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Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field.
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Atención Dirigida al Paciente , Humanos , Suecia , Anciano , Prestación Integrada de Atención de Salud/organización & administración , Servicios de Salud para Ancianos/organización & administraciónRESUMEN
BACKGROUND: Postoperative pain management in lumbar spine surgery care remains a challenge. The aim of this study was to evaluate the impact of a person-centred postoperative pain management intervention programme on lumbar spine surgery patients on postoperative pain, shared decision-making, and satisfaction with postoperative pain management. METHODS: The study was performed with a controlled before-and-after interventional design in an orthopaedic unit at a university hospital. Person-centred pain management for patients undergoing spine surgery was developed in co-creation by a multi-professional team and implemented throughout the care pathway. The usual care group (pre-intervention) served as a comparison to the intervention group. Pain intensity, shared decision-making in pain management, and patient satisfaction with results of pain management, served as patient-reported measures, collected using the International Pain Outcomes questionnaire and analysed using descriptive statistics. RESULTS: The intervention showed no benefit for patients' pain and satisfaction, while shared decision-making in pain management was significant lower in the intervention group than in the conventional group. The per-protocol analysis showed no significant differences between groups. CONCLUSION: The initial assumption of the study, that the implementation of a co-created structured person-centred care pathway would improve patient-reported outcomes, was not confirmed. The periodically low fidelity to the intervention due to organizational constraints (due to sub-optimal organizational conditions and managerial support) may have affected the results.
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Manejo del Dolor , Satisfacción del Paciente , Humanos , Toma de Decisiones Conjunta , Procedimientos Neuroquirúrgicos , Dolor Postoperatorio/terapiaRESUMEN
BACKGROUND: Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support. METHODS: This retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support. RESULTS: Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p < .05) and home help (p < .05) were significantly associated with offer of a needs assessor. Living together was a significant predictor (p < .01) for information and educational support offered to the family. Care setting significantly predicted (p < .01) an offer of information and educational support for the person and family members, as well as contact with a counsellor. CONCLUSION: This study indicates potential formal support shortages for persons with young-onset dementia in some areas of dementia care. Despite equal support across most characteristics, disparities based on care setting highlight the importance of specialised dementia care. Pre-diagnostic support is minimal, indicating challenges for persons with young-onset dementia to access these services before diagnosis. While our study has identified areas in need of improvement, we recommend further research to understand the changing support needs of those with young-onset dementia.
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Demencia , Sistema de Registros , Humanos , Suecia/epidemiología , Estudios Retrospectivos , Masculino , Femenino , Demencia/diagnóstico , Persona de Mediana Edad , Edad de Inicio , Adulto , Apoyo SocialRESUMEN
AIM: To explore how patients with hospital experience construct patient safety, from the identification of a patient safety risk to the decision to file a complaint. BACKGROUND: Patients play an important role in the prevention of adverse events in hospitals, but the ability of patients to act and influence their own safety is still challenged by multiple factors. Understanding how patients perceive risk and act to prevent harm may shed light on how to enhance patients' opportunities to participate in patient safety. DESIGN: The research design of this study is qualitative and exploratory. METHODS: Twelve participants who had experienced Swedish hospital care were interviewed between June 2022 and July 2023. The method of analysis was constructivist grounded theory, focusing on social processes. The COREQ checklist for qualitative research was followed. RESULTS: Four categories were constructed: (1) defining the boundary between one's own capacity and that of the hospital, (2) acting to minimize the impact on one's safety, (3) finding oneself in the hands of healthcare professionals and (4) exploring the boundaries between normality and abnormality of the situation. This process was captured in the core category of navigating the path of least suffering. This illustrated how the participants constructed meaning about patient safety risks and showed that they prevented multiple adverse events. CONCLUSIONS: Provided that participants were able to act independently, they avoided a multitude of adverse events. When they were dependent on healthcare professionals, their safety became more vulnerable. Failure to respond to the participants' concerns could lead to long-term suffering. RELEVANCE TO CLINICAL PRACTICE: By responding immediately to patients' concerns about their safety, healthcare professionals can help prevent avoidable suffering and exhaustive searching for someone in the healthcare system who will take their needs seriously. PATIENT CONTRIBUTION: A member check was performed with the help of one of the participants who read the findings to confirm familiarity.
