"It changes everything": Understanding how people experience the impact of living with a lower-grade glioma.

Background: Quantitative studies show people living with a lower-grade glioma (LGG) often report low health-related quality of life. However, it is unclear how this impact is experienced; resulting supportive care needs are also poorly understood. We explored how people experience the impact of living long-term with an LGG, to help identify potential supportive care needs. Methods: We conducted semi-structured interviews with a diverse group of people with LGG (n = 28) across the United Kingdom, who had completed primary treatment (male n = 16, female n = 12, mean age 54.6 years, mean time since diagnosis 8.7 years). Interviews were transcribed and inductive thematic analysis was conducted. Results: Four themes relating to the impact experiences of people with LGG were generated: "Emotional response to the diagnosis," "Living with the 'What ifs'," "Changing relationships," and "Faltering independence." These reflect participants' experiences with symptoms (eg, fatigue, seizures) and impairments (eg, motor dysfunction, cognitive deficits), and how these, in turn, drive impacts on daily living (including on work, relationships, social activities, and transport). Participants spoke about their experiences with profound emotion throughout. Conclusions: People with LGG can experience wide-ranging everyday impacts and may have extensive supportive care needs. This study highlights how this impact is experienced and what it means to people with LGG. Best practice suggestions for conducting comprehensive needs assessments tailored to those with LGG, and the development of personalized plans to meet those needs, would be a critical step to ensure that people with LGG are best supported in living with their condition.

Understanding supported self-management for people living with a lower-grade glioma: Implementation considerations through the lens of normalisation process theory.

BACKGROUND: Supported self-management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self-management support (SMS) for people living with a lower-grade glioma (LGG)-who often have complex support needs-are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. METHODS: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. RESULTS: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP-support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help-seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. CONCLUSIONS: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self-management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. PATIENT OR PUBLIC CONTRIBUTION: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings.

Barriers and facilitators to self-management in people living with a lower-grade glioma.

PURPOSE: Self-management can have clinical and quality-of-life benefits. However, people with lower-grade gliomas (LGG) may face chronic tumour- and/or treatment-related symptoms and impairments (e.g. cognitive deficits, seizures), which could influence their ability to self-manage. Our study aimed to identify and understand the barriers and facilitators to self-management in people with LGG. METHODS: We conducted semi-structured interviews with 28 people with LGG across the United Kingdom, who had completed primary treatment. Sixteen participants were male, mean age was 50.4 years, and mean time since diagnosis was 8.7 years. Interviews were audio-recorded and transcribed. Following inductive open coding, we deductively mapped codes to Schulman-Green et al.'s framework of factors influencing self-management, developed in chronic illness. RESULTS: Data suggested extensive support for all five framework categories ('Personal/lifestyle characteristics', 'Health status', 'Resources', 'Environmental characteristics', 'Healthcare system'), encompassing all 18 factors influencing self-management. How people with LGG experience many of these factors appears somewhat distinct from other cancers; participants described multiple, often co-occurring, challenges, primarily with knowledge and acceptance of their incurable condition, the impact of seizures and cognitive deficits, transport difficulties, and access to (in)formal support. Several factors were on a continuum, for example, sufficient knowledge was a facilitator, whereas lack thereof, was a barrier to self-management. CONCLUSIONS: People with LGG described distinctive experiences with wide-ranging factors influencing their ability to self-manage. IMPLICATIONS FOR CANCER SURVIVORS: These findings will improve awareness of the potential challenges faced by people with LGG around self-management and inform development of self-management interventions for this population.

Identifying and understanding how people living with a lower-grade glioma engage in self-management.

