ORCID Profile
0000-0002-3728-7389
Current Organisations
King's College Hospital
,
King's College London
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Publisher: Cambridge University Press (CUP)
Date: 27-05-2022
DOI: 10.1017/S0033291722000496
Abstract: Data suggest poorer bereavement outcomes for lesbian, gay and bisexual people, but this has not been estimated in population-based research. This study compared bereavement outcomes for partners of same-gender and different-gender decedents. In this population-based, cross-sectional survey of people bereaved of a civil partner or spouse 6–10 months previously, we used adjusted logistic and linear regression to investigate outcomes of interest: (1) positive screen on Inventory of Complicated Grief (ICG), (2) positive screen on General Health Questionnaire (GHQ), (3) grief intensity (ICG) and (4) psychiatric symptoms (GHQ-12). Among 233 same-gender partners and 329 of different-gender partners, 66.1% [95% confidence interval (CI) 60.0–72.2] and 59.2% [95% CI (53.9–64.6)] respectively screened positive for complicated grief on the ICG, whilst 76.0% [95% CI (70.5–81.5)] and 69.3% [95% CI (64.3–74.3)] respectively screened positive on the GHQ-12. Same-gender bereaved partners were not significantly more likely to screen positive for complicated grief than different-gender partners [adjusted odds ratio (aOR) 1.56, 95% CI (0.98–2.47)], p = 0.059, but same-gender bereaved partners were significantly more likely to screen for psychiatric caseness [aOR 1.67 (1.02, 2.71) p = 0.043]. We similarly found no significant association of partner gender with grief intensity [ B = 1.86, 95% CI (−0.91to 4.63), p = 0.188], but significantly greater psychological distress for same-gender partners [ B = 1.54, 95% CI (−0.69–2.40), p 0.001]. Same-gender bereaved partners report significantly more psychological distress. In view of their poorer sub-clinical mental health, clinical and bereavement services should refine screening processes to identify those at risk of poor mental health outcomes.
Publisher: Mark Allen Group
Date: 02-08-2020
DOI: 10.12968/CHHE.2020.1.4.161
Abstract: By Dr Steve Marshall, Professor Andrew Rowland, Susan Higgins, Christina Woods, Lisa Jones, Professor Sandeep Ranote, Dr Iain Lawrie and Fiona Murphy
Publisher: Elsevier BV
Date: 08-2020
Publisher: Mary Ann Liebert Inc
Date: 06-2018
Abstract: The purpose of this review is to explore the literature on the experience of adolescents and young adults (AYAs) having cancer treatment in an adult setting, rather than on a specialist adolescent cancer unit. The integrative review method was used to explore the current literature. Primary research on the topic was located systematically and then synthesized into a thematic narrative. The experience of AYAs undergoing treatment in an adult setting was generally negative. This can be attributed to three themes: feeling isolated in the adult setting the lack of empathy from staff working in the adult setting and the inappropriateness of the adult environment for this age group. As many AYAs with cancer will continue to have treatment in adult settings, staff working in this environment should be aware of the negative experience of this cohort and the impact this can have on a vulnerable group of patients. Staff could consider simple ways of improving the AYA experience, such as connecting AYA patients with their peers to reduce isolation adapting their approach to take account of the unique emotional needs of this age group and considering ways of making the environment more welcoming and age-appropriate.
Publisher: SAGE Publications
Date: 09-2020
Publisher: SAGE Publications
Date: 14-09-2022
DOI: 10.1177/02692163221122302
Abstract: The voices of children and adolescents have historically been substituted by the perspective of adults. There is growing recognition that children ( years old) are able to participate in research and appreciate the opportunity to participate in studies. To share the strategies employed by two research teams from USA and UK, who have successfully recruited children living with parental life-limiting illness as research participants. The researchers overcame common challenges when negotiating ethics committees by anticipating the IRB/REC concerns, providing the committees with detailed applications including distress protocols, and offering resources to their ethics committee to learn about conducting research with this population. The researchers navigated recruitment and gatekeeping by clinicians and parents by partnering with clinical agencies and nurturing relationships with practitioners who are supportive of the research, offering to present the findings of the study with continuing education credits, and developing children’s, adolescents’ and parents’ project advisory groups to support recruitment, data collection and analysis. Simple strategies can be used to overcome barriers to recruitment, providing opportunities for children to be research participants and for their unique perspectives to be heard in palliative care research.
Publisher: SAGE Publications
Date: 12-01-2021
Abstract: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.
