Sexuality in palliative care

2021 ◽  
pp. 698-707
Author(s):  
Lauren Kadwell ◽  
Jane Ussher ◽  
Emilee Gilbert ◽  
Janette Perz ◽  
Amanda Hordern
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Sense Of Self ◽  
Sexual Relationships ◽  
Chronic Illnesses ◽  
Natural Ageing ◽  
The Impact

Experiencing a life-limiting illness has the potential to radically transform every aspect of a person’s life, including how they feel about themselves, their body, and their sense of self within intimate and sexual relationships. For many people with a life-limiting illness, intimate and sexual moments are a vital aspect of their life, providing a sense of connectedness and assisting the person to explore and find meaning to living, dying, and death. Few health professionals view patients in their care as sexual beings and if they do, they struggle to know what and how to raise the topic of sexuality and intimacy within their clinical roles. This chapter defines patient sexuality and intimacy in the context of palliative care, explores the impact of natural ageing and treatment for cancer and chronic illnesses, and provides an introduction to opening communication and providing practical strategies to support the patient through intimate and sexual changes.

Sexual dysfunction: discussing patient sexuality and intimacy in palliative care

2015 ◽  
Author(s):  
Amanda Hordern
Keyword(s):  
Palliative Care ◽  
Sexual Dysfunction ◽  
Health Professionals ◽  
Sense Of Self ◽  
Death And Dying ◽  
Terminally Ill ◽  
Sexual Relationships ◽  
Chronic Illnesses ◽  
Natural Ageing ◽  
The Impact

Experiencing a life-limiting illness has the potential to radically transform every aspect of a person’s life, including how they feel about themselves, their body, and their sense of self within intimate and sexual relationships. For many terminally ill people, intimate and sexual moments are a vital aspect of their life, providing a sense of connectedness and assisting the person to explore and find meaning to living, death, and dying. Few health professionals view patients in their care as sexual beings and if they do, they struggle to know what and how to raise the topic of sexuality and intimacy within their clinical roles. This chapter defines patient sexuality and intimacy in the context of palliative care, explores the impact of natural ageing and treatment for cancer and chronic illnesses, and provides an introduction to opening communication and providing practical strategies to support the patient through intimate and sexual changes.

scholarly journals The impact of the environment on patient experiences of hospital admissions in palliative care

2015 ◽  
Vol 8 (4) ◽  
pp. 485-492 ◽  
Author(s):  
Jackie Robinson ◽  
Merryn Gott ◽  
Clare Gardiner ◽  
Christine Ingleton
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Hospital Admissions ◽  
Hospital Setting ◽  
Prognostic Indicators ◽  
Care Needs ◽  
Acute Hospitals ◽  
Almost All ◽  
The Impact ◽  
Palliative Care Needs

ObjectiveTo explore the impact of environment on experiences of hospitalisation from the perspective of patient's with palliative care needs.MethodsA qualitative study design using longitudinal semistructured, face-to-face interviews were used to elicit the views of patients with palliative care needs admitted to hospital in 1 large urban acute hospital in New Zealand. The sample comprised of 14 patients admitted to hospital between July 2013 and March 2014 who met one of the Gold Standard Framework Prognostic Indicators for palliative care need.ResultsAlmost all participants described a range of factors associated with the environment which impacted negatively on their experiences of hospitalisation. This included challenges with the physical surroundings, the impact on social relationships with other patients, families and health professionals and the influence of the cultural milieu of the hospital setting.ConclusionsEmulating the ‘ideal’ environment for palliative care such as that provided in a hospice setting is an unrealistic goal for acute hospitals. Paying attention to the things that can be changed, such as enabling family to stay and improving the flexibility of the physical environment while improving the social interplay between patients and health professionals, may be a more realistic approach than replicating the hospice environment in order to reduce the burden of hospitalisations for patients with palliative care needs.

scholarly journals Self-reported impact of caregiving on voluntary home-based caregivers in Mutale Municipality, South Africa

2016 ◽  
Vol 8 (2) ◽  
Author(s):  
Ntsieni S. Mashau ◽  
Vhonani O. Netshandama ◽  
Makondelela J. Mudau
Keyword(s):  
Palliative Care ◽  
Survey Design ◽  
The Elderly ◽  
Chronic Illnesses ◽  
Limpopo Province ◽  
Cross Sectional ◽  
Home Based ◽  
Home Based Care ◽  
Descriptive Survey ◽  
The Impact

