The experience of emotional distress and help-seeking for distress in families living with advanced cancer and receiving palliative care: a multi-perspective case study approach

The emotional impact of serious illness in families is recognised. To enhance well-being in families living we must understand how distress is experienced within families; from this, evidenced-based systemic distress interventions can be derived. However, the success of systemic intervention programmes is reliant on whether families will seek help (or not) for distress. This PhD by publication explores emotional distress and help-seeking in families living with advanced cancer. Papers one and two used systematic review techniques. Paper one evidenced distress as a systemic construct and proposes the tiered model of distress to convey current understandings. Paper two offers the attaining normality model to convey why some people seek help for distress to achieve a new normality whereas some choose not to seek help to maintain normality. Together, these papers evidence gaps in systemic understandings of distress and help-seeking; from this an exploratory cross-sectional multiple case study of families was proposed. Papers three and four provided methodological underpinning to this research through the development of the DESCARTE model: The Design of Case Study Research in Healthcare (paper three) used in the case study design; paper four reflects on multi-perspective interviewing methods used. Distress and help-seeking are conceived as systemic relational phenomena, occurring within the family system and arising from relational interaction with healthcare. Distress is conveyed through four themes: interdependent distress, living in uncertainty, unnecessary distress and oscillatory distress; from this, possible systemic intervention designs are offered (paper five). Non-help-seeking for distress was the predominant response in families. The mutuality model of help-seeking is proposed to synthesise current understandings (paper six). Families describe how healthcare interactions cause unnecessary distress and shapes families’ help-seeking behaviours. Findings indicate significant gaps between the rhetoric of palliative care policy and families’ experience. To improve families’ wellbeing, relational care must be embedded in policy and practice

Seeking, accepting and declining help for emotional distress in cancer: A systematic review and thematic synthesis of qualitative evidence

Many individuals affected by cancer who experience emotional distress report not wanting help. This review aims to understand why individuals affected by cancer seek, accept or decline help for emotional distress and what influences these actions. A systematic review and thematic synthesis of the qualitative literature was conducted. Using pre-defined search terms, four electronic databases were searched from January 2000 to May 2016. Pre-determined inclusion and exclusion criteria were then applied. Identified papers were quality appraised. In total, 32 papers were included in the synthesis. Four themes emerged from data synthesis: attaining normality—the normality paradox; being emotionally literate; perceptions of help; needs-support gap. Attaining normality is ideographic, context dependent and temporally situated; some individuals maintain normality by not seeking/declining help whereas others seek/accept help to achieve a new normality. Thus, attaining normality paradoxically functions to explain both why individuals sought/accepted help or did not seek/declined help. Data indicate that a context dependent, systems thinking approach is merited to enhance psychosocial care. In particular, clinicians must actively explore the personal context of an individual's distress to ensure that help desired and help offered are mutually understood. Further research must address the limitations of the current evidence base to advance theoretical understanding

An Exploratory Qualitative Study of Computer Screening to Support Decision-Making about Use of Palliative Care Registers in Primary Care:GP Think Aloud and Patient and Carer Interviews

Objectives: This study aimed to understand factors that influence general practitioner (GP) use of automated computer screening to identify patients for the palliative care register (PCR) and the experiences of palliative care and this emerging technology from patients’ and carers’ perspectives. Methods: A computer screening program electronically searches primary care records in routine clinical practice to identify patients with advanced illness who are not already on a PCR. Five GPs were asked to “think aloud” about adding patients identified by computer screening to the PCR. Key informant interviews with 6 patients on the PCR and 4 carers about their experiences of palliative care while on the PCR and their views of this technology. Data were analyzed thematically. Results and Conclusions: Using computer screening, 29% additional patients were added by GPs to the PCR. GP decision-making for the PCR was informed by clinical factors such as: if being treated with curative intent; having stable or unstable disease; end-stage disease, frailty; the likelihood of dying within the next 12 months; and psychosocial factors such as, age, personality, patient preference and social support. Six (60%) patients/carers did not know that they/their relative was on the PCR. From a patient/carer perspective, having a non-curative illness was not in and of itself sufficient reason for being on the PCR; other factors such as, unstable disease and avoiding pain and suffering were equally if not more, important. Patients and carers considered that computer screening should support but not replace, GP decision-making about the PCR. Computer screening merits ongoing development as a tool to aid clinical decision-making around entry to a PCR, but should not be used as a sole criterion. Care need, irrespective of diagnosis, disease trajectory or prognosis, should determine care.</p

Exploring barriers to care home research recruitment during the COVID-19 pandemic:The influence of social media recruitment posts and public sentiment