Publisher: SAGE Publications
Date: 25-11-2022
DOI: 10.1177/02692163221138620
Abstract: Support from social networks is vital after the death of a partner. Lesbian, gay, bisexual and/or transgender (LGBT+) people can face disenfranchisement and isolation in bereavement. The Acceptance-Disclosure Model (of LGBT+ bereavement) posits that experiences are shaped by the extent to which in iduals feel able to disclose their bereavement to others, and whether that loss is acknowledged appropriately. To explore LGBT+ specific experiences of partner bereavement determine decision-making processes regarding disclosure of relationships/identities and appraise the Acceptance-Disclosure Model using primary qualitative data. Exploratory in-depth qualitative interview study positioned within a social constructivist paradigm. Data were analysed using inductive and deductive reflexive thematic analysis. 21 LGBT+ people from across England bereaved of their civil partner/spouse. Participants described LGBT+ specific stressors in bereavement: lack of recognition of their loss inappropriate questioning unwanted disclosure of gender history and fears of discrimination when accessing support. Disclosure of LGBT+ identities varied across social networks. Some participants described hiding their identities and bereavement to preserve relationships, and challenging intersections between LGBT+ identities and other aspects of culture or self. These findings provide primary evidence to support the Acceptance-Disclosure Model. LGBT+ people face additional stressors in bereavement. Not all LGBT+ people want to talk directly about their relationships/identities. Sensitive exploration of support needs, aligned with preferences around disclosure of identities, can help foster trust. Five recommendations for inclusive practice are presented. Further research should consider whether the Acceptance-Disclosure Model has utility to explain bereavement experiences for other isolated or disenfranchised groups.
Publisher: SAGE Publications
Date: 19-11-2020
Abstract: Although the death of a parent during childhood is relatively commonplace, the voices of children affected by parental life-limiting illness are under-represented in research evidence. Guidance for healthcare professionals is largely based upon professional opinion rather than the experience of children themselves. To synthesise and appraise the literature from primary research with children about their experience of having a parent with a life-limiting illness. Integrative review and thematic synthesis. Registered on PROSPERO (CRD42019094581). PsychINFO, Medline, Embase, Scopus and Web of Science were searched, supplemented by searches of grey literature and systematic reviews. There were no restrictions on publication date, and study quality was appraised using the Hawker checklist. Studies reporting the findings of primary research with participants under 18, whose parent has a life-limiting illness, were eligible for inclusion. Twenty-one papers met the inclusion criteria ( n = 13 qualitative n = 8 quantitative), reporting on n = 18 studies from high-income countries. Findings reveal that throughout parental life-limiting illness, children strive for agency, but are often shielded and excluded by adults. The experience of living with a dying parent is emotionally demanding for children and involves significant caregiving responsibilities. However these children are not passive, developing strategies to cope with the situation and wanting to be involved. The review has enabled the voices of children affected by parental life-limiting illness to be heard and will inform the development of guidance for parents and professionals.
Publisher: BMJ
Date: 31-08-2022
DOI: 10.1136/BMJQS-2022-014792
Abstract: Healthcare organisations have legal and ethical duties to reduce inequalities in access to healthcare services and related outcomes. However, lesbian, gay, bisexual and/or transgender (LGBT+) people continue to experience and anticipate discrimination in health and social care. Skilled communication is vital for quality person-centred care, but there is inconsistent provision of evidence-based clinician education on health needs and experiences of LGBT+ people to support this. This study aimed to identify key stakeholders’ experiences, preferences and best practices for communication regarding sexual orientation, gender identity and gender history in order to reduce inequalities in healthcare. Semistructured qualitative interviews with LGBT+ patients with serious illness, significant others and clinicians, recruited via UK-wide LGBT+ groups, two hospitals and one hospice in England. We analysed the interview data using reflexive thematic analysis. 74 stakeholders participated: 34 LGBT+ patients with serious illness, 13 significant others and 27 multiprofessional clinicians. Participants described key communication strategies to promote inclusive practice across three domains: (1) ‘Creating positive first impressions and building rapport’ were central to relationship building and enacted through routine use of inclusive language, avoiding potentially negative non-verbal signals and echoing terminology used by patients and caregivers (2) ‘Enhancing care by actively exploring and explaining the relevance of sexual orientation and gender identity’, participants described the benefits of clinicians initiating these discussions, pursuing topics guided by the patient’s response or expressed preferences for disclosure. Active involvement of significant others was encouraged to demonstrate recognition of the relationship these in idual level actions are underpinned by a foundation of (3) ‘visible and consistent LGBT+ inclusiveness in care systems’. Although participants expressed hesitance talking about LGBT+ identities with in iduals from some sociocultural and religious backgrounds, there was widespread support for institutions to adopt a standardised, LGBT+ inclusive, visibly supportive approach. Person-centred care can be enhanced by incorporating discussions about sexual orientation and gender identity into routine clinical practice. Inclusive language and sensitive exploration of relationships and identities are core activities. Institutions need to support clinicians through provision of adequate training, resources, inclusive monitoring systems, policies and structures. Ten inclusive communication recommendations are made based on the data.