Background: The establishment of home-based care (HBC) programmes in developing countries has resulted in a shift of burden from hospitals to communities where palliative care is provided by voluntary home-based caregivers.Aim: The study investigated the impact of caregiving on voluntary home-based caregivers.Setting: The study was conducted at HBC organisations located in Mutale Municipality of Limpopo Province, South Africa.Methods: A quantitative cross-sectional descriptive survey design was applied to investigate the impact of caregiving on voluntary home-based caregivers. The sample was comprised of (N = 190) home-based caregivers. Home-based caregivers provide care to people in need of care in their homes, such as orphans, the elderly and those suffering from chronic illnesses such as tuberculosis, HIV and/or AIDS, cancer and stroke. Self-administered questionnaires were used to collect data which were analysed descriptively using the Statistical Package for the Social Sciences software, Version 20.Results: The results showed that 101 (53.2%) participants were worried about their financial security because they were not registered as workers, whilst 74 (39.0%) participants were always worried about getting infection from their clients because they often do not have protective equipment.Conclusion: Voluntary home-based caregivers have an important role in the provision of palliative care to people in their own homes, and therefore, the negative caregiving impact on the lives of caregivers may compromise the provision of quality palliative care.

Māori Research(er) in Three Poems

2018 ◽  
Vol 2 (1) ◽  
pp. 35
Author(s):  
Jacquie Kidd
Keyword(s):  
Palliative Care ◽  
Health Literacy ◽  
Cultural Identity ◽  
Focus Groups ◽  
Health Professionals ◽  
Bell Hooks ◽  
Face To Face ◽  
The Third ◽  
Ruth Behar ◽  
Seeking Help

These three poems re-present the findings from a research project that took place in 2013 (Kidd et al. 2018, Kidd et al. 2014). The research explored what health literacy meant for Māori patients and whānau when they accessed palliative care. Through face-to-face interviews and focus groups we engaged with 81 people including patients, whānau, bereaved loved ones, support workers and health professionals. The poems are composite, written to bring some of our themes to life. The first poem is titled Aue. This is a Māori lament that aligns to English words such as ‘oh no’, or ‘arrgh’, or ‘awww’. Each stanza of the poem re-presents some of the stories we heard throughout the research. The second poem is called Tikanga. This is a Māori concept that encompasses customs, traditions and protocols. There are tikanga rituals and processes that guide all aspects of life, death, and relationships. This poem was inspired by an elderly man who explained that he would avoid seeking help from a hospice because ‘they leave tikanga at the door at those places’. His choice was to bear his pain bravely, with pride, within his cultural identity. The third poem is called ‘People Like Me’. This is an autoethnographical reflection of what I experienced as a researcher which draws on the work of scholars such as bell hooks (1984), Laurel Richardson (1997) and Ruth Behar (1996). These and many other authors encourage researchers to use frustration and anger to inform our writing; to use our tears to fuel our need to publish our research.

What Gives a Diagnostic Label Value? Common Use Over Informativeness

2019 ◽  
Author(s):  
Babak Hemmatian ◽  
Sze Yu Yu Chan ◽  
Steven A. Sloman
Keyword(s):  
Mental Health ◽  
Mental Health Professionals ◽  
Health Professionals ◽  
Causal Relation ◽  
Causal Beliefs ◽  
Diagnostic Categories ◽  
Diagnostic Labels ◽  
Diagnostic Label ◽  
The Impact ◽  
Practical Implications

A label’s entrenchment, its degree of use by members of a community, affects its perceived explanatory value even if the label provides no substantive information (Hemmatian & Sloman, 2018). In three experiments, we show that laypersons and mental health professionals see entrenched psychiatric and non-psychiatric diagnostic labels as better explanations than non-entrenched labels even if they are circular. Using scenarios involving experts who discuss unfamiliar diagnostic categories, we show that this preference is not due to violations of conversational norms, lack of reflectiveness or attentiveness, and the characters’ familiarity or unfamiliarity with the label. In Experiment 1, whether a label provided novel symptom information or not had no impact on lay responses, while its entrenchment enhanced ratings of explanation quality. The effect persisted in Experiment 2 for causally incoherent categories and regardless of direct provision of mechanistic information. The effect of entrenchment was partly related to induced causal beliefs about the category, even when participants were informed there is no causal relation. Most participants in both experiments did not report any effect of entrenchment and the effect was present for those who did not. In Experiment 3, mental health professionals showed the effect using diagnoses that were mere shorthands for symptoms, despite a tendency to rate all explanations as unsatisfactory. The data suggest that bringing experts’ attention to the manipulation eliminates the effect. We discuss practical implications for mental health disciplines and potential ways to mitigate the impact of entrenchment.

