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1.
BMC Public Health ; 24(1): 1836, 2024 Jul 09.
Artigo em Inglês | MEDLINE | ID: mdl-38982399

RESUMO

BACKGROUND: Some clients who access healthcare services experience problems due to the wider determinants of health which cannot be addressed (solely) by the medical sector. Social Prescribing (SP) addresses clients ' wider health needs and is based on linkworkers who support primary care clients in accessing social, community and voluntary care services that support their needs. Previous literature has provided valuable insights about what works (or not) in an early stage of implementing SP. However, there is limited insight into what works for the implementation of SP towards embedding. This study provides guiding principles by which SP can be successfully implemented towards the embedding stage and identifies which contextual factors and mechanisms influence these guiding principles. METHODS: A Rapid Realist Review was conducted to examine what works, for whom, why, and in which contexts. A local Dutch reference panel consisting of health and care organisations helped to inform the research questions. Additionally, a workshop was held with the panel, to discuss what the international insights mean for their local contexts. This input helped to further refine the literature review's findings. RESULTS: Five guiding principles were identified for successful implementation of SP at the embedding stage: • Create awareness for addressing the wider determinants of health and the role SP services can play; • Ensure health and care professionals build trusting relationships with all involved stakeholders to create a cyclical referral process; • Invest in linkworkers' skills and capacity so that they can act as a bridge between the sectors; • Ensure clients receive appropriate support to improve their self-reliance and increase their community participation; • Invest in the aligning of structures, processes and resources between involved sectors to support the use of SP services. CONCLUSION: To embed SP, structural changes on a system level as well as cultural changes are needed. This will require a shift in attitude amongst health and care professionals as well as clients towards the use, role and benefit of SP services in addressing the wider determinants of health. It will also require policymakers and researchers to involve communities and include their perspectives.


Assuntos
Atenção Primária à Saúde , Humanos , Países Baixos , Determinantes Sociais da Saúde , Acessibilidade aos Serviços de Saúde
2.
J Clin Nurs ; 2024 Jul 15.
Artigo em Inglês | MEDLINE | ID: mdl-39007168

RESUMO

AIM: To describe how clinicians provide culturally responsive care to culturally diverse people with kidney failure in haemodialysis centres. BACKGROUND: Culturally diverse individuals receiving in-centre maintenance haemodialysis have unique cultural needs. Unmet cultural needs can impair and profoundly affect their experiences. Given culturally responsive care has the potential to enhance the experiences of culturally diverse people, it is vital to understand how clinicians provide culturally responsive care. METHOD: A scoping review was undertaken using Arksey and OMalleys framework. Five databases: Medline and CINAHL Complete (EBSCO), PsycINFO, Embase (OVID) and ProQuest Theses and Dissertation databases were searched for research literature published in English between 1990 and 2023. Narrative synthesis was used to synthesise the data. RESULTS: From the 17,271 records screened, 17 papers reporting 14 studies met the inclusion criteria. Narrative synthesis revealed two themes: (i) communication enablers and barriers including linguistic differences, professional and lay interpreter use; and (ii) the importance of culture, which encompassed acknowledging cultural priorities, accommodating cultural food preferences and access to cultural training. CONCLUSION: While competing priorities associated with haemodialysis may be a challenge for clinicians, recognising the significance of cultural care needs and accommodating them in care is important. Demonstrating respect towards cultural diversity and providing person-centred care by facilitating the unique cultural needs of people with kidney failure in haemodialysis is imperative. RELEVANCE TO CLINICAL PRACTICE: Culturally responsive care is complex and multidimensional. Individuals' cultural care needs should be acknowledged, respected, and accommodated in care. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. The study protocol was registered in the Open Science Framework. https://osf.io/uv8g3.

