Adolescents’ experiences of well‐being when living with a long‐term illness or disability

Abstract

Present-day society has produced changes in family living patterns and conditions and this has resulted in new stressors and health problems. Most children and adolescents with chronic diseases and disabilities, who were previously cared for at hospitals and institutions for long periods, are now integrated in society and they are expected to live a normal life in the conditions that currently prevail. The number of young people with long-term illnesses/disability has increased worldwide during the last decades. There is lack of studies relating to the way young people regard their daily lives and factors that are important for their well-being. The aim of this study was to describe the meaning of feeling good in daily life in adolescents living with a long-term illness or disability. Eight boys and seven girls, aged between 12 and 19 years, with different conditions of long-term illness or disability, participated in the study. Tape-recorded interviews were conducted between the years 2003-2004 and the data were analysed using content analysis. The results revealed that the adolescents with long-term illness generally experienced well-being like everybody else. Three themes were found to be important in order to feel good: 'a feeling of acceptance of illness/disability as a natural part of life', 'a feeling of support' and 'a feeling of personal growth'. This study concludes that adolescents with long-term illness or disabilities experience well-being when they are allowed to prepare for living a normal life integrated in society.

Strategies to improve quality of life in adolescents with inflammatory bowel disease

“…Adolescents who have the best adjustment to chronic illness have developed coping strategies to: 1) accept illness/disability as a natural part of life; 2) feel supported; and 3) experience the feeling of personal growth. 104 IBD is a lifelong illness that can impact daily lives as well as attitudes, fears, and beliefs. Effective medical and surgical treatments, coupled with targeted social and psychological intervention for at-risk adolescents, can significantly improve HRQOL.…”

The Experiences of Medically Fragile Adolescents Who Require Respiratory Assistance

“…Previous studies have described the limitations in activities that having a chronic illness presents in adolescence (Beaune et al, 2004;Berntsson et al, 2007;Eklund & Sivberg, 2003), however, participants this study present that the adolescents participants adapt to situations in order to minimize the limitations and maximize their participation in activities. Adolescents with cerebral palsy also described different ways of participating (Davis et al, 2009).…”

“…There is also evidence of goals for independent living and the notion of transitioning to adulthood. Adolescents living with a long-term illness or disability had beliefs in the future that were positive (Berntsson et al, 2007), whereas adolescents with cerebral palsy and their parents expressed concerns and worries about the future (Davis et al, 2009). Future plans may be a dichotomy of hopefulness and worry for adolescents with chronic illness, however, for these adolescent participants, they see themselves with a future that includes independent living.…”

“…Spratling et al (in press) found that friends were a significant source of companionship and simply someone to be there with them in a study of children with a tracheostomy. Berntsson et al (2007) found that being with friends was important to adolescents living with a longterm illness or disability. This was equated with feelings of support, independence, and spontaneity (Berntsson et al).…”

Quality of Life and Self-Efficacy of Adolescents with Chronic Health Conditions

“…The prevalence of CHC in Sweden for adolescents aged to 14-18 years old has increased from 8.6% to 16.4% during the last 20 years. It is believed that the reason for this increase may be better medical care of childhood conditions and increase in recollection of behavioral, developmental, and sentimental conditions during both childhood and adolescence 2 . The biological, physical, and psycho-social changes in adolescents may affect the course of CHC, as CHC could influence puberty development occurred in this period.…”