PURPOSE: Lower-grade gliomas (LGG) are mostly diagnosed in working-aged adults and rarely cured. LGG patients may face chronic impairments (e.g. fatigue, cognitive deficits). Self-management can improve clinical and psychosocial outcomes, yet how LGG patients self-manage the consequences of their tumour and its treatment is not fully understood. This study, therefore, aimed to identify and understand how LGG patients engage in the self-management of their condition. METHODS: A diverse group of 28 LGG patients (age range 22-69 years; male n = 16, female n = 12; mean time since diagnosis = 8.7 years) who had completed primary treatment, were recruited from across the United Kingdom. Semi-structured interviews were conducted. Informed by a self-management strategy framework developed in cancer, directed content analysis identified and categorised self-management types and strategies used by patients. RESULTS: Overall, 20 self-management strategy types, comprising 123 self-management strategies were reported; each participant detailed extensive engagement in self-management. The most used strategy types were 'using support' (n = 28), 'creating a healthy environment' (n = 28), 'meaning making' (n = 27), and 'self-monitoring' (n = 27). The most used strategies were 'accepting the tumour and its consequences' (n = 26), 'receiving support from friends (n = 24) and family' (n = 24), and 'reinterpreting negative consequences' (n = 24). CONCLUSIONS: This study provides a comprehensive understanding of the strategies used by LGG patients to self-manage their health and wellbeing, with a diverse, and substantial number of self-management strategies reported. IMPLICATIONS FOR CANCER SURVIVORS: The findings will inform the development of a supported self-management intervention for LGG patients, which will be novel for this patient group.

Speaking up for the lost voices: representation and inclusion of people with communication impairment in brain tumour research.

Brain tumours and their associated treatments can lead to progressive impairments of communication, adversely affecting quality-of-life. This commentary explores our concerns that people with speech, language, and communication needs face barriers to representation and inclusion in brain tumour research; we then offer possible solutions to support their participation. Our main concerns are that there is currently poor recognition of the nature of communication difficulties following brain tumours, limited focus on the psychosocial impact, and lack of transparency on why people with speech, language, and communication needs were excluded from research or how they were supported to take part. We propose solutions focusing on working towards more accurate reporting of symptoms and the impact of impairment, using innovative qualitative methods to collect data on the lived experiences of speech, language, and communication needs, and empowering speech and language therapists to become part of research teams as experts and advocates for this population. These solutions would support the accurate representation and inclusion of people with communication needs after brain tumour in research, allowing healthcare professionals to learn more about their priorities and needs.

Health-related quality of life in adults with low-grade gliomas: a systematic review.

PURPOSE: Low-grade glioma (LGG) patients may face health-related quality-of-life (HRQoL) impairments, due to the tumour, treatment and associated side-effects and prospects of progression. We systematically identified quantitative studies assessing HRQoL in adult LGG patients, for: aspects of HRQoL impacted; comparisons with non-cancer controls (NCC) and other groups; temporal trends; and factors associated with HRQoL. METHODS: MEDLINE, CINAHL, Embase, PubMed, and PsycINFO were systematically searched from inception to 14th September 2021. Following independent screening of titles and abstracts and full-texts, population and study characteristics, and HRQoL findings were abstracted from eligible papers, and quality appraised. Narrative synthesis was conducted. RESULTS: Twenty-nine papers reporting 22 studies (cross-sectional, n = 13; longitudinal, n = 9) were identified. Papers were largely good quality, though many excluded patients with cognitive and communication impairments. Comparators included high-grade gliomas (HGG) (n = 7); NCCs (n = 6) and other patient groups (n = 3). Nineteen factors, primarily treatment (n = 8), were examined for association with HRQoL. There was substantial heterogeneity in HRQoL instruments used, factors and aspects of HRQoL assessed and measurement timepoints. HRQoL, primarily cognitive functioning and fatigue, in adult LGG patients is poor, and worse than in NCCs, though better than in HGG patients. Over time, HRQoL remained low, but stable. Epilepsy/seizure burden was most consistently associated with worse HRQoL. CONCLUSION: LGG patients experience wide-ranging HRQoL impairments. HRQoL in those with cognitive and communication impairments requires further investigation. These findings may help clinicians recognise current supportive care needs and inform types and timings of support needed, as well as inform future interventions.

The nature and content of rumination for head and neck cancer survivors.