3.
J Ren Nutr ; 2024 Jul 09.
Artigo em Inglês | MEDLINE | ID: mdl-38992520

RESUMO

OBJECTIVE: To describe the process of developing and implementing a novel approach to renal diet education by changing from a nutrient-based food list to a pictorial meal compilation approach through the skill steps: Plan, Select, Cook, Eat. DESIGN AND METHODS: The skill-based teaching method accommodates low literacy levels and respects cultural values. This teaching style aligns the complex renal diet guidelines with family living. Each meal plan is based on a balanced diet and includes family preferences. Appropriate cooking methods and food swaps that match renal diet specifications are included. The accompanying Cook for Life cookbook demonstrates how to prepare the new kidney-friendly family meal. Recipes were supplied by a local Maori elder and his whanau and tested by the dietitian. The cookbook is provided to all patients receiving renal dietetic education. The teaching method has undergone several iterations to accommodate feedback from dietitians, nurses, doctors and patients. This included patient engagement to develop the Storybook, a pictorial representation of typical meals consumed in the community with a corresponding food substitution to illustrate how to compile kidney-friendly meals. RESULTS: Analysis of feedback regarding this approach indicates high levels of acceptance and engagement with this new teaching style. CONCLUSION: This practical skill based dietary education teaching style appears to be a feasible, acceptable, culturally sensitive, and appropriate approach to dietary education for people who live with kidney disease. Patient engagement in the design of this approach supports effective learning and behaviour change.

4.
Nurs Philos ; 25(3): e12489, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38993083

RESUMO

In this article, we investigate how the concept of Care Biography and related concepts are understood and operationalised and describe how it can be applied to advancing our understanding and practice of holistic and person-centred care. Walker and Avant's eight-step concept analysis method was conducted involving multiple database searches, with potential or actual applications of Care Biography identified based on multiple discussions among all authors. Our findings demonstrate Care Biography to be a novel overarching concept derived from the conjunction of multiple other concepts and applicable across multiple care settings. Concepts related to Care Biography exist but were more narrowly defined and mainly applied in intensive care, aged care, and palliative care settings. They are associated with the themes of Meaningfulness and Existential Coping, Empathy and Understanding, Promoting Positive Relationships, Social and Cultural Contexts, and Self-Care, which we used to inform and refine our concept analysis of Care Biography. In Conclusion, the concept of Care Biography, can provide a deeper understanding of a person and their care needs, facilitate integrated and personalised care, empower people to be in control of their care throughout their life, and help promote ethical standards of care.


Assuntos
Formação de Conceito , Humanos , Assistência Centrada no Paciente/normas , Empatia
5.
J Pak Med Assoc ; 74(6): 1189-1191, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38949000

RESUMO

In this communication, we discuss the concept of psychological first aid, as relevant to diabetes management. Psychological first aid, in the diabetes care context, is defined as "the empathic support, counselling and education to improve coping skills, and optimize selfcare of persons living with diabetes, so that psychological well-being can be optimized." Various models can help provide structured psychological first aid. We feel that each and every health care provider should be able to provide effective first aid, including psychological first aid.


Assuntos
Adaptação Psicológica , Aconselhamento , Humanos , Aconselhamento/métodos , Diabetes Mellitus/psicologia , Diabetes Mellitus/terapia , Educação de Pacientes como Assunto/métodos , Autocuidado/psicologia , Apoio Social , Empatia , Primeiros Socorros/métodos
6.
Reprod Health ; 21(1): 97, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38956635

RESUMO

BACKGROUND: Today, person-centred care is seen as a cornerstone of health policy and practice, but accommodating individual patient preferences can be challenging, for example involving caesarean section on maternal request (CSMR). The aim of this study was to explore Swedish health professionals' perspectives on CSMR and analyse them with regard to potential conflicts that may arise from person-centred care, specifically in relation to shared decision-making. METHODS: A qualitative study using both inductive and deductive content analysis was conducted based on semi-structured interviews. It was based on a purposeful sampling of 12 health professionals: seven obstetricians, three midwives and two neonatologists working at different hospitals in southern and central Sweden. The interviews were recorded either in a telephone call or in a video conference call, and audio files were deleted after transcription. RESULTS: In the interviews, twelve types of expressions (sub-categories) of five types of conflicts (categories) between shared decision-making and CSMR emerged. Most health professionals agreed in principle that women have the right to decide over their own body, but did not believe this included the right to choose surgery without medical indications (patient autonomy). The health professionals also expressed that they had to consider not only the woman's current preferences and health but also her future health, which could be negatively impacted by a CSMR (treatment quality and patient safety). Furthermore, the health professionals did not consider costs in the individual decision, but thought CSMR might lead to crowding-out effects (avoiding treatments that harm others). Although the health professionals emphasised that every CSMR request was addressed individually, they referred to different strategies for avoiding arbitrariness (equality and non-discrimination). Lastly, they described that CSMR entailed a multifaceted decision being individual yet collective, and the use of birth contracts in order to increase a woman's sense of security (an uncomplicated decision-making process). CONCLUSIONS: The complex landscape for handling CSMR in Sweden, arising from a restrictive approach centred on collective and standardised solutions alongside a simultaneous shift towards person-centred care and individual decision-making, was evident in the health professionals' reasoning. Although most health professionals emphasised that the mode of delivery is ultimately a professional decision, they still strived towards shared decision-making through information and support. Given the different views on CSMR, it is of utmost importance for healthcare professionals and women to reach a consensus on how to address this issue and to discuss what patient autonomy and shared decision-making mean in this specific context.


