while managing stigma. These processes were facilitated by love and support, primarily from immediate family, and by the adolescent engaging with family, HCWs, and peers.

Factors Affecting the Self-Management of Adolescents with Type 1 Diabetes Mellitus based on the Information-Motivation-Behavioral Skills Model

The purpose of this study was to investigate associations between self-management and diabetes knowledge, diabetesrelated attitudes, family support, and self-efficacy in adolescents with type 1 diabetes mellitus based on the information-motivation- behavior skills model. Data collection was conducted between March 18 and September 30, 2018. Patients (N=87) aged 12 to 19 years were recruited from the outpatient clinic of S children's hospital and an online community for patient with type 1 diabetes mellitus. Data were analyzed using descriptive statistics, the independent t-test, one-way ANOVA, Pearsons correlation, and hierarchical multiple linear regression with SPSS IBM 23.0, with the two-tailed level of significance set at 0.05. The mean score of self-management in adolescents with type 1 diabetes mellitus was 61.23±10.00 out of 80. The regression analysis showed that self-efficacy and family support significantly explained 56.9% of the variance in self-management (F=21.38, p<.001). Self-efficacy (β=.504, p<.001) and family support (β=.188, p<.001) were significant predictors of self-management. It is necessary to develop individual interventions to improve self-efficacy and family support for adolescents with type 1 diabetes mellitus to help them enhance their self-management.

A Study to Explore the Professional Conceptualization and Challenges of Self-Management in Children and Adolescents with Lymphedema.

Background: The aim of this study was to explore the professional experience of caring for children and adolescents with lymphedema and to explore the way in which they understand and implement self-management strategies and the influence of their own self-efficacy beliefs on this process.Methods and Results: Participants were recruited during an educational camp for children with lymphedema. Three individual semistructured focus groups were undertaken in English, French, and Italian with simultaneous translation. Data were analyzed using interpretative phenomenological analysis (IPA). Analysis of the data produced three superordinate themes: professional concepts of self-management, professional practice, and redefining the cornerstone of lymphedema care. An additional seven subthemes were as follows: readiness to self-management, professional perspectives on self-management, defining success and treatment failure, emotional burden, traditional views on complex decongestive therapy, new ways to practice, and sole practitioner versus multidisciplinary teams.Conclusions: The purpose of the study was to explore the challenges professionals face when introducing self-management to children and adolescents with lymphedema and their parents and to explore their own sense of self-efficacy in approaching this. The research allowed in-depth discussion about the ways they conceptualize self-management and faced professional challenges. The research highlighted the need to define what is considered an acceptable outcome within a complex and uncertain condition and the self-management strategies that are needed to support this.

A Study Using Visual Art Methods to Explore the Perceptions and Barriers of Self-Management in Children and Adolescents with Lymphedema.

Background: The aims of this study were to explore, using visual art methodology, how children and adolescents perceive their lymphedema and conceptualize the barriers and enablers in self-management and to explore the role of an educational camp in promoting self-efficacy.Methods: Participants (speaking English, French, and Italian) were recruited during an educational camp for children with lymphedema. Children and adolescents used different methodologies to depict living and self-managing their condition. Younger children (aged 5–12 years) drew pictures, and all children and adolescents (aged 5–18 years) were given cameras and asked to take photographs that depicted their experience of learning self-management of their condition during the camp. Rose's critical visual methodology framework was used for analysis.Results: Analysis of the data produced five categories: Normal versus altered childhood, living with lymphedema; perceptions of lymphedema and self-care in younger children; adolescents' perception of living and managing lymphedema; learning self-efficacy; and insights into cultural differences in self-care.Conclusions: The study has shown that self-management is complex. Children and adolescents face many daily challenges and frustrations in managing their condition in addition to the normal challenges of development and growth that impact on: home life, time with friends, school activities, and relationships. Children expressed a deep longing for cure and a recognition that their lives were altered by having the condition that led to limitations in sport and wearing fashionable clothes and shoes. The importance of relationships with professionals was critical as was the experience of meeting and learning with other children through the camp experience. Attempts to simplify self-management techniques would appear to be a key priority as would a greater understanding of the self-beliefs young people have of their ability to influence and control their condition and its impact on their life.