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Among older adults living in dementia residential care facilities (RCF) behavioral and psychological symptoms (BPSD) are common, affecting the quality of life (QOL) for the residents as well as being challenging for the staff. The person-centered care (PCC) approach addresses BPSD by giving trained staff mandate to focus on the relation and to adapt the encounter and the environment to increase QoL for the person with dementia. The aims with this study were to improve PCC, decrease BPSD and improve QOL among older persons with dementia living in RCFs, and to explore leaders' and healthcare staff's experiences of a PCC intervention. An educational program was implemented at two RCFs. Data was collected through questionnaires, from national quality registries and through focus group interviews. A significant increase in PCC and QOL at three months was seen. However, no significant difference in BPSD was seen. The interviews showed the importance of a trust-based relationship, and support from an active management to improve PCC, as well as changing old patterns and recognising competence among staff. Factors that affect implementation of PCC in RCF are discussed in the article.
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Demencia , Atención Dirigida al Paciente , Calidad de Vida , Humanos , Demencia/psicología , Calidad de Vida/psicología , Femenino , Masculino , Anciano , Encuestas y Cuestionarios , Grupos Focales , Anciano de 80 o más Años , Instituciones Residenciales , Casas de SaludRESUMEN
BACKGROUND: The connection between a weak patient safety culture and adverse patient events is well known, but although most long-term care is provided outside of hospitals, the focus of patient safety culture is most commonly on inpatient care. In Sweden, more than a third of people who receive care at home have been affected by adverse events, with the majority judged to be preventable. The aim of this study was to investigate the patient safety culture among care professionals working in care at home with older people. METHODS: This cross-sectional study used a purposive sample of 66 municipal care workers, health care professionals, and rehabilitation staff from five municipal care units in two districts in western Sweden who provided care at home for older people and had been employed for at least six months. The participants completed the Hospital Survey on Patient Safety Culture (HSOPSC) self-report questionnaire, which assessed aspects of patient safety culture-norms, beliefs, and attitudes. Logistic regression analysis was used to test how the global ratings of Patient safety grade in the care units and Reporting of patient safety events were related to the dimensions of safety culture according to the staff's professions and years of work experience. RESULTS: The most positively rated safety culture dimension was Teamwork within care units (82%), which indicates good cooperation with the closest co-workers. The least positively rated dimensions were Handoffs and transitions among care units (37%) and Management support (37%), which indicate weaknesses in the exchange of patient information across care units and limited support from top-level managers. The global rating of Patient safety grade was associated with Communication openness and Management support (p < 0.01 and p = 0.03, respectively). Staff with less work experience evaluated the Patient safety grade higher than those with more work experience. CONCLUSIONS: This study suggests that improvements are needed in care transitions and in support from top-level managers and that awareness of patient safety should be improved in staff with less work experience. The results also highlight that an open communication climate within the care unit is important for patient safety.
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Servicios de Atención de Salud a Domicilio , Seguridad del Paciente , Humanos , Anciano , Estudios Transversales , Suecia , ComunicaciónRESUMEN
AIM: This study aimed to describe circumstances concerning access for patients and relatives to take part in patient health and safety in a hospital setting. DESIGN: This study used a qualitative descriptive design and was conducted at a Swedish university hospital. METHOD: The 79 complaints reported by patients and relatives included in this study were registered between January 2017 and June 2019. These complaints were classified as concerning access to healthcare services. Data were analysed using qualitative content analysis. RESULTS: The overarching theme, struggling for access as a human being in the healthcare system, encompassed three themes describing patients' and relatives' needs. The three themes were (1) navigating through the healthcare organization, (2) making sense of self and what is going on and (3) being acknowledged as having needs. CONCLUSION: Patients and relatives continuously participate in various ways in healthcare to promote health and prevent patient harm. Our findings contribute important knowledge about the meaning of access from a broad healthcare system perspective. Access was restricted in terms of appropriateness in how patients' needs were met. This restriction of access risked the deterioration of patient health and safety. IMPACT: Patients and relatives play an active part in patient health and safety, although their attempts are sometimes hindered. Restrictions in the appropriateness of access prevented patients and relatives from taking part in patient health and safety, which appeared to mean that they had to adapt and expend effort to the point that it negatively affected their health and everyday life. These findings concern all patients, relatives and healthcare professionals in hospital-associated settings. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.