Introduction: Head and neck cancer (HNC) diagnosis and treatment can be a significant life trauma. Some HNC survivors experience post-traumatic growth (PTG), which has been linked with better health-related quality-of-life. Empirical research on PTG, and theoretical models, point to the importance of being able to purposely make sense of the traumatic experience. Intrusive rumination, by contrast, is linked to poorer outcomes. This study explored HNC survivors' experiences of rumination. Methods: Twenty HNC survivors between 9 months and 5 years post-diagnosis were recruited (11 male, 9 female, age range 46-83). They had a range of HNC sub-types and cancer treatments. Participants underwent a semi-structured interview about their cancer diagnosis and treatment. Reflexive thematic analysis identified themes and sub-themes around rumination. Results: Four themes with linked subthemes on the content and process of rumination were identified. Theme 1 was rumination and worry related to diagnosis. Here, survivors discussed how the HNC diagnosis and plans for treatment had dominated their initial thoughts. Theme 2 was processing the trauma of HNC. This theme reflected rumination on the traumatic experience of diagnosis and treatment and how the participant was reacting to it. Theme 3 was considering the impact. This theme encompassed retrospective thinking (e.g., on treatment decisions made) and comparisons between the participant now versus the early days after diagnosis. Theme 4 was continued rumination. This theme included ongoing intrusive and distressing rumination about the trauma and impact of cancer. Those who expressed ongoing rumination revisited fears (e.g., concerns about their future) or returned to negative experiences (e.g., distressing exchanges with healthcare professionals or what they perceived as poor care). Conclusion: This study uniquely describes the nature and content of rumination following HNC. Early intrusive rumination is common and may reflect perceptions of cancer as an existential threat. Over time, rumination can become more reflective and move towards deliberate meaning-making. Some HNC survivors may benefit from interventions to reduce barriers to this transition. The content of distressing and difficult to control rumination (commonly focused on ongoing fears or inability to resolve difficult experiences) helps to identify those who may benefit from more directed psychological support.

Post-traumatic growth after cancer: a scoping review of qualitative research.

PURPOSE: Interest is growing in post-traumatic growth (PTG) after cancer prompted, in part, by observations of positive associations with health-related quality of life. Qualitative research provides valuable insight into survivors' experiences. We conducted a scoping review of qualitative evidence on PTG in cancer, determining the number, nature, range and scope of studies, and gaps in the literature. METHODS: We systematically searched Medline, Scopus, CINAHL, Web of Science, and PsycINFO for qualitative research exploring positive changes after cancer published from 1996. From eligible studies, we extracted: terms used for PTG; design, methodological orientation, and techniques, and participant characteristics. Using descriptive mapping, we explored whether study findings fit within Tedeschi and Calhoun's PTG framework, and evidence for unique positive changes post-cancer. RESULTS: Twenty-eight studies were eligible. Cancer sites included were: breast, 14; mixed, 6; haematological, 4; head and neck cancer, 2; bone, 1, and testis, 1. Multiple studies were conducted in: the USA (12), Australia (3), Iran (2), and the UK (2). Twenty-three studies collected data using individual interviews (21) or focus groups (2). Definitions of PTG varied. Studies largely focused on descriptive accounts of PTG. Findings mapped onto existing PTG dimensions; health behaviour changes were often reported, under 'new possibilities'. CONCLUSIONS: A range of PTG outcomes can occur after cancer. Positive health behaviour changes warrant further exploration. Future research should include more diverse patient populations, collect longitudinal data, and focus on pathways towards positive changes.

The impact of aphasia on Internet and technology use.

Purpose: This study compared Internet use post-stroke in people with aphasia (n = 25) and without aphasia (n = 17). The purpose was to understand how people with aphasia were using the Internet and to investigate the impact of aphasia on their use.Materials and methods: A face-to-face supported questionnaire explored the use of technologies, types of Internet use, traditional and Internet communication, the perception of abilities, and possible barriers to acquiring or improving Internet skills. Descriptive and inferential statistics were used to analyze the data.Results: Internet use ranged from fully independent to by proxy across both groups. Most participants perceived their aphasia as a barrier, but for the majority, it was not the sole reason for failing to acquire or improve skills. Aphasia was related to difficulties with technology-based written communication. Educational attainment was related to participant's feelings about their own skills. Whilst aphasia was important, analysis revealed that age was a stronger predictor of Internet use per se.Conclusions: It is clear that aphasia often negatively affects Internet use and proficiency. However, this research clearly demonstrates that it is important to consider the influence of factors such as age, proxy use, education, and previous technology use and experience.Implications for rehabilitationPost-stroke aphasia contributes negatively to Internet use, particularly in the use of online communication tools such as email and messaging services.Sub-groups of people with aphasia are likely to be more vulnerable to exclusion from the benefits of the Internet; specifically, older people and those with lower levels of educational attainment.It is common for both older adults with and without aphasia to use the Internet via a proxy. Independent use may not always be the desired goal within rehabilitation.People with aphasia may perceive their age and disability as barriers to using the Internet and may lack confidence in their own ability or potential.