Experiences of living with cancer of adolescents and young adults and their families: A narrative review and synthesis

McInally, Wendy; Gray-Brunton, Carol; Chouliara, Zoë; Kyle, Richard G.

doi:10.1016/j.enfcle.2020.12.005

Cited by 4 publications

(6 citation statements)

References 26 publications

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“…While the current review excluded cancer conditions, the results of our review confirm those of Nickel et al ( 39 ) who found that, in hypothetical case scenarios of medicalized, compared to descriptive, terminology for both cancer and non-cancer diagnoses, the provision of a diagnostic label may have detrimental psychological impacts, including increased anxiety, increased perceived severity of the diagnosis, and preference for more invasive treatments. Further, existing reviews investigating the impact of cancer diagnosis on individuals and family members ( 143 , 144 ) support findings of the current review, including the varied psychological impacts and impacts on support and treatment decisions. Our review also extends these findings first, across multiple diagnostic labels (e.g., diabetes, musculoskeletal, and autism spectrum disorder) and second, using real-world experiences ( 39 ).…”

Section: Discussionsupporting

confidence: 74%

Consequences of a Diagnostic Label: A Systematic Scoping Review and Thematic Framework

Sims

Michaleff

Glasziou

et al. 2021

Front. Public Health

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Objectives: To develop a thematic framework for the range of consequences arising from a diagnostic label from an individual, family/caregiver, healthcare professional, and community perspective.Design: Systematic scoping review of qualitative studies.Search Strategy: We searched PubMed, Embase, PsycINFO, Cochrane, and CINAHL for primary studies and syntheses of primary studies that explore the consequences of labelling non-cancer diagnoses. Reference lists of included studies were screened, and forward citation searches undertaken.Study Selection: We included peer reviewed publications describing the perceived consequences for individuals labelled with a non-cancer diagnostic label from four perspectives: that of the individual, their family/caregiver, healthcare professional and/or community members. We excluded studies using hypothetical scenarios.Data Extraction and Synthesis: Data extraction used a three-staged process: one third was used to develop a preliminary framework, the next third for framework validation, and the final third coded if thematic saturation was not achieved. Author themes and supporting quotes were extracted, and analysed from the perspective of individual, family/caregiver, healthcare professional, or community member.Results: After deduplication, searches identified 7,379 unique articles. Following screening, 146 articles, consisting of 128 primary studies and 18 reviews, were included. The developed framework consisted of five overarching themes relevant to the four perspectives: psychosocial impact (e.g., positive/negative psychological impact, social- and self-identity, stigma), support (e.g., increased, decreased, relationship changes, professional interactions), future planning (e.g., action and uncertainty), behaviour (e.g., beneficial or detrimental modifications), and treatment expectations (e.g., positive/negative experiences). Perspectives of individuals were most frequently reported.Conclusions: This review developed and validated a framework of five domains of consequences following diagnostic labelling. Further research is required to test the external validity and acceptability of the framework for individuals and their family/caregiver, healthcare professionals, and community.

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Section: Discussionsupporting

confidence: 74%

Consequences of a Diagnostic Label: A Systematic Scoping Review and Thematic Framework

Sims

Michaleff

Glasziou

et al. 2021

Front. Public Health

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“…Obtaining an early diagnosis is crucial to identifying the stage of this disease and enabling swift treatment to help prevent metastases (Ali et al, 2013; National Institute for Health and Care Excellence [NICE], 2005). Melanoma can be difficult for GPs to diagnose, but patients should be referred to appropriate specialist services if the lesions are suspicious (Marsden et al, 2010; Melanoma United Kingdom, 2020; Scottish Government, 2019; TCT, 2020).…”

Section: Discussionmentioning

confidence: 99%

“…Cancer during adolescence shapes and reshapes young people's lives and relationships at a crucial life stage when they are in the process of developing their adult (sense of) self, gaining greater independence and making life plans (Cable & Kelly, 2019; Davies et al, 2018, McInally & Cruickshank, Pearce et al, 2020, Weston et al, 2018). However, a narrative review of 18 qualitative research studies showed that experiences of AYAs living with melanoma are poorly understood, with no studies in the age group of 12–26 years and that the experiences of family are omitted (McInally et al, 2021). Only two previous studies have used Interpretative Phenomenological Analysis (IPA) to examine AYAs’ experiences (Al Omari & Wynaden, 2014; Al Omari et al, 2017), and no previous papers have used IPA to understand the experiences of AYAs alongside their families.…”

Section: Introductionmentioning

confidence: 99%

Life Interrupted: Experiences of adolescents, young adults and their family living with malignant melanoma

