‘Struggling to participate in everyday life’: emerging adults’ experiences of living with long-term health challenges (original) (raw)
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Involvement in everyday life for people with a life threatening illness
Palliative and Supportive Care, 2010
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Journal of Adolescent Health, 2014
Typical childhood and adolescent development and acquiring self-management skills are crucial for a satisfying adult life and autonomy in social participation. The aims of this study were to identify patterns of autonomy in social participation and to explore differences between these patterns. Adolescents with various chronic conditions participating in a survey in 2006 (T0) were re-invited for a follow-up study (T1) in 2012. The young adults (18-25 years of age) assessed self-management skills, their condition's impact on school or work, health-related quality of life (HRQoL), and social participation in various domains. Patterns were identified through cluster analysis. Differences between patterns were analyzed in bivariate and multivariate analyses. Compared with healthy age-mates, our sample (n = 483) generally lagged behind in social participation. Four patterns emerged: typical developers, financially secure laggers, slow developers, and outgoing laggers. The patterns differed regarding gender, educational level, attending special education, having disability benefits, and degree of physical limitations. Groups with a higher level of autonomy in social participation did not necessarily have higher HRQoL but did report higher self-efficacy and independence at both measurements. Autonomy in some participation domains can coincide with a lack of autonomy in others. In addition, better social participation does not necessarily correlate with higher HRQoL, or vice versa. Yet, more social participation was associated with more self-efficacy and independence. Our results emphasize that there is no standardized approach. Clinicians should take care to address all life areas in clinical practice to screen patients' lived experiences and the need for social and self-management support.
2019
Background: There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. The scant literature that is available has methodological limitations, including not listening to the voice of YAs, collecting data retrospectively, at one time point, from one group’s perspective and single case studies. The aim of this study was to address the gaps found in our literature review and provide a clearer understanding of the multiple and multi-dimensional life transitions experienced by YAs and significant others, over a period of time. Methods: This qualitative study used a longitudinal design and data were collected using semi-structured interviews over a 6-month period at 3 time points. Participants included 12 YAs with life-limiting conditions and their nominated significant others (10 family members and 11 professionals). Data were analysed using a thematic analysis approach. Results: Life transitions of Y...
Everyday Life and Wellbeing among the Oldest Elderly in Norway—A Qualitative Study
Open Journal of Social Sciences
Background: Demographic changes in the European countries are resulting in an increase in the proportion of elderly. The life conditions and mental health of older people are fields with insufficient knowledge. Demographical changes, socioeconomic factors, as well as urban-rural dimensions affect their situation and demand multifactorial developmental approaches. This is also in line with the emerging gerontological theory of gerotranscendence. There has been a tendency to see the elderly as a homogeneous group, an idea that is challenged by recent research on the "third" and "fourth" age. The everyday life and health of older people-particularly in relation to their mental health-are thus affected by many different circumstances and developments in society, which also interact with each other in complex patterns. Objectives: To develop a deeper understanding of how older people experience, regard and describe their life situation and mental health in urban and rural areas. Method: A descriptive and exploratory qualitative study, where elderly older than 80 in rural and urban areas in Norway were interviewed. In total, 23 interviews were completed (7 men, 16 women, 83 to 94 years old). The data were analyzed by means of a qualitative content analysis. Results: The analysis shows some differences between the two geographical areas, and gerotranscendence can be recognized. The main findings are analyzed as six themes: Satisfaction and enjoying life as a basic mood, An organized everyday life, built on activities. To manage on your own is of utmost importance. Strategies to handle hardships and challenges, an indispensable social network, and trust in the welfare state, however sometimes are conditioned. Conclusions: People in the "fourth age", interviewed in this study have developed strategies to handle their everyday life and experience wellbeing. The empirical findings seem to be well in line with the theory of gerotranscendence. Urban-rural differences are found to be limited and related to the individual's life stories.
International Journal of Qualitative Studies on Health and Well-being
Purpose: The aim of this study was to explore how young people in Sweden who neither work nor study perceive life experiences in relation to health and well-being. Methods: A task-based interview technique was used and data was analysed with qualitative content analysis. Interviews were conducted with 16 participants aged 16-20 who were unemployed and not eligible for upper secondary school, or who had dropped out of school. Results: Three themes emerged from the analysis illustrating how the young people perceive their life experiences in relation to health and well-being: Struggling with hardships in the absence of caring connections, Feeling good when closely connected to others, and Being forced to question what has been taken for granted. Each theme consists of 2-3 subthemes. Conclusion: Based on the young people's narrated experiences health can be understood as: something that is created in relation to others and in relation to the social and cultural context; as something dynamic and changeable; as the ability to adapt and respond to challenges; and finally as something existing on a collective as well as an individual level. Implications for school, social services and health promotion initiatives are discussed, with an emphasis on working with young people.
2014
As the Nordic welfare states evolve – with ideologies that focus on an increased consumption of health services – citizens are required to be productive throughout their life course. And because fewer economic resources are being invested into basic health care, and there is a move to shift more responsibility onto the individual (patient), it is becoming essential to illuminate practices that showcase the creative ways that people engage in self-care and agency in everyday-life. This conference aims to discuss how to develop new perspectives on health and illness in the Nordic welfare states. The emphasis will be on creativity and ableism as key elements in people’s and patients’ constructions of meaning, especially with regard to questions about health and rehabilitation. Among other things, the concept of creativity encompasses energy, liveliness, artfulness and agency – on both an individual and a collective level. Moreover, creativity refers to activities that are performed and...
The experience of illness and employment among young adults with a long-term condition
2008
Employment is currently conceived by the UK government as a panacea for achieving social justice among disadvantaged groups in society. Welfare to work policies are being introduced to increase the employment rates of people with illhealth and/or disability. There is little research on how individuals with chronic illness from childhood fare in the labour market as an adult and the perceptions of these groups towards work and career prospects. A qualitative study was undertaken using grounded theory to explore these issues among adults from three disease categories. In total, 30 respondents were interviewed aged between 20-32 years; 10 with cystic fibrosis, 10 with Type 1 diabetes and 10 with arthritis with gender represented equally across the three groups. Respondents had varying degrees of disease severity. There was, however, a consensus among these young adults in how symptoms were experienced and managed. Respondents viewed themselves as competent individuals and their approac...
Health Expectations
A long-term condition (LTC), or chronic illness, is any ongoing health condition that can be controlled but not cured and requires individuals to self-manage complex symptoms and treatments. 1 Self-management refers to the ability to manage symptoms, treatments, lifestyle changes and psychosocial consequences of an LTC and is considered important in improving health and well-being outcomes. When it comes to defining young adulthood, the age range varies according to the chosen perspective. We have chosen to adhere to Erikson's stages of psychosocial development, 2,3 whereby young adulthood comprises ages 18-40. Young adulthood is considered