Over the past several decades the number of youth living with a chronic health condition has drastically increased. A chronic health condition can be defined as an illness that lasts three months or more that can be controlled but not cured (Centers for Disease Control and Prevention [CDC], 2010). Although there is existing literature on youth with chronic health conditions, there are very few studies that examine the levels of health literacy, resiliency and support/advocacy within this population. The current study is a secondary analysis that utilized data collected from the 37-item Youth Health Literacy and Resiliency Scale (HLRS-Y version) in order to determine if there was a relationship between different categories of chronic health conditions and reported levels of health literacy, resiliency and support/advocacy. Ages of participants were also examined to determine if there was an interaction effect. The study consisted of a 143 youth between the ages of 13- 21 years old. All participants completed the Youth Health Literacy and Resiliency Scale (Bradley-Klug, Shaffer-Hudkins, Lynn, DeLoatche, & Montgomery, 2017) and were placed into one of three categories of chronic health condition: 1) Endocrine, nutritional, and metabolic diseases, 2) Diseases of the musculoskeletal system and connective tissue, and 3) Diseases of congenital malformation, deformations, and chromosomal abnormalities. The data were analyzed to determine if there was a difference in the reported constructs of health literacy, resiliency and support/self-advocacy among the three different categories of chronic health illnesses. The results indicated that there was a significant relation between support/self-advocacy and age. As participants increased in age, they reported having lower levels of support/self-advocacy. This finding was significant regardless of the category of chronic health condition that the participants were placed in. There were no other significant findings for the other constructs. This study contributes to the literature because it is one of few to examine health literacy, resiliency and support/self-advocacy levels among youth with chronic health conditions. In addition, it is the first study aside from the pilot, to utilize the HLRS. The findings from this study can be utilized to drive support/self-advocacy interventions for youth with chronic health conditions.

This study was designed to further understand the psychosocial functioning of youth with chronic health conditions or physical disabilities, their need for and use of mental health services, and possible barriers to receiving needed services. Previous research has suggested these youth experience poorer psychosocial functioning compared to peers without special health care needs, and they also underutilize needed mental health services. A mixed-methods design was implemented consisting of a quantitative parent survey and a qualitative semistructured interview with young adults with special health care needs. Children demonstrating poorer psychosocial adjustment in this study experienced more problems related to social functioning than psychopathology (e.g., depression, anxiety). Over half of the youth had accessed mental health services with the majority utilizing community-based outpatient services. Identified barriers to accessing needed mental health services included difficulty finding professionals with experience in working with youth with special health care needs and lack of financial coverage.

This study sought to better understand the experiences of individuals with a chronic health condition utilizing telemedicine during the first twelve months of the COVID-19 pandemic. To do this, an online survey was advertised in two private Facebook support groups for individuals with adrenal insufficiency; a chronic health condition that requires frequent communication with healthcare providers. The survey consisted primarily of closed-response questions which examined the demographic data of respondents, their access to healthcare providers, their comfort levels accessing healthcare providers, and the number of times individuals sought healthcare during the first twelve months of the COVID-19 pandemic to try and predict their preference for telemedicine and in-person healthcare visits going forward. Additionally, the survey included open-response questions which allowed for respondents to describe their experience utilizing telemedicine during the first twelve months of the COVID-19 pandemic. Most respondents described their use of telemedicine as being positive but have indicated there are some health circumstances in which telemedicine may not be the best option for them. Additionally, findings indicate that individual's comfort level in visiting their healthcare providers in-person during that first year of the COVID-19 pandemic is a significant predictor of an individual's preference for telehealth. This gives future studies a starting point to investigate the driving social and health factors that shape an individual's perception of risk influencing their level of comfort and predicting their preference of telemedicine or in-person visits for their non-emergency healthcare needs.

