Exploring illness identity among children and youth living with cancer: A narrative review

Posa, Stephanie; Moola, Fiona; McPherson, Amy C.; Kontos, Pia

doi:10.1002/pbc.29251

Cited by 6 publications

(6 citation statements)

References 44 publications

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“…A narrative review of the illness identity among children and youth with cancer revealed that their experience profoundly affected their identity formation both positively and negatively. 23 The reliable relationships with health professionals observed repeatedly in our study could be a positive influence on children's identity formation. Similarly, a qualitative study on adolescents and young adults with cancer found that self-care or self-advocacy is essential for facing long-term illnesses.…”

Section: Inclusive Theme Illustrative Narrativesupporting

confidence: 54%

Children’s cognition and attitudes during long-term cancer treatment: an ethnographic study

Michinobu,

Yamamoto,

Igarashi

et al. 2024

bmjpo

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BackgroundCancer treatment for children is typically long-term and difficult, and the experience is unique for each child. When designing child-centred care, individuals’ values and preferences are considered equally important as the clinical evidence; therefore, understanding children’s thoughts and attitudes while they receive long-term treatment could offer valuable insights for better clinical practice.MethodsWe conducted long-term consecutive participatory observations and interviews with seven children, who were hospitalised and receiving cancer treatment for the first time. The daily observational data on those children’s discourses, behaviours and interactions with health professionals were systematically collected and thematically examined. The analysis was expanded to explore significant narratives for each child to capture their narrative sequence over time.ResultsThe initial analysis identified 685 narrative indexes for all observation data, which were categorised into 21 sub-codes. Those sub-codes were assembled into five main themes by thematic analysis: making promises with health professionals, learning about the treatment procedures through participation, taking care of oneself, increasing the range of activities one can perform and living an ordinary life.ConclusionWe observed a forward-looking attitude toward understanding cancer, accepting treatment and looking forward to the future among children undergoing in-hospital cancer treatment. In addition, the children developed cognitively, affectively and relationally throughout cancer treatment processes. These findings have implications for better clinical practice in child-centred care, including children’s participation in shared decision-making in paediatric oncology.

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Section: Inclusive Theme Illustrative Narrativesupporting

confidence: 54%

Children’s cognition and attitudes during long-term cancer treatment: an ethnographic study

Michinobu,

Yamamoto,

Igarashi

et al. 2024

bmjpo

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“…Illness identity as being gives an answer to the question ‘Who am I with regard to illness?’ (Posa et al., 2021, p. 1) and focuses on a person’s sense or understanding of themselves as ill (or not). Potential answers to that question vary from broad descriptions that are not further conceptualised to more elaborate responses.…”

Section: Resultsmentioning

confidence: 99%

“…Illness identity as being describes a constructed identity that is predominantly addressed in terms of change resulting from something new or additional, which, for example, is being internalised (e.g. Korsbek, 2013; Shostak & Fox, 2012), integrated (Posa et al., 2021) or replaced (Helgeson & Zajdel, 2017), but may also be addressed as, for example, developed (Ottewell, 2021) or created (Talbot et al., 2020).…”

Section: Resultsmentioning

confidence: 99%

“…All articles in this theme agree on an understanding of the onset of a disease as the identity changer that in some way challenges and often affects a person’s sense of self. This is indicated by using this point in time as a marker that divides a ‘pre‐illness identity’ from an ‘illness identity’ (Heavey, 2018) and points to a process that continues by differentiating between subject positions, such as ‘cancer patient’ as opposed to ‘survivor’ (Posa et al., 2021, p. 4), or by contrasting ‘illness identity’ with ‘recovery identity’ or ‘post‐illness identity’ (Heavey, 2018; Korsbek, 2013; Koski, 2014). The transformative potential of an illness also emerges as a change of subject position, derived from experience, from ‘sinner’ to ‘knower’ (Jaworska, 2018, pp.…”

Section: Resultsmentioning

confidence: 99%

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I am what I am?—An integrative review of understandings of ‘health identity’ and ‘illness identity’ in scientific literature

Pelters

2024

Sociology Health & Illness

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Health and illness identities have been presented as important for the experience of health and illness, and they are a widespread research interest. However, these identities are conceptualised in many different ways. This conceptual diversity calls for us to take stock of existing understandings of health and illness identities to provide conceptual clarity and reliability. The study performs an integrative review of these understandings in scientific articles identified through the databases PsychInfo, Pubmed and Scopus. The final sample consists of 64 articles, on which a thematic analysis has been performed. Health and illness identities are regarded as constructed and can be understood in terms of being, acting and judging, answering the questions ‘Who are you, with regard to health/illness?’, ‘How do you deal with health/illness?’ and ‘How are people judged by their health/illness?’, respectively. The terms health identity and illness identity are understood in varied, not necessarily compatible ways, and need to be applied carefully. Health identity concepts appear to be less well established and based upon a more varied theoretical background, while illness identity concepts appear to be more well established and usually relate to a (bio‐)medical context. A potential understanding of health identity for medical sociology is suggested.

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“…More research and psychosocial support are needed to help young people with cancer navigate identity experiences and affective states during the cancer journey. HEART Lab student Stephanie Posa (2021) has recently completed a published review of literature on young people with cancer and identity. Indeed, the identity effects of cancer are complex and characterized by much fluidity and nuance.…”

Section: Chapter 5: Discussion and Future Directions Introductionmentioning

confidence: 99%

Cancer Conversations Among Children With Cancer

Pathmalingam¹

2023

Preprint

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<p> Self-disclosure is a psychosocial process in which children carefully decide who, what, and how they tell others about their illness. Unfortunately, there is very little known about how children disclose their cancer diagnosis to their peers. For this reason, this study utilized a qualitative secondary analysis approach to investigate whether and how children disclose their illness to peers at camp. A thematic analysis was undertaken to analyze 21 interviews completed by children who experienced cancer and were from two summer residential camps in Ontario. This resulted in four themes including talking about cancer, thinking about cancer, attitude towards illness, and social environment and relationships. The findings affirm that illness disclosure is extremely complex and has several contributing factors. Further research in the area of disclosure among children with cancer is encouraged, as it can assist in the development of support and interventions for children engaging in numerous types of disclosure. </p>

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Exploring illness identity among children and youth living with cancer: A narrative review

Cited by 6 publications

References 44 publications

Children’s cognition and attitudes during long-term cancer treatment: an ethnographic study

Children’s cognition and attitudes during long-term cancer treatment: an ethnographic study

I am what I am?—An integrative review of understandings of ‘health identity’ and ‘illness identity’ in scientific literature

Cancer Conversations Among Children With Cancer

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