Person-centered care is today a widespread approach, but accommodating individual patient preferences can be challenging, for example involving caesarean section on maternal request (CSMR). This study examines Swedish health professionals' views on CSMR. Interviews with 12 health professionals reveal conflicts between CSMR and key aspects of person-centered care, in particular shared decision-making. While professionals acknowledge women's autonomy, they question CSMR without medical need. Concerns include for example treatment quality and patient safety, and avoiding treatments that harm others. The Swedish context, balancing collective solutions with individualized care, complicates decision-making. Unlike countries with more private healthcare, where CSMR support might be higher, Swedish health professionals emphasize shared decision-making despite viewing the mode of delivery as primarily a professional decision. This study sheds light on the challenges in integrating CSMR into person-centered care frameworks.


Assuntos
Cesárea , Tomada de Decisão Compartilhada , Preferência do Paciente , Assistência Centrada no Paciente , Pesquisa Qualitativa , Humanos , Feminino , Suécia , Gravidez , Cesárea/psicologia , Atitude do Pessoal de Saúde , Participação do Paciente/psicologia , Adulto , Tomada de Decisões
7.
South Afr J Crit Care ; 40(1): e750, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38989477

RESUMO

Background: Interventions administered to critically ill patients, including mechanical ventilation, sedation or other treatments may hinder communication between patients and nurses. These communication challenges may affect critical care nurses' ability to provide compassionate, person-centred care. Objectives: To identify nurses' experiences with patients who are communication-vulnerable in the intensive care unit and how they affect nurses' ability to offer compassionate care. Methods: This qualitative explorative descriptive study involved nurses who worked in intensive care units from four private hospitals in Gauteng, South Africa. Focus groups were conducted with 30 critical care nurses in groups of two to six participants each. Thematic analysis was used to identify themes. Results: Five main themes were identified based on nurses' reports of their experiences with critically ill patients who experience communication difficulties and their impact on rendering compassionate care. Themes were deductively identified based on the social purposes of communication categories. Participants indicated that communication-vulnerable patients influence their ability to provide compassionate care. Generally, the physical, emotional, social and communication difficulties of assisting communication-vulnerable patients caused nurses to feel frustrated and negative towards their work environment, which added to their work stress and sometimes resulted in compassion fatigue. Conclusion: The study shows that various factors could impact the nurses' ability to provide compassionate care and that they require support to provide person-centred care. These factors can include the physical environment, the patient's alertness and awareness and institutional barriers. To support nurses in providing compassionate care, communication partner training may be warranted. Contribution of the study: This study aims to increase awareness of the aspects that may contribute to compassion fatigue for nurses. By identifying these aspects greater support can be provided by facilities where nurses work.

8.
Int J Drug Policy ; 130: 104520, 2024 Jul 13.
Artigo em Inglês | MEDLINE | ID: mdl-39003893

RESUMO

BACKGROUND: Patient-reported experience measures (PREMs) are an important aspect of assessing and improving women's experiences of person-centred care during treatment for Opioid Use Disorder (OUD). This scoping review aimed to 1) examine the extent, type, and characteristics of evidence regarding women's OUD treatment experiences, and 2) describe the extent to which PREMs and person-centred care principles are incorporated within research methods. METHODS: Following Joanna Briggs Institute guidelines and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR), we conducted a scoping review to identify peer-reviewed articles on women's OUD treatment experiences. Data were extracted from 39 included studies and synthesised based on study design, method of assessment/analysis (including use of PREMs), key findings, and the integration of person-centred care principles. RESULTS: Analysis of included studies revealed a predominance of qualitative research focused on women's experiences of pharmacological OUD treatment (methadone and/or buprenorphine) in Western countries. Women in these studies reported predominantly negative or mixed experiences of treatment. Few studies used validated PREMs and there was a lack of direct assessment or focus on recognised person-centred care principles. However, common categories of outcomes/findings identified in results across studies broadly aligned with person-centred care principles (e.g., fast access to reliable healthcare, effective treatment by trusted professionals), emphasising their applicability to women's experiences of treatment. CONCLUSIONS: Although there has been an increased focus on women's experiences of treatment for OUD in recent years, results highlighted room for improvement regarding the systematic and comprehensive assessment of women's experiences across different contexts. Given the often negative or mixed experiences reported by women, an increased focus on assessing service provision through a person-centred care lens (including utilising PREMs) may allow for service improvements or adaptations targeted towards the needs and experiences of women.