IntroductionRecruitment of care home staff to research studies is recognised as challenging. This was further exacerbated by the COVID-19 pandemic and the associated negative media portrayal of care home workers. Social media use has surged since the onset of COVID-19 lockdowns, offering a plausible approach to understanding the barriers to care home research recruitment and gaining insight into public perceptions of care home workers.AimTo utilise comments from two Facebook recruitment posts to: 1) gain an understanding of potential barriers to recruitment of healthcare workers (HCWs) in UK care homes, and 2) explore public sentiment towards care home research and care homes in the context of the COVID-19 pandemic.MethodsThis cross-sectional study analysed comments from two Facebook posts (available June-October 2021) advertising a separate study on psychological support for care staff during the pandemic. This study was situated within a larger investigation into the mental health and wellbeing of care home staff and employed both qualitative analysis and quantitative methods (word count and correlations between words used and between posts).ResultsThree themes were identified from the qualitative analysis: support, mistrust and blame. There was a greater use of words associated with support and negative emotive words in post 2. Post 2 comments featured significantly more choice words and first-person singular pronouns than post 1 which indicated a resentful sentiment from those who advocate freedom of choice and control. Discussion of mistrust towards researchers was most prominent in post 1 indicating the importance of relationship building between researchers and HCWs in UK care homes. With attribution to blame, there was a larger range of negative emotion words than positive emotion words.Discussion and conclusionTaken together our findings offer novel insights into why recruitment to care home research during the pandemic including the use of social media might be problematic. Social media is a useful tool for recruitment but should not be considered as a one-time input. Researchers should pro-actively engage with the study population from the start using co-design with resident and public groups to support recruitment and ensure these populations are accurately represented within research

Last Aid Training online:Participants’ and facilitators’ perceptions from a mixed-methods study in rural Scotland

(1) Background: Palliative and end-of-life care services are increasingly gaining centre stage in health and social care contexts in the UK and globally. Death and dying need are relational processes. Building personal and community capacity along with resilience is vital to support families and communities to normalise death and dying. Last Aid Training (LAT) is one such innovative educational initiative which teaches the general public about the fundamentals of palliative care and promotes public discussion about death and dying. The Highland Hospice [HH] in Scotland has pioneered delivery of LAT in face-to-face settings since March 2019 and online since March 2020 to accommodate pandemic restrictions. (2) Methods: This study used a mixed-methods approach, combining an online survey with LAT participants followed by individual semi-structured qualitative interviews with both LAT participants and facilitators. The primary aim of this study was to investigate the impacts of LAT for participants at the individual, family, and community levels, as well as explore participant and facilitator experiences and perspectives of LAT in an online environment. (3) Results: Overall, this evaluation demonstrates that provision of foundational death literacy education in social contexts enhances the personal knowledge, skills, and confidence of individual community members and supports the notion that this personal growth could lead to strengthened community action. (4) Conclusions: Findings from this study concluded that there is potential to include LAT as the foundational core training to promote death literacy in communities with further exploration to integrate/align LAT with other national/global end-of-life care frameworks

Uptake and effects of psychological first aid training for healthcare workers’ wellbeing in nursing homes: A UK national survey

Aims Psychological First Aid is a brief intervention based on international guidance from the World Health Organisation. Free to access online training in the intervention was introduced during the COVID-19 pandemic in UK. We aimed to determine the uptake of Psychological First Aid training among healthcare workers in care homes in the UK and to assess its effects on their wellbeing. Design This was a sequential mixed methods design. Methods Healthcare workers (nurses and carers) working in care homes in the UK were surveyed about their uptake of Psychological First Aid, their stress, coping efficacy and the key concepts of Psychological First Aid (safety, calmness, hopefulness, connectedness, and accomplishment). Those that completed the Psychological First Aid training were asked to share their experiences via qualitative survey. Data collection was conducted between June and October 2021. Analyses included descriptive statistics and regression analysis. A six step thematic analysis was used to interpret the qualitative data. Results 388 participants responded to the survey. The uptake of Psychological First Aid training was 37 (9.5%). Psychological first aid was a significant predictor for coping efficacy (β = 17.54, p = .001). Participants with a physical or mental health condition experienced higher stress and lower coping regardless of PFA training. Four themes were identified from the qualitative analysis: self-awareness and growth, relationships with others, overcoming stress and accessibility. Conclusion While this study suggests some benefits to healthcare workers in care home settings undergoing PFA the poor uptake of the training warrants further investigation. Impact Care home staff need psychological support. This gap remains as few completed PFA training. This is the first study in UK and worldwide to look at the effects of psychological first aid on stress and coping in this population and it warrants further investigation

