Consensus recommendations on holistic care in hereditary ATTR amyloidosis: an international Delphi survey of patient advocates and multidisciplinary healthcare professionals.

BACKGROUND: Hereditary transthyretin-mediated amyloidosis is a rare, progressive and potentially life-limiting multisystem disease, affecting every aspect of a patient's life. OBJECTIVES: This online international Delphi survey aimed to evolve clinical-patient-led practical guidance, to inspire and encourage a holistic approach to care that is managed in specialist settings by multidisciplinary teams and supported by allied healthcare professionals (HCPs) and patient advocacy groups (PAGs). DESIGN: A 14-member joint patient advocate-HCP primary panel was convened including representation from PAGs and key clinical specialties (neurology, cardiology, internal medicine, physiotherapy, clinical psychology, dietetics and specialist nursing). Guidance evolved on the care provision needed to support seven core goals: early diagnosis and treatment; disease monitoring and organisation of care; maintenance of physical and mental health; family-centred care and caregiver support; patient-doctor dialogue; access to social support and social networking. PARTICIPANTS: From June to October 2022, 252 HCPs and 51 PAG representatives from 27 countries were invited to participate in a Delphi survey. Of the 122 respondents who answered at least one survey question, most were HCPs (100, 82%) from specialist centres; the remainder were PAG representatives (22, 18%). MAIN OUTCOME MEASURE: Both level of agreement and feasibility in practice of each recommendation was tested by two anonymised online Delphi voting rounds. RESULTS: Based on an a priori threshold for consensus of ≥75% agreement, the clinical-patient community endorsed all but one recommendation. However, only 17/49 (35%) recommendations were identified by most HCPs as a core part of routine care; the remainder (32/49 (65%)) were identified as part of core care by <50% of HCPs respondents, or as largely achievable by 30%-45% of HCPs. By comparison, PAGs recorded lower implementation levels. CONCLUSIONS: Further consideration is needed on how to evolve multidisciplinary services (supported by allied HCPs and PAGs) to address the complex needs of those affected by this disease.

An exploration of patient-provider dynamics and childbirth experiences in rural and urban Peru: a qualitative study.

BACKGROUND: Between 2006 and 2013, Peru implemented national programs which drastically decreased rates of maternal and neonatal mortality. However, since 2013, maternal and neonatal mortality in Peru have increased. Additionally, discrimination, abuse, and violence against women persists globally and impacts birthing experiences and mental health. This qualitative study sought to better understand the attitudes and beliefs regarding childbirth among women and providers in Southern Peru. This study also explores how these beliefs influence utilization of skilled care, patient-provider dynamics, and childbirth experiences and identifies factors that impact providers' provision of care. METHODS: Thirty semi-structured interviews were conducted with 15 participants from rural Colca Canyon and 15 participants from urban Arequipa between April and May 2018. In each region, 10 women who had experienced recent births and five providers were interviewed. Provider participants predominantly identified as female and were mostly midwives. All interviews were conducted, transcribed, and coded in Spanish. A framework analysis was followed, and data were charted into two separate thematic frameworks using contextual and evaluative categories of conceptualization of childbirth. RESULTS: All recent births discussed were facility-based births. Four domains emerged: women's current birth experiences, provision of childbirth care, beliefs about childbirth among women and providers, and future health-seeking behavior. Findings suggest that women's feelings of helplessness and frustration were exacerbated by their unmet desire for respectful maternity care and patient advocacy or companionship. Providers attributed strain to perceived patient characteristics and insufficient support, including resources and staff. CONCLUSIONS: Our findings suggest current childbirth experiences placed strain on the patient-provider dynamic and influenced women's attitudes and beliefs about future experiences. Currently, the technical quality of safe childbirth is the main driver of skilled birth attendance and facility-based births for women regardless of negative experiences. However, lack of respectful maternity care has been shown to have major long-term implications for women and subsequently, their children. This is one of the first studies to describe the nuances of patient-provider relationships and women's childbirth experiences in rural and urban Peru.

Humanization practices in the parturitive course from the perspective of puerperae and nurse-midwives.