McInally

Gray-Brunton

Chouliara³

et al. 2021

Journal of Advanced Nursing

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Aim Melanoma is one of the most common human malignancies; yet, it is often thought of as a disease of adulthood rather than one affecting adolescents and young adults. This study sought to understand the experiences of adolescents, young adults and their family living with malignant melanoma. Design A qualitative study using Interpretive Phenomenological Analysis, through a multi‐perspective design. Methods Data collection was conducted between January and August 2018 in each participant's Primary Care Centre when they were attending for an outpatient appointment. Each young person and a nominated family member were interviewed (n = 10) either individually (n = 4) or as a dyad (n = 6) according to their personal choice. In‐depth semi‐structured interviews were conducted and audio‐recorded with the participant's consent. Interview data were transcribed verbatim and analysed. Findings The metanarrative ‘Life Interrupted’ was the core conceptual thread woven throughout the findings. It represents the interconnections and interrelationships between the adolescent or young adult and their family. Being able to recognize the disease and seek support was challenging with often limited physical, emotional or social support resulting in feelings of fear and isolation. Four super‐ordinate themes were identified: (a) ‘Is it Serious’, (b) ‘Too Much too Young’, (c) ‘Not the Same’ and (d) ‘Time to Live’. Conclusions With the rising incidence of MM in the adolescents and young adults population globally, there are demands to improve healthcare professionals and nurse's knowledge and understanding of MM. As young people with MM experience their journey outside specialist cancer services, the care delivery for this patient group and their families require stronger links between services. Impact This study will inform the improvement of care delivery for MM in order that this patient group is provided with the same access to service delivery as other adolescents and young adults with cancer.

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“…Therefore, according to the complex evolutionary changes in this age group [12], the coincidence of this process with cancer, the diagnosis of which causes a lot of psychological pressure on people, and it will be a very unpleasant and unbelievable experience in this group of patients [13], can be associated with an increasing risk of psychological and social problems for both the patient and the family, and cause a challenge in the adolescent's whole outlook on life [14]. The changes caused by cancer or its treatments and the changes in roles and communication patterns are among the most important factors in causing damage to self-esteem and mental disorders, especially stress and depression in Adolescence [15]. Long-term treatments and painful chemotherapy increase the interactive and psychological problems of adolescents and their families [16].…”

Section: Introductionmentioning

confidence: 99%

“…This conscious approach of parents will bring the family's ability to coordinate or adapt to the changes made during life, resolve con icts and solidarity between members, and succeed in adaptive patterns to protect the entire family system [17]. 2021), in a meta-synthesis study aimed at understanding the experiences of adolescents and young adults with cancer and their families, showed that three issues: "diagnosis of cancer, uncertainty -preservation of life, and gaps in providing care" were considered as the main sources of con icts and tensions of patients and their families and required effective intervention in this area [15]. In a meta-synthesis study, Pieh Fan Mo et al (2015) also aimed to gain an understanding of the experiences of family members during the following year after learning that a child or adolescent in their family was diagnosed with cancer, a total of ve syntheses were obtained: 1-The chaos that surrounds the diagnosis of cancer in families; 2-A sense of courage and hope for mutual responsibility inspired by changes in circumstances; 3-Family support that increases the resilience of family members; 4-Health expert and patient communication that provides a deeper understanding of the disease and their situations; and 5positive attitude towards the disease and planning for the future.…”

Section: Introductionmentioning

confidence: 99%

Parents' Protective Strategies in Dealing with Adolescence Cancer: A Qualitative Study

Padehban,

Yazdi,

poorkhani

et al. 2024

Preprint

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Background: Being diagnosed with cancer is a very unpleasant and unbelievable experience for the family and the patient. The association of this disease with adolescence as the most dangerous developmental stage can be accompanied by an increasing line of psychological and social problems. The aforementioned research was conducted to explain the performance of parents in caring for Adolescence with cancer. Methods: The present qualitative study was conducted using the conventional content analysis method. 17 Iranian families with Adolescence diagnosed with cancer from December 2022 to November 2023 were selected as participants based on the inclusion criteria through targeted sampling. Continuous comparative data collection and analysis until reaching data saturation was done through semi-structured interviews. Data analysis was done using the qualitative content analysis method proposed by Granheim Velangman. The research report was presented using the Consolidated Criteria for Qualitative Research Reporting (COREQ) checklist. Results: The family's dominant strategy against Adolescence cancer includes 5 main concepts, included: "Parents' conscious approach appropriate to the adolescent when facing a cancer diagnosis," "Disease recognition based on multiple sources," "Using social support resources," "Family self-control methods when facing a cancer diagnosis," and "Limiting social interactions in the family." Conclusions: The findings showed that parents of Adolescence with cancer use protective strategies when facing their child's diagnosis and treatment process. Therefore, nurses can use these protective strategies in developing a care plan while considering the conditions of the parents and the affected adolescent to improve the health of the affected adolescent.

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Experiences of living with cancer of adolescents and young adults and their families: A narrative review and synthesis

Cited by 4 publications

References 26 publications

Consequences of a Diagnostic Label: A Systematic Scoping Review and Thematic Framework

Consequences of a Diagnostic Label: A Systematic Scoping Review and Thematic Framework

Life Interrupted: Experiences of adolescents, young adults and their family living with malignant melanoma

Parents' Protective Strategies in Dealing with Adolescence Cancer: A Qualitative Study

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