Dignity enhanced through faith & family support in palliative care: a qualitative study.

BACKGROUND: Dignity is integral to palliative care. Illness can diminish it, causing hopelessness and the wish to hasten death. Yet, dignity is a complex multidimensional phenomenon, influenced by values and context. Understanding its varying interpretations can inform practice and policy. The aim of the study is to explore the understanding of dignity in adult patients with palliative care needs from a Lebanese perspective and how it is preserved during illness and while receiving health services. DESIGN: Qualitative interview study underpinned with a social constructionist lens. Fourteen patients recruited from home-based hospice and outpatient clinics in Lebanon. Data analysed using reflexive thematic analysis. RESULTS: Four themes were developed across all the interviews: (a) Dignity anchored through faith in God and religious practices; (b) Family support in maintaining physical, psychological wellbeing, and social connectedness; (c) Physical fitness, mental acuity, and healthy appearance through which patients may escape the stigma of disease, (d) accessible, equitable, and compassionate healthcare. DISCUSSION: Dignity is elusive and difficult to define but faith and religious beliefs play a significant contribution in this study. For the participants, illness is seen as a natural part of life that does not necessarily diminish dignity, but it is the illness related changes that potentially affect dignity. Findings show the importance of family and children in preserving dignity during illness and how their active presence provide a sense of pride and identity. Participants aspired to restore physical, social, and mental well-being to reclaim their dignity and normalize their lives. Challenges related to physical appearance, memory loss, vitality, and social stigma associated with illness diminished dignity. Accessible, equitable and compassionate healthcare services are also crucial in preserving dignity. Participants valued clear communication, respect, and empathy from healthcare providers and identified affordability of care essential for maintaining dignity. CONCLUSION: Faith in God, and strong family ties are dominant elements to maintaining dignity in the Lebanese context. Relational connectedness with family, children or God is also a need in maintaining dignity in other communal countries with variations in emphasis. The study indicates that religious and cultural context shapes the needs and perceptions of dignity during illness. These findings are likely to be transferable to many Middle Eastern countries but also countries with strong religious and family ties globally.

Women living with infertility in Iran: A qualitative content analysis of perception of dignity.

BACKGROUND: Globally, infertility is known as a major problem which can ruin a couple's relationship. In recent years, many studies have addressed the causes of infertility, the outcomes of treatments for infertility, and the effects of infertility on couples' mental health; however, the concept of dignity of women living with infertility has never been examined in depth. OBJECTIVE: This study aimed to explore the dignity of women living with infertility in Iran. DESIGN: This qualitative research was conducted via conventional content analysis approach. METHODS: This qualitative study was conducted in Iran from February to December 2022. In this research, the data were collected through face-to-face semi-structured in-depth interviews with 23 women living with infertility selected via purposive sampling. The interviews were continued until reaching the data saturation point. Data analysis was performed simultaneously with data collection. The interviews were recorded, transcribed, and analyzed through Graneheim and Lundman style content analysis, with data management done using the MAXQDA software. To achieve the accuracy and validity of the study, the four-dimension criteria by Lincoln and Guba, namely credibility, dependability, conformability, and transformability, were considered and used. RESULTS: Analysis of the qualitative data yielded three themes and eight subthemes. The three main themes were (1) overcoming identity crises (overcoming dysthymia, coping with unaccomplished motherhood), (2) respect for personal identity (respect for confidentiality; respect for beliefs, values, and attitudes; avoidance of stigma and pity), and (3) compassion-focused therapy (sympathizing, mental and spiritual support, and enhancement of life skills). CONCLUSION: Dignity of women living with infertility encompasses overcoming identity crises, respect for personal identity, and compassion therapy. The policymakers and administrators in the healthcare system can use the findings of this study to create a proper clinical environment toward preserving the dignity of women living with infertility.

Dignity in Medicine: Definition, Assessment and Therapy.