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Personal de Salud , Promoción de la Salud , Humanos , Pacientes , Hospitales , Atención a la Salud , Investigación CualitativaRESUMEN
BACKGROUND: In children with malignant and severe non-malignant disorders undergoing hematopoietic stem cell transplantation (HSCT), treatment related pain and discomfort are common. Food consumption may become troublesome, making the use of a gastrostomy tube (G-tube) necessary and resulting in complications, why the purpose was to explore pain and discomfort during the transplantation and post-transplantation time. METHODS: This was a mixed methods study where data were collected along the child's total health-care process between 2018 and 2021. Questions with fixed answer options were used, simultaneously, semi-structured interviews were performed. In total, sixteen families participated. Descriptive statistics and content analysis were used to describe analysed data. FINDINGS: Intense pain was common during the post-surgery phase, especially in conjunction with G-tube care, which is why the children needed support to manage the situation. After the post-surgery phase when the skin has healed, most of the children experienced minor to no pain or bodily discomfort, why the G-tube became a well-functioning and supportive tool in daily life. CONCLUSIONS: This study describes variations in and experiences of pain and bodily discomfort in conjunction with G-tube insertion in a unique sample of children who had undergone HSCT. In conclusion, the children's comfort in daily life after the post-surgery phase seemed to be only marginally affected by G-tube insertion. Children with severe non-malignant disorders seemed to experience a higher frequency and intensity of pain and bodily discomfort due to the G-tube than children with malignant disorders. PRACTICE IMPLICATIONS: The paediatric care team need competence in assessing G-tube related pain and awareness that experiences may differ depending on the child's disorder.
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Gastrostomía , Trasplante de Células Madre Hematopoyéticas , Niño , Humanos , Gastrostomía/efectos adversos , Dolor/etiología , Trasplante de Células Madre Hematopoyéticas/efectos adversosRESUMEN
BACKGROUND: Providing safe care is a core competence in healthcare. The concept usually refers to hospitals but, consistent with the increasing importance of integrated care, the provision of safe care needs to be extended to the context of home care, and more research is needed concerning home healthcare providers' perspectives in this context. AIM: The aim of this study was to describe care providers' perceptions of providing safe care for frail older persons living at home. METHOD: A qualitative methodology was chosen. In total, 30 care providers agreed to participate. Data were collected through five focus group interviews and analysed using a phenomenographic approach. RESULTS: Three themes regarding care providers' perceptions of providing safe care emerged from the data: 'safe care is created in the encounter and interaction with the older person', 'safe care requires responsibility from the caregiver' and 'safe care is threatened by insufficient organisational resources'. The findings show that providing safe care is an endeavour that requires a holistic view among the care providers as well as effective collaboration within the team, but insufficient competence or a lack of time can make it difficult to safeguard the psychological and existential needs of older persons. CONCLUSION: Providing safe care in home environments encompasses more than just risk reduction. The findings highlight the importance of establishing and integrating team-based and person-centred care into home care settings. Traditional communication structures for inpatient care also need to be adapted to the cross-disciplinary work in municipalities. Care providers should be given the opportunity to develop and maintain their competences and to prioritise relationship-oriented care.
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Anciano Frágil , Servicios de Atención de Salud a Domicilio , Anciano , Anciano de 80 o más Años , Cuidadores/psicología , Grupos Focales , Humanos , Investigación CualitativaRESUMEN
BACKGROUND: Family members provide the majority of informal care for older adults in Sweden. Nevertheless, by providing a range of assistance, peers often emerge as a central to counter social isolation among older adults. Therefore, there is a need to know more about what informal care provision by older adults to their peers means for different groups of older adults. AIM: This study investigated the types of informal care and support that older adults provide to their peers in Sweden, and how these types of care and support are associated with demographic characteristics and social isolation. We also compared older adults who provide informal care and support with those who do not. METHOD: For this purpose, we used a national online survey named "Involuntary loneliness among senior citizens" answered by 10,044 older adults enrolled in the Swedish Citizen Panel. We adopted a mixed-method design to analyse the survey data, including free-text options (n = 2155) and numerical data. Social isolation was assessed using a score built from the social loneliness items of the UCLA Loneliness Scale. RESULTS: In our population, 21.5% of the older adults were providing informal care and support to their peers. Practical/instrumental help was frequently offered by younger participants (<75 years), men and respondents who were less socially isolated. On a general level, the factors that were positively associated with giving informal care and support to peers were older age, being male, retired, married/living in a relationship, living in an urban area/big city and exhibiting greater isolation. Focusing specifically on social support shows that older participants (>80) and those experiencing less social isolation (score < 24) were more engaged in social activities. CONCLUSION: This paper is unique in exploring the informal peer-caregiver's perceptions of isolation. Data were collected during the COVID-19 pandemic; this highlights the need to recognise informal care and support between older adults and to acknowledge their contributions as an essential component of Swedish civil society, especially during a societal crisis.