By 2015, 149 million Americans are expected to be living with chronic health conditions (Anderson 2010). This number is expected to continue rising. Many chronic health conditions require those living with them to perform health self-management tasks on a regular basis. Nearly two in every five adults with one chronic condition and three out of every five adults with at least two chronic conditions track their health information. This paper investigates the use of mobile applications and the need to develop applications specifically designed for individuals living with chronic health conditions. Pew data are used to determine who is tracking their health information and how they are tracking it. Results from this analysis show that individuals with chronic health conditions have 69% greater odds of tracking health information than individuals who do not live with chronic conditions. Additionally, those with chronic conditions are 254% more likely than those without chronic conditions to track health indicators that are not related to diet, weight or exercise. These individuals are not, however, using mobile applications to track their health information. People with chronic health conditions have higher probabilities of tracking health information on paper or in their heads than their probability of tracking via a mobile application. However, the probability that individuals track health information via mobile apps increases when analyzing a subset of the population who own smartphones. After learning more about individuals with chronic conditions and their health information tracking habits, several mobile health applications are reviewed. The reviews of these applications include the features offered by the applications and their price. The paper concludes with several recommendations for developing and disseminating mobile health tracking applications to individuals with chronic conditions, as well as suggestions for future research. / text

The purpose of this research was to develop and test an instrument to measure or quantify the construct of inner strength. Inner strength was synthesized into a theory based on twelve years of qualitative data from direct participant quotes, defined by Roux et al. (2002) as a central human resource that promotes well-being and healing. The inner strength questionnaire (ISQ) has undergone extensive psychometric evaluation which resulted in several versions. The third version had 37-items and was believed to have four subscales that mirrored the theoretical themes that emerged through the qualitative data. The sample was composed of 281 women with a variety of chronic health conditions including breast cancer, multiple sclerosis, diabetes, and heart disease. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were employed to assess the structure of the ISQ. Internal consistency was used to assess the reliability of each hypothesized subscale and the entire ISQ. Convergent and discriminant validity, were analyzed using the multitrait-multimethod by Campbell and Fiske (1959). For convergent validity, the entire instrument and each of the subscales was correlated with similar theoretical subscales of the Mastery of Stress Instrument (Younger, 1993). For discriminant validity, the Center for Epidemiological Studies in Depression (CESD) was correlated with the entire ISQ. Both the EFA and CFA revealed a four factor model. The four factors were labeled 1) mental, 2) connectedness, 3) knowing and searching, 4) physical. The reliability for all items on the ISQ was 0.91. The reliabilities for each of the subscales were 0.85 for mental, 0.96 for connectedness, 0.85 for knowing and searching, and 0.83 for physical. The multitrait-multimethod matrix revealed correlation coefficients for the relationship between the ISQ and MSI to be 0.55 and a correlation coefficient of -0.19 between the ISQ and the CESD.A four factor model is supported by the statistical data. Through face-to-face interviewing and input from content expert reviewers, ten items were eliminated from the 37-item (version 3) instrument to form a new version of the instrument. The new instrument supports the metasynthesis generated by Roux (2002) except for the fifth theme, entitled "new normal", which was found to be a consequence of having inner strength, not a component of inner strength.

Chronic health problems are hypothesised to be a risk factor to child and adolescent mental health, due the consistent and continuing stress these health problems pose to normative patterns of development. However, this theory remains to be substantiated by empirical research. Moreover, a systematic review conducted as part of this research indicated that the empirical body is not one on which the validity of this theory can be adequately tested. The major question posed is whether the lack of high quality epidemiological data in the field is obscuring a true psychiatric risk associated with chronic illness in childhood and adolescence, or whether, in contrast, the theory of chronic health problems as a particular risk factor to child and adolescent mental health, is based on false premises. In order to provide a stronger insight into the association of chronic health problems to mental ill-health across the late childhood and adolescent period, this study used data from a large, representative British sample (the Avon Longitudinal Study of Parents and Children (ALSPAC)) and sensitive measures of mental health outcomes. Mediating factors in these associations were also identified, and a model of the association of chronic health problems to poor mental health outcomes in early adolescence was developed. In order to ensure that all findings were applicable across chronic health conditions, outcomes over this period for children with chronic illness more generally were compared to outcomes for children with asthma diagnoses. Children with chronic health problems presented with a disproportionate rate of psychiatric illness at 10 years, and these chronic health problems continued to be associated with poor mental health outcomes across the early to mid-adolescent period. The outcomes at 10 and 13 years were suggested to be mediated by factors non-specific to any diagnosis, specifically peer victimisation and health-related school absenteeism. Limitations to external validity in the research, and implications for public health and future research are discussed.