PURPOSE OF REVIEW: Over the last 20 years, dignity and dignity-conserving care have become the center of investigation, in many areas of medicine, including palliative care, oncology, neurology, geriatrics, and psychiatry. We summarized peer-reviewed literature and examined the definition, conceptualization of dignity, potential problems, and suggested interventions. RECENT FINDINGS: We performed a review utilizing several databases, including the most relevant studies in full journal articles, investigating the problems of dignity in medicine. It emerged that dignity is a multifactorial construct and that dignity-preserving care should be at the center of the health organization. Dignity should be also regularly assessed through the tools currently available in clinical practice. Among dignity intervention, besides dignity models of care, dignity intervention, such as dignity therapy (DT), life review and reminiscence therapy, have a role in maintaining both the extrinsic (preserved when health care professionals treat the patient with respect, meeting physical and emotional needs, honors the patient's wishes, and makes attempts to maintain privacy and confidentiality) and intrinsic dignity (preserved when the patient has appropriate self-esteem, is able to exercise autonomy and has a sense of hope and meaning). Unified trends across diverse medical contexts highlight the need for a holistic, patient-centered approach in healthcare settings. Challenges compromising dignity are pervasive, underscoring the importance of interventions and systematic efforts to address these issues. Future research and interventions should prioritize the multifaceted nature of dignity, striving to create healthcare environments that foster compassion, respect, and dignity across all medical settings.

Women's experiences of disrespect and abuse in Swiss facilities during the COVID-19 pandemic: a qualitative analysis of an open-ended question in the IMAgiNE EURO study.

BACKGROUND: The COVID-19 pandemic has challenged the provision of maternal care. The IMAgiNE EURO study investigates the Quality of Maternal and Newborn Care during the pandemic in over 20 countries, including Switzerland. AIM: This study aims to understand women's experiences of disrespect and abuse in Swiss health facilities during the COVID-19 pandemic. METHODS: Data were collected via an anonymous online survey on REDCap®. Women who gave birth between March 2020 and March 2022 and answered an open-ended question in the IMAgiNE EURO questionnaire were included in the study. A qualitative thematic analysis of the women's comments was conducted using the International Confederation of Midwives' RESPECT toolkit as a framework for analysis. FINDINGS: The data source for this study consisted of 199 comments provided by women in response to the open-ended question in the IMAgiNE EURO questionnaire. Analysis of these comments revealed clear patterns of disrespect and abuse in health facilities during the COVID-19 pandemic. These patterns include non-consensual care, with disregard for women's choices and birth preferences; undignified care, characterised by disrespectful attitudes and a lack of empathy from healthcare professionals; and feelings of abandonment and neglect, including denial of companionship during childbirth and separation from newborns. Insufficient organisational and human resources in health facilities were identified as contributing factors to disrespectful care. Empathic relationships with healthcare professionals were reported to be the cornerstone of positive experiences. DISCUSSION: Swiss healthcare facilities showed shortcomings related to disrespect and abuse in maternal care. The pandemic context may have brought new challenges that compromised certain aspects of respectful care. The COVID-19 crisis also acted as a magnifying glass, potentially revealing and exacerbating pre-existing gaps and structural weaknesses within the healthcare system, including understaffing. CONCLUSIONS: These findings should guide advocacy efforts, urging policy makers and health facilities to allocate adequate resources to ensure respectful and high-quality maternal care during pandemics and beyond.

An online survey of women's views of respectful and disrespectful pregnancy and early labour care in the Czech Republic.

OBJECTIVE: To ascertain and explore the views of women and their partners, giving birth in the Czech Republic, of the level of respectful or disrespectful care provided during pregnancy and early labour. DESIGN: Ethical approval was granted for a descriptive, online anonymous survey of 65 questions, with quantitative and qualitative responses. SETTING: The Czech Republic.The survey was completed by 8,767 women and 69 partners in 2018. MEASUREMENTS AND FINDINGS: Descriptive statistics and thematic analysis were used to present results. The majority of women were aged 26-35 years. Most had birthed in one of 93 hospitals, with 1.5% home births. Almost 40% never had an abdominal examination.in pregnancy. Quantitative data analysis revealed that less than half were given information on place of birth, or how to keep labour normal or non-interventionist. Almost 60% did not get information on positions for birth. Most (68%) commenced labour naturally, 25% had labour induced, 40% of them before term, and 7% had an elective caesarean section; 55% stated they had not been given any choice in the decision. Over half of those who had a membrane sweep said permission had not been sought. Half (54%) only had 'checking' visits from the midwife in labour. KEY CONCLUSIONS: Findings reveal a lack of information-giving, discussion and shared decision-making from healthcare professionals during pregnancy and early labour. Some practices were non-evidenced-based, and interventions were sometimes made without consent. IMPLICATIONS FOR PRACTICE: The examples of disrespectful care described in this study caused women distress during childbirth, which may result in an increased fear of childbirth or an increase in free-birthing.

