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1.
BMC Health Serv Res ; 24(1): 730, 2024 Jun 14.
Article in English | MEDLINE | ID: mdl-38877542

ABSTRACT

BACKGROUND: Two out of three family caregivers are female. However, current trends show that men are more likely to undertake caregiving duties, yet female caregivers report a higher burden. This paper analyzed data from long-term family caregivers to determine whether, under similar circumstances, gender differences in caregiving persist. We examined whether the observed gender gap affects caregivers' satisfaction with their health and quality of life. METHODS: We analyze cross-sectional data from family caregivers of persons with spinal cord injury (SCI) in Switzerland. The data provides comprehensive information about the time and type of weekly tasks family caregivers undertake. To determine differences in caregiving related to gender, we balanced the characteristics of the caregiver and the cared-for person using a propensity score kernel matching. With the balanced sample, we estimated how the observed differences in caregiving varied across cohorts using a Poisson regression. RESULTS: Under similar circumstances, male and female caregivers invest similar time in caregiving. This result holds for 21 caregiving tasks, except for household chores, where women spent, on average, four more hours per week than male caregivers. Despite these differences, female caregivers report a quality of life and satisfaction with their health that is similar to that of male caregivers. CONCLUSION: Gender differences in caregiving narrow over time, except for household chores, where female caregivers continue to spend significantly more hours than male caregivers. Measures designed for family caregivers must consider these gender differences, as the support needs of female caregivers can differ greatly from those of male caregivers.


Subject(s)
Caregivers , Quality of Life , Spinal Cord Injuries , Humans , Female , Male , Caregivers/psychology , Caregivers/statistics & numerical data , Cross-Sectional Studies , Middle Aged , Quality of Life/psychology , Sex Factors , Switzerland , Adult , Spinal Cord Injuries/psychology , Aged , Personal Satisfaction
2.
Disabil Rehabil ; 44(2): 243-252, 2022 Jan.
Article in English | MEDLINE | ID: mdl-32449426

ABSTRACT

PURPOSE: To identify the coping strategies used by family caregivers of persons with spinal cord injury (SCI) in Switzerland in order to develop tailored support programs. MATERIALS AND METHODS: Purposive sample of >18 years participants, speaking an official Swiss language fluently, being family caregivers of persons with SCI for at least 4 years, and perceiving either a high or low burden in relation to caregiving. Data were collected through face-to-face semi-structured interviews (N = 22). Thematic analysis was performed. RESULTS: Four main coping strategies were identified: reappraisal, active acceptance, setting limits to the caregiver role, and seeking support. These strategies can be used one at a time or combined, and at different times of a caregiver pathway. Our analysis highlighted that caregivers need skills to implement these strategies (e.g., self-evaluation skills). CONCLUSIONS: Caregivers of persons with SCI develop cognitive coping strategies to make sense of the situation and establish a "new normal" and problem-focused coping strategies to deal with their new tasks and role. These strategies do not seem to be typical only of SCI caregivers. Hence, interventions that worked for caregivers in other fields could be adapted. Rehabilitation centers should systematically integrate programs targeted to caregivers into their offerings.IMPLICATIONS FOR REHABILITATIONHealthcare systems need to develop educational and support measures for both persons with a health condition and their caregivers.Caregivers should become long-term partners in rehabilitation and a regular and structured needs assessment should be offered.Interventions that worked for caregivers in other fields can be adapted to support also caregivers in SCI.Educational and support programs dedicated to caregivers should teach not only how to perform caregiving tasks but also how to balance between responding to the care recipient's needs and their own needs.


