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Research Report 1:
‘Living with chronic illness: A Grounded Theory study of adapting to chronic illness when diagnosed when young’.
Abstract
Objectives: To explore the subjective views of people who were diagnosed with a chronic illness when they were young, so as to widen an incipient body of qualitative literature around the experience of living with chronic illness.
Method: Taped, in-depth, semi-structured, qualitative interviews with six young women were transcribed verbatim and analysed using Grounded Theory methodology. Results: A theoretical understanding was developed of the experiences of people who were diagnosed with a chronic illness when they were young. The core concept described the experience of chronic illness as progressing towards a new normal and was related to three, interrelated, higher-order categories which were labelled new body, new life and seeking information.
Conclusions: This study contributed towards the development of a theoretical framework with which to understand how people who were diagnosed with a chronic illness when they were young adapt to living with chronic illnesses. Insights are provided into how illness influences their identity and development and potential clinical implications are discussed.
Introduction
Chronic illnesses are illnesses which are, at present, incurable and they are currently the leading cause of mortality, morbidity and disability worldwide (World Health Organisation (WHO), 2002). Medical advances allow many of these illnesses to be controlled to varying degrees, thus reducing the number of previously fatal illnesses and increasing life expectancy. However, as the incidence of chronic illness increases with age, increased life expectancy also means an increase in the likelihood of developing one or several chronic illnesses. Indeed, the incidence of chronic illnesses is increasing globally and is expected to be the main cause of disability by 2020 (WHO, 2002).
Chronic illnesses vary greatly in terms of symptoms, severity and progression. They can profoundly impact on essential life domains including education, employment, financial opportunities, social, family and romantic relationships (Lubkin & Larsen, 2006) and sexual functioning (Nusbaum, Hamilton & Lenahan, 2003). Many people with chronic illnesses may often also experience psychosocial distress, including body image dissatisfaction (BenrudLarson et al., 2003), anxiety, depression, cognitive strain, social isolation and adverse effects on self-esteem, self-concept and interpersonal relationships (Lubkin & Larsen, 2006). Additionally, chronic illness often involves adapting to an altered body, an uncertain ftiture, a restricted life and feeling like a burden (Charmaz, 1983). Regardless of the illness, being diagnosed with a chronic condition is usually life-changing, requiring the individual to leam to:
Given the early onset of some long-term conditions, the individuals who are diagnosed with them usually face a lifetime of illness. Additionally, they must negotiate more life stages and have more time ahead of them to adapt to living with the illness and to managing symptoms than someone older with a shorter life expectancy. It is estimated that 20-30% of adolescents in Western countries have chronic conditions (Yeo & Sawyer, 2005) which can negatively affect their functioning and autonomy at a stage where increasing independence is the developmental goal. Furthermore, an early diagnosis adds new facets to the social, biological, psychological, cognitive, and cultural challenges faced by young people as they navigate through adolescence and into adulthood (Boice, 1998). For instance, research suggests that young people with chronic conditions are at increased risk of mental health disorders, risk-taking behaviours and poor compliance with medication (Bums, Sadof & Kamat, 2006), as well as psychological difficulties such as body image (Larouche & Chin-Peuckert, 2006) and self-concept issues (Ferro & Boyle, 2013). Adolescents face developmental challenges such as the development of sexuality, independence, social identity, personal identity, body self-integrity and self- image as well as increasing responsibility for managing their conditions (Bums, et al., 2006; Sawyer, 2009). However, whilst managing a chronic condition while negotiating the transition into adulthood poses many challenges, it is not always an entirely negative experience. For instance, it can help young individuals to develop as a person, become more empathie or draw families together (e.g. Eiser, 1993; Venning, Eliott, Wilson, & Kettler, 2008), adding another layer of complexity to their experience.
Managing a chronic illness while progressing through different life stages may have implications for the fulfilment of developmental milestones and rites o f passage (Morgan, Davies, Palmer & Plaster, 2010), and for individuals’ experiences of illness which could inform theory and counselling psychologists’ therapeutic work with this client group. For instance, a diagnosis of chronic illness early in life could potentially impact on individuals’ experiences of navigating different life stages and how they develop or constmct their identity and sense o f purpose (Erikson, 1963).
Consequently, living with a chronic illness may influence the development of individuals’ interpersonal relationships (Hurtig & Park, 1989), their social identities, and how they experience their place in society (Tjafel & Turner, 1979). Iyer, Jetten, and Tsivrikos (2008) emphasise that life transitions usually involve changes to people’s identity and group membership. Indeed, being diagnosed with an illness early in life may also impact positively and negatively on young people’s developing sense of belonging to different social groups, identity processes and how their sense of function and meaning progress over time (Olsson et al., 2003).
