Women with breast cancer often have difficulties in making sense of and understanding their experiences, specifically the ways in which cultural sensitivities impact on and shape their lifeworlds.The aim of this study is to explore the experience of being a breast cancer survivor in Saudi Arabia.Qualitative, in-depth, semi-structured interviews were conducted with 18 Saudi breast cancer survivors aged between 30 and 50 years who had finished treatment 6-47 months before data collection. The data were transcribed verbatim, translated from Arabic into English and analysed using interpretative phenomenological analysis.Three themes emerged: the meaning of cancer; hidden survival; and the cultural meaning of survival. For women in Saudi, breast cancer has a cultural stigma linked to death. It changes the sense of self and of society, leading some women to hide their diagnosis from the public and their families. The meaning of survival in a Muslim context has a cultural and religious base, linked to God's will, normality and resumption of activities.The study helps give Saudi women a 'voice' through the understanding of their experiences of surviving breast cancer. The unique cultural perspectives provide new insights, which can guide healthcare practice and inform the development of programmes to support women who survive breast cancer.
Background: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality, provide emotional support and can influence how parents manage their role in the face of uncertainty. Aim: To present a narrative literature review of long-term relationships between children's nurses and parents in PPC settings. Methods: Six databases (CINAHL, PsycINFO, ASSIA, Scopus, Medline and BNI) were searched, identifying 35 articles. A grey literature search produced seven additional relevant items. Findings: Four themes were identified: bonds; attachments and trust; sharing the journey; going the extra mile; and boundaries and integrity. All themes revealed an element of tension between closeness and professionalism. Conclusion: Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses could positively influence pre- and post-registration nurse education.
Men can play a significant role in teaching their children about sexuality but fathers' practices and perceptions in this domain remain under explored. This study presents an Interpretative Phenomenological Analysis of eight fathers' perceptions and practices in educating their ten-year-old children about physical maturation, reproduction and relationships. A Foucauldian analysis with a focus on governmentality and biopower revealed tensions and contradictions between the fathers' aspirations and their realities, which appeared to be underpinned by the dynamic, contradictory, shifting, plural nature of fatherhood identities. Whilst fathers wished to adhere to the cultural imperative for father–child emotional closeness, a disparity between their ambitions and their conduct emerged. Care appeared to be a deeply gendered concept for the fathers and despite their aspirations for an intimate relationship with their children, gendered norms for motherhood and fatherhood prevailed resulting in passivity in their role as sexuality educators. The study concludes by arguing that challenges to structures and subcultural contexts, which may deter fathers from fully engaging with their sons and daughters in this aspect of communication are required.
Background: Parity of esteem means that end-of-life care for people with severe mental illness should be of equal quality to that experienced by all. Aim: To synthesise international, English language, research and UK policy and guidance relating to the organisation, provision, and receipt of end-of-life care for people with severe mental illness. Design: A mixed methods systematic review was conducted following the Evidence for Policy and Practice Information and Co-ordinating Centre approach and informed by a stakeholder group. We employed thematic synthesis to bring together data from both qualitative and quantitative studies, and from non-research material. We assessed the strength of synthesised findings using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) and Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approaches. Data sources: Ten electronic databases were searched from inception to December 2019, along with 62 organisational websites. Quality appraisal was conducted using Critical Appraisal Skills Programme checklists or other study design-specific alternatives as necessary. Results: Of the 11,904 citations retrieved, 34 research publications were included plus 28 non-research items. The majority of research was of high or acceptable quality. An overarching synthesis including 52 summary statements, with assessments of confidence in the underpinning evidence, was produced using four themes: Structure of the system; Professional issues; Contexts of care; and Living with severe mental illness. Conclusions: Implications for services and practice reflect evidence in which there is a high degree of confidence. Partnership should be developed across the mental health and end-of-life systems, and ways found to support people to die where they choose. Staff caring for people with severe mental illness at the end-of-life need education, support and supervision. End-of-life care for people with severe mental illness requires a team approach, including advocacy. Proactive physical health care for people with severe mental illness is needed to tackle problems of delayed diagnosis.