OBJECTIVE: to understand humanization practices in the parturitive course from the point of view of purperae and nurse-midwives. METHODS: an exploratory, descriptive, qualitative research carried out in a maternity hospital in Bahia State. Semi-structured interviews were carried out, with a structured script applied to 11 mothers and 5 nurse-midwives from March to June 2019. Analysis followed Bardin's content structure. RESULTS: this study unveiled the importance of using soft care technologies, respect for female role, active participation and women's autonomy as a positive impact on the parturition process. FINAL CONSIDERATIONS: nurse-midwives are qualified professionals to assist women in labor and birth. They can favor the implantation and implementation of care with humanization practices, respect for women's choices and incentive to the normal way of delivery with an expanded view of individual and multidisciplinary needs.

Measuring the benefits of the integration of health and social care: qualitative interviews with professional stakeholders and patient representatives.

BACKGROUND: Integrated care has the potential to ease the increasing pressures faced by health and social care systems, however, challenges around measuring the benefits for providers, patients, and service users remain. This paper explores stakeholders' views on the benefits of integrated care and approaches to measuring the integration of health and social care. METHODS: Twenty-five semi-structured qualitative interviews were conducted with professional stakeholders (n = 19) and patient representatives (n = 6). Interviews focused on the benefits of integrated care and how it should be evaluated. Data was analysed using framework analysis. RESULTS: Three overarching themes emerged from the data: (1) integrated care and its benefits, with stakeholders defining it primarily from the patient's perspective; (2) potential measures for assessing the benefits of integration in terms of system effects, patient experiences, and patient outcomes; and (3) broader considerations around the assessment of integrated care, including the use of qualitative methods. CONCLUSIONS: There was consensus among stakeholders that patient experiences and outcomes are the best measures of integration, and that the main measures currently used to assess integration do not directly assess patient benefits. Validated health status measures are readily available, however, a substantial shift in practices is required before their use becomes commonplace.

Improving the UNAIDS 90-90-90 Treatment Targets: Solutions Suggested from a Qualitative Study of HIV Patients, Community Advocates, Health Workers and Program Managers in Jimma, Southwest Ethiopia.

Ethiopia's performance toward the UNAIDS 90-90-90 targets is low. The present study explored interventions to improve delayed HIV care presentation (first 90), poor retention (second 90) and clinical and immunological failure (third 90). We employed a qualitative approach using in-depth interviews with 10 HIV patients, nine health workers, 11 community advocates and five HIV program managers. Ethical approvals were obtained from Australia and Ethiopia. The following were suggested solutions to improve HIV care and treatment to meet the three 90s: (i) strengthening existing programs including collaboration with religious leaders; (ii) implementing new programs such as self-HIV testing, house-to-house HIV testing, community antiretroviral therapy (ART) distribution and teach-test-treat-link strategy; (iii) decentralizing and integrating services such as ART in health post and in private clinics, and integrating HIV care services with mental illness and other non-communicable diseases; and (iv) filling gaps in legislation in issues related with HIV status disclosure and traditional healing practices. In conclusion, the study suggested important solutions for improving delayed HIV care presentation, attrition, and clinical and immunological failure. A program such as the teach-test-treat-link strategy was found to be a cross-cutting intervention to enhance the three 90s. We recommend further nationwide research before implementing the interventions.

Advocacy With Survivors of Intimate Partner Violence: What It Is, What It Isn't, and Why It's Critically Important.

Survivors of intimate partner violence arrive at the doors of domestic violence (DV) programs with a wide variety of needs, including long-term safety and healing, housing, economic stability, health and well-being, and community connection. Although some DV programs offer holistic approaches to survivors, many focus the vast majority of their attention and resources on providing emotional support and safety planning rather than advocating with survivors for their access to needed resources and opportunities. Although services focused on emotional support and safety planning are important, they alone are not likely to result in the life changes that many survivors are seeking. Programs that provide genuine advocacy for survivors-defined as partnering with them to represent their rights and interests while linking them to concrete resources, protections, and opportunities-have been found to be effective and well received. Although an early pillar of DV programs, this type of advocacy has fallen by the wayside in many agencies. In this article, the authors make a case for re-invigorating advocacy efforts designed to improve the life circumstances of survivors. We argue that such efforts will make DV programs more relevant and sought after by a wider range of survivors and that agencies will see real change occur at both the individual and community levels.

