Young people and healthcare. Part 2: Experience of long term health conditions (original) (raw)
Related papers
Understanding young peoples' experience of chronic illness: a systematic review
International Journal of Evidence-Based Healthcare, 2008
Objective It has been reported that the diagnosis of a chronic illness increases a child's susceptibility to future mental health problems. Accordingly, the objective of the current review was to summarise the best available evidence that described a young person's experience of chronic illness and make recommendations towards the promotion of mental health and prevention of future mental health difficulties. Inclusion criteria The review considered qualitative research that used the voices of young people (under 18 years) to describe their experience of chronic illness and the impact it had on their lives. Search strategy The search strategy sought to find both published and unpublished research papers (limited to the English language). An extensive search was performed using the following databases: PubMed, CINAHL, Web of Science, PsycInfo, Aust Health, Dissertation Abstract International, Expanded Academic Index, Health Source Nursing, and Academic Search Elite. In addition, the reference lists of identified papers were hand searched, to capture all pertinent material, as well as relevant worldwide web sites. Methodological quality Each paper was assessed by two reviewers for methodological quality prior to inclusion in the review using the critical appraisal instrument (Qualitative Assessment and Review Instrument (QARI) ) from software developed by the Joanna Briggs Institute (JBI). Results A total of 18 qualitative papers were included in the review (nine grounded theory, six phenomenology, one ethnography, one social ecological, and one multiple case study). Forty-four papers were initially identified but 26 were excluded as they did not meet the inclusion criteria. Findings were extracted and meta-synthesised using JBI-QARI. Five syntheses about a young person's experience of chronic illness were derived: (i) the experience of chronic illness makes young people feel uncomfortable in their body and world; (ii) the experience of chronic illness disrupts 'normal' life; (iii) the experience of chronic illness is not all bad; (iv) ways of getting through the chronic illness experience, 'what others can do'; and (v) ways of getting through the chronic illness experience, 'what I can do'. Conclusion A positive perspective needs to be taken to promote mental health in young people with chronic illness; clinicians, families and interventions need to (i) bolster their sense of self; (ii) normalise the experience; (iii) foster its positive impact; (iv) help them accept the situation; and (v) help to develop the future-orientated coping strategies that will provide them with a sense of hope.
Daily experiences of children and adolescents with chronic illness and their families
inter-disciplinary.net
Approximately 20% of all children have a chronic illness and 65% suffer an illness severe enough to interfere with daily activities . Attending to the multiple contexts where children/adolescents live, particularly home, school and hospital, chronic illness may seriously limit the child and adolescent's everyday experiences. Recognizing that these children/adolescents and their families needs and rights are frequently at risk and admitting that there are physical, social and cultural barriers which must be broken in their interaction with various institutions, this paper focus on these families strategies and on the impact of associative communities as relevant contexts to improve their lives . In fact, these specific associations related to chronic diseases have an important role in exposing discrimination and generally affirming that equality "requires differential treatment based on differential needs to achieve the same relative capacity for participation and citizenship" (Stainton, 2005: 291). This paper considers the daily experiences of families with children and adolescents that have chronic illness using biographic narratives. As Telford and colleagues stress "rather than interpreting behaviour as denial and promoting acceptance as a desirable end point, we suggest actively listening to the stories people tell" (2006: 463), and including both the needs and resources of these families. Therefore, the aim of this paper is to understand the role of associative communities and other informal contexts in what concerns the promotion of adaptation to chronic illness in children/adolescents and their families. Specifically, we will explore the meaning of participation in chronic disease associations as well as the singularities of empowerment processes lived by these children/adolescents and their families.
Patient Preference and Adherence, 2018
Objectives: Although patient education is recommended to facilitate the transition from pediatric to adult care, a consensus has not been reached for a particular model. The specific skills needed for the transition to help in facilitating the life plans and health of young people are still poorly understood. This study explored the educational needs of young people with diverse chronic conditions during their transition from pediatric to adult care. Methods: Qualitative semi-structured interviews were conducted with 17 young people with chronic conditions. A thematic analysis was conducted to examine the data. Results: Five themes emerged from the data, identified through the following core topics: learning how to have a new role, learning how to adopt a new lifestyle, learning how to use a new health care service, maintaining a dual relationship with pediatric and adult care, and having experience sharing with peers. Conclusion: A shift in perspective takes place when the transition is examined through the words of young people themselves. To them, moving from pediatric to adult care is not viewed as the heart of the process. It is instead a change among other changes. In order to encourage a transition in which the needs of young people are met, educational measures could focus on the acquisition of broad skills, while also being person-centered.