Developing a chronic illness early in life usually results in the individual having to navigate more life stages while dealing with their illness and having more time for their perception of illness to develop, to adjust to changes in their life and to develop coping strategies. Retrospective accounts of what such processes entail could provide valuable insights to develop theory with which to inform therapeutic practice (Morse, 2001). Research so far has focused on the impact of chronic illness on young people and their families (Miles & Holditch-Davis, 2003). However, existing research tends to be quantitative and from epidemiological, sociological or nursing/medical perspectives. Miles and Holditch-Davis (2003) have stressed the need for in-depth person-centred, as opposed to variable-focused, research in order to enhance the quality of research. Similarly, Van Houdenhove (2002) underlines the valuable therapeutic clues which can be obtained by taking account of participants’ autobiographical stories. With regard to qualitative studies, which aim to provide a more in-depth understanding of phenomena, research has explored: parents’ and
research which adopts a psychological perspective or aims to inform psychological theory or practice is scarce.
Eiser (1993) stresses the importance of understanding, not only the psychological impact of illness, but how individuals’ perspective of the illness and its impact develops over time. Similarly, Kralik, Paterson and Coates (2010) emphasise the importance of acknowledging that over time, people living with chronic conditions develop “considerable experience and a level of expertise in managing their conditions” and that “this needs to be recognised and built upon in order to support wellbeing” (pp. 45-46). Although there is some research on children’s developing perspective of their conditions (e.g. Christian & D ’Auria, 1997), there is scant research exploring the perspectives of adolescents or of people who were diagnosed during adolescence. Successful and relevant interventions require a better understanding of how people who were diagnosed when they were young make sense of their experiences and adjust to them. Therefore, an exploration of chronic illness from the unique perspective of people who were diagnosed when they were young could shed a light on significant processes such as: their learning and adjustment processes, useful and required resources for living with illness, salient/relevant experiences, and the insights gleaned over the course of their illness, in order that we can better understand and help individuals facing similar challenges to manage their changing needs and the lasting implications of their conditions for their development.
Additionally, following a systematic review of psychosocial interventions for adolescents and young adults with chronic conditions, Samson-Daly, Peate, Wakefield, Bryant, and Cohn (2012) stress the need for intervention development which is grounded in theoretical frameworks. However, since many of the more common chronic illnesses affect mainly adults and older adults, there is not a wide breadth of research or a body of theory describing how people who are diagnosed when they are young experience chronic illness and how they adapt to the changes brought about by their illness in order to progress through life in a personally satisfying way. Therefore, a richer understanding is required of the relationship
between different aspects of the experience of being diagnosed with a chronic condition when young and of the different processes involved and how they change over time. This could contribute towards the development of a theoretical framework with which to understand the experiences of people adapting to chronic illnesses.
In light of the above, the aim of this research was to explore the subjective accounts of people who had experienced chronic illness since they were young, with the objective of contributing towards the development of a theory about living with chronic illness. A qualitative perspective was deemed suitable for this research, as it enables meanings, processes, contexts and unique personal accounts to be explored in detail, yielding new and in-depth insights into the experiences of people who were diagnosed with chronic illnesses when they were young. The study adopted a Grounded Theory (GT henceforth) approach to data collection and analysis. GT aims to develop theory which explains and describes processes and relationships. Given the dearth of research that accurately describes the experiences of people who were diagnosed when they were young and the need to develop a deeper understanding in this complex area, a methodology with an emphasis on generating theory was deemed appropriate. GT is an inductive qualitative methodology, which aims to explore phenomena without preconceived ideas, in order that the theory developed emerges directly from the data and is not distorted by the researcher’s assumptions (Charmaz, 2006; Glaser & Strauss, 1967). GT follows a theoretical sampling strategy to data collection (Charmaz, 2006). This involves recruiting participants who will enable the properties of the categories identified in the data, which constitute the emerging theory, to be
accounts. In order to develop the current theoretical understanding of the experiences of people who were diagnosed with chronic illnesses when they were young, this research asked: What are the experiences of people diagnosed with chronic illnesses when they were young?
Method
Participants
Six women with chronic illnesses aged 24-44 years who were diagnosed when they were young (mean = 24 years) participated in this study. The mean age of the sample was 35, with a range of disease duration of 2-19 years. The women’s diagnoses were systemic sclerosis (n = 3), fibromyalgia (n = 1), rheumatoid arthritis (n = 1), and ME/ CFS (n = 1). Three participants were White European, one African American, one White American and one AfroCaribbean. Two participants were single and lived alone, one was separated and lived with her parents and three were married and lived with their spouse (one had a child). Four participants were university graduates and two had specialised training after secondary school. Two participants had part-time jobs, two had full-time jobs, one was in training and the other was unemployed and receiving disability allowance.
Following a theoretical sampling strategy, a person with chronic illness who was diagnosed when she was young was interviewed about her experiences with chronic illness. This participant’s experience served as a starting point for the identification and development of further interview questions and the recruitment o f further participants. Subsequent participants were selected following a snowballing technique (i.e. from the participants’ recommendations). Successive selection criteria were data driven, i.e. subsequent informants were recruited based on the information, categories