In Their Own Words: Experiences of Caregivers of Adults With Cancer as Expressed on Social Media.

PURPOSE: To explore caregivers' writings about their experiences caring for adult individuals with cancer on a social media health communication website. PARTICIPANTS & SETTING: Journal entries (N = 392) were analyzed for 37 adult caregivers who were posting on behalf of 20 individuals with cancer. CaringBridge is a website used by patients and informal caregivers to communicate about acute and chronic disease. METHODOLOGIC APPROACH: A retrospective descriptive study using qualitative content analysis of caregivers' journal entries from 2009 to 2015. FINDINGS: Major categories identified in caregivers' online journals included patient health information, cancer awareness/advocacy, social support, caregiver burden, daily living, emotions (positive and negative), and spirituality. IMPLICATIONS FOR NURSING: Nurses often recommend using social media as a communication strategy for patients with cancer and their caregivers. The findings from this study provide potential guidance nurses may wish to offer caregivers. For example, nurses may talk with caregivers about how and what to post regarding treatment decisions. In addition, nurses can provide support for caregivers struggling with when and how often to communicate on social media.

Creating Guardians of Physiologic Birth: The Development of an Educational Initiative for Student Midwives in the Netherlands.

Women want positive birth experiences with high quality maternity care that is neither too much, too soon, nor too little, too late. Research confirms the effectiveness of midwifery care, and the midwifery approach to birth as physiologic may counter the upward trend of the unnecessary medicalization of birth. The role of guardian of physiologic birth is seen as central to midwifery practice; however, medical hegemony has led to the subordination of midwives, which inhibits them in fulfilling the role as guardian of physiologic birth. Learning to become powerful advocates of physiologic birth creates midwives able to speak up for effective, evidence-based maternity care and challenge the unnecessary use of obstetric intervention. Midwifery education has a role to fulfil in molding midwives who are able to assume this role. This brief report describes the development of an educational prototype aimed at increasing student midwife agency as an advocate of physiologic birth. This was done using rapid prototyping (RP) methodology, in which important stakeholders gave input and feedback during the educational design and development process. Input from stakeholders led to the inclusion of persuasive communication strategies and discussion and debate as teaching methodologies in order to increase student midwife agency to argue for physiologic birth. Reflective evidence-based practice, using the Optimality Index-Netherlands, allowed students to reflect on their practice while providing a framework for discussion. Working with the RP methodology allowed for the development of a prototype that reflected the needs of midwifery stakeholders and was mindful of material and human resources.

Patient-Centeredness during In-Depth Consultation in the Outpatient Clinic of a Tertiary Hospital in Korea: Paradigm Shift from Disease to Patient.

BACKGROUND: Patient-centered care (PCC) and integrative care approach are widely advocated. However, their implementation usually requires an extended consultation time. Despite significant advances in medical diagnosis and treatment, no studies have examined consultation time and patient centeredness in Korea. METHODS: We conducted a "15-Minute Consultation" for first-time patients in outpatient clinics of 13 departments. A control group was selected from the same physicians' first-time patients, adjusting for age and gender. A total of 275 patients were selected for receiving in-depth consultation and 141 control patients were selected for regular consultation. Data were collected from patients using a questionnaire comprising a patient-centeredness scale and items on potential predictors such as socio-demographic and clinical factors. We also investigated the participating physician's professionalism. RESULTS: As compared to the control group, the in-depth consultation group scored higher on 5 variables associated with PCC, including (patients' perception of) medical professionals, wait and consultation times, treatment, patient advocacy, and patient satisfaction. While 92.4% of patients in the in-depth consultation group reported that the consultation time was sufficient, only 69.0% of those in the control group reported the same (P < 0.01). In the in-depth consultation group, scores on satisfaction level were the highest for the department of internal medicine, followed by departments of surgery and pediatrics. Participating physicians' improved satisfaction following the intervention proved that in-depth consultation facilitated building a rapport with patients. CONCLUSION: This study illustrated that the provision of sufficiently long consultation for serious and rare diseases could improve PCC and physicians' professionalism. Health authorities should reshuffle the healthcare delivery system and provide sufficient consultation time to ensure PCC and medical professionalism.

