197 research outputs found

    Benefits of supportive strategies for carers of people with high-grade glioma: a systematic review: Strategies for addressing the needs of high-grade glioma carers

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    Purpose: To systematically review and examine current evidence for the carer-reported benefits of supportive care strategies for carers of adults with high-grade glioma (HGG). Methods: Four databases (CINAHL, EMBASE, PubMed, PsycINFO) were searched for articles published between January 2005 and April 2022 that assessed strategies for addressing the supportive care needs of carers of adults with HGG (WHO grade 3–4). Study selection and critical appraisal were conducted independently by three authors (DJ/MC, 2021; DJ/RJ 2022). Data extraction was conducted by one author (DJ) and checked by a second author (RJ). Results were synthesised narratively. Results: Twenty-one studies involving 1377 caregivers were included, targeting the carer directly (n = 10), the patient-carer dyad (n = 3), or focused on people with HGG + / − their carers (n = 8). A paucity of high-quality evidence exists for effective and comprehensive support directly addressing outcomes for carers of adults with HGG. Strategies that demonstrated some benefits included those that built carer knowledge or provided emotional support, delivered by health professionals or through peer support. Supportive and early palliative care programmes have potential to reduce unmet carer needs while providing ongoing carer support. Conclusion: Strategies incorporating an educational component, emotional support, and a regular needs assessment with corresponding tailored support are most valued by carers. Future practice development research should adopt a value-based approach and exceed evaluation of efficacy outcomes to incorporate evaluation of the experience of patients, carers, and staff, as well as costs

    Ways Ahead: developing a supported self-management programme for people living with low- and intermediate-grade gliomas - a protocol for a multi-method study

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    INTRODUCTION: Living with and beyond a diagnosis of a low- and intermediate-grade glioma (LIGG) can adversely impact many aspects of people's lives and their quality of life (QoL). In people with chronic conditions, self-management can improve QoL. This is especially true if people are supported to self-manage. Supported self-management programmes have been developed for several cancers, but the unique challenges experienced by LIGG survivors mean these programmes may not be readily transferable to this group. The Ways Ahead study aims to address this gap by exploring the needs of LIGG survivors to develop a prototype for a supported self-management programme tailored to this group. METHODS AND ANALYSIS: Ways Ahead will follow three sequential phases, underpinned by a systematic review of self-management interventions in cancer. In phase 1, qualitative methods will be used to explore and understand the issues faced by LIGG survivors, as well as the barriers and facilitators to self-management. Three sets of interviews will be conducted with LIGG survivors, their informal carers and professionals. Thematic analysis will be conducted with reference to the Theoretical Domains Framework and Normalisation Process Theory. Phase 2 will involve co-production workshops to generate ideas for the design of a supported self-management programme. Workshop outputs will be translated into a design specification for a prototype programme. Finally, phase 3 will involve a health economic assessment to examine the feasibility and benefits of incorporating the proposed programme into the current survivorship care pathway. This prototype will then be ready for testing in a subsequent trial. ETHICS AND DISSEMINATION: The study has been reviewed and approved by an National Health Service Research Ethics Committee (REC ref: 20/WA/0118). The findings will be disseminated through peer-reviewed journals, conference presentations, broadcast media, the study website, The Brain Tumour Charity and stakeholder engagement activities