9.
Harm Reduct J ; 21(1): 128, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38951880

RESUMO

BACKGROUND: Deaths due to drug overdose are an international issue, causing an estimated 128,000 global deaths in 2019. Scotland has the highest rate of drug-related deaths in Europe, with those in the most deprived areas at greater risk than those in affluent areas. There is a paucity of research on digital solutions, particularly from the perspective of those who use drugs who additionally access harm reduction and homelessness support services. The Digital Lifelines Scotland programme (DLS) provides vulnerable people who use/d drugs with digital devices to connect with services. METHODS: This paper reports on the evaluation of the DLS from the perspective of service users who accessed services for those at risk of drug-related harms. A mixed methods approach was used including an online-survey (n = 19) and semi-structured interviews (n = 21). Survey data were analysed descriptively and interview data through inductive coding, informed by the Technology, People, Organisations and Macroenvironmental factors (TPOM) framework, to investigate the use, access, and availability of devices, and people's experiences and perceptions of them. RESULTS: Most participants lived in social/council housing (63.2%, n = 12), many lived alone (68.4%, n = 13). They were mainly over 40 years old and lived in a city. Participants described a desire for data privacy, knowledge, and education, and placed a nascent social and personal value on digital devices. Participants pointed to the person-centred individuality of the service provision as one of the reasons to routinely engage with services. Service users experienced an increased sense of value and there was a palpable sense of community, connection and belonging developed through the programme, including interaction with services and devices. CONCLUSIONS: This paper presents a unique perspective which documents the experiences of service users on the DLS. Participants illustrated a desire for life improvement and a collective and individual feeling of responsibility towards themselves and digital devices. Digital inclusion has the potential to provide avenues by which service users can safely and constructively access services and society to improve outcomes. This paper provides a foundation to further cultivate the insight of service users on digital solutions in this emerging area.


Assuntos
Tecnologia Digital , Redução do Dano , Humanos , Escócia , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Overdose de Drogas/prevenção & controle , Usuários de Drogas/psicologia , Adulto Jovem , Pessoas Mal Alojadas , Transtornos Relacionados ao Uso de Substâncias , Inquéritos e Questionários
10.
BMC Palliat Care ; 23(1): 166, 2024 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-38970100

RESUMO

BACKGROUND: The countries of the world are becoming increasingly multicultural and diverse, both as a result of growing migration, of people fleeing countries at war but also due to increased mobility related to labour immigration. Culture is a broad concept where the definitions focus on learned and shared values, traditions, and beliefs of a group of individuals. People's culture affects health and perceptions of illness as well as treatment, symptoms, and care. Moreover, people who are at the end of life, live and exist within all levels and contexts of care. Specialized palliative care requires that the nurse has sufficient knowledge and skills to be responsible for meeting the patient's nursing needs also on a cultural level, regardless of cultural affiliation. The aim of the study was to highlight nurses' experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care. METHODS: The study was conducted with a qualitative design and inductive approach. Semi-structured interviews were conducted with twelve nurses in western Sweden. Data were analysed using qualitative content analysis. RESULTS: The nurses had an awareness of culture as a phenomenon and how it affected palliative care at the end of life. The results showed two categories, Awareness of the impact of culture on nursing and Culture's impact and influence on the nurse's mindset and approach, consisting of seven subcategories that highlight the nurse's experience. It emerged that there are differences between cultures regarding notions of dying and death, who should be informed, and treatments. There were also challenges and emotions that arose when cultural preferences differed among everyone involved. A person-centred approach allowed for recognition of the dying person's culture, to meet diverse cultural needs and wishes. CONCLUSION: Providing culturally competent care is a major challenge. There are often no routines or methods prescribed for how nurses should relate to and handle the diversity of cultural notions that may differ from the values and cornerstones of palliative care. Having a person-centred approach as strategy can help to better manage the situation and provide equitable care on terms that respect cultural diversity.