Subject(s)
Caregivers , Spinal Cord Injuries , Adaptation, Psychological , Caregivers/psychology , Family/psychology , Humans , Qualitative Research , Rehabilitation Centers , Spinal Cord Injuries/rehabilitation
3.
Int Arch Otorhinolaryngol ; 25(3): e365-e373, 2021 Jul.
Article in English | MEDLINE | ID: mdl-34377169

ABSTRACT

Introduction The newborn hearing screening (NHS) is the most effective strategy for detecting newborns and infants suspected to have hearing loss. Objective To verify possible associations between the route of delivery and the results of the NHS conducted at 3 independent times (24, 36, and 36 hours with a facilitator auricular maneuver [FAM]) in the lives of full-term newborns. Methods A descriptive, observational, prospective study performed with a sample of 462 newborns, with a gestational age ≥ 37 weeks, without risk indicators of hearing loss. The NHS was conducted as a routine element of the facilities, two times: at 24 and 36 hours of life. In the presence of a "failure" in the last test, a new one was immediately performed, following the FAM. Statistic analyses were carried out on the program SPSS version 21.0 (IBM Inc., Armonk, NY, USA). Results Of the 462 newborns assessed, 304 (65.80%) were born by vaginal delivery. There was a statistical significance of "pass" in the NHS for the 24-hour evaluation ( p ≤ 0.001 for a vaginal delivery and p = 0.002 for a cesarean delivery), with the prevalence of the "pass" index being higher when the baby's lifespan was greater. A statistically significant difference was not observed when the NHS results were compared by taking into account the babies' routes of delivery and the different times of life. Conclusion These findings show that full-term babies who were born by cesarean did not show more "failure" in the NHS results, contradicting the hypothesis of the study. Furthermore, to reduce the false-negative rates, regardless of the route of delivery, this assessment should be conducted after the first 24 hours of the newborns' life.

4.
Article in English | MEDLINE | ID: mdl-34201894

ABSTRACT

The overload of health information has been a major challenge during the COVID-19 pandemic. Public health authorities play a primary role in managing this information. However, individuals have to apply critical health literacy to evaluate it. The objective of this paper is to identify targets for strengthening critical health literacy by focusing on the field of argumentation theory. This paper is based on the textual analysis of instances of health information through the lens of argumentation theory. The results show that critical health literacy benefits from: (1) understanding the concept of argument and the supporting reasons, (2) identifying the main argument schemes, and (3) the knowledge and use of the main critical questions to check the soundness of arguments. This study operationalizes the main aspects of critical health literacy. It calls for specific educational and training initiatives in the field. Moreover, it argues in favor of broadening the current educational curricula to empower individuals to engage in informed and quality decision making. Strengthening individuals' critical health literacy involves interventions to empower in argument evaluation. For this purpose, argumentation theory has analytical and normative frameworks that can be adapted within a lay-audience education concept.


Subject(s)
COVID-19 , Health Literacy , Curriculum , Humans , Pandemics , SARS-CoV-2
5.
Arq Bras Cardiol ; 116(3): 516-658, 2021 03.
Article in English, Portuguese | MEDLINE | ID: mdl-33909761
6.
Spinal Cord ; 59(5): 493-503, 2021 May.
Article in English | MEDLINE | ID: mdl-33742117

ABSTRACT

STUDY DESIGN: Qualitative exploratory study. OBJECTIVES: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. SETTING: Caregivers of people with SCI living in the community in Switzerland. METHODS: Data were collected through semi-structured interviews. Thematic analysis was performed. RESULTS: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. CONCLUSIONS: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.