Contemporary society has grown seemingly detached from the realities of growing old and subsequently, dying. A consequence, perhaps, of death becoming increasingly overmedicalised, nearly one in two UK nationals die institutional deaths. In this article we, two architectural scholars engaged in teaching, research and practice and a nurse and healthcare scholar with a focus on end-of-life care and peoples' experiences, wish to draw attention to a controversy resulting from a paucity in current literature on the terms of reference of the dying 'patient' as we navigate the future implications of the COVID-19 pandemic. This contributes to a relative lack of touchstones for architects to refer to when designing person-centred palliative care environments. Unlike common building types, architects are extremely unlikely to have lived experience of palliative care environments as patients; and therefore, require the help of healthcare professionals to imagine and empathise with the requirements of a person dying away from home. This paper includes a review of ageing and dying literature to understand, and distil from an architectural perspective, who, design professionals, are designing for and to remember the nuanced characteristics of those we hold a duty of care toward. We ask readers to heed the importance of accurate terms of reference, especially when commissioning and/or designing environments of palliative care. Furthermore, we put forward an appeal for interdisciplinary collaboration to develop a framework for codesigning positive experiences of person-centred care and environments at the end of life.
Background People with severe mental illness have significant comorbidities and a reduced life expectancy. This project answered the following question: what evidence is there relating to the organisation, provision and receipt of care for people with severe mental illness who have an additional diagnosis of advanced incurable cancer and/or end-stage lung, heart, renal or liver failure and who are likely to die within the next 12 months? Objectives The objectives were to locate, appraise and synthesise relevant research; to locate and synthesise policy, guidance, case reports and other grey and non-research literature; to produce outputs with clear implications for service commissioning, organisation and provision; and to make recommendations for future research. Review methods This systematic review and narrative synthesis followed international standards and was informed by an advisory group that included people with experience of mental health and end-of-life services. Database searches were supplemented with searches for grey and non-research literature. Relevance and quality were assessed, and data were extracted prior to narrative synthesis. Confidence in synthesised research findings was assessed using the Grading of Recommendations, Assessment, Development and Evaluation and the Confidence in the Evidence from Reviews of Qualitative Research approaches. Results One hundred and four publications were included in two syntheses: 34 research publications, 42 case studies and 28 non-research items. No research was excluded because of poor quality. Research, policy and guidance were synthesised using four themes: structure of the system, professional issues, contexts of care and living with severe mental illness. Case studies were synthesised using five themes: diagnostic delay and overshadowing, decisional capacity and dilemmas, medical futility, individuals and their networks, and care provision. Conclusions A high degree of confidence applied to 10 of the 52 Grading of Recommendations, Assessment, Development and Evaluation and Confidence in the Evidence from Reviews of Qualitative Research summary statements. Drawing on these statements, policy, services and practice implications are as follows: formal and informal partnership opportunities should be taken across the whole system, and ways need to be found to support people to die where they choose; staff caring for people with severe mental illness at the end of life need education, support and supervision; services for people with severe mental illness at the end of life necessitate a team approach, including advocacy; and the timely provision of palliative care requires proactive physical health care for people with severe mental illness. Research recommendations are as follows: patient- and family-facing studies are needed to establish the factors helping and hindering care in the UK context; and studies are needed that co-produce and evaluate new ways of providing and organising end-of-life care for people with severe mental illness, including people who are structurally disadvantaged. Limitations Only English-language items were included, and a meta-analysis could not be performed. Future work Future research co-producing and evaluating care in this area is planned. Study registration This study is registered as PROSPERO CRD42018108988. Funding This project was funded by the National Institute for Health Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research ; Vol. 10, No. 4. See the NIHR Journals Library website for further project information.
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