An investigation into the acceptability, adoption, appropriateness, feasibility, and fidelity of implementation strategies for birth companionship in Tehran: a qualitative inquiry on mitigating mistreatment of women during childbirth.

BACKGROUND: A birth companion is a powerful mechanism for preventing mistreatment during childbirth and is a key component of respectful maternity care (RMC). Despite a growing body of evidence supporting the benefits of birth companions in enhancing the quality of care and birth experience, the successful implementation of this practice continues to be a challenge, particularly in developing countries. Our aim was to investigate the acceptability, adoption, appropriateness, feasibility, and fidelity of implementation strategies for birth companions to mitigate the mistreatment of women during childbirth in Tehran. METHODS: This exploratory descriptive qualitative study was conducted between April and August 2023 at Valiasr Hospital in Tehran, Iran. Fifty-two face-to-face in-depth interviews were conducted with a purposive sample of women, birth companions, and maternity healthcare providers. Interviews were audio-recorded, transcribed verbatim, and analyzed using content analysis, with a deductive approach based on the Implementation Outcomes Framework in the MAXQDA 18. RESULTS: Participants found the implemented program to be acceptable and beneficial, however the implementation team noticed that some healthcare providers were initially reluctant to support it and perceived it as an additional burden. However, its adoption has increased over time. Healthcare providers felt that the program was appropriate and feasible, and it improved satisfaction with care and the birth experience. Participants, however, highlighted several issues that need to be addressed. These include the need for training birth companions prior to entering the maternity hospital, informing women about the role of birth companions, assigning a dedicated midwife to provide training, and addressing any physical infrastructure concerns. CONCLUSION: Despite some issues raised by the participants, the acceptability, adoption, appropriateness, feasibility, and fidelity of the implementation strategies for birth companions to mitigate the mistreatment of women during childbirth were well received. Future research should explore the sustainability of this program. The findings of this study can be used to support the implementation of birth companions in countries with comparable circumstances.

When addressing resources is not enough: lessons learned from a respectful maternal and neonatal care provider training intervention evaluation in Kenya and Tanzania.

BACKGROUND: Respectful Maternal and Neonatal Care (RMNC) maintains and respects a pregnant person's dignity, privacy, informed choice, and confidentiality free from harm and mistreatment. It strives for a positive pregnancy and post-pregnancy care experiences for pregnant people and their families, avoiding any form of obstetric violence. Though RMNC is now widely accepted as a priority in obstetric care, there is a gap in resources and support tools for healthcare wproviders to clearly understand the issue and change long-established practices such as non-humanized caesarean sections. MSI Reproductive Choices (MSI) manages 31 maternities across 7 countries with a zero-tolerance approach towards disrespectful maternity care and obstetric violence. MSI developed and implemented a hybrid training package, which includes an online module and 1-day in-person workshop that allows healthcare providers to explore their beliefs and attitudes towards RMNC. It leverages methodologies used in Values-Clarification-Attitudes-Transformation (VCAT) workshops and behaviour change approaches. METHODS: The impact of this training intervention was measured from the healthcare providers' and patients' perspectives. Patient experience of (dis)respectful care was collected from a cross-sectional survey of antenatal and postnatal patients attending MSI maternities in Kenya and Tanzania before and following the RMNC training intervention. Healthcare providers completed pre- and post-workshop surveys at day 1, 90 and 180 to measure any changes in their knowledge, attitudes and perception of intended behaviours regarding RMNC. RESULTS: The results demonstrate that healthcare provider knowledge, attitudes and perceived RMNC practices can be improved with this training interventions. Patients also reported a more positive experience of their maternity care following the training. CONCLUSION: RMNC is a patient-centred care priority in all MSI maternities. The training bridges the gap in resources currently available to support changes in healthcare wproviders' attitudes and behaviours towards provision of RMNC. Ensuring health system infrastructure supports compassionate obstetric care represents only the first step towards ensuring RMNC. The results from the evaluation of this RMNC provider training intervention demonstrates how healthcare provider knowledge and attitudes may represent a bottleneck to ensuring RMNC that can be overcome using VCAT and behaviour change approaches.

Relational Solidarity and Conflicting Ethics in Dementia Care in Urban India.