A Study to Explore the Parental Impact and Challenges of Self-Management in Children and Adolescents Suffering with Lymphedema.

Background: Limited research has shown the impact lymphedema has on children and families. The aim of this study was to explore the parental experience of caring for a child or adolescent with lymphedema and the daily challenges of self-management and self-efficacy.Methods and Results: Participants were recruited during an educational camp for children with lymphedema (N = 26). Three individual semistructured focus groups were undertaken in English, French, and Italian with simultaneous translation. Data were analyzed using interpretative phenomenological analysis. Analysis identified four superordinate themes; the journey, treatment management, independence, and psychosocial impact. Ten subthemes were identified: bandaging/compression, professional support, holistic care, fear, self-efficacy, acceptance, friendship, guilt, distress, and hope.Conclusions: Parental self-management of children with lymphedema is complex and invades many aspects of life. Lack of professional agreement over what constitutes self-management leads to parental confusion and anxiety. Self-management is demanding, and parents are ambivalent to its effectiveness, but choose to persevere through fear of their child's condition deteriorating. Self-efficacy is evident in complex problem solving, despite parents believing that they are not adequately prepared for this.

Implementation of an educational intervention to optimize self-management and transition readiness in young adults with sickle cell disease.

The transition from the pediatric setting to adult care is a well-described period of morbidity and mortality for persons with sickle cell disease (SCD). We sought to measure the feasibility and effectiveness of providing skill-based educational handouts on improving self-management and transition readiness in adolescents with SCD. This was a single-center study in which participants completed a self-assessment, the Adolescent Autonomy Checklist (AAC), to assess transition readiness and self-management skills at baseline. After results were reviewed by the study coordinator, participants were provided with skill-based handouts on noted areas of deficit. The AAC was subsequently completed at a follow-up visit. All data were stored electronically and transferred into SAS for statistical analyses. Sixty-one patients completed the AAC at baseline and postintervention. At baseline, patients reported needing the most help with skills in money management, living arrangements, vocational skills, and emergency and healthcare skills. Postintervention, statistically significant improvements (P < 0.05) occurred in skills related to laundry, housekeeping, healthcare, and sexual development. A regression model exploring the time to follow-up showed that most improvements could not be attributed to maturation alone. This study showed that educational handouts are a readily implementable and well-accepted intervention among adolescents with SCD who identify challenges with skills necessary to successfully transition to adult care. Distinguishing which transition needs are best improved with this type of intervention will help to strengthen the multidisciplinary approach necessary to support adolescents and young adults with SCD as they matriculate to adult care.

Factors across life associated with remaining free from functional limitations despite lifelong exposure to socioeconomic adversity

BackgroundThere are substantial socioeconomic inequalities in functional limitations in old age. Resilience may offer new insights into these inequalities by identifying constellations of factors that protect some individuals from developing...

Health literacy, nutrition knowledge, and health care transition readiness in youth with chronic kidney disease or hypertension: A cross-sectional study.

This study evaluates the associations of nutrition knowledge and health literacy with health care transition (HCT) readiness and self-management in adolescents and young adults (AYAs) with chronic kidney disease (CKD) or hypertension. Chronically ill AYAs with poor HCT or self-management skills are less likely to achieve favorable health outcomes as they enter adulthood. Health literacy and nutrition knowledge, which are identified as important contributors to health outcomes, may suggest important points of interventions to improve self-management skills. For the study, we enrolled 59 consecutive patients ages 12-29, with a diagnosis of CKD or hypertension at pediatric- and adult-focused clinics in the United States. Participants completed measures of nutrition knowledge, health literacy, and the Self-management and Transition to Adulthood with Rx = treatment (STARx) questionnaire. Correlation tests and multivariate regressions were employed for data analysis. The findings show that health literacy was positively associated with self-management skills (p = .050), communication with providers (p = .002) and overall HCT (p = .001) after adjusting for key variables. Disease-specific nutrition knowledge positively predicted communication with providers (p = .002) and overall HCT (p < .001) after adjusting for key variables. Therefore, health literacy and nutrition knowledge predicted self-management and transition readiness. Testing for these skills should be considered in clinics and HCT preparation for AYAs with chronic conditions.