    Addressing Death Distress in Caregivers of Patients with Malignant Glioma

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    The field of psychosocial oncology seeks to improve the quality of life of patients and families affected by cancer. This task becomes increasingly important when there are limited, non-curative treatment options, a high probability of recurrence, and rapid functional decline, such as in the case of a malignant glioma (MG). Indeed, the diagnosis of a MG is associated with negative sequalae that often translates to higher caregiver burden. Caregivers—who must manage the functional decline of the patient, changes within the family, and a complicated medical system—often feel overwhelmed, isolated, and ill-equipped to handle these myriad responsibilities. While they also report significant depression and anxiety, caregivers specifically endorse death distress (i.e., fear, despair, or preoccupation with the patient’s inevitable mortality). Few evidenced-based interventions exist for ameliorating caregiver psychological distress, despite their stated desire for increased professional support., and none targets death distress in caregivers. Managing Cancer and Living Meaningfully (CALM) is a brief, evidence-based, supportive-expressive psychotherapy developed to address the practical and profound issues associated with advanced cancer and may benefit caregivers’ death distress. However, the suitability of CALM has yet to be evaluated in caregivers specifically. Therefore, the overarching purpose of the current study was to evaluate the suitability of CALM in caregivers of patients diagnosed with MG by collecting the foundational data necessary to enhance the intervention to meet the unique needs of this population. To achieve this goal, the current study recruited 22 bereaved caregivers to complete a focus group and subsequent questionnaires. During the focus groups, caregivers learned about the standard CALM intervention and provided feedback/recommendations to improve its suitability, feasibility, and acceptability. Their responses were qualitatively analyzed by a team of coders using thematic, deductive, latent analysis (Kappa = 0.86). The results suggest that the CALM intervention is highly relevant to the caregiving experience and might benefit caregivers emotionally, make them feel more prepared/effective, improve their communication with the patient, and provide a unique opportunity to receive specialized care specific to neuro-oncology. Potential hurdles for caregivers\u27 participation included not having sufficient time and energy, not feeling emotionally ready, fearing they would burden the patient with their emotionality, and believing their loved one would not be emotionally or cognitively capable to participate. Participants also provided recommendations for additional content areas (e.g., caregiver burden and bereavement), how to introduce services, when to initiate treatment, when to participate as an individual versus as a dyad, and how to address logistical concerns. Although CALM might be only one of many necessary interventions to support caregivers’ needs, participants’ feedback was largely positive. Their recommendations will be valuable in developing a final, optimized CALM protocol that addresses the needs of the forgotten patient in cancer care: the caregiver

    Involving adolescents and young adults (AYA) with an uncertain or poor cancer prognosis as research partners

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    BackgroundThe interest in patient involvement is increasing in health research, however, is not yet well described in adolescents and young adults (AYA) with palliative cancer, such as AYAs with an uncertain and/or poor cancer prognosis (UPCP). This study aimed to document the process of involving AYAs with a UPCP as partners in research including their experiences, the impact, and our lessons learned.Materials and MethodsAYAs with a UPCP were recruited via healthcare professionals and patients to involve as research partners in the qualitative interview study. To define their role and tasks in each research phase we used the participation matrix.ResultsIn total six AYAs with a UPCP were involved as research partners and five as co-thinkers. They were involved in initiating topics, developing study design, interviewing, analyzing data, and dissemination of information. Together with the researcher, they co-produced the information letters and interview guides and implemented aftercare and extra support. The research partners ensured that the data was relevant, correctly interpreted and that results were translated to peers and clinical practice. AYAs themselves felt useful, found people who understand their challenges, and were able to create a legacy.ConclusionThe benefits of involving AYAs with a UPCP as research partners cannot be stressed enough, both for the study as well as for the AYAs themselves, but there are challenges. Researchers should anticipate and address those challenges during the planning phase of the study. This article provides practical tips on how to do so

    Experiences and views of receiving and delivering information about recovery in acquired neurological conditions: a systematic review of qualitative literature

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    Objective To review and synthesise qualitative literature relating to the views, perceptions and experiences of patients with acquired neurological conditions and their caregivers about the process of receiving information about recovery; as well as the views and experiences of healthcare professionals involved in delivering this information. Design Systematic review of qualitative studies. Data sources MEDLINE, Embase, AMED, CINAHL, PsycINFO, Web of Science and the Cochrane library were searched from their inception to July 2019. Data extraction and synthesis Two reviewers extracted data from the included studies and assessed quality using an established tool. Thematic synthesis was used to synthesise the findings of included studies. Results Searches yielded 9105 titles, with 145 retained for full-text screening. Twenty-eight studies (30 papers) from eight countries were included. Inductive analysis resulted in 11 descriptive themes, from which 5 analytical themes were generated: the right information at the right time; managing expectations; it’s not what you say, it’s how you say it; learning how to talk about recovery and manage emotions; the context of uncertainty. Conclusions Our findings highlight the inherent challenges in talking about recovery in an emotional context, where breaking bad news is a key feature. Future interventions should focus on preparing staff to meet patients’ and families’ information needs, as well as ensuring they have the skills to discuss potential recovery and break bad news compassionately and share the uncertain trajectory characteristic of acquired neurological conditions. An agreed team-based approach to talking about recovery is recommended to ensure consistency and improve the experiences of patients and their families