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COVID-19 , Pandemias , Anciano , Demografía , Femenino , Humanos , Soledad , Masculino , Atención al Paciente , Aislamiento Social , Apoyo Social , SueciaRESUMEN
This study presents findings of forensic inpatients' experiences of their role in the risk assessment process. Eleven patients, recruited from two forensic psychiatric clinics in Sweden, participated in semi-structured interviews which were analyzed using qualitative content analysis. The analysis of their experiences resulted in the information of three categories: Taking responsibility for one's own situation, in terms of taking responsibility for aspects of one's care, taking charge of the present, emphasizing potential challenges in grasping reality, and being involved and having impact, which concerns feelings of being involved in discussions related to one's care and treatment versus feelings of being an outsider.
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Psiquiatría Forense , Pacientes Internos , Medicina Legal , Humanos , Pacientes Internos/psicología , Boca , Medición de RiesgoRESUMEN
BACKGROUND: Resistance to change and organizational culture are essential factors to consider in change management in health care settings. Implementation of structural change remains a challenge. There is a lack of studies providing information on the impact of implementation processes on the organization. The aim of this study was to describe the impact of implementing a systematic change process concerning postoperative person-centred pain management on resistance to change and organizational culture in an orthopaedic spine surgery unit. METHODS: The study was set in an orthopaedic spine surgery unit at a university hospital. Person-centred bundles of care for postoperative pain management of spine surgery patients were developed in co-creation by a multi-professional expert group and implemented throughout the care pathway. The intervention was underpinned by theories on organizational culture and inspired by principles of person-centred care. Quantitative data were collected using the Resistance to Change Scale and the Organizational Culture Assessment Instrument and analysed using descriptive statistics. RESULTS: The findings showed a low resistance to change decreasing during the study. The organizational culture shifted from a result-oriented to a formalized and structured culture after the implementation. The culture preferred by the staff was team-oriented and participation-focused throughout the study. The discrepancy between the current and preferred cultures remained extensive over time. CONCLUSION: It is challenging to describe the influence of the development and implementation of a postoperative pain management program on organizational culture as well as in terms of resistance to change, in a complex health care setting. In the current study the unit was under organizational strain during the implementation. Albeit, the important discrepancy between the current and preferred organizational culture could imply that structural changes aren't enough when implementing person-centred pain management structures and needs to be combined with relational aspects of change.
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Cultura Organizacional , Manejo del Dolor , Humanos , Clínicas de Dolor , Atención Dirigida al PacienteRESUMEN
PROBLEM: The current knowledge of evidence-based design for adults is not always implemented when hospital buildings are designed. Scientific data are sparse on the effects of hospital design in pediatric settings on health outcomes in children, parents, and staff. The objective of this review is to determine the evidence-based impact of the built environment in pediatric hospital facilities on health outcomes in children, parents, and staff. ELIGIBILITY CRITERIA: A systematic literature review was carried out on the electronic databases Cochrane Library, Embase, Medline and CINAHL from the period of 2008 to 2019. The review considered studies using either quantitative, qualitative, or mixed methodologies. SAMPLE: Out of 1414 reviewed articles the result is based on eight included articles. RESULTS: Two of these eight articles included health outcomes. The other six articles presented results on measures of perceptions and/or satisfaction for children, parents or staff with the built environment when transitioning to a new or renovated facility. These were generally higher for the new compared to the old facility. CONCLUSIONS: Given the small number of studies addressing the question posed in this review, no firm conclusions can be drawn. IMPLICATIONS: The review illustrates the need for more research in the pediatric setting assessing the evidence-based health outcomes of aspects of physical environmental design in pediatric hospitals or units in children, parents and staff.