Assuntos
Cuidados Paliativos , Pesquisa Qualitativa , Assistência Terminal , Humanos , Feminino , Suécia , Adulto , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Assistência Terminal/psicologia , Assistência Terminal/métodos , Enfermeiras e Enfermeiros/psicologia , Entrevistas como Assunto/métodos , Atitude do Pessoal de Saúde
11.
Int J Audiol ; : 1-9, 2024 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-38970784

RESUMO

OBJECTIVE: To explore the clinical use of 'My Hearing Explained for Children' (MHEfC) with children aged 8-11 years, from the perspectives of the child, parents and audiologist. DESIGN: A mixed methods randomised control trial. Participants completed evaluation questionnaires after their appointment. Statistical and thematic analyses were used to examine the rating scale and open response elements of the questionnaires respectively. STUDY SAMPLE: 45 families participated, 24 randomised to MHEfC and 21 to standard care. RESULTS: Use of MHEfC increased the appointment duration by 8.2 minutes (95% CI 4.1 to 14.2 minutes), which was acceptable to parents (96%) and audiologists (67%). It promoted conversation around 'behavioural and communication tactics', 'specific listening situations' and 'listening effort' at the expense of 'anatomy/physiology/aetiology'. MHEfC positively impacted the discussion of test results (54%); ease of finding joint solutions to problems (71%); and the nature of issues and management options discussed (54%). Parental satisfaction with discussion was high on both pathways, so some parents and audiologists questioned MHEfC necessity and recommended targeted use in future. CONCLUSIONS: MHEfC was acceptable to children (70%) and parents (86%). It successfully promoted child-centred topics of discussion and can positively impact discussion outcomes.

12.
Artigo em Inglês | MEDLINE | ID: mdl-38971567

RESUMO

The traditional healthcare model is focused on diseases (medicine and natural science) and does not acknowledge patients' resources and abilities to be experts in their own life based on their lived experiences. Improving healthcare safety, quality and coordination, as well as quality of life, are important aims in the care of patients with chronic conditions. Person-centred care needs to ensure that people's values and preferences guide clinical decisions. This paper reviews current knowledge to develop (i) digital care pathways for rhinitis and asthma multimorbidity and (ii) digitally-enabled person-centred care (1). It combines all relevant research evidence, including the so-called real-world evidence, with the ultimate goal to develop digitally-enabled, patient-centred care. The paper includes (i) Allergic Rhinitis and its Impact on Asthma (ARIA), a two-decade journey, (ii) Grading of Recommendations, Assessment, Development and Evaluation (GRADE), the evidence-based model of guidelines in airway diseases, (iii) mHealth impact on airway diseases, (iv) from guidelines to digital care pathways, (v) embedding Planetary Health, (vi) novel classification of rhinitis and asthma, (vi) embedding real-life data with population-based studies, (vii) the ARIA-EAACI strategy for the management of airway diseases using digital biomarkers, (viii) Artificial Intelligence, (ix) the development of digitally-enabled ARIA Person-Centred Care and (x) the political agenda. The ultimate goal is to propose ARIA 2024 guidelines centred around the patient in order to make them more applicable and sustainable.

13.
Health Expect ; 27(3): e14116, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38896007

RESUMO

INTRODUCTION: Women and those with younger onset Parkinson's Disease (YOPD) are typically diagnosed later and face unique situations and challenges. This essay aims to raise awareness of the difficulties in diagnosing YOPD and the need for a personalised approach to care for women with YOPD. METHODS: Two professional women with YOPD (academic physiotherapist and practicing dentist) and a female neurologist (clinician academic) came together to write a narrative essay on their personal experience and perspectives in relation to women and YOPD. RESULTS: The essay outlines how the experience of diagnosis is likened to a complex puzzle box with many interlocking components that are hidden and difficult to solve. The concerns of the women about their identity, work, family and the future, with most supports targeting those that are older and retired are outlined. CONCLUSION: It is concluded that YOPD is a complex puzzle to solve, but can be done by understanding all the intricate interlocking components of the puzzle and combined with greater awareness could lead to earlier diagnosis and the delivery of successful person-centred care. PATIENT OR PUBLIC CONTRIBUTION: People with lived experience were involved in the essay conception and writing.