OBJECTIVES: Using the concept of relational solidarity, we examine how autonomy, equality, dignity, and personhood are practiced in the care of people living with dementia at home in urban India. METHODS: Video interviews with 19 family carers and 25 health providers conducted in English, Hindi, and Kannada in Bengaluru between March and July 2022. Data were translated into English and thematically analyzed. RESULTS: Family carers and providers unanimously agreed that people with dementia should be respected and cared for. Concurrently, they perceived people with dementia as being "like a kid" and used the analogy of a parent-child relationship to understand their care responsibilities. This analogy informed how ethical principles such as personhood and equality were reframed in the relationships between family carers and people with dementia, as well as how carers and providers maintained the safety but undermined the autonomy of people with dementia through restricting their movements inside and outside the home. DISCUSSION: There can be relational solidarity in dementia care at home in urban India but also contradictions in the interpretations and applications of the ethical principles of autonomy, equality, dignity, and personhood. As such, a more organic, grassroots model of ethical practice is needed to frame care and provide material support to families in India.

Respect for bioethical principles and human rights in prisons: a systematic review on the state of the art.

BACKGROUND: Respect for human rights and bioethical principles in prisons is a crucial aspect of society and is proportional to the well-being of the general population. To date, these ethical principles have been lacking in prisons and prisoners are victims of abuse with strong repercussions on their physical and mental health. METHODS: A systematic review was performed, through a MESH of the following words (bioethics) AND (prison), (ethics) AND (prison), (bioethics) AND (jail), (ethics) AND (jail), (bioethics) AND (penitentiary), (ethics) AND (penitentiary), (prison) AND (human rights). Inclusion and exclusion criteria were defined and after PRISMA, 17 articles were included in the systematic review. RESULTS: Of the 17 articles, most were prevalence studies (n.5) or surveys (n.4), followed by cross-sectional studies (n.3), qualitative studies (n.1), retrospective (n.1) and an explanatory sequential mixed-methods study design (n.1). In most cases, the studies associated bioethics with prisoners' access to treatment for various pathologies such as vaccinations, tuberculosis, hepatitis, HIV, it was also found that bioethics in prisons was related to the mental health of prisoners, disability, ageing, the condition of women, the risk of suicide or with the request for end-of-life by prisoners. The results showed shortcomings in the system of maintaining bioethical principles and respect for human rights. CONCLUSIONS: Prisoners, in fact, find it difficult to access care, and have an increased risk of suicide and disability. Furthermore, they are often used as improper organ donors and have constrained autonomy that also compromises their willingness to have end-of-life treatments. In conclusion, prison staff (doctors, nurses, warders, managers) must undergo continuous refresher courses to ensure compliance with ethical principles and human rights in prisons.

"The Patient".

When a resident announced that "the patient has no chance of surviving," a medical student, in this narrative medicine essay, has pondered for years how her mother could have been so reduced and advocates using patients' names when summarizing their conditions.

Reported respectful maternity care received during childbirth at health facilities: A cross sectional survey in Eastern province, Rwanda.

BACKGROUND: Respectful maternity care (RMC) fosters positive childbirth experiences and ensures safe motherhood. While past Rwandan studies on childbirth predominantly focused on negative experiences, our research delved into positive experiences. This study aimed to assess the RMC level experienced by women during childbirth in health facilities of Eastern Province of Rwanda. METHODOLOGY: We conducted a cross-sectional survey on 610 mothers at their discharge across five public hospitals. We used a 15-items RMC questionnaire developed by White Ribbon Alliance, version of 2019. To manage the right-skewed data, we employed a median cut-off, categorizing experiences into binary outcome (low and high RMC score). We performed stepwise backward elimination logistic regression model to identify predictors of high RMC. FINDINGS: The majority (70.2%) reported experiencing RMC. The most acclaimed RMC items (over 90%) included allowance of food and fluid intake (98.5%), non-discrimination (96.2%), receipt of necessary services (96.1%), and privacy (91.3%). The chi-square analysis showed an association between reported high RMC and marital status (p-value = 0.006), occupation (p-value = 0.001), and mode of delivery (p-value = 0.001). Caesarean section delivery was associated with high RMC in multivariate logistic regression with a p-value of 0.001, the adjusted odds ratio was 2.11 with a CI [1.40-3.17]. CONCLUSION: The reported RMC items and care appreciated at high level should be sustained. Regardless of mode of delivery, all mothers should experience consistent, utmost respect throughout the childbirth and should receive RMC at maximum level.

