Le dévoilement de soi occupe une part significative des interventions initiales des fils de discussions sur les plateformes numériques de soutien social. Si ce type d’intervention répond au besoin des participants de s’exprimer, de partager leurs émotions, il pose des défis aux interlocuteurs en raison de l’absence de demande explicite de soutien. L’analyse des interactions d’un forum de soutien social en ligne pour personnes atteintes d’un cancer et leurs proches (2017-2018) vise à comprendre comment ce partage d’émotions et d’expériences (...) est interprété et répondu par les pairs, évaluant le cadre interactionnel activé dans de tels contextes. Les résultats montrent que si des actes de prescriptions de comportements et d’attitudes non sollicitées sont présents dans la grande majorité des fils, ils s’articulent finement à des actes d’empathie, qui permettent d’atténuer la force intrusive du soutien. L’analyse révèle aussi comment la formulation du dévoilement de soi influence le soutien offert (empathique/prescriptif). Au final, la présentation des formes d’accomplissement du soutien en réaction au dévoilement de soi permet d’envisager des pistes d’action pour favoriser l’engagement et le bien-être psychosocial des membres de ces forums. (shrink)

This study explored 12 cancer patients’ experiences from participating in an online and on-site Shared Reading group for 16 weeks in Norway. Shared Reading is a practice in which prose and poetry are read aloud in small parts and discussed along the way. The study is a qualitative evaluation study with a particular focus on how the participants experienced the reading group supported their life living with cancer. The study was mainly based on the data (...) collected from focus group discussions with the participants, which was analysed qualitatively through open coding. In total, four themes were identified: open space, disconnecting through connecting, community, and resonances and echoes. The participants expressed that the RG helped them to “balance life and cancer”, and “disconnect” from their illness. The cognitive effort needed was beneficial for the participants as a form for “cognitive training.” Since many of the participants had, due to their illness, completely stopped reading books, the reading group also brought literature back into the participants’ lives. Furthermore, it was essential for the participants to feel they contributed to a community, to feel useful and valuable for others. The texts were also important, as some of them resonated strongly with the participants in the way of activating memories and connecting a text to own experiences. After a session, a text could still have an impact as an echo. The results are synthesised, discussed, and supported through the framework of self-determination theory and, more specifically, the basic psychological need theory. The reading group was experienced as a support for autonomy, competence, and relatedness and promoted a feeling of intrinsic motivation that brought about new dimensions in the participants’ lives. The study wishes to increase our knowledge of the benefits of integrating Shared Reading groups as a low-cost, literature-based psychosocial support in cancer organisations. (shrink)

Aims The purpose of this literature review was to explore the psychosocial implications of long-term survival for people affected by cancer by systematically examining published research evidence. Key findings 283 abstracts of papers were retrieved and checked and 33 studies relating to the implications of long-term survival subjected to detailed scrutiny. This review suggests that the majority of long-term cancer survivors cope well and enjoy good QoL. However, there are areas of concern which warrant attention. Whilst this (...) review did not set out to review physical problems experienced in the long-term, long-term physical consequences of cancer and its treatment were associated with poorer QoL and more psychological distress and sexual problems. Other long term concerns included anxiety regarding recurrence, financial difficulties and reduced social and emotional support. Long term survivors of lung, head and neck cancers appear particularly vulnerable to long term problems although there were few studies involving people with these cancers in this review. A number of limitations in the current evidence base were highlighted. Little research was conducted in the UK and raises questions as to the relevance of the findings for a different environment or culture where patients may have different attitudes to cancer survival and receive different treatments. Also, when looking at practical issues for long-term survivors such as ability to obtain insurance, or employment matters, then country-specific factors will be important. (shrink)

People with cancer, who live better or longer than expected or who recover completely despite a poor medical prognosis, usually go through a profound change and self-development. This paper is an attempt to describe and understand the nature of this transformation by examining how initially unexamined conceptions of oneself, life, illness, etc., become manifest and get developed. One feature of this process is that people leave the present-day medical conception, which is based on the notion of (...) victim of and battle against illness, and discover that they have other resources for dealing with life and illness. It will be argued that at the centre of this transformation lies the discovery and development of the will, which is closely associated with the willingness to examine one's conceptions of oneself, health, illness and life. (shrink)

IntroductionParents’ caring responsibilities lead to imbalances in roles, functions, and emotions, confronting them with new needs that, if left unaddressed, have adverse consequences for the lives of all family members. Therefore, this study aimed to identify the significant unmet needs of the mothers of the children with cancer.Materials and methodsThis descriptive cross-sectional study was conducted in Tehran in 2019–2020 on 215 mothers of the children with cancer visiting the hospitals affiliated with medical universities. The (...) study population was selected through convenience sampling method and according to the inclusion criteria. The FIN questionnaire consisting of two subscales, FIN-Import and FIN-Fulfillment, with 40 items, was used to collect data.ResultsThe mean age of the mothers participating in the study was 34.77 ± 7.91 years, and the mean age of the children with cancer was 9.77 ± 14.37 years. The mean scores of FIN-Import and FIN-Fulfillment were 92.88 ± 7.97 and 70.82 ± 17.89, respectively. The phrase “To know the facts concerning my child’s prognosis” with 23%, and the phrase “To be told about the people who could help with problems” with 22.8% were the most common unmet needs reported by the parents.ConclusionThe present study indicated that caring for a child with cancer had confronted mothers with new needs to be met; however, not all of these needs had been satisfied. Awareness about the unmet needs of these mothers and planning to manage those needs can lay the groundwork to improve their health. (shrink)