Assuntos
Doença de Parkinson , Humanos , Doença de Parkinson/psicologia , Doença de Parkinson/terapia , Feminino , Pessoa de Meia-Idade , Idade de Início
14.
J Med Imaging Radiat Sci ; 55(3): 101441, 2024 Jun 27.
Artigo em Inglês | MEDLINE | ID: mdl-38943280

RESUMO

INTRODUCTION: There is a lack of evidence about the experiences of radiographers providing care to people living with dementia (PLWD). This study explored the perceptions and experiences of radiography practitioners when delivering person-centred dementia care (PCDC) in both diagnostic imaging and radiotherapy departments. METHODS: A two-phase qualitative multi-method study was conducted. For phase 1, fifteen diagnostic and two therapeutic radiography practitioners from across the UK participated with online focus group discussions. For phase 2, four key stakeholders involved with the development of the UK Society of College of Radiographers Caring for People with Dementia practice guidelines for diagnostic and therapeutic radiography practitioners took part with individual semi-structured interviews. RESULTS: Participants from both phases identified enablers and barriers to providing person-centred care to individuals living with dementia. Three themes were identified that were linked to (1) Time and workload pressures in delivering person-centred dementia care, (2) Workplace practice and norms, and (3) Areas for improvement in delivering person-centred dementia care. DISCUSSION: Delivering PCDC can be challenging in practice. This is often due to workplace cultures where time and resources linked to productivity and waiting lists are the norms and impact on the delivery of PCDC. Leaders and managers of departments were thought to not always value a culture of PCDC but were seen as key influencers in supporting change and impact in delivering PCDC. Radiography practitioners were not always aware that a patient had dementia prior to their attendance in the department making it difficult to prepare ahead of appointments. Care partners were identified as having the potential to help alleviate some challenges radiographers faced. Findings also suggest a need for more education and training linked to dementia awareness. Further research is warranted in this area.

15.
J Cancer Surviv ; 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38829473

RESUMO

PURPOSE: The aim of this study was to explore patients' experiences of being prepared for allogenic haematopoietic cell transplantation and to explore their perceived self-efficacy and preparedness for self-care after allogenic haematopoietic cell transplantation. METHODS: Nine participants, who recently underwent allo-HCT, were interviewed regarding their views on preparedness, self-efficacy and self-care. The interviews were analysed using inductive qualitative content analysis. RESULTS: An overarching theme, Life is taken apart, then you have to know how to put the pieces together, and four sub-themes: Convert information into something understandable; Taking responsibility, maintaining and preparing for an uncertain time in life; Balancing vigilance with independence; and Reorientating in an altered body places new demands on self-care illustrate the dismantlement of life during treatment and how actions and approaches can build a new life. CONCLUSIONS: Both participants and healthcare professionals prioritised preparing for allo-HCT in the period before admission. However, during admission, preparation decreased and the time was not used for preparatory learning. This meant that participants were well prepared for the acute phase but unprepared for life after completion of treatment. Among the participants, self-efficacy was good. They sought information about taking care of their health before and in the aftermath of allo-HCT. IMPLICATIONS FOR CANCER SURVIVORS: This study provides insight into, and knowledge about, how patients prepare before, during and after treatment. This knowledge should primarily be directed towards healthcare professionals to be used for future patients who may need advice and support, as well as continued preparation for a life after transplantation.

16.
BMC Cancer ; 24(1): 722, 2024 Jun 11.
Artigo em Inglês | MEDLINE | ID: mdl-38862904

RESUMO

BACKGROUND: Childhood, adolescent, and young adult (CAYA) cancer survivors, at risk for late effects, including cancer-related fatigue, cardiovascular issues, and psychosocial challenges, may benefit from interventions stimulating behaviour adjustments. Three nurse-led eHealth interventions (REVIVER) delivered via video calls and elaborating on person-centred care, cognitive behaviour therapy and/or motivational interviewing were developed. These interventions target: 1) fatigue management, 2) healthier lifestyle behaviours, and 3) self-efficacy and self-management. This study aimed to assess the feasibility and potential effectiveness of the REVIVER interventions for CAYA cancer survivors and healthcare professionals. METHODS: In a single-group mixed methods design, CAYA cancer survivors aged 16-54, more than five years post-treatment, were enrolled. Feasibility, assessed via Bowen's outcomes for feasibility studies, included acceptability, practicality, integration and implementation, demand and adherence. Qualitative data from semi-structured interviews and a focus group interview with survivors and healthcare professionals supplemented the evaluation. Paired sample t-tests assessed changes in self-reported quality of life, fatigue, lifestyle, self-management, and self-efficacy at baseline (T0), post-intervention (T1), and 6-month follow-up (T2). RESULTS: The interventions and video consults were generally acceptable, practical, and successfully integrated and implemented. Success factors included the nurse consultant (i.e., communication, approach, and attitude) and the personalised approach. Barriers included sustainability concerns, technical issues, and short intervention duration. Regarding demand, 71.4%, 65.4%, and 100% of eligible CAYA cancer survivors engaged in the fatigue (N = 15), lifestyle (N = 17) and empowerment (N = 3) intervention, respectively, with 5, 5 and 2 participants interviewed, correspondingly. Low interest (demand) in the empowerment intervention (N = 3) and dropout rates of one-third for both fatigue and empowerment interventions were noted (adherence). Improvements in quality of life, fatigue (fatigue intervention), lifestyle (lifestyle intervention), self-efficacy, and self-management were evident among survivors who completed the fatigue and lifestyle interventions, with medium and large effect sizes observed immediately after the intervention and six months post-intervention. CONCLUSIONS: Our study demonstrates the feasibility of nurse-led video coaching (REVIVER interventions) despite lower demand for the empowerment intervention and lower adherence to the fatigue and empowerment interventions. The medium and high effect sizes found for those who completed the interventions hold potential clinical significance for future studies investigating the effectiveness of the REVIVER interventions.