Baksidestext Barnmisshandel är ett omfattande folkhälsoproblem med långsiktiga negativa konsekvenser för den enskilda individen och för samhället i stort. Förebyggande insatser kan vara livsavgörande för de utsatta barnen. Denna avhandlings övergripande syfte var att öka kunskapen om barn som riskerar att fara illa i sin hemmiljö samt att identifiera utmaningar i ett förebyggande perspektiv. Två områden har studerats: (1) Våld mot barn med långvarig sjukdom/funktionsnedsättning (2) Förskolan som upptäckande och stödjande arena Gemensamt för inriktningarna är att barn med långvarig sjukdom/funktionsnedsättning och barn i förskoleåldern utgör särskilt sårbara grupper, som löper ökad risk att fara illa i sin hemmiljö. De har också unik kontakt med professionella med möjlighet att upptäcka och agera vid oro. Avhandlingen bygger på fyra delstudier; en nationell kartläggning riktad till skolelever, en intervjustudie med föräldrar samt två förskolestudier. Resultaten från studierna diskuteras utifrån identifierade utmaningar i ett förebyggande perspektiv. Utmaningarna inkluderar emotionella hinder samt behov av ett mer nyanserat och proaktivt förhållningssätt för att kunna utveckla tidiga insatser till barn och föräldrar. / The aim with this thesis was to increase the knowledge about children at risk of maltreatment and to identify challenges in a preventive perspective. Two areas have been studied; Physical abuse of children with chronic conditions/disabilities and Detection and support within the pre-school environment.  Four data sets were used: a national survey of school children (I), an in-depth interview study with parents (II) and two pre-school studies (III, IV). I-II: Chronic conditions in children increase the risk for physical abuse, but vary with socio-economic circumstances. The highest risk for physical abuse was found among children with chronic conditions born outside Sweden. The subsequent study revealed direct risk factors related to parent and child (emotional demands in precarious situations), and indirect risk factors related to parent and professional (gradual shift in responsibility and emotionally closed environment) and social norms (taboo on talking about abuse). III-IV: Preschool staff suspected child maltreatment for two percent of the preschool children. In less than half of the cases, the parents were informed and a report to social services was made in a third of the cases. The most common reason for not making a report was that the staff believed that the pre-school had sufficient resources to help the child. In the subsequent study, preschool teachers’ concerns about the child’s home environment were explored in a broader perspective over a one year period. The study showed that concern for the children’s home situation related to increased concern for several aspects of children’s health and development, increased need of special support in preschool, insufficient contact with parents, and lower parental socioeconomic status. The results are discussed according to identified challenges in a preventive perspective. These include emotional obstacles for prevention and a need for a more nuanced and proactive professional approach to enable early support to children at risk of maltreatment and their parents.

The purpose of this study was to evaluate the utility of the Adaptive Tasks Framework for assessing parental needs when providing primary care for their child with a chronic health condition. A qualitative descriptive methodology framed the study and two methods were employed to collect data: a secondary analysis of existing interview data from seven parents of children with chronic health conditions and interviews with four parents who were currently providing primary care for their child with a chronic health condition. The data was analyzed using content analysis, whereby interview data was explored to determine if it fit into one or more of the eight adaptive tasks categories. Parents reported needs in all of the eight adaptive tasks categories, with the need for information regarding their child's chronic health condition being the foremost concern among parents. The need for caring, empathetic, and patient health care professionals who are sympathetic to the informational needs of parents, while at the same time acknowledging their expertise, was the second need expressed by the parents in this study. Implications of these findings for nurses is that the Adaptive Tasks Framework provides a useful tool for assessing parental needs when managing their child's chronic health condition and for determining areas in which the parents may require support.

Thesis (M.A. (Biokinetics))--North-West University, Potchefstroom Campus, 2010.

Thesis (M.A. (Biokinetics))--North-West University, Potchefstroom Campus, 2010.