While cancer survivors commonly experience fear and anxiety, a substantial minority experience an enduring and debilitating fear that their cancer will return; a condition commonly referred to as fear of cancer recurrence. Despite recent advances in this area, little is known about FCR among people from Indigenous or other ethnic and racial minority populations. Given the high prevalence and poor outcomes of cancer among people from these populations, a robust understanding of FCR among (...) class='Hi'>people from these groups is critical. The current review identified and aggregated existing literature on FCR amongst adult cancer survivors from Indigenous and minority populations. The protocol of this review was registered with PROSPERO in July 2020. A systematic search of bibliographic databases was conducted for relevant articles published from 1997 to November 2019. Data from eligible articles were extracted and appraised for quality by two independent reviewers. Nineteen articles from four countries met the inclusion criteria, including 14 quantitative, 4 qualitative and 1 mixed-methods study. Only one article reported on an Indigenous population. Few studies reported on FCR prevalence or severity. While the variation in tools used to measure FCR hindered a robust estimate of severity, results suggested some differences in FCR severity between minority and dominant populations, although these may have been due to study metholodological differences. Few factors were reported as being associated with FCR in minorities across multiple studies. The qualitative synthesis found five themes associated with the lived experience of FCR: variations in the lived experience of FCR; spirituality and worldview impacting on FCR; the importance of staying positive; complexities around support; and increasing cancer knowledge. The findings of this review highlight differences in FCR across cultures and contexts, which reinforces the need for culturally-specific approaches to this condition. The dearth of research in this area is of concern given the significant burden of cancer in these populations. A deeper understanding of this condition among Indigenous and minority populations is critical to developing and delivering appropriate and effective psychosocial care for cancer survivors from these groups. Systematic Review Registration: identifier [CRD42020161655]. (shrink)

Most films dealing with cancer either adopt a sentimental approach or trivialize the impact of a diagnosis of cancer on patients and their families: Stepmom (USA, 1998), Sweet November (USA, 2001) and My Sister’s Keeper (USA, 2009) are a few examples. Few films, such as Wit (USA, 2001), have avoided common stereotypes and portrayed cancer patients as strong individuals trying to come to terms with their illness, rationalize its impact on their lives, and deal (...) class='Hi'>with the healthcare professionals in a believable manner. The new film from director Jonathan Levine, 50/50, belongs to the second category in dealing with cancer patients as believable people with whom the viewer can empathize. It is refreshing to see that the film deals with its emotional subject in a humorous way without patronizing its audience or their intelligence. (shrink)

Targeting people living with Human Immunodeficiency Virus, this research examined the prevalence of space-focused stereotypes and their underlying mechanism on behavioral inclinations. Study 1 adopted the explicit nomination and implicit Go/No-Go association tests to explore the existence of space-focused stereotypes of people living with HIV/AIDS. The results demonstrated that space-focused stereotypes were only manifested explicitly with characteristics such as messy, dirty, and gloomy. Study 2 demonstrated a more negative evaluation and community-approaching willingness for (...) communities that include people living with HIV/AIDS than those without HIV/AIDS. Additionally, space-focused stereotypes were found to have an indirect influence on community-approaching willingness; the influence was mediated by both emotional and cognitive factors. These results indicate the deviation of explicit and implicit space-focused stereotypes. More importantly, it revealed that space-focused stereotypes decreased community evaluation and influenced behavioral inclination. This research suggested the existence of space-focused stereotypes on another stigmatized social group. Characteristics of space might be the key to forming space-focused stereotypes. (shrink)

BackgroundThe issue of stigma is very important in the battle against HIV/aids in Africa since it may affect patient attendance at healthcare centres for obtaining antiretroviral medications and regular medical check-ups. Stigmatization creates an unnecessary culture of secrecy and silence based on ignorance and fear of victimization. This study was designed to determine if there is external stigmatization of people living with HIV and AIDS by health care workers at a tertiary hospital in KwaZulu-Natal province, South Africa. (...) The study investigated the impact of knowledge of HIV/aids by HCWs on treatment of patients, as well as the comfort level and attitude of HCWs when rendering care to PLWHA.MethodsA descriptive cross sectional study was designed to collect data using an anonymous self-administered structured questionnaire from 334 HCWs. The study was conducted in clinical departments of a large multidisciplinary 922-bed tertiary care teaching hospital in Durban, KZN.ResultsOverall HCWs had an above average knowledge about HIV/aids although some gaps in knowledge were identified. Tests of statistical significance showed that there was association between level of education and knowledge of HIV/aids ; occupation and knowledge of HIV/aids ; and gender and knowledge of HIV/aids. Test for comfort level was only significant for gender, with males showing more comfort and empathy when dealing with PLWHA. The study also revealed that patients were sometimes tested for HIV without informed consent before surgery, due to fear of being infected, and there was some gossiping about patients' HIV status by HCWs, thereby compromising patient confidentiality. The majority of HCWs showed a willingness to report incidents of stigmatization and discrimination to higher authorities, for better monitoring and control.ConclusionsAlthough knowledge, attitude and comfort level of HCWs taking care of PLWHA was above average, enforcement of existing antidiscrimination laws and continuing education in medical ethics and healthcare law, would greatly improve the performance of HCWs taking care of PLWHAs. More psychological support and counselling should be provided to HCWs, to further reduce the impact of stigmatization and discrimination against PLWHA. (shrink)

Background: Fear of cancer recurrence or progression is a common challenge experienced by people living with and beyond cancer and is frequently endorsed as the highest unmet psychosocial need amongst survivors. This has prompted many cancer organizations to develop self-help resources for survivors to better manage these fears through psychoeducation, but little is known about whether they help reduce FCR/P.Method: We recruited 62 women with ovarian cancer. Women reported on their medical history (...) and demographic characteristics and completed the Fear of Progression Questionnaire-Short Form. They then read a booklet on FCR specifically created for Ovarian Cancer Australia by two of the authors. One week after reading the booklet, 50/62 women completed the FoP-Q-SF and answered questions about their satisfaction with the booklet.Results: More than half of the women scored in the clinical range for FCR/P at baseline. Of the completers, 93% said that they would recommend the booklet to other women. Satisfaction with the booklet was relatively high and more than two-thirds of women rated it as moderately helpful or better. However, FCR/P did not change significantly over the week following reading the booklet [t = 1.71, p = 0.09]. There was also no difference in change in FCR/P between women in the clinical vs. non-clinical range on the FoP-Q. Women high in FCR/P rated the booklet as less helpful in managing FCR/P, but overall satisfaction with the booklet was not associated with degree of FCR/P.Conclusions: These results suggest that a simple online FCR booklet is acceptable to women with ovarian cancer and they are satisfied with the booklet, but, it was insufficient to change in FCR/P levels. These results suggest that such resources are valued by women with ovarian cancer, but more potent interventions are necessary to reduce FCR in this population. (shrink)