Developing a Problem-solving Intervention to Improve Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease

PurposeAdolescents and young adults (AYA) with sickle cell disease (SCD) are at risk for serious complications including increased morbidity and early mortality during their transition from pediatric to adult care. Self-management support may help improve transition outcomes in this vulnerable population. Interventions based on teaching problem solving skills have been shown to improve adherence to therapy for AYA with other chronic disease and is a promising intervention in SCD. We sought patient and parent perspectives on improving self-management and input on the development of a problem-solving education (PSE) intervention. Design and methodsWe held focus groups with AYA with SCD and caregivers to discuss barriers and facilitators of self-management, acceptability of PSE and intervention content and delivery. ResultsFive focus groups were held with AYA (n = 17) and caregivers (n = 15). Groups participated jointly to discuss self-management and then separately to discuss PSE. Data were analyzed using grounded theory and double-coded until thematic saturation was achieved. ConclusionsBoth groups endorsed PSE as an acceptable intervention. Barriers to self-management included wanting to fit in with peers (AYA) and trouble letting go (parents); facilitators included having a regular routine (AYA) and sharing responsibility (parents). Participants suggested meeting in small groups for PSE sessions rather than individually and adding group sessions for parents. Practical implicationsUnderstanding AYA and caregivers' perceptions of barriers and facilitators of transition in SCD can help us better prepare AYA for transition. The specifics both groups identified as helpful will guide intervention development.

Understanding adolescent and parent acceptability and feasibility experience in a large Type 1 diabetes mellitus behavioural trial.

Using an 18-month, multisite randomized control trial as an exemplar, the aim of this study was to identify themes related to adolescent and parental feasibility and acceptability for participation in large behavioural trials designed to improve adolescents' Type 1 diabetes self-management. Thematic analysis methodology was used to develop themes describing factors related to acceptability and feasibility. Based on a sample of interviews (N=72), factors contributing to intervention acceptability and feasibility were identified. Aspects of acceptability included: a framework for goal-setting, the coach as a non-judgemental listener, perception of an ongoing benefit to participation and the delivery mode. Aspects of feasibility included: participants' altruism to help adolescents with Type 1 diabetes; pre-enrolment preparation for intervention content and duration; and the option of remote intervention delivery via telephone or video, which minimized travel time and costs. In addition, participants described positive outcomes including improvements in behaviour, Type 1 diabetes self-management behaviours and parent-adolescent communication, and emotion-attitude changes. Participants also described potential revisions that may inform future trials. Acceptability and feasibility of behavioural interventions with adolescents with chronic illness have multifactorial dimensions. While empowering adolescent self-management, parental support is also an under-appreciated aspect to consider. Potential revisions were identified for subsequent behavioural trials.

Pediatric Chronic Illness Management: A Qualitative Dyadic Analysis of Adolescent Patient and Parent Illness Narratives.

In pediatric chronic illness, little is known about the relational interactions between adolescent patients, parents, and illnesses and how they influence self-management of illness. We conducted interviews with 32 individuals (16 dyads) representing adolescents diagnosed with a chronic illness and their primary parent who had been referred to a psychosocial treatment program for challenges with illness management. Interviews were conducted individually and analyzed dyadically using grounded theory to better understand the relational processes that may be contributing to illness management difficulties. Results include a theory of patient-parent illness responses and how parental illness meanings play a role in adolescent self-management. Results can be used to better understand and treat family relational patterns that may be influencing pediatric illness management challenges.

Experiences of Adolescents and Emerging Adults Living With Type 1 Diabetes.