Assuntos
Sobreviventes de Câncer , Estudos de Viabilidade , Qualidade de Vida , Humanos , Sobreviventes de Câncer/psicologia , Adolescente , Feminino , Masculino , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Telemedicina , Tutoria/métodos , Autoeficácia , Fadiga/etiologia , Neoplasias/enfermagem , Neoplasias/psicologia , Terapia Cognitivo-Comportamental/métodos , Autogestão/métodos , Criança , Entrevista Motivacional/métodos
17.
Nurs Ethics ; : 9697330241255934, 2024 Jun 06.
Artigo em Inglês | MEDLINE | ID: mdl-38842360

RESUMO

BACKGROUND: Person-centred care is based on ethical principles, and it is regarded as high-quality care. Care of older persons should embrace person-centredness. During the pandemic, older persons were highlighted as a vulnerable group at risk of developing serious illness and/or suffering death from COVID-19. Several pandemic-related measures were introduced in residential care facilities (RCFs) to reduce this risk, which influenced the possibilities to lead and provide a person-centred care. AIM: This study's aim was to explore ethical challenges in relation to person-centredness during the COVID-19 pandemic, from the perspective of leaders in RCFs. RESEARCH DESIGN: The study had a qualitative descriptive design. PARTICIPANTS AND RESEARCH CONTEXT: Semi-structured interviews were conducted with 26 leaders working in RCFs in Sweden. Data were analysed using conventional content analysis. ETHICAL CONSIDERATIONS: The study was approved by the Swedish Ethical Review Authority. The participants received oral and written information about the study and gave written consent. The study was conducted in accordance with the Declaration of Helsinki. FINDINGS: The overarching ethical challenge was Having to disregard the individual needs of the person in order to protect the group and society. This included (a) Protecting the group versus promoting the older person's autonomy; (b) Being forced to lead care based on uncertainty instead of evidence; (c) Striving to provide dignified care but lacking opportunities; and (d) Going far beyond ordinary duty and endangering one's own and the staff's health. DISCUSSION: The ethical challenges meant being torn between the person's individual needs and protecting the group and society, with clashing ethical principles as a consequence. CONCLUSIONS: The leaders faced ethical situations resulting in undignified and compromised person-centred care, which has implications for stakeholders and management who need to address the work conditions in RCFs.

18.
Int J Audiol ; : 1-10, 2024 Jun 02.
Artigo em Inglês | MEDLINE | ID: mdl-38824465

RESUMO

OBJECTIVE: Explore the impact of Ida's "My Hearing Explained" (MHE) tool on audiologists' language and patients' understanding/interpretation of hearing test results. DESIGN: Audiologists were video-recorded in two sequential conditions: 1) giving standard audiogram explanations to 13 patients and, 2) following discretionary self-training, giving explanations using the MHE tool (nine patients). Outcomes of interest were audiologists' language complexity, use of jargon, and audiologist-patient interactivity. Semi-structured patient interviews, conducted 1-7 days after appointments, were analysed using inductive qualitative content analysis. Patient recall was verified. STUDY SAMPLE: Four audiologists from one United Kingdom audiology service, and 22 patients (mean age 63.5 yrs) participated. RESULTS: In comparison to standard audiogram explanations, audiologists' language was simpler and audiologist-patient interactivity greater with the MHE tool. Interview data analysis revealed differences between explanation types within the themes of "Understanding" and "Interpretation." 54% (standard audiogram) and 22% (MHE tool) of patients expressed a desire for takeaway information. 31% (standard audiogram) and 67% (MHE tool) of patients reported their explanation helped them relay their results to others. Four patients (one receiving the MHE tool) incorrectly recalled information, suggesting inadequate understanding in these cases. CONCLUSIONS: The MHE tool has potential for improving the accessibility and comprehensibility of hearing test results.