Doing research on cancer patients often involves painful journeys through the processes of involvement and detachment with research settings and participants. It is a self-transforming event to see close cared for people die. Yet frequently these experiences remain unreported in academic writing. The present article attempts to depict the narratives of attachment in the context of terminal illness and detachment as a consequence of death of the research participant, Jabbar, to reflect on such a journey. It focuses (...) on the formation of a relationship beyond the boundaries of the purposes of research to reflect on two related issues, first, the nature of attachments and relationship building that goes in parallel to the formal dimensions of the research, and second, emotions, self-transformation and contextual embeddedness of doing research with terminally ill cancer patients. (shrink)

This study aimed to explore the enabling context of the HIV care continuum as perceived by people living with HIV and healthcare professionals. This qualitative study involved in‐depth individual interviews with eight people living with HIV and group interviews with seven nurses and physicians. These interviews took place between March 5, 2021, and July 13, 2022. Thematic analysis was conducted. The main themes that emerged included “network of support and systems,” “personal gains (...) from the care continuum,” “continuity and practicality of healthcare services,” “presence of significant other(s),” and “social belonging.” These themes were structured within the five levels of the socio‐ecological model (system, individual, organizational, interpersonal, and community levels), and 10 subthemes were identified. With the integration of themes, the enabling context was compared to a “care orbit,” indicating that people diagnosed with HIV start treatment at the system level and continue HIV care at other levels. In addition to primary support at the system level, the enabling context also includes individual commitment to care and regular health habits, hospital services, support from significant others, and community culture. Together, the context helps guide people living with HIV into the “orbit” of the care system. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bringing Cancer Care to Those who Don't Have ItLawrence N. ShulmanI have been treating cancer patients in the Harvard Medical School hospitals since 1977, and in those 35 years we have made tremendous progress. Though work still needs to be done, and far too many patients still die of cancer, many are cured. In particular, children and young adults have a high rate of cure from (...) such diseases as Hodgkin's lymphoma, non-Hodgkin's lymphoma, acute lymphoblastic leukemia, and childhood sarcoma. Patients with breast cancer in the US have a greater than 80% chance for long-term survival. The death rate from cervical cancer in the US is very low. These results have been achieved by making diagnoses earlier, in many cases surgical excision, and often systemic therapies such as chemotherapy, hormonal therapy, radiation therapy, and more recently by using so-called "targeted" therapies—those directed at particular molecular characteristics of the cancer cells.Princess Dina Mired has said that the opportunity to survive cancer should not be an accident of geography. In cases where we already have effective and inexpensive tools to cure cancer, these treatments should be considered a basic human right, a life-saving medical service.I met Patty, a young woman living in the U.S. during November of her senior year in high school, after she discovered a small lump above her left collar bone. Though she felt entirely well, she called her primary care doctor who saw her the next day, felt the enlarged lymph node, and referred her to a surgeon, who did a biopsy later that week. Her primary care doctor also called me, and we scheduled a visit when the pathology results were available. The following week the pathologist notified Patty's pediatrician that the biopsy showed Hodgkin's lymphoma. When I met Patty, she was a bright and focused young woman, waiting to hear about her college applications and enjoying her senior year. Her cancer diagnosis was completely out of context with her life as she planned it, but with the support of her family and boyfriend, she seemed prepared to take things one step at a time. A PET CT scan demonstrated a modest mass in the mediastinum (chest), but no other disease. She was in an early stage of the disease with an excellent prognosis. We recommended and administered six months of chemotherapy with doxorubicin, bleomycin, vinblastine, and dacarbazine—four chemotherapy agents that are off-patent, and relatively inexpensive. She lost her hair, not a trivial issue for her, but otherwise felt reasonably well during the treatment. She was determined to graduate with her classmates, and was able continue to attend school and keep up with her work. In June, seven months into her cancer diagnosis and treatment, she graduated with honors, and was on track to enroll in college in September.Like other 18-year-old women with Hodgkin's lymphoma, Patty had an over 80% chance for cure with the potential for a long and productive life ahead of her because we could perform a biopsy, make a diagnosis, and safely and effectively treat her with four inexpensive, off-patent, chemotherapy drugs. She had nearly the same likelihood of living a long and fruitful life as her classmates, and had the same chances for childbearing. In my line of work, with the knowledge we now possess, to allow someone like Patty to die without a chance of curative care is simply unacceptable. Treatment of curable cancers should be considered on par with the right to clean water, adequate nutrition, treatment for infectious disease, and access to maternal and child healthcare services.But in many places in the world, people with cancers we could easily eradicate in Boston have no access to cancer services, and do die unnecessarily. The local healthcare infrastructure has no [End Page E10] capacity to evaluate a patient, perform or process a biopsy, make a diagnosis, or treat the patient with potentially curative surgery, chemotherapy and radiation. I have rounded on the wards of hospitals in developing countries, stopping to talk with numerous patients like Patty: young women, some of whom might have had Hodgkin's lymphoma, but no... (shrink)

To write about the disease of breast cancer from both scientific and spiritual perspectives is to reflect upon our genetic and spiritual ancestry. We examine the issues involved in breast cancer at the intersections of spirituality, technology, and science, using the fundamental thing we know about being human: our bodies. Our goal in this essay is to offer close readings of women's spiritual and bodily journeys through the disease of breast cancer. We have discovered that both illness (...) and health come within the stories of particular people and particular disciplines. And to learn more about breast cancer, both scientific and spiritual aspects, one must be attentive to such particularities. Medicine and religion are bodily experiences, and being a body-self is what it means to be human. (shrink)