“My Life in the Hospital”: Narratives of Children With a Medical Condition
Continuity in Education
Pediatric hospitalization is a common experience that may increase children's sense of isolation and impinge on their social-emotional wellbeing. Educators and medical practitioners could minimize these negative effects of hospitalization if they were able to listen to the voices of the children and, therefore, better meet their needs. This qualitative study provides an overview of how children with a medical condition actively construct and organize their thoughts and feelings about illness, life in hospital, and relationships. We extrapolated from a collection of children's narratives from a previous more comprehensive study (consisting of 379 narratives from children in 29 public hospitals across Italy, age range 3-14 years). Narratives grouped under the headings "Me and my illness" or "Me and the others" were selected and analyzed using interpretative phenomenological analysis (IPA) to identify the richness and complexity of children's experience. Results showed that children's description of their illness was affected both by cognitive and social factors. For children, the concept of feeling ill or well is not linked only to the fact that they are in hospital for a medical condition; rather, it is influenced by their ability to form relationships with others, play, be active, and feel alive within the hospital environment. Listening to narratives can deepen our understanding of children's illness-related experiences and how they make sense of their situation. A set of practice implications are presented to help health professionals and educators to improve their listening capabilities and better prevent adverse pediatric hospitalization outcomes.
Children with a Long-Term Illness: Parents' Experiences of Care
Journal of Pediatric Nursing, 2006
A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents' experiences with their child's illness and treatment and with their relationships with health professionals during the process of learning to care for their child. Data were collected by conducting open-ended interviews with parents (N = 11) whose child had been diagnosed with a physical long-term illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this.
Journal for Specialists in Pediatric Nursing
Most evidence relating to the experience of growing up with a long-term condition and the impact this may have on a child's expected developmental trajectory (Venning, Eliott, Wilson, & Kettler, 2008) is quantitative and addresses the perspectives of older children and adolescents (e.g., Smith, Taylor, Newbould, & Keady, 2008) with diabetes, asthma, cystic fibrosis and rheumatic conditions (see for example, Cartwright, Fraser,
10 Two Worlds, One Life: Narrative Spaces of Identity Between Health and Illness
This paper reports a component of a larger study about how adolescents adapt to chronic illness. The condition in question was Inflammatory Bowel Disease (IBD), a medical term for two conditions, ulcerative colitis and Crohn's disease. Ulcerations appear on the bowel and digestive organs, which result in urgency to defecate, rectal bleeding, abdominal pain and loss of energy.
Programme Grants for Applied Research
Background As young people with long-term conditions move from childhood to adulthood, their health may deteriorate and their social participation may reduce. ‘Transition’ is the ‘process’ that addresses the medical, psychosocial and educational needs of young people during this time. ‘Transfer’ is the ‘event’ when medical care moves from children’s to adults’ services. In a typical NHS Trust serving a population of 270,000, approximately 100 young people with long-term conditions requiring secondary care reach the age of 16 years each year. As transition extends over about 7 years, the number in transition at any time is approximately 700. Objectives Purpose – to promote the health and well-being of young people with long-term conditions by generating evidence to enable NHS commissioners and providers to facilitate successful health-care transition. Objectives – (1) to work with young people to determine what is important in their transitional health care, (2) to identify the effec...
Journal of Marital and Family Therapy, 2019
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 patientparent illness responses and how parental illness meanings play a role in adolescent selfmanagement. Results can be used to better understand and treat family relational patterns that may be influencing pediatric illness management challenges. The American Association of Pediatrics has called for the development of theories and interventions that consider the varied and complex ways that individual, family, and social levels of interaction impact pediatric patients' self-management of chronic conditions (Modi et al., 2012). Understanding these layered levels of interaction requires research that considers multiple family members' perspectives (Drotar, 2013). Because qualitative pediatric health research does not typically include multiple perspectives, little is known about how such interactions relate to difficulties with pediatric illness management. The objective of this study was to explore how the experiences and relationships of adolescent pediatric patients and parents may influence illness management. We explored these critical issues by drawing on qualitative data from interviews that elicited illness narratives of adolescent patients (13-17 years old) diagnosed with a chronic illness who were referred to an intensive outpatient treatment program due to their challenges with illness management and their primary parent who attended the treatment program. This paper provides a grounded theory analysis of the illness narratives of these parents and adolescent patients and the relational processes that influence illness management. BACKGROUND Pediatric Illness Management and Families Pediatric patients who successfully adhere to treatment are more likely to have improved functioning and quality of life, as well as delayed onset and progression of complications (Griva, Myers, & Newman, 2000; Rhee, Belyea, Ciurzynski, & Brasch, 2009). Self-management of an illness is considered successful when patients have mastered prescribed technical