What deserves our respect? Reexamination of respect for autonomy in the context of the management of chronic conditions.

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle-respect for autonomy-is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical setting remain understudied. However, the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient's decisions, behaviors, emotions, or life-style regardless of his or her "autonomous" capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities.

Cancer support services: Are they meeting the needs of rural radiotherapy patients?

This paper examines the supportive care in place to meet the needs of patients receiving radiotherapy at a regional oncology service in Bunbury, Western Australia. Semi-structured in-depth interviews with 21 service providers and 17 adults diagnosed with cancer who underwent radiotherapy at the Service were recorded, transcribed and analysed thematically. Key themes relevant were co-operation and collaboration of interdisciplinary team members; support from organisations to assist with accommodation, transport, emotional support and provision of practical assistance, as well as barriers to accessing support. Most participants were positive about the support available, recognising the needs of rural radiotherapy patients for assistance with travel, accommodation and psychosocial support to help deal with the stressors they face. Collaboration between the various service providers maximised the support available to patients but the drop off in psychosocial support once the intensity of treatment was completed was identified as a weakness in the support available. The support system, established around a regional radiotherapy service, was enhanced by the collaborative professional relationships developed among service providers. The service extends beyond clinical service delivery by recognising financial, logistical and psychosocial support needs, factors to be considered to ensure rural radiotherapy patients are provided with holistic care.

Patient-Centeredness during In-Depth Consultation in the Outpatient Clinic of a Tertiary Hospital in Korea: Paradigm Shift from Disease to Patient

BACKGROUND: Patient-centered care (PCC) and integrative care approach are widely advocated. However, their implementation usually requires an extended consultation time. Despite significant advances in medical diagnosis and treatment, no studies have examined consultation time and patient centeredness in Korea. METHODS: We conducted a “15-Minute Consultation” for first-time patients in outpatient clinics of 13 departments. A control group was selected from the same physicians' first-time patients, adjusting for age and gender. A total of 275 patients were selected for receiving in-depth consultation and 141 control patients were selected for regular consultation. Data were collected from patients using a questionnaire comprising a patient-centeredness scale and items on potential predictors such as socio-demographic and clinical factors. We also investigated the participating physician's professionalism. RESULTS: As compared to the control group, the in-depth consultation group scored higher on 5 variables associated with PCC, including (patients' perception of) medical professionals, wait and consultation times, treatment, patient advocacy, and patient satisfaction. While 92.4% of patients in the in-depth consultation group reported that the consultation time was sufficient, only 69.0% of those in the control group reported the same (P < 0.01). In the in-depth consultation group, scores on satisfaction level were the highest for the department of internal medicine, followed by departments of surgery and pediatrics. Participating physicians' improved satisfaction following the intervention proved that in-depth consultation facilitated building a rapport with patients. CONCLUSION: This study illustrated that the provision of sufficiently long consultation for serious and rare diseases could improve PCC and physicians' professionalism. Health authorities should reshuffle the healthcare delivery system and provide sufficient consultation time to ensure PCC and medical professionalism.

Participation of relatives in the care of cancer patients in hospital-A scoping review.

The purpose of the review was to describe what kind of research has been conducted concerning relatives' participation in the care of cancer patients in hospital and how relatives have participated in the care. Data (n = 9) were identified through a manual search and by searching the electronic databases (n = 8) Cinahl, PubMed and Cochrane Library and analysed with deductive content analysis. According to the review, participation in the concrete care appeared as taking care of comprehensive care and the quality of care, helping with daily activities and helping the healthcare professionals. Emotional support appeared as protecting, supporting and visiting the patient and discussing with the patient. Participation in decision-making appeared as acting as an advocate for the patient, participating in the discussion concerning the decision-making and participating in the discussion concerning the decisions of end of life. According to the review, research concerning this topic seems to be rare. While hospital periods are shortening and homecare is increasing, the role of relatives as a supporter of the cancer patient is becoming even stronger. In the future, more research should be conducted how the patients experience participation and what are their wishes.