This paper examines the ethics of using assistive technology such as video surveillance in the homes of people living with dementia. Ideation and concept elaboration around the introduction of a camera-based surveillance service in the homes of people with dementia, typically living alone, is explored. The paper reviews relevant literature on surveillance of people living with dementia, and summarises the findings from ideation and concept elaboration workshops, designed to capture the views (...) of those involved in the care of people living with dementia at home. The research question relates to the ethical considerations of using assistive technologies that include video surveillance in the homes of people living with dementia, and the implications for a person living with dementia whenever video surveillance is used in their home and access to the camera is given to the person’s family. The review of related work indicated that such video surveillance may result in loss of autonomy or freedom for the person with dementia. The workshops reflected the findings from the related work, and revealed useful information to inform the service design, in particular in fine-tuning the service to find the best relationship between privacy and usefulness. Those who took part in the workshops supported the concept of the use of camera in the homes of people living with dementia, with some significant caveats around privacy. The research carried out in this work is small in scale but points towards an acceptance by many caregivers of people living with dementia of surveillance technologies. This paper indicates that those who care for people living with dementia at home are willing to make use of camera technology and therefore the value of this work is to help shed light on the direction for future research. (shrink)

We examine the concept of personhood in relation to people living with dementia and implications for the humanity of care, drawing on a body of ethnographic work. Much debate has searched for an adequate account of the person for these purposes. Broad contrasts can be made between accounts focusing on cognition and mental faculties, and accounts focusing on embodied and relational aspects of the person. Some have suggested the concept of the person is critical for good care; (...) others suggest the vexed debates mean that the concept should be abandoned. We argue instead that the competing accounts illuminate the very tensions in personhood which are manifest for all of us, but especially for people living with dementia, and argue that our account has explanatory power in shedding light on how precisely dehumanisation and constraints on agency may arise for people living with dementia, and for staff, within an institutional context. (shrink)

Furman and Tuminello raise a central question about people living with mental illness: What kind of life is possible for them? Can one live a flourishing life even when struggling with a mental disorder? The authors draw on research studies to argue that a technique called Applied Behavioral Analysis can improve the lives of children with autism. One study, from 1987, found that 47% of children exposed to ABA attained normal IQ levels, adaptive skills, and (...) social skills, and other studies replicated these results. This is a promising avenue for those living with autism.Furman and Tuminello focus on autism, but their claims, if true, might be extended to other disorders as well; as they note, people... (shrink)

Artificial intelligence (AI) has garnered tremendous attention in health care, and many hope that AI can enhance our health system’s ability to care for people with chronic and degenerative conditions, including Parkinson’s Disease (PD). This paper reports the themes and lessons derived from a qualitative study with people living with PD, family caregivers, and health care providers regarding the ethical dimensions of using AI to monitor, assess, and predict PD symptoms and progression. Thematic analysis (...) identified ethical concerns at four intersecting levels: personal, interpersonal, professional/institutional, and societal levels. Reflecting on potential benefits of predictive algorithms that can continuously collect and process longitudinal data, participants expressed a desire for more timely, ongoing, and accurate information that could enhance management of day-to-day fluctuations and facilitate clinical and personal care as their disease progresses. Nonetheless, they voiced concerns about intersecting ethical questions around evolving illness identities, familial and professional care relationships, privacy, and data ownership/governance. The multi-layer analysis provides a helpful way to understand the ethics of using AI in monitoring and managing PD and other chronic/degenerative conditions. (shrink)

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making (...) and their views on supported decision-making. Thirty-six interviews were undertaken with fifty-seven participants across three states in Australia. Interpretative Phenomenological Analysis was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. (shrink)

Across care settings, the practice of lying to or withholding the truth from people living with dementia is common, yet it is objected to by many. Contrary to this common discomfort, I have argued in previous work that respecting members of this group as moral equals sometimes requires deceiving them. In this paper, I test my proposed practice against complex, controversial cases, demonstrating both its theoretical strength and its practical value for those working in social care.

This article uses the African communal concept of ubuntu to reflect on the ministry of Mashoko Christian Hospital, Zimbabwe, to people living with the human immunodeficiency virus and AIDS during the early days since the discovery of the disease. The main question this article seeks to answer is: from a perspective of the African philosophy of ubuntu, how did the ministry of MCH to PLWHA challenge the fear and judgemental attitudes towards the disease within the Churches of (...) Christ in Zimbabwe? This leads to another question: what should the churches learn from MCH’s response to HIV and AIDS? This article only focusses on trends in conduct and not on a detailed history of engaging HIV and AIDS. The significance of this article is to demonstrate the important role played by faith-based organisations in complementing the compassion and care often lacking in the official churches’ response to HIV and AIDS. (shrink)

Many caregivers feel that they need to lie or withhold the truth from people living with dementia, but worry that, in doing so, they are violating a duty to tell the truth. In this article, I argue that withholding the truth from and, in limited circumstances, lying to people living with dementia is not only morally permissible, but morally required by a more general requirement that we treat each other as persons worthy of respect. (...) I do so through an analysis of the groundings of the duty to tell the truth, and a critical reflection on its cognitively ableist construction. (shrink)

Aim To explore the way people living with HIV and healthcare providers in Togo judge the priority of HIV-infected patients regarding the allocation of antiretroviral drugs. Method From June to September 2015, 200 adults living with HIV and 121 healthcare providers living in Togo were recruited for the study. They were presented with stories of a few lines depicting the situation of an HIV-infected patient and were instructed to judge the extent to which (...) the patient should be given priority for antiretroviral drugs. The stories were composed by systematically varying the levels of four factors: the severity of HIV infection, the financial situation of the patient, the patient's family responsibilities and the time elapsed since the first consultation. Results Five clusters were identified: 65% of the participants expressed the view that patients who are poor and severely sick should be treated as a priority, 13% prioritised treatment of patients who are poor and parents of small children, 12% expressed the view that the poor should be treated as a priority, 4% preferred that the sickest be treated as a priority and 6% wanted all patients to get treatment. Conclusions WHO's guideline regarding antiretroviral therapy allocation currently in use in many African countries does not reflect the preferences of Togolese people living with HIV. For most HIV-infected patients in Togo, patients who cannot get treatment on their own should be treated as a priority. (shrink)

