“It was definitely for a purpose that I was born this way”: Lived experiences of adolescents with chronic illness

PROTOCOL: Education Support Services for Improving School Engagement and Academic Performance of Children and Adolescents with a Chronic Health Condition: A Systematic Review

Putting Adolescent Health at the Heart of Pediatrics

The purpose of this scoping review was to describe and map the literature available on the participation of young people (0-21y) with disabilities and/or chronic conditions living in low- and middle-income countries (LMICs). A systematic search and selection process identified 78 publications. Descriptive data were extracted using a data-charting form, and studies were mapped using the family of participation-related constructs framework. The findings demonstrated that, although the published evidence is steadily increasing, the participation research on this vulnerable population is still either absent or very scarce in the majority of LMICs, and very little is known about the participation of children with chronic health conditions. Most studies included in this review focused on attendance or 'being there'. Although attendance is an important aspect, more needs to be done to understand children's experiences or involvement while attending, thus capturing both dimensions of participation. There is an increasing trend in research on participation patterns of children with disabilities in low- and middle-income countries. Most research focuses on children's attendance, or 'being there'. We know very little about children's involvement, or experience, while attending daily activities.

Sexual Dysfunction in Primary Care: An Exploratory Descriptive Analysis of Medical Record Diagnoses

Children with chronic illness

The importance of and necessity for psychological interventions with children with chronic physical illness stem from several sources. First, chronic physical illness affects large numbers of children and families. Depending on how a chronic condition is defined, estimates of affected children vary from 5% to 30% (Newacheck & Taylor, 1992). For the purpose of this chapter, a chronic or ongoing health condition is defined as one that lasts a year or longer and requires specialized treatments, technologies and/or causes limitations of function, activities, or social roles, compared with physically healthy peers (Stein, Bauman, Westbrook, Coupey, & Ireys, 1993). Second, a chronic illness and its treatment place significant physical and psychological burdens on children and families that affect the quality of their lives, including their mental health. Although children demonstrate a wide range of psychological adjustment patterns to their chronic conditions (Drotar, 1981; Drotar & Bush, 1985), the heightened risk to the child’s mental health associated with chronic conditions is relatively well documented. For example, population-based studies such as the Ontario Health Study have reported a threefold risk of mental health and social problems among children with chronic physical illness, especially among those who also have physical disabilities (Cadman, Boyle, Szatmari, & Offord, 1997). Meta-analyses have also indicated an elevated risk for mental health disorders, especially internalizing problems, among children with a chronic illness (Lavigne & Faier-Routman, 1992).KeywordsMental HealthCystic FibrosisChronic IllnessPsychological InterventionMental Health InterventionThese keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Association between transition readiness and mental health comorbidity in youth with chronic health conditions

Individuals living with chronic physical health conditions are more likely to be out-of-work than other groups. Often framed as a ‘response’ to these statistics, many countries have introduced policy instruments for promoting the employment of individuals with chronic conditions. This qualitative study sought to explore the impact of welfare reforms on UK individuals. Employing a phenomenological approach, semi-structured interviews were conducted with five participants living with chronic conditions. Three themes were generated using Interpretative Phenomenological Analysis: ‘intersubjective sense making of the condition’; ‘battles for control’ and ‘the fluidity and strengthening of identity’. Implications for further, holistic, policy reform are explored.

Although literature that addresses the treatment of sexuality for the majority population has been written within the field of social work and other disciplines, little attention has been paid to the sexuality issues of individuals with chronic health conditions in mainstream social work journals. A literature search of Social Work Abstracts from 1977 to 2004 revealed only 44 articles addressing sexual dysfunction. One publication, The Journal of Social Work and Human Sexuality, was dedicated to the area of sexuality from 1982 to 1993, when it discontinued publication. During its 10-year publication history, only two issues were devoted to the sexuality issues of individuals with chronic health conditions. The purpose of this article is to provide social workers with information about the PLISSIT model (Annon, 1974), the state-of-the art intervention used for the treatment of sexuality issues (McCarthy, 2001; Borelli-Kerner & Bernell, 1997), and one that we have used in our professional social work practice with individuals who have chronic health conditions. A DEFINITION OF CHRONIC HEALTH CONDITIONS Chronic medical conditions are defined using Rolland's (1994) psychosocial typology of illness, which includes the following four characteristics: (1) the onset of illness is acute or gradual; (2) the illness is progressive, chronic, or relapsing; (3) the illness may be nonfatal, shorten life span, or cause sudden death; and (4) the levels of incapacitation can vary. Defining chronic health conditions using these four broad patterns allows for the inclusion of traumatic onset disabilities, such as spinal cord injury, and disabilities associated with certain chronic conditions, such as diabetes, as well as chronic conditions that are life threatening, stable, or progressive, such as cancer, low back pain, or multiple sclerosis. SOCIAL WORK INTERVENTION: PLISSIT MODEL Despite a lack of empirical evidence, the PLISSIT model has been consistently identified in the literature as helping people with disabilities or chronic illnesses who have sexuality issues, even though the model was not developed specifically for this population (Sipski & Alexander, 1997; Westgren & Levi, 1999). However, there has not been an explicit rendition of using the PLISSIT model with this population in social work journals. PLISSIT stands for the four levels of intervention: (1) Permission Giving, (2) Limited Information, (3) Specific Suggestions, and (4) Intensive Therapy. Each level of treatment builds on the previous one, and a therapist can move back and forth between the levels of treatment. As treatment moves from level to level, the degree of skill required of the clinician increases as does the intensity of work with the client. The PLISSIT model is applicable to individuals with heterosexual and homosexual orientations because the interventions are specific to the client, the chronic health condition, and the sexual concern of the client and the client's partner. Level 1: Permission Giving The social worker gives the client permission to talk about sexuality through the use of statements that normalize the discussion and invite the client to ask questions. During the usual assessment process, the social worker may probe, We have discussed a number of areas in which your condition has disrupted your life. Many people find that their sexual life has also changed. Have you experienced any changes in your sex life that you would like to discuss? When a client initiates a discussion, the clinician responds with a permission-giving statement that assures the client that these issues are important and gives the client general information always to adapt his or her sex life to the chronic condition. Level 2: Limited Information A greater degree of comfort is necessary on the part of the social worker at level 2 because the client is given information directly related to the sexual concern identified. …