“Scrap-Heap Storiesˮ: Oral Narratives of Labour and Loss in Scottish Mining and Manufacturing

2020 ◽  
Vol 31 (2-2018) ◽  
pp. 8-21
Author(s):  
Arthur McIvor
Keyword(s):  
Working Class ◽  
Lived Experience ◽  
Oral History ◽  
Job Loss ◽  
Sense Of Self ◽  
Oral Narratives ◽  
Industrial Work ◽  
Working Lives ◽  
Plant Closures ◽  
The Impact

This article is an attempt to comprehend deindustrialisation and the impact of plant downsizing and closures in Scotland since the 1970s through listening to the voices of workers and reflecting on their ways of telling, whilst making some observations on how an oral history methodology can add to our understanding. It draws upon a rich bounty of oral history projects and collections undertaken in Scotland over recent decades. The lush description and often intense articulated emotion help us as academic “outsidersˮ to better understand how lives were profoundly affected by plant closures, getting us beyond statistical body counts and overly sentimentalised and nostalgic representations of industrial work to more nuanced understandings of the meanings and impacts of job loss. In recalling their lived experience of plant run-downs and closures, narrators are informing and interpreting; projecting a sense of self in the process and drawing meaning from their working lives. My argument here is that we need to listen attentively and learn from those who bore witness and try to make sense of these diverse, different and sometimes contradictory stories. We should take cognisance of silences and transgressing voices as well as dominant, hegemonic narratives if we are to deepen the conversation and understand the complex but profound impacts that deindustrialisation had on traditional working-class communities in Scotland, as well as elsewhere.

scholarly journals Disease monitoring of biologic treatment in IBD: early impact and future implications of COVID-19 pandemic

2020 ◽  
pp. flgastro-2020-101563
Author(s):  
Stephanie Shields ◽  
Allan Dunlop ◽  
John Paul Seenan ◽  
Jonathan Macdonald
Keyword(s):  
Clinical Care ◽  
Chronic Illnesses ◽  
Therapeutic Drug ◽  
Disease Monitoring ◽  
Biologic Treatment ◽  
Faecal Calprotectin ◽  
Routine Clinical Care ◽  
Risk Of Disease ◽  
Inflammatory Bowel ◽  
The Impact

COVID-19 has dominated life in 2020 with, at the time of writing, over 4.9M global cases and >320 000 deaths. The impact has been most intensely felt in acute and critical care environments. However, with most UK elective work postponed, laboratory testing of faecal calprotectin halted due to potential risk of viral transmission and non-emergency endoscopies and surgeries cancelled, the secondary impact on chronic illnesses such as inflammatory bowel disease (IBD) is becoming apparent. Data from the Scottish Biologic Therapeutic Drug Monitoring (TDM) service shows a dramatic drop in TDM testing since the pandemic onset. April 2020 saw a 75.6% reduction in adalimumab testing and a 36.2% reduction in infliximab testing when compared with February 2020 data, a reduction coinciding with the widespread cancellation of outpatient and elective activity. It is feared that disruption to normal patterns of care and disease monitoring of biologic patients could increase the risk of disease flare and adverse clinical outcomes. Urgent changes in clinical practice have been instigated to mitigate the effects of the pandemic on routine clinical care. Further transformations are needed to maintain safe, effective, patient-centred IBD care in the future.

scholarly journals Mental health professional perspectives on health data sharing: Mixed methods study

2020 ◽  
Vol 26 (3) ◽  
pp. 2067-2082 ◽  
Author(s):  
Adela Grando ◽  
Julia Ivanova ◽  
Megan Hiestand ◽  
Hiral Soni ◽  
Anita Murcko ◽  
...  
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Health Professionals ◽  
Mixed Methods Study ◽  
Qualitative And Quantitative Analysis ◽  
Qualitative And Quantitative ◽  
Patient Comprehension ◽  
Professional Perspectives ◽  
The Impact ◽  
Perceived Reasons