Publisher: SAGE Publications
Date: 29-06-2022
DOI: 10.1177/02692163221105564
Abstract: Healthcare professionals report challenges in supporting dying patients who have dependent children. These parents are often uncertain how to meet the needs of their children and require appropriate support from professionals. There is limited evidence based guidance for professionals around this issue, which is informed by the views and experiences of children themselves. To develop an understanding of the perspective of children on living with parental life-limiting illness and inform recommendations for healthcare professionals. Qualitative semi-structured interviews were conducted, with thematic analysis of the data. A erse s le of 32 children aged 6–17, whose parent was living with life-limiting illness, were recruited from across the United Kingdom. Despite the challenges of living with a parent with a life-limiting illness, the children display agency in their response. The children: feel a responsibility to look after their family negotiate a relationship with healthcare employ strategies to maintain some normality and ensure that the inevitable sadness does not become overwhelming. Five recommendations for healthcare professionals were developed from the findings. Clinicians should encourage dying parents to: (1) acknowledge the agency of children (2) recognise children’s caregiving roles (3) engender children’s trust in healthcare (4) maintain some normality and (5) discuss emotions with their children. Implementing these recommendations will assist parents with a life-limiting illness to provide evidence-based support to their dependent children.
Publisher: Mary Ann Liebert Inc
Date: 02-2019
Abstract: The concept of liminality has been applied to both the experience of adolescence and to the experience of a cancer diagnosis. The aim of this study was to explore how the concept of liminality can be applied to a cohort of patients experiencing both adolescence and cancer concurrently. Thematic analysis was applied to data from interviews with 17 participants who had been treated for cancer between the ages of 15 and 24 in an adult hospital. As the analysis developed, it became apparent that liminality was a useful conceptual framework to be applied to the data. Participants experienced the liminality of both adolescence and cancer. Four subthemes revealed the interaction of these two liminal states: an oscillation between childhood and adulthood a disassociation from noncancer peers a strong connection with other adolescents and young adults (AYAs) with cancer and a lack of connection with older cancer peers. A model of dual liminality provides a unique conceptualization of the AYA cancer experience. Cancer in the AYA years is depicted as a navigation of two compounding transitional periods. Adolescence and cancer exacerbate one another and impede the AYA's ability to progress through either. It is this compounding of two transitional periods that makes the model of dual liminality valuable to an understanding of AYAs with cancer.
Publisher: Elsevier BV
Date: 04-2018
DOI: 10.1016/J.EJON.2018.02.001
Abstract: Although the UK has pioneered the development of specialist adolescent cancer units, the majority of teenagers and young adults (TYAs) continue to be treated at their local hospital or at a cancer centre alongside adults of all ages. This study aimed to elicit young people's views on this experience of having cancer treatment in an adult setting. Seventeen participants who had been treated for cancer in an adult hospital between the ages of 15 and 24 were recruited via cancer charities and social media. Telephone interviews were conducted with the participants and the resulting data were analysed using thematic analysis. Already feeling out of sync as a TYA with cancer, participants felt out of place in the adult setting. Four factors contributed to this negative experience: a lack of affinity with older patients the challenging issues in the adult setting the absence of empathy towards TYAs by staff and the unsuitability of the environment for adolescents. Staff working with TYAs with cancer in the adult setting should be aware of the potentially detrimental impact of this environment on this cohort of patients, and consider ways of adapting and modifying their approach.
Publisher: SAGE Publications
Date: 10-07-2016
Abstract: Socially excluded populations have poorer access to care however, little attention has been paid to lesbian, gay, bisexual and/or trans* people. Lesbian, gay, bisexual and/or trans* people are at increased risk of certain life-limiting illnesses and may not receive the care and support they need at the end of life and into bereavement. To identify and appraise the evidence of the bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner and develop an explanatory model of lesbian, gay, bisexual and/or trans* partner bereavement. Systematic review (in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines) and thematic synthesis with assessment of reporting and rigour. Quantitative or qualitative articles reporting bereavement experiences of lesbian, gay, bisexual and/or trans* partners were included, excluding articles reporting multiple losses in the context of HIV or AIDS. PsycINFO, MEDLINE, Web of Science, Scopus, Cochrane Library. Inclusion dates: database inception – 30 April 2015. A total of 23 articles reporting on 13 studies were identified. Studies described universal experiences of the pain of losing a partner however, additional barriers and stressors were reported for lesbian, gay, bisexual and/or trans* people, including homophobia, failure to acknowledge the relationship, additional legal and financial issues and the ‘shadow’ of HIV or AIDS. A novel model was developed to explain how the experience for lesbian, gay, bisexual and/or trans* people is shaped by whether the relationship was disclosed and acknowledged in life and into bereavement and how this impacts upon needs and access to care. There is a need for healthcare providers to avoid hetero-normative assumptions be mindful of additional stressors in bereavement for lesbian, gay, bisexual and/or trans* people and consider additional sources of support to deliver in idualised holistic care.
Publisher: Royal College of Physicians
Date: 03-2021
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Start Date: 2018
End Date: 2020
Funder: Marie Curie Cancer Care
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