This large (>1000) cross-sectional study investigates patient-reported primary care experiences of older people with chronic illness. Previous research has found that approximately half of patients with chronic illness receive optimal chronic illness care and outcomes in Australian general practice. A survey was administered via a double opt-in panel method to people aged ≥55 years who have one or more self-reported major chronic diseases (diabetes and/or chronic heart, kidney, lung, mental health and/or musculoskeletal conditions). Health professionals were found to be important to the majority of Australians surveyed. Well-known chronic illness support resources such as care plans and recalls/reminders were reported to be wanting by up to 50 per cent of respondents. Across all chronic illness groups, <42 per cent of respondents reported the provision of information on community resources and 25 per cent reported not having a sound understanding about their medications. Regular local surveys for older people with chronic illness would allow a timely understanding of primary care experiences, needs and preferences of this group, to support quality improvement and drive enhanced patient outcomes.

PurposeThe purpose of this paper is to consider mental health issues in children and adolescents with chronic illness or health conditions, including their treatment, and issues related to delivery of services.Design/methodology/approachA selective review of the literature was conducted to highlight significant mental health issues and their treatment in youth with various types of chronic illness.FindingsA significant portion of youth experience mental health problems related to their chronic health conditions. While evidence-based treatments are available to address these problems, significant barriers exist that impede the delivery of psychological and behavioral interventions for many youth.Research limitations/implicationsMore controlled studies are needed to demonstrate the effectiveness and cost offset of delivering psychological and behavioral interventions for the population of youth with various types of chronic health conditions, particularly in clinical and community settings.Social implicationsPolicy reform can ensure that mental health issues are effectively addressed for children with chronic illness. Policy is needed that promotes integrated health care, whereby psychological and behavioral interventions are delivered in health care settings along with medical interventions to reduce barriers to care.Originality/valueSignificant numbers of children and adolescents have chronic health conditions and many experience mental health problems related to their conditions. While evidence-based treatments are available to address these problems, significant barriers impede the delivery of psychological and behavioral interventions for many youth. Health care policy promoting integrated health care to deliver psychological and behavioral interventions in health care settings along with medical interventions should reduce barriers to care and improve both physical and mental health outcomes for youth.

PurposeThe purpose of this research is to understand how people living with chronic illness understand their healthcare needs, particularly as they can be disrupted by natural hazards events (e.g. earthquakes, flooding and landslides), which can result in chronic health conditions becoming acute. Research has shown that, because of such disruption, people with chronic illness face the greatest risk of adverse health outcomes during a disaster, placing significant demand on healthcare systems.Design/methodology/approachThe research draws on a narrative analysis of in-depth, semi-structured interviews with eight people who have a chronic illness and live in a hazard-prone location, namely Petone, Lower Hutt, Aotearoa New Zealand.FindingsTwo major narrative themes were identified: “Social Capital”, which included the three subthemes of community, social connection and support and family and friends. Tellers also experienced a strong sense of “Independence”, as demonstrated through seven subthemes that included declaration, defiance, rules, experience, acceptance, responsibility, self-surveillance and self-management.Practical implicationsPractice output from this research includes the development of fit for purpose emergency management policies and other educational resources to ensure equity, access and choice for people with a chronic illness and their communities.Social implicationsThis research produces in-depth knowledge and insight into the preparedness and response needs of people who live with a chronic illness. This is an under-research area in disaster management in Aotearoa New Zealand.Originality/valueRoutine medical treatment for people living with chronic illness can be disrupted by natural hazard events (e.g. earthquakes, flooding and landslides), which can result in chronic health conditions becoming acute. Research has shown that, because of such disruption, the chronically ill face the greatest risk of adverse health outcomes during a disaster, placing significant demand on healthcare. This research investigates how people living with chronic illness experience disaster preparedness and response while residing in a hazard-prone location, namely Petone, Lower Hutt, Aotearoa New Zealand. The study argues that it is imperative to acknowledge the experiences of people with chronic illness as they provide specific insights into their needs during a disaster.

Anxiety associated with chronic health conditions is a serious comorbidity with implications for health promotion and quality of life in adults with chronic illness. Thus there is value in identifying personal resources that may protect against anxiety. A recent concept that may meet this definition is that of emotional intelligence (EI). It was hypothesized that EI moderates anxiety levels among individuals with chronic conditions. A sample of 268 women living in Israel was recruited for this preliminary investigation (208 without a chronic condition, 60 with a diagnosed chronic illness such as high blood pressure or diabetes). Participants completed validated measures of anxiety and EI and provided health and demographic information. The evidence supported the hypothesized moderating effect of EI on level of anxiety in individuals with and without chronic conditions. While a simple comparison showed that individuals with chronic conditions reported higher levels of anxiety than their peers without a chronic condition, EI and the interaction term of EI and health condition showed a significant effect on anxiety, nullifying the simple effect of health condition. This preliminary study supports the potential role of EI in the experience of anxiety among individuals with a chronic health condition. Should future research support these findings, screening for at-risk populations as well as future interventions may be developed to improve quality of life for individuals coping with chronic illness.

Bush Tries to Make HSAs Appealing to Chronically Ill

Incorporating Academic and Health-Related School Needs into Pediatric Nursing Practice