19.
Int J Qual Stud Health Well-being ; 19(1): 2367851, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38870415

RESUMO

Drawing on data from ethnographic fieldwork and interprofessional focus group discussions, this study enquires into staff's everyday life on a geriatric ward to explore and understand conditions for engaging in narrative relations in in-patient geriatric care. Avoiding individualistic understandings of narrative practices, we applied a narrative-in-action methodology built on a relational understanding of narrativity, where individual narratives are not separated from social and cultural features. This helped us explore how individual interpretations of the conditions for everyday practices come together with broader social or cultural understandings to gain situated insights about how these are continuously related and reformed by one another in everyday situations of geriatric care. The findings offer insights into the opportunities to engage in narrative relations based on how healthcare staff on a geriatric ward interpret conditions for their practices, and how they act based on such interpretations. While some interpretations were associated with attitudes and activities encouraging narrative relations, others simultaneously thwarted narrative relations by enacting task-orientation, division, or a focus on measurable biomedical or function-related outcomes. Moreover, the findings suggest and discuss consequences of the tensions created as interpretations are enacted in everyday healthcare situations, thus questioning assumptions about conditions as something static and linear.


Assuntos
Atitude do Pessoal de Saúde , Grupos Focais , Geriatria , Narração , Humanos , Idoso , Feminino , Masculino , Antropologia Cultural , Pesquisa Qualitativa , Pessoal de Saúde/psicologia , Comunicação
20.
Glob Health Action ; 17(1): 2370097, 2024 Dec 31.
Artigo em Inglês | MEDLINE | ID: mdl-38916612

RESUMO

BACKGROUND: Investing in midwives educated according to international standards is crucial for achieving Sustainable Development Goals in maternal and newborn health. Applying a person-centred care approach and using simulation-based learning to improve the learning experience for midwifery students may enhance the quality of childbirth care. This protocol describes a study evaluating the implementation of person-centred approach and simulation-based learning in childbirth as part of a midwifery education programme at the Evangelical University in Africa, DRC. METHODS: The research will be exploratory and guided by an implementation research framework. Ethical approval has been obtained. Facilitators working at the programme's five clinical practice sites will be trained in: 1) Introducing person-centred childbirth care using a training programme called'Mutual Meetings'; and 2) integrating simulation-based learning, specifically by using the three courses: Essential Care of Labor, Bleeding after Birth, and Vacuum Extraction. Data will include interviews with midwifery students, facilitators and clinical preceptors, and maternal and neonatal outcomes from birth registers. DISCUSSION: By integrating a validated and culturally adapted person-centred care training programme and simulation-based learning into a midwifery education programme and clinical practice sites, the findings from the study anticipate an improvement in the quality of childbirth care. Training facilitators in these methodologies aim to effectively mitigate maternal and neonatal adverse outcomes. The findings are expected to provide valuable recommendations for governments, policymakers, and healthcare providers in the DRC and beyond, contributing to significant improvements in midwifery education and aligning with global health priorities, including the Sustainable Development Goals. TRIAL REGISTRATION: The study was registered retrospectively with the ISRCTN registry on the 23rd of February 2024. The registration number is: ISRCTN10049855.


Main findings: It is anticipated that the implementation of both person-centred care and simulation-based learning in a midwifery education programme will improve the quality of care in childbirth practice.Added knowledge: The use of facilitators has the potential to enhance the implementation of person-centred care and simulation-based learning in a midwifery education programme, both at campus and in clinic.Global health impact for policy and action: The expected findings could inform global health policy development and practice, promising advancements in midwifery education and consequently enhance the maternal and newborn health outcomes.


Assuntos
Tocologia , Assistência Centrada no Paciente , Humanos , Tocologia/educação , Assistência Centrada no Paciente/organização & administração , República Democrática do Congo , Feminino , Gravidez , Treinamento por Simulação/organização & administração , Treinamento por Simulação/métodos
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