Medicine-Both a Science (Care) and an Art (CARE).

This Viewpoint discusses the concept of CARE (compassion, assistance, respect, and empathy) as a way physicians can practice the art of medicine in the current era of care that increasingly incorporates predictive analytics and artificial intelligence.

Clients' experiences and satisfaction with produce prescription programs in California: a qualitative evaluation to inform person-centered and respectful program models.

Background: Produce prescription programs have strong potential to improve food security, fruit and vegetable consumption, and health across the life course. Understanding clients' experiences and satisfaction with produce prescription programs is critical for evaluating the person-centeredness and quality of these programs. The objectives of this study were to (1) describe client experiences and satisfaction with produce prescription programs, with an emphasis on the extent to which they felt they were treated with respect and dignity, and (2) identify recommendations for improving client experiences. Methods: We conducted four focus group discussions with clients of produce prescription programs in two Federally Qualified Health Centers in California. We used a modified framework analysis approach and organized participants' experiences with programs into themes. Results: Three themes captured participants' program experiences. First, respectful produce prescription programming encompassed interactions with individuals delivering the programs that felt respectful (e.g., program staff showing they cared about participants' health and offering timely assistance with financial incentives) and disrespectful (e.g., not receiving prompt responses to questions about incentives), as well as aspects of program design perceived to be respectful (e.g., provision of gift cards as financial incentives, which offered privacy when purchasing produce). Second, having autonomy to use gift cards to choose their preferred fresh fruits and vegetables was viewed as a positive experience, though participants desired greater autonomy to shop at stores other than the program designated stores. Third, participants frequently discussed program usability, with some reporting that joining the programs and using the cards was easy, and others describing difficulties activating cards and using them at stores due to cashiers' lack of awareness of the programs. Overall, participants were highly satisfied with the programs. To improve client experiences, they recommended increasing privacy (e.g., by educating cashiers on the programs so that clients do not need to explain in public what the card is for) and autonomy (e.g., allowing cards to be used at other chain or local stores). Discussion: Our findings inform efforts to make produce prescription programs more person-centered and respectful, which in turn may increase program demand, engagement, and impact.

Well-being and dignity in innovative digitally-led healthcare for aged adults.

Dignity is a central value in care for aged adults, and it must be protected and respected. With demographic changes leading to an aging population, health ministries are increasingly investing in digitalization. However, using unfamiliar digital technology can be challenging and thus impact aged adults' dignity and well-being. The INNOVATEDIGNITY project aims to research new, dignified ways of engaging with aged adults to shape digital developments in care delivery. This qualitative study aimed to explore how innovative digitally-led healthcare have influenced aged adults' well-being and dignity through three studies conducted as part of the INNOVATEDIGNITY project: a scoping review, an empirical study and a policy analysis. The three documents were analysed to uncover meanings relevant to the research problem revealing four main themes: the advantages of new technologies in facilitating aged adults' well-being, the rupture of dignity due to bewilderment in the digital world, aged adults' dignity is affected by their worries about human face of care being replaced by technology and preserving aged adults' dignity in digitally-led healthcare. Digitalization in healthcare impacts aged adults' well-being as providing new opportunities for care, but preserving aged adults' dignity when working with unfamiliar digital innovations is challenging. Aged adults need to be informed about the use of technology in their care and supported to develop the necessary digital skills to better adapt to digitally-led healthcare. The circumstances, conditions and needs of individuals should remain central when implementing new technologies in healthcare settings in a dignified way.

Caring for Undocumented Migrants: Significance of Recognition and Respect during Healthcare Encounters.

Undocumented migrants are often in a position of extreme vulnerability and experience many barriers to accessing mental health care. It is crucial that health professionals understand this and quickly establish trust and respect. If the stressful living conditions that contribute to the distress of undocumented migrants are recognized, compassionate and trauma-informed care is enhanced. In this regard, it is important that health professionals understand the fear of being expelled from a country. This paper discusses problems that arise when health professionals interact with undocumented migrants and the need to quickly convey recognition to establish trust and respect. We argue that insights from Axel Honneth's social philosophical theory of recognition and disrespect can further enhance health professionals strategies to improve their verbal and non-verbal communication and thereby increase access to health care for undocumented migrants. We suggest ideas for codifying this knowledge in health care policies and guidelines.