ObjectiveApproximately half of all people living with amyotrophic lateral sclerosis experience persistent or recurrent emotional distress, yet little is known about the psychological processes that maintain emotional distress in this population. The self-regulatory executive functioning model specifies that maladaptive metacognitive beliefs and processes are central to the development and maintenance of emotional distress. This study explored whether maladaptive metacognitive beliefs are associated with emotional distress after controlling for demographic factors, time since diagnosis, and current level of (...) physical functioning.DesignIn a cross-sectional design, 75 adults with a diagnosis of ALS completed self-report questionnaires. Participants had a mean age of 60.40 years, mean duration of symptoms 63.92 months, and male:female gender ratio of 14:11.Main Outcome MeasuresQuestionnaires assessed emotional distress, physical functioning, repetitive negative thinking, metacognitive beliefs, and demographic factors.ResultsMaladaptive metacognitive beliefs explained additional variance in emotional distress after controlling for age, gender, time since diagnosis, physical functioning, and repetitive negative thinking. Repetitive negative thinking partially mediated the relationships between positive and negative metacognitive beliefs and emotional distress.ConclusionsThese data support the utility of the metacognitive model in understanding emotional distress in people with ALS. Examination of the temporal relationship between maladaptive metacognitive beliefs and emotional distress in people living with ALS may help to guide the development of therapeutic approaches. (shrink)

Background: The comorbidity of posttraumatic stress disorder and depression is common among people living with the HIV. Given the high prevalence and serious clinical consequences of the comorbidity of these two disorders, we conducted a latent profile analysis to examine the co-occurrence pattern of PTSD and depression in PLWH.Methods: The data for this cross-sectional study of PLWH were collected from 602 patients with HIV in China. A secondary analysis using latent profile analysis was conducted to examine (...) HIV-related PTSD and depression symptoms.Results: A four-class solution fits the data best, with the four classes characterized as asymptomatic, mild symptoms, low to moderate symptoms, and high to moderate symptoms. The severity of PTSD and depression symptoms was comparable in this solution, and no group was dominated by PTSD or depression.Conclusion: The absence of a distinct subcluster of PLWH with only PTSD or depression symptoms supports that PTSD and depression in PLWH are psychopathological manifestations after traumatic exposures. Health care staff should pay more attention to the existence of comorbid symptoms of individuals, develop integrated interventions for the symptoms cluster, and evaluate their effectiveness in clinical practice. (shrink)

One of the ways in which sexual transmission of AIDS is addressed is through moral interventions by organisations affiliated with Christian churches. However, this approach has been heavily criticised in recent literature, implying that moral interventions by church-affiliated organisations generally lead to stigmatisation which is one of the major obstacles to their involvement in HIV prevention. This article explores the origin of this accusation and discusses the Christian-ethical aspects related to HIV or AIDS. The conclusion is that the fact (...) that churches take the Word of God and Christian morality as point of departure in HIV or AIDS intervention programmes does not imply that people who transgressed religious moral teachings may be condemned. On the contrary, the church preaches Christian forgiveness, mercy and empathy. Churches and organisations affiliated with churches should therefore be regarded as valuable partners in the fight against AIDS, for while propagating a normative lifestyle, they also preach love, compassion and support for people living with HIV. (shrink)

This study aimed to explore stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. A qualitative approach to investigation involved five focus group discussions with 30 Community representatives, 12 key informant interviews with researchers, and 12 in-depth interviews with research ethics committee members. In total, 54 stakeholders who were involved in pharmacogenomics research and HIV treatment and care contributed to the data collection between September 2021 and (...) February 2022. The study explored five prominent themes: (i) defining the nature of research results to return to participants; (ii) preparing research participants to receive their results; (iii) obtaining informed consent for the return of results; (iv) opinions on health personnel to return the results to participants; and (v) opinions on how research results should be communicated to participants. Respondents identified various strategies for the return of individual results with minimal ethical risks including the setting up of a diverse and independent committee to undertake a risk-benefit assessment based on local context; ongoing discussions about the possible kinds of results and their implications throughout the study; and employing genetic counsellors to communicate results to participants. The strategies identified in this study should be further studied and independently verified. (shrink)

The aim of the study was to determine how the health of people living with Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) is affected by social and structural factors conducive to non-adherence to antiretroviral treatment. In a qualitative study conducted at Victoria Hospital in Alice, a town in the Eastern Cape, South Africa, 23 isiXhosa-speaking participants (including both men and women) between the ages of 18 and 60 years were interviewed. Guided by the social-ecological framework (...) of Bronfenbrenner (1979), which is based on the notion that the health-seeking behaviour of people living with HIV/AIDS (PLWHA) is influenced by their social, institutional and physical environments, the analysis of the data identified the following themes conducive to non-adherence to antiretroviral treatment: food insecurity, financial constraints, poor service from health workers, unfair dismissal, fear of the consequences of disclosure, and rejection by church members. Based on these findings, and given that there is no single model of best practice that can appropriately address the various social and structural factors complicating the treatment of HIV/AIDS and hence the containing of the pandemic, the study suggests the need for not only supportive community initiatives, but a collaborative approach at both local and national level, and particularly in impoverished communities, by the appropriate departments of state to promote adherence to anti-retroviral treatment by making treatment and counselling facilities more accessible to PLWHA and educating communities about the implications and prevention of the disease. (shrink)