This study explores behavioral health professionals’ perceptions of granular data. Semi-structured in-person interviews of 20 health professionals were conducted at two different sites. Qualitative and quantitative analysis was performed. While most health professionals agreed that patients should control who accesses their personal medical record (70%), there are certain types of health information that should never be restricted (65%). Emergent themes, including perceived reasons that patients might share or withhold certain types of health information (65%), care coordination (12%), patient comprehension (11%), stigma (5%), trust (3%), sociocultural understanding (3%), and dissatisfaction with consent processes (1%), are explored. The impact of care role (prescriber or non-prescriber) on data-sharing perception is explored as well. This study informs the discussion on developing technology that helps balance provider and patient data-sharing and access needs.

Using an App to monitor postoperative pain at home in pediatric patients

2021 ◽  
pp. 136749352091931
Author(s):  
Emanuela Tiozzo ◽  
Valentina Biagioli ◽  
Matilde Brancaccio ◽  
Riccardo Ricci ◽  
Anna Marchetti ◽  
...  
Keyword(s):  
Postoperative Pain ◽  
Pain Intensity ◽  
Health Professionals ◽  
Pediatric Patients ◽  
Pain Scale ◽  
Factors Associated ◽  
Prospective Comparative Study ◽  
Paper And Pencil ◽  
The Impact ◽  
At Home

A prospective comparative study was conducted in 487 pediatric patients (69% male, mean age = 6.4 ± 4.0) to evaluate (a) the incidence, intensity, and characteristics of pain in pediatric patients at home during the first 24 hours and 5 days after surgery and (b) the factors associated with higher pain intensity, including the impact of an application (App) compared to the paper-and-pencil approach. Postoperative pain was assessed by patients or their parents at home using the ‘Bambino Gesù’ Children’s Hospital (Ospedale Pediatrico Bambino Gesù, OPBG) tool for participants aged 4–17 years or the Faces, Legs, Arms, Cry, and Consolability scale for participants less than four years old. Participants were assigned to two groups: those who used the paper-and-pencil version of the pain scale and those who used the App. Overall, 209 of the 472 (44%) participants reported pain during the first 24 hours, and 92 of the 420 (22%) reported pain between one and five days after surgery. Higher pain intensity scores were associated with being in the App group, directly assessing own pain, and using the OPBG tool. The App was effective in facilitating pain assessment. Health professionals could empower pediatric patients and their parents in assessing pain at home through a dedicated App.

scholarly journals Does Multidisciplinary Team Simulation-Based Training Improve Obstetric Emergencies Skills?

Healthcare ◽  
2021 ◽  
Vol 9 (2) ◽  
pp. 170
Author(s):  
Encarna Hernández ◽  
Marcos Camacho ◽  
César Leal-Costa ◽  
María Ruzafa-Martínez ◽  
Antonio Jesús Ramos-Morcillo ◽  
...  
Keyword(s):  
Health Professionals ◽  
Multidisciplinary Team ◽  
Simulation Training ◽  
Observer Agreement ◽  
Second Phase ◽  
High Fidelity ◽  
Breech Delivery ◽  
Obstetric Emergencies ◽  
Quasi Experimental ◽  
The Impact

Clinical simulation in obstetrics has turned out to be a tool that can reduce the rate of perinatal morbidity and mortality. The objective of this study was to analyze the impact and evaluate the effects of training with high-fidelity simulation of obstetric emergencies on a multidisciplinary group. The quasi-experimental research study was structured in three phases: a first phase where the most important obstetric emergencies were determined, a second phase of design and development of the selected cases for simulation training, and a third and final phase where the abilities and satisfaction of the multidisciplinary team were analyzed. Three scenarios and their respective evaluation tools of obstetric emergencies were selected for simulation training: postpartum hemorrhage, shoulder dystocia, and breech delivery. The health professionals significantly improved their skills after training, and were highly satisfied with the simulation experience (p < 0.05). An inter-observer agreement between good and excellent reliability was obtained. Regarding conclusions, we can state that high-fidelity obstetric emergency simulation training improved the competencies of the health professionals.

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