Purpose The purpose of this study was to identify barriers to adherence in type 1 diabetes through adolescent focus groups and to use this information to determine how diabetes educators can have a positive impact on their patients’ diabetes management. Methods Two focus groups were conducted with adolescents and young adults (n = 11) ages 17 to 21 with type 1 diabetes. A focus group script, which consisted of 4 open-ended questions about diabetes care and challenges associated with management of diabetes, was used to elicit discussion. The focus group transcripts were coded and analyzed using the inductive-deductive approach. Results Participants described unique barriers to and facilitators of self-care behaviors in their management of type 1 diabetes. A conceptual framework was developed to describe adherence to self-management in adolescents with type 1 diabetes. Biological, psychological, and environmental situational influences emerged that influence self-care behaviors. In addition, facilitators of self-care behaviors, including the health system and diabetes education, were identified, and together the interaction between situational influences, facilitators, and self-care behaviors influenced adherence to diabetes treatment. Conclusions The conceptual framework based on these focus groups may help diabetes educators assess and address barriers to self-care behaviors in adolescents and young adults with type 1 diabetes.

Systematic review of sociodemographic representation and cultural responsiveness in psychosocial and behavioral interventions with adolescents with type 1 diabetes.

The increasing incidence of type 1 diabetes (T1D) in youth aged less than 20 years in the USA is a mounting public health concern. Specific sociodemographic characteristics-racial/ethnic minority, low socioeconomic status (SES), single-parent home and underinsured-have been associated with increased risk for poor glycemic control and poor self-management in adolescents with T1D. Sample demographic and cultural responsiveness methods in psychosocial and behavioral interventions focused on improving self-management and glycemic control in adolescents with T1D were systematically evaluated, to identify if studies were targeting these high-risk groups. Keyword searches of PsychInfo, PubMed and CINAHL identified 259 studies published between 2006 and 2016, of adolescents (13-18 years old) with T1D; 28 studies met inclusion criteria. Samples focused predominantly on White adolescents with fair glycemic control, from middle-high income, two-parent households with private insurance. The majority of studies scored poorly in cultural responsiveness and moderately in culturally responsive reporting. Studies lacked descriptions of culturally inclusive recruitment and sampling methods, and use of culturally responsive assessments for diverse groups. The majority of studies recruited and enrolled homogeneous adolescent samples from the lowest risk groups. T1D intervention researchers must increase targeted recruitment and sampling methods to include more high-risk pediatric T1D groups, expand sociodemographic reporting, and increase the use of culturally responsive recruitment and sampling methods, such as those used in community-based participatory research. Such efforts have the potential to reduce T1D disparities by making interventions more relevant to the unique needs, goals and priorities of highest risk groups.

Perceptions of HIV Self-Management Roles and Challenges in Adolescents, Caregivers, and Health Care Providers.

Self-management of HIV is a desirable goal for the millions of adolescent persons living with HIV (PLWH). Adolescent PLWH continue to experience poor HIV care outcomes, primarily due to poor rates of medication adherence and retention in care, highlighting a need to develop adolescent self-management skills. The aim of our study was to examine adolescent, caregiver, and health care provider perceptions of adolescent PLWH self-management roles, barriers, and facilitators. Swendeman et al.'s self-management framework for chronic diseases guided the analyses. Participant narratives highlighted perceptions of their responsibilities and related challenges with regard to self-management of HIV by adolescents. Our findings highlighted the complexity of HIV self-management for adolescents and underscored the need for multifaceted programs to strengthen adolescent-caregiver-health care provider partnerships in order to improve adolescent PLWH health and wellbeing.

Perceptions of HIV Self-Management Roles and Challenges in Adolescents, Caregivers, and Health Care Providers.

Self-management of HIV is a desirable goal for the millions of adolescent persons living with HIV (PLWH). Adolescent PLWH continue to experience poor HIV care outcomes, primarily due to poor rates of medication adherence and retention in care, highlighting a need to develop adolescent self-management skills. The aim of our study was to examine adolescent, caregiver, and health care provider perceptions of adolescent PLWH self-management roles, barriers, and facilitators. Swendeman et al.'s self-management framework for chronic diseases guided the analyses. Participant narratives highlighted perceptions of their responsibilities and related challenges with regard to self-management of HIV by adolescents. Our findings highlighted the complexity of HIV self-management for adolescents and underscored the need for multifaceted programs to strengthen adolescent-caregiver-health care provider partnerships in order to improve adolescent PLWH health and wellbeing.