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Arquitectura y Construcción de Hospitales , Hospitales Pediátricos , Adulto , Entorno Construido , Niño , Práctica Clínica Basada en la Evidencia , Humanos , Evaluación de Resultado en la Atención de Salud , PadresRESUMEN
BACKGROUND: Cancer treatments may induce side effects and cause eating problems. A gastrostomy tube may be required in order to maintain and optimise the child's nutritional needs. Despite the use of a gastrostomy tube, it is important to maintain a natural and attractive mealtime for the child. The Five Aspect Meal Model is age neutral and originally designed to improve restaurant visits. Its five aspects conceptualise what is necessary to ensure a complete meal experience. To date, there is lack of knowledge to guided model development about mealtimes adapted to children and limited knowledge regarding mealtime experiences for children with a gastrostomy tube. AIM: The aim was to investigate whether the Five Aspect Meal Model could be appropriate to be used for children with a gastrostomy tube in caring science and paediatric care. METHODS: The design followed steps retrieved from Renjith and colleagues. Seven interviews were performed with the Five Aspect Meal Model as a base in the interview guide. The transcripts were analysed by using a qualitative directed content analysis with a deductive approach, which finally passed into a more inductive one. FINDINGS: All aspects of the Five Aspect Meal Model were represented in the interviews. There were also experiences related to the gastrostomy tube and the mealtimes that did not fit into any of the five predetermined categories. As a result, the modified version was developed, an adapted prescribing practice model that includes seven aspects, whereof bodily discomfort and time for change and acceptance are specific to children with a gastrostomy tube. CONCLUSION: Based on children and their parent's experiences, the Five Aspect Meal Model has been developed and adapted into a modified version, which includes seven aspects. The modified version seems to be appropriate to use within caring science and paediatric care.
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Gastrostomía , Comidas , Niño , Familia , HumanosRESUMEN
THE PURPOSE: of this study was to explore the content and essential components of implemented person-centered care in the out-of-hospital context for older people (65+). METHOD: A systematic review was conducted, searching for published research in electronic databases: PubMed, CINAHL, Scopus, PsycInfo, Web of Science and Embase between 2017 and 2019. Original studies with both qualitative and quantitative methods were included and assessed according to the quality assessment tools EPHPP and CASP. The review was limited to studies published in English, Swedish, Danish, Norwegian and Spanish. RESULTS: In total, 63 original articles were included from 1772 hits. The results of the final synthesis revealed the following four interrelated themes, which are crucial for implementing person-centered care: (1) Knowing and confirming the patient as a whole person; (2) Co-creating a tailored personal health plan; (3) Inter-professional teamwork and collaboration with and for the older person and his/her relatives; and (4) Building a person-centered foundation. CONCLUSION: Approaching an interpersonal and inter-professional teamwork and consultation with focus on preventive and health promoting actions is a crucial prerequisite to co-create optimal health care practice with and for older people and their relatives in their unique context.
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Atención a la Salud , Autocuidado , Anciano , Femenino , Enfermería Geriátrica , Hospitales , Humanos , Masculino , Noruega , Atención Dirigida al PacienteRESUMEN
AIMS AND OBJECTIVE: To explore and describe healthcare practitioners' experiences of postoperative pain management to patients undergoing planned lumbar spine surgery by identifying the healthcare practitioners' behaviours, attitudes and strategies. BACKGROUND: Poorly managed postoperative pain continues to cause suffering and prolong hospital care and may affect individual and team practitioners' strategies and attitudes. The impact of these strategies and attitudes needs greater understanding. DESIGN: Descriptive qualitative study. METHODS: In-depth interviews were conducted at a university hospital in Sweden during January-March 2016 with 9 healthcare practitioners (ages: 29-61 years; gender: male 3 and female 6; professions: medical doctor 3, registered nurse 3 and physiotherapist 3; professional experience: 1.5 months to 25 years). The interviews were analysed using Braun and Clarke's thematic analysis. The study adhered to the Consolidated Criteria for Reporting Qualitative Research COREQ. RESULTS: The interviews revealed healthcare practitioners' attitudes and strategies. Three themes were identified: (a) Connecting with the person was recognised as the key component in postoperative pain management; (b) Professionalism: a balancing act, accentuated health care practitioners' duality in being both vulnerable and strong in delicate care situations; and (c) Collaboration: being constantly responsive, the necessity for healthcare practitioners to be constantly responsive to their environment. CONCLUSIONS: The findings pinpoint the need for healthcare organisations to build structures enabling practitioners to deliver adequate pain management in acknowledging the practitioners' delicate situation when facing patients in pain. RELEVANCE TO CLINICAL PRACTICE: Given the global need for postoperative pain management, our findings have international relevance. Preconceived expectations on specific pain need to be depicted and postoperative pain taken seriously to protect the patient as well as the healthcare practitioners.