In Canada, there is interest in expanding medical assistance in dying (MAID) to include advance requests (AR) for people living with dementia (PLWD). However, operationalizing the intolerable suffering criterion for MAID in ARs for PLWD is complicated by the Canadian legal context—in which MAID is understood as a medical intervention and suffering is conceptualized as subjective—and the degenerative nature of dementia. ARs that express a wish to receive MAID when the PLWD develops pre-specified impairments are problematic because (...) people are unlikely to accurately predict the conditions that will cause intolerable suffering. ARs that express a wish to receive MAID when the PLWD exhibits pre-specified behaviors that likely represent suffering are problematic because they are inconsistent with the subjective conceptualization of suffering. Further research is required to determine whether adopting an objective conceptualization of suffering is justified in these cases and, if so, how to reliably identify intolerable suffering in PLWD. (shrink)

This article aims to address the importance of Black Theology of Liberation mainly focussing on the unheard cry of people living with disabilities. Black Theology in its origin is linked to communities of black oppressed beings; its task is to seriously consider the experiences and situation of those who reside in the zone of non-being. In this article, people living with disabilities represent those who reside underside modernity and history, which simply entails that (...) class='Hi'>people living with disabilities lack the quality of being recognised as human beings, but as sub-humans who are lifeless. Some scholars of Black Theology eloquently wrestles with the lifelessness fruit which the empire continues to bear by arguing that the Black Theology of Liberation is a theology that aims to give life to victims of lifelessness. It is argued that people living with disabilities in black communities experience a lack of accessibility to transportation, the health sector, education, and building infrastructures in South Africa. The lack of accessibility to opportunities and resources for people living with disabilities portrays a denial of human rights and equality; it instead, promotes the state of lifelessness to people living with disabilities. Contribution: The article adopts ‘The Cry for Life’ declaration which stresses the affirmation of life to all human beings despite their disabilities. The cry for impilo [life] by people living with disabilities is what makes Black Theology an epistemological tool that is derived from below in the search for impilo. (shrink)

This study addresses the Bible as a coping tool in a sample of Swedish practising Christians living with cancer, gathered through a qualitative, in-depth interview study, on religious experiences and expressions that serve in the process of coping with a life situation changed by the disease. Through content analyses, and case studies combining tools from Pargament’s coping theory with, above all, role theory, it is shown that the Bible is a part of the coping process (...) for approximately half of the informants. Furthermore, the Bible plays very different roles in the coping process, even for one single person. In the analyzed material, two different ways of using the Bible in the coping process occurs: Biblical passages as bearer of meaning for the informants, and the actual reading as such of the Bible. The former with two different functions in the coping process: (a) in the Biblical passages, see a direct appeal from God to the individual on a personal level and (b) a specific character in a Bible passage serves as an object of identification for the informant. In the coping process, the Bible provides coping tools for the identified coping methods meditative reading, role taking, and (re)interpretation of biblical passages (motivated by a religious tradition). As such, it mainly serves within the framework of the preserving comprehensive coping method. It is also shown that there are changes in the use of the Bible in connection with the changed life situation, as a result of the disease. (shrink)

The informed consent is an ethical and legal requirement for potential participants to enroll in a study. There is ample of evidence that understanding consent information and enrollment is challenging for participants in clinical trials. On the other hand, the reasoning process behind decision-making in HIV clinical trials remains mostly unexplored. This study aims to examine the decision-making process of people living with HIV currently participating in antiretroviral clinical trials and their understanding of informed consent. We conducted (...) a qualitative socio-constructivist study using semi-structured interviews. Eleven participants were selected by purposive sampling in Argentina until data saturation was reached. A content analysis was performed. The findings highlight the fact that some participants decided to enroll on the spot, while others made the decision a few days later. In all cases, the decision was based on different aspects of trust (in doctors, in the clinical research site, in the clinical trials system) but also on emotions associated with HIV and/or treatment. Moreover, while people living with HIV felt truly informed after the consent dialogue with a researcher, consent forms were unintelligible and unfriendly. The immediacy of patient decision-making has rarely been described before. Enrollment in an HIV clinical trial is mainly a trust-based decision but this does not contradict the ethical values of autonomy, voluntariness, non-manipulation, and non‐exploitation. Thus, trust is a key issue to be included in reshaping professional practices to ensure the integrity of the informed consent process. (shrink)

This article brings together research from the fields of chronic pain management and somatic practices to develop a novel framework of principles to support people living with persistent pain. These include movement-based approaches to awareness of the internal body (interoception), the external environment (exteroception) and movement in space (proprioception). These significantly work with the lived subjective experiences of people living with pain, to become aware of body signals and self-management of symptoms, explore fear (...) and pleasure of movement, and understand how social environments impact on pain. This analysis has potential to create new ways of supporting, understanding and articulating pain experiences, as well as shaping the future of somatic practices for chronic pain. (shrink)

Kenneth Melchin states two objectives for his book Living with Other People: 1) to present the main elements of a study of Christian ethics based on the work of Bernard Lonergan; and 2) to provide readers with tools for moral self-understanding and deliberation.