Psychological first aid for workers in care and nursing homes: systematic review

Background: The Covid-19 pandemic has produced unprecedented challenges across all aspects of health and social care sectors globally. Nurses and healthcare workers in care homes have been particularly impacted due to rapid and dramatic changes to their job roles, workloads, and working environments, and residents’ multimorbidity. Developed by the World Health Organisation, Psychological First Aid (PFA) is a brief training course delivering social, emotional, supportive, and pragmatic support that can reduce the initial distress after disaster and foster future adaptive functioning. Objectives: This review aimed to synthesise findings from studies exploring the usefulness of PFA for the well-being of nursing and residential care home staff. Methods: A systematic search was conducted across 15 databases (Social Care Online, Kings Fund Library, Prospero, Dynamed, BMJ Best Practice, SIGN, NICE, Ovid, Proquest, Campbell Library, Clinical Trials, Web of Knowledge, Scopus, Ebsco CINAHL, and Cochrane Library), identifying peer-reviewed articles published in English language from database inception to 20th June 2021. Results: Of the 1,159 articles screened, 1,146 were excluded at title and abstract; the remaining 13 articles were screened at full text, all of which were then excluded. Conclusion: This review highlights that empirical evidence of the impact of PFA on the well-being of nursing and residential care home staff is absent. PFA has likely been recommended to healthcare staff during the Covid-19 pandemic. The lack of evidence found here reinforces the urgent need to conduct studies which evaluates the outcomes of PFA particularly in the care home staff population

The genomes of two key bumblebee species with primitive eusocial organization

Background: The shift from solitary to social behavior is one of the major evolutionary transitions. Primitively eusocial bumblebees are uniquely placed to illuminate the evolution of highly eusocial insect societies. Bumblebees are also invaluable natural and agricultural pollinators, and there is widespread concern over recent population declines in some species. High-quality genomic data will inform key aspects of bumblebee biology, including susceptibility to implicated population viability threats. Results: We report the high quality draft genome sequences of Bombus terrestris and Bombus impatiens, two ecologically dominant bumblebees and widely utilized study species. Comparing these new genomes to those of the highly eusocial honeybee Apis mellifera and other Hymenoptera, we identify deeply conserved similarities, as well as novelties key to the biology of these organisms. Some honeybee genome features thought to underpin advanced eusociality are also present in bumblebees, indicating an earlier evolution in the bee lineage. Xenobiotic detoxification and immune genes are similarly depauperate in bumblebees and honeybees, and multiple categories of genes linked to social organization, including development and behavior, show high conservation. Key differences identified include a bias in bumblebee chemoreception towards gustation from olfaction, and striking differences in microRNAs, potentially responsible for gene regulation underlying social and other traits. Conclusions: These two bumblebee genomes provide a foundation for post-genomic research on these key pollinators and insect societies. Overall, gene repertoires suggest that the route to advanced eusociality in bees was mediated by many small changes in many genes and processes, and not by notable expansion or depauperation

Changes in agonist neural drive, hypertrophy and pre-training strength all contribute to the individual strength gains after resistance training.

PURPOSE: Whilst neural and morphological adaptations following resistance training (RT) have been investigated extensively at a group level, relatively little is known about the contribution of specific physiological mechanisms, or pre-training strength, to the individual changes in strength following training. This study investigated the contribution of multiple underpinning neural [agonist EMG (QEMGMVT), antagonist EMG (HEMGANTAG)] and morphological variables [total quadriceps volume (QUADSVOL), and muscle fascicle pennation angle (QUADSθ p)], as well as pre-training strength, to the individual changes in strength after 12 weeks of knee extensor RT. METHODS: Twenty-eight healthy young men completed 12 weeks of isometric knee extensor RT (3/week). Isometric maximum voluntary torque (MVT) was assessed pre- and post-RT, as were simultaneous neural drive to the agonist (QEMGMVT) and antagonist (HEMGANTAG). In addition QUADSVOL was determined with MRI and QUADSθ p with B-mode ultrasound. RESULTS: Percentage changes (∆) in MVT were correlated to ∆QEMGMVT (r = 0.576, P = 0.001), ∆QUADSVOL (r = 0.461, P = 0.014), and pre-training MVT (r = -0.429, P = 0.023), but not ∆HEMGANTAG (r = 0.298, P = 0.123) or ∆QUADSθ p (r = -0.207, P = 0.291). Multiple regression analysis revealed 59.9% of the total variance in ∆MVT after RT to be explained by ∆QEMGMVT (30.6%), ∆QUADSVOL (18.7%), and pre-training MVT (10.6%). CONCLUSIONS: Changes in agonist neural drive, quadriceps muscle volume and pre-training strength combined to explain the majority of the variance in strength changes after knee extensor RT (~60%) and adaptations in agonist neural drive were the most important single predictor during this short-term intervention