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Actitud del Personal de Salud , Manejo del Dolor/normas , Dolor Postoperatorio/terapia , Adulto , Femenino , Humanos , Vértebras Lumbares/cirugía , Masculino , Persona de Mediana Edad , Manejo del Dolor/psicología , Investigación Cualitativa , SueciaRESUMEN
A multidisciplinary international expert panel was convened to provide input for a proposed decision support tool. This tool will assist health care professionals who are not specialized in incontinence care to assess individuals with urinary and/or fecal incontinence and recommend appropriate person-centered management options for the home care and ambulatory community settings. A targeted literature review was complemented by a series of interviews with experts in continence management, followed by a practitioner survey and rounds of expert opinion. A set of factors for assessment were defined, along with questions created to identify and quantify the factors. In addition, a range of lifestyle intervention, toileting and containment strategies were identified that were appropriate for the decision support tool. Future steps required to progress this work to a functioning tool are described.
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Técnicas de Apoyo para la Decisión , Incontinencia Fecal/terapia , Incontinencia Urinaria/terapia , Actividades Cotidianas , Consenso , Incontinencia Fecal/fisiopatología , Humanos , Atención Dirigida al Paciente/métodos , Autocuidado , Incontinencia Urinaria/fisiopatologíaRESUMEN
BACKGROUND: Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads' needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost-effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. METHODS: In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. DISCUSSION: The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. CONCLUSION: Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia.
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Adaptación Psicológica , Cuidadores/psicología , Demencia/enfermería , Participación del Paciente/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , SueciaRESUMEN
Adverse health care events are a global public health issue despite major efforts, and they have been acknowledged as a complex concern. The aim of this study was to explore the construction of unsafe care using accounts of adverse events concerning the patient, as reported by patients, relatives, and health care professionals. Twenty-nine adverse events reported in an acute care setting in a Swedish university hospital were analyzed through discourse analysis, where the construction of what was considered to be real and true in the descriptions of unsafe care was analyzed. In the written reports about unsafe events, the patient was spoken of in three different ways: (a) the patient as a presentation of physical signs, (b) the patient as suffering and vulnerable, and (c) the patient as unpredictable. When the patient's voice was subordinate to physical signs, this was described as being something that conflicted with patient safety. The conclusion was that the patient's voice might be the only sign available in the early stages of adverse events. Therefore, it is crucial for health care professionals to give importance to the patient's voice to prevent patients from harm and not unilaterally act only upon abnormal physical signs.
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Errores Médicos/prevención & control , Seguridad del Paciente/normas , Gestión de Riesgos/normas , Femenino , Humanos , Pacientes Internos/psicología , Masculino , Monitoreo Fisiológico/normas , Grupo de Atención al Paciente/normas , SueciaRESUMEN
OBJECTIVES: Postoperative pain remains undermanaged in orthopedic surgery. To identify areas of improvement for future structural changes in pain management, patients' experiences of pain and pain management when undergoing elective lumbar spine surgery were explored, using a qualitative method with focus group interviews. SETTING: The study setting was an orthopedic spine surgery department at a University Hospital in Sweden. METHODS: This study consisted of two focus group interviews with patients (n = 6/group, a total of 12 patients) who had undergone lumbar spine surgery 4 days to 5 weeks prior to the focus group interviews. The interviews were semi-structured, and the analysis was performed using qualitative content analysis. RESULTS: The main result of this study revealed that patients' experiences of pain influenced their attitudes and strategies for pain management. Three main categories emerged from the focus group interviews: I. Coping with pain while waiting for surgery; II. Using different pain-relieving strategies after surgery; and III. How organizational structures influence the pain experiences. CONCLUSIONS: In conclusion the results from this study acknowledge that postoperative pain experiences and coping strategies after spine surgery are highly diverse and individual. This calls for staff having a more personalized approach to pain management in order to optimize pain relief, which was stressed as highly valued by the patients.