In lieu of an abstract, here is a brief excerpt of the content:The Courage To LiveAntonella ColaceI am not the patient. I have not received an organ. I am her mother; I am a shadow patient. My responsibility was to make decisions about a gift for my one-year-old daughter in the summer of 2007. A liver.Elisa had a hepatoblastoma. After chemotherapy, the tumor might have been removed, but in the final stages of the work-up a portal vein malformation necessitated a (...) transplant. The medical team at a hospital in northern Italy informed us of the intervention.So many words! Trying to understand what they were saying seemed like a lost cause to me, but I quickly realized that these were people I should trust blindly.These medical team members, by the end of the experience, would all become part of my family. They embraced us in their capacity as professionals and as human beings. I never felt alone or excluded.How many times late in the evening I heard a soft knock at the door of Elisa’s hospital room and behind that delicate touch, I found her doctor ready to leave for home, but not before one last [End Page 131] recommendation for his little patient and a wish of peaceful sleep.The relationship between health workers and the family has developed into an effective relationship of communion and understanding, which has often translated into affectionate terms in communicating with each other. They asked me: “Mom, how is Elisa?”..... Yes—mom!These highly trained medical experts have understood that a parent can sometimes somehow discern the danger behind the otherwise asymptomatic daughter’s subdued attitude; or a surreptitiously high fever, of little concern because Elisa was playing and laughing.I was made to feel an active part of every initiative and decision. My observation point on Elisa, who could not speak for herself, was fundamental for them.I never experienced the hospital as a hostile environment—quite the contrary!It comforted me to have people around us, ready to intervene, reason, and solve the physiological difficulties of my little girl. The hospital was a room in my house, a room whose door was always ajar and in need, I crossed its threshold full of trust, hope, and courage.Today some of those doctors and nurses are my friends. I have a lot of respect for them, gratitude, and admiration.Elisa being placed on the transplant list and waiting for a donor were the first obstacles to overcome.The “warrior” fought against two monsters, time and the tumor. The timing was everything because Elisa had to be in the period of non-toxicity after chemotherapy but could not wait too many weeks without active therapy in favor of a cancer that, lurking like a vulture, was only waiting for the ideal moment to start growing again.The most dramatic thing to overcome and accept was hoping for someone’s death. For Elisa to live, someone else had to die. I felt like an executioner. I didn’t think of anything else; I didn’t sleep at night.In the end, choosing to visualize death as a gift, I had to accept it.It was summer, on August 20th, and another hot and boring night in hospital awaited us. The nurse came into the room to tell me that our lottery ticket had won that night. There was a compatible liver for Elisa. The organ would come from a young woman who had died while swimming in the Sicilian Sea.If they had stabbed me at that moment, maybe not a drop of blood would have left my body. I was paralyzed, incredulous, terrified.My daughter had already been operated on, but it would be different this time. This time they would open her abdomen to remove her diseased liver and replace it with that of a dead young woman, by now sealed in a body bag in a Sicilian morgue. A cold body, deaf now, silent!A young woman for whom, while I was rejoicing, some other shadow patient was despairing, caught up in an unstoppable whirlwind of pain.I felt like throwing up while I cried tears of joyful hope. Guilt grew in my... (shrink)

This paper provides an overview of the societal impact of a rising dementia population and examines the legal and ethical implications posed by voluntary registries as a community-oriented solution to improve interactions between law enforcement and individuals with dementia. It provides a survey of active voluntary registries across the United States, with a focus on Arizona, which has the highest projected growth for individuals living with dementia in the country.

In order to maximize human performance, defence forces continue to explore, develop, and apply human performance enhancement (HPE) methods, ranging from pharmaceuticals to (bio)technological enhancement. This raises ethical, legal, and societal concerns and requires organizing a careful reflection and deliberation process, with relevant stakeholders. We discuss a range of ethical, legal, and societal aspects (ELSA), which people involved in the development and deployment of HPE can use for such reflection and deliberation. A realistic military scenario with proposed (...) HPE application can serve as a starting point for such an iterative and participatory process. Stakeholders can discuss this application, modify its features, and design appropriate processes around it – for instance, procedures for informed consent. We propose that organizing aspects into these three categories – ethical, legal, and societal – can help involve appropriate interlocutors at different moments: legal aspects with people in strategy or management roles, from the start of a project; ethical aspects with people in operations and medical roles, during development; and societal aspects with people in communication and personnel roles, during deployment. Notably, we developed and discussed this framework and the three aspects in close collaboration with personnel from the military. (shrink)

Research Ethics, Volume 18, Issue 3, Page 193-209, July 2022. This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used (...) to convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified. (shrink)

Walsh (2020) underscores how dementia leads to a cognitive transformative experience, which can result in a change in preferences, values, and beliefs. This transformation supports placing greater...

Approximately two billion people lack access to medicines globally. People living with HIV, cancer patients, those suffering from tuberculosis or malaria, and other populations in desperate need of life-saving medicines are increasingly unable to access existing preventative, curative, and life-prolonging treatments. In many cases, treatment may be unavailable or inaccessible for even some of the most common and readily treatable health concerns, such as hypertension. In the developing world, many of the factors that contribute to (...) making the world’s most vulnerable and marginalized populations particularly susceptible to illness also operate to restrict their access to medicines. As a result of dramatic economic inequities and widespread poverty, it is not profitable for most originator pharmaceutical companies to develop new medicines for sale in developing markets or to lower the cost of existing drugs so that they are affordable for the majority of these populations. (shrink)

In Enhancing Evolution, leading bioethicist John Harris dismantles objections to genetic engineering, stem-cell research, designer babies, and cloning and makes an ethical case for biotechnology that is both forthright and rigorous. Human enhancement, Harris argues, is a good thing--good morally, good for individuals, good as social policy, and good for a genetic heritage that needs serious improvement. Enhancing Evolution defends biotechnological interventions that could allow us to live longer, healthier, and even happier lives by, for example, providing us with (...) immunity from cancer and HIV/AIDS. Further, Harris champions the possibility of influencing the very course of evolution to give us increased mental and physical powers--from reasoning, concentration, and memory to strength, stamina, and reaction speed. Indeed, he says, it's not only morally defensible to enhance ourselves; in some cases, it's morally obligatory. In a new preface, Harris offers a glimpse at the new science and technology to come, equipping readers with the knowledge to assess the ethics and policy dimensions of future forms of human enhancement. (shrink)

The COVID-19 pandemic and associated measures to restrict the spread of the virus correlated with limitations in healthcare and changes in depression-related lifestyle elements for depressed patients, both of which are known to negatively affect the course of depression. This paper examines, the reporting of a worsening state of illness as a result of COVID-19-related measures among individuals with depressive disorders; and whether this worsening was related to restrictions in healthcare for depression or changes in depression-related lifestyle. The (...) analysis was based on a population-representative survey of the German population aged 18–69 years. The key findings were: 49% of respondents with self-reported diagnosed depression reported that the measures against the pandemic had a negative impact on their depressive illness. Of those who reported impaired access to healthcare for their depressive illness, 70% also reported a worsening of their depressive illness. This was a significantly higher percentage than those who did not experience impaired access to healthcare. Of those who reported changes in depression-related lifestyle, 58% reported a worsening of their depressive illness. This was a significantly higher percentage than those who did not exhibit any of the outlined behaviours. Worsening of the depressive illness was most common among those who reported a lack of daily structure or extended bedtimes. People who mentioned a lack of exercise also reported a worsening of their depressive illness. These findings reinforce the need to consider the suffering and possible increased suicide risk to people suffering from depression induced by measures designed to constrain the COVID-19 pandemic; an important consideration in identifying the optimal risk-benefit ratio when setting pandemic measures. Our study highlighted the importance of maintaining healthcare, even in crisis situations, and ensuring access to guideline-based treatment for people who need urgent care. It also showed that political interventions can influence individual behaviours that can have negative effects on depressive illness. (shrink)