Диагностика и прогноз самоуправления подростка

Диагностика и прогноз самоуправления подростка

FACTORS ASSOCIATED WITH REMAINING FREE FROM FUNCTIONAL LIMITATIONS DESPITE SOCIOECONOMIC ADVERSITY

AbstractThis study aimed to identify factors that protect individuals exposed to lifelong socioeconomic adversity from developing functional limitations in old age. Data from 1,973 participants in the MRC National Survey of Health and Development (United Kingdom) were used. Functional Limitations was defined as experiencing difficulty with any daily activity. Socioeconomic adversity had three levels based on life course trajectories. We compared psychosocial factors and health-related behaviours between a “resilient” group (high adversity but no functional limitations) and five groups with other combinations of adversity and limitations. Compared to other individuals with high adversity, resilient individuals had higher adolescent self-management, a lower likelihood of smoking, obesity, and childhood illness, and were more often physically active. Marital status and contact frequency were not associated with resilience. Results suggest that a combination of psychological and behavioural characteristics across life is required to be physically resilient in the face of socioeconomic adversity.

Smartphone Applications for Encouraging Asthma Self-Management in Adolescents: A Systematic Review.

Adolescent asthma is still a major problem with poor adherence to treatment. Globally, adolescents are devoted users of smartphone technologies and app use in asthma self-management may improve adherence. The objective of this systematic review is to assess the feasibility and efficacy of mobile technology in improving asthma outcomes in adolescents. We conducted an extensive review of the peer-review literature of studies with populations consisting of children and adolescents under 18 years in seven bibliographic databases and Google Scholar. All study designs were considered. Quality assessment of included studies were independently assessed and reported. The search identified 291 articles; of the 16 eligible full-text papers, 8 met the review criteria, reporting two interventional, two qualitative and four observational studies. Samples ranged from 12 to 21 participants. Heterogeneity related to study design and the methods of the included studies prevented meta-analysis. Nevertheless, the intervention studies reported a positive effect of smartphone apps on asthma control, medication adherence and self-efficacy. Smartphone apps may be an effective asthma control tool especially among adolescents who are major users of smartphones; however, conclusions are limited by a lack of controlled trials and adequate sample sizes.

Using a Heuristic App to Improve Symptom Self-Management in Adolescents and Young Adults with Cancer.

Adolescents and young adults (AYAs) with cancer need self-management strategies to cope with multiple symptoms. Self-efficacy, self-regulation, and negotiated collaboration are key theoretical components of the self-management process and have not been fully explored with AYAs with cancer. This study examined the effects of a heuristic symptom assessment tool on AYAs' self-efficacy for symptom management, AYAs' self-regulation abilities related to their symptoms, and communication with their providers about symptoms. AYAs (15-29 years of age) receiving chemotherapy used the Computerized Symptom Capture Assessment Tool (C-SCAT) to illustrate their symptom experience and discuss their symptoms with providers during two clinic visits. Participants completed the PROMIS Self-efficacy for Managing Symptoms Scale, a measure of satisfaction with provider communication, and a short interview about self-regulation and communication behaviors at baseline and after each provider visit. Eighty-five AYAs who used the C-SCAT showed improved self-efficacy for managing symptoms. Qualitative data suggest that the C-SCAT was useful for enhancing a number of AYAs' self-regulation abilities related to symptom management, such as awareness and recall of symptoms, how symptoms were related, and how they planned to talk about their symptoms to providers. AYAs reported C-SCAT facilitated communication with providers about symptoms and symptom management because it was a visual prompt showing priority and related symptoms. Because AYAs continue to experience multiple distressing symptoms, symptom self-management remains an important area for practice and research. Use of heuristic tools, such as the C-SCAT, may help AYAs more effectively self-manage their symptoms for better health outcomes.