    Adjustment to a brain tumour diagnosis: A mixed methods investigation

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    A primary brain tumour diagnosis is known to elicit higher distress compared to other forms of cancer, and is related to high depressive symptomatology. It poses unique challenges in the process of psychosocial adjustment, with social networks and roles often being disrupted. Despite emerging evidence regarding the importance of social support in maintaining well-being when living with a chronic condition, literature on adjustment to living with a brain tumour rarely focuses on social relationships. The current mixed methods project was therefore designed to address an overarching research question: How do people cope with a brain tumour diagnosis in the context of their social relationships? The aim of the first study was to examine the associations between insecure attachment dimensions and coping strategies, with a proposed mediating role of perceived availability of social support. In this cross-sectional study, participants diagnosed with primary brain tumours (N = 480) were recruited online. Multiple regression analyses revealed significant positive associations between both attachment anxiety and avoidance and helplessness/hopelessness. Attachment anxiety was found to be significantly related to anxious preoccupation, while attachment avoidance was associated with fighting spirit and fatalism. Mediation analyses indicated that perceived social support mediated the relationships between both attachment dimensions and helplessness/hopelessness and fatalism. The findings indicate that individuals higher on insecure attachment dimensions seem to respond with a more maladaptive coping repertoire when adjusting to a diagnosis. The second study sought to gain an in-depth understanding of the lived experience of being diagnosed with a brain tumour, with a focus on exploring participants’ understandings of the meaning of social support. Twelve individuals took part in semi-structured interviews, which were analysed using Interpretative Phenomenological Analysis framework. Five inter-related themes were identified: (1) Making sense of the diagnosis, (2) Working it out in the family, (3) Giving and receiving support, (4) Feeling appreciative, and (5) Negotiating a new normal. The results emphasise that the diagnosis does not affect only the individual but a whole network of closest relationships, often with a price or negotiation that needs to take place within these relationships. Collectively, the results of the project highlight that coping is never an individual task. Both studies were integrated and interpreted jointly through narrative and joint display methods. Overall, the project portrays a complex interplay between family dynamics and individual coping and concludes by proposing that coping is deeply socially embedded. Implications of the findings are discussed. Keywords: Coping, adjustment, brain tumour, adult attachment, social support, mixed method

    Assessing and addressing unmet needs in people affected by brain tumours

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    Introduction Guidelines recommend that brain tumour patients have their unmet needs assessed by a Holistic Needs Assessment (HNA), followed by appropriate support and care to maximise self-management. The aim of this study was to determine the role of HNA amongst brain tumour patients and their families. Methods A sequential mixed methods approach with three distinct phases was used. The first phase undertook a systematic review of available tools for HNA in brain tumours to determine if there was a psychometrically valid tool. This was followed by qualitative interviews and focus groups that explored patients’ and carers’ experiences and perceptions of unmet needs as well as strategies and support to assess and address these. The next phase was a realist synthesis of the HNA programmes in brain tumour patients which explored how HNA programmes could work. The thesis was underpinned by realist methods which were used to draw each of the phases of the thesis together. Results It was determined that there was no psychometrically valid tool that could be recommended for HNA in this group. Furthermore, there are significant challenges in using a patient completed HNA due to cognitive difficulties. Patients with brain tumours have diverse needs, but also unique compared to most other cancers due to the neurocognitive impairments. These also impact the carers as neurocognitive changes can be distressing but also cause a higher carer burden, therefore carers need specific support in their role. While the HNA as a process is useful in addressing unmet needs and enabling more self-management; the existing programme for HNA in UK is not suitable. Conclusions This thesis supported that a modified HNA programme may be beneficial in meeting the needs of brain tumour patients. Due to neuro-cognitive impairments, an assessment of the patient’s ability to self-manage, combined with inclusion and support of carers in HNA programmes for brain tumour patients, is needed to maximise the potential for self-management. The assessment and management of distress as well as increased access to the neuro-oncology team is also recommended. This research has proposed an alternative, novel practice-based model integrating the findings of this research