Amaç: Kanserle yaşayan bireylerin (KYB) bakımında, resmiyette görünür olmayan ve çoğunlukla herhangi bir profesyonel donanıma sahip olmayan, ama sürecin başından sonuna, hasta bireye eşlik eden bakım verenler kritik öneme sahiptir. Baş etmesi zor bir hastalık olan kanserle mücadele eden bireylerin bakımında, bakım verenler fiziksel, zihinsel ve sosyal birtakım zorluklarla karşılaşmaktadır. Bu araştırma, KYB’lere bakım veren, yakınlarının karşılaştıkları zorlukları gündeme getirmeyi ve ihtimam etiği perspektifinden, bakım verenlerin bakımına yönelik öneriler sunmayı amaçlamaktadır. Gereç ve Yöntem: Bu araştırma tanımlayıcı ve kesitsel olup araştırmanın (...) evreni Marmara Üniversitesi Pendik Eğitim ve Araştırma Hastanesi (MÜPEAH) Onkoloji kliniğinde takip edilen, 15 Mart-5 Nisan tarihleri arasında kemoterapi ünitesine ve servis hizmetlerine başvuran KYB’lerin bakım veren yakınlarıdır. KYB’lere bakım verenlerin umutsuzluk derecelerini tespit etmek ve bunu etkileyen faktörleri ölçmek için, veri toplama aracı olarak; sosyodemografik sorular, bakım alan bireyin hastalık derecesine yönelik sorular ve Beck Umutsuzluk Ölçeği sorularından oluşan bir anket elden dağıtılmıştır. Anket bakım verene yönelik sosyodemografik sorular 8, KYB’nin hastalığının durumu ile ilgili sorular 7, Beck Umutsuzluk Ölçeği 20 olmak üzere 35 sorudan oluşmaktadır ve yaklaşık 10 dakikada tamamlanmaktadır. Elde edilen veriler önce Microsoft Excel aracılığıyla dijitalleştirilmiş, ardından IBM SPSS 27.0.1 sürümüyle analiz edilmiştir. Verilerin analizinde Ki-kare, Fisher’s Exact testi ve Pearson Korelasyon analizi kullanılmış, istatistiksel anlamlılık değeri için p<0.05 kabul edilmiştir. Bulgular: Ankete katılan 151 bakım verenin 83’ü (%55,3) kadın, 67’si (%44,7) erkektir. Katılımcıların yaş ortalaması 40,09’dur. Bakım verenlerin %41,1’i umutsuzluk düzeyi ölçeğinde “minimal ya da yok”, %39,7'si "hafif düzeyde", %13.2'si orta düzeyde ve %6’sı “aşırı düzeyde” skorunu almıştır. KYB’lere bakım verenlerin demografik özellikleri ile umutsuzluk düzeyi arasında anlamlı bir ilişki bulunmamıştır. Bakım verenlerin yaşı, cinsiyeti, medeni durumu, gelir durumu ve bakım verme süresi ile umutsuzluk skorları arasında anlamlı bir ilişki bulunmazken, eğitim seviyesi ile umutsuzluk skorları arasında anlamlı bir ilişki bulunmuştur. (p=0,019). Sonuç: Bakım verenlerin, umutsuzluk düzeyleri göz önüne alındığında, önemli psikolojik yükler taşıdığına ve bu yükün, özellikle bakım verenin eğitim seviyesi ile hastanın sağlık durumu arasında belirgin ilişkiler gösterdiğine ulaşılmıştır. Bu bilgiler ışığında, sosyodemografik özelliklerin bakım verenleri önemli ölçüde etkilediği görülmüştür. Bakım verenlerin duygusal yükleri, bakım alıcılarla olan ilişkileri ve bu sürecin hem bireysel hem toplumsal düzeyde getirdiği zorluklar ve sorumluluklar, ihtimam etiği kapsamında ele alınmıştır. Araştırma neticesinde bakım verenlerin karşılaştığı zorluklar ve ihtiyaçlarının daha geniş bir toplumsal ve etik perspektiften ele alınmasının gerekliliği ortaya konmuştur. Bakım verenlerin bakımına yönelik öneriler, duygusal destek; teorik eğitim ve bilgilendirme desteği; pratik ve uygulamalı destek; kaynak erişimi ve tahsisi; tanıma ve doğrulama başlıkları altında sunulmuştur. (shrink)

A diagnosis of dementia often comes with difficulties in understanding a conversational context and expressing how one feels. So far, research on how to facilitate advance care planning for people with dementia focused on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogate decision makers, e.g., family members. The aim of this review is to provide a better scope of the existing research on practical communication aspects related to dementia in (...) ACP conversations. In November 2020, seven databases were searched to select papers for inclusion. This search was updated in December 2021. The search strategy consisted of three tiers, intersected by using the Boolean term “AND,” and resulted in 787 studies. Two researchers followed explicit criteria for two sequential levels of screening, based on titles and abstracts and full papers. A total of 22 studies were included for data analysis. Seven topics emerged clustered around two themes. This scoping review provides practical suggestions for healthcare professionals to improve ACP communication and uncovered gaps in research on communication aspects related to dementia in ACP conversations, such as non-verbal behavior, timing and implementation, and personal preferences. (shrink)