Subject(s)
Spinal Cord Injuries , Adaptation, Physiological , Caregivers , Emotions , Female , Humans , Middle Aged , Qualitative Research , Spinal Cord Injuries/therapy
7.
Barroso, Weimar Kunz Sebba; Rodrigues, Cibele Isaac Saad; Bortolotto, Luiz Aparecido; Mota-Gomes, Marco Antônio; Brandão, Andréa Araujo; Feitosa, Audes Diógenes de Magalhães; Machado, Carlos Alberto; Poli-de-Figueiredo, Carlos Eduardo; Amodeo, Celso; Mion Júnior, Décio; Barbosa, Eduardo Costa Duarte; Nobre, Fernando; Guimarães, Isabel Cristina Britto; Vilela-Martin, José Fernando; Yugar-Toledo, Juan Carlos; Magalhães, Maria Eliane Campos; Neves, Mário Fritsch Toros; Jardim, Paulo César Brandão Veiga; Miranda, Roberto Dischinger; Póvoa, Rui Manuel dos Santos; Fuchs, Sandra C; Alessi, Alexandre; Lucena, Alexandre Jorge Gomes de; Avezum, Alvaro; Sousa, Ana Luiza Lima; Pio-Abreu, Andrea; Sposito, Andrei Carvalho; Pierin, Angela Maria Geraldo; Paiva, Annelise Machado Gomes de; Spinelli, Antonio Carlos de Souza; Nogueira, Armando da Rocha; Dinamarco, Nelson; Eibel, Bruna; Forjaz, Cláudia Lúcia de Moraes; Zanini, Claudia Regina de Oliveira; Souza, Cristiane Bueno de; Souza, Dilma do Socorro Moraes de; Nilson, Eduardo Augusto Fernandes; Costa, Elisa Franco de Assis; Freitas, Elizabete Viana de; Duarte, Elizabeth da Rosa; Muxfeldt, Elizabeth Silaid; Lima Júnior, Emilton; Campana, Erika Maria Gonçalves; Cesarino, Evandro José; Marques, Fabiana; Argenta, Fábio; Consolim-Colombo, Fernanda Marciano; Baptista, Fernanda Spadotto; Almeida, Fernando Antonio de; Borelli, Flávio Antonio de Oliveira; Fuchs, Flávio Danni; Plavnik, Frida Liane; Salles, Gil Fernando; Feitosa, Gilson Soares; Silva, Giovanio Vieira da; Guerra, Grazia Maria; Moreno Júnior, Heitor; Finimundi, Helius Carlos; Back, Isabela de Carlos; Oliveira Filho, João Bosco de; Gemelli, João Roberto; Mill, José Geraldo; Ribeiro, José Marcio; Lotaif, Leda A. Daud; Costa, Lilian Soares da; Magalhães, Lucélia Batista Neves Cunha; Drager, Luciano Ferreira; Martin, Luis Cuadrado; Scala, Luiz César Nazário; Almeida, Madson Q; Gowdak, Marcia Maria Godoy; Klein, Marcia Regina Simas Torres; Malachias, Marcus Vinícius Bolívar; Kuschnir, Maria Cristina Caetano; Pinheiro, Maria Eliete; Borba, Mario Henrique Elesbão de; Moreira Filho, Osni; Passarelli Júnior, Oswaldo; Coelho, Otavio Rizzi; Vitorino, Priscila Valverde de Oliveira; Ribeiro Junior, Renault Mattos; Esporcatte, Roberto; Franco, Roberto; Pedrosa, Rodrigo; Mulinari, Rogerio Andrade; Paula, Rogério Baumgratz de; Okawa, Rogério Toshiro Passos; Rosa, Ronaldo Fernandes; Amaral, Sandra Lia do; Ferreira-Filho, Sebastião R; Kaiser, Sergio Emanuel; Jardim, Thiago de Souza Veiga; Guimarães, Vanildo; Koch, Vera H; Oigman, Wille; Nadruz, Wilson.
Arq. bras. cardiol ; 116(3): 516-658, Mar. 2021. graf, tab
Article in Portuguese | Sec. Est. Saúde SP, CONASS, LILACS, SESSP-IDPCPROD, Sec. Est. Saúde SP | ID: biblio-1248881
8.
Disabil Rehabil ; 43(15): 2200-2212, 2021 07.
Article in English | MEDLINE | ID: mdl-31790290

ABSTRACT

PURPOSE: To explore medical doctors' views on what are barriers in providing rehabilitation services for persons with SCI in Mongolia. METHODS: A qualitative study with semi-structured interviews was conducted with 12 medical doctors. Participants were purposely sampled. The World Health Organization (WHO)'s report International Perspectives on Spinal Cord Injury was chosen as a guide to structure the interviews. The study used inductive thematic analysis. RESULTS: Five barriers in the provision of rehabilitation services were identified: low awareness and limited knowledge regarding SCI and rehabilitation issues, inadequate rehabilitation policies, deficiencies in infrastructure, deficiencies in equipment and medication, and a shortage of well-prepared rehabilitation workforce. CONCLUSIONS: Based on WHO recommendations "Rehabilitation in health systems", this study provides suggestions on how to strengthen rehabilitation services in Mongolia to better respond to the needs of the SCI population. Our findings highlight that a core issue is the lack of awareness among policymakers regarding rehabilitation and its benefits at the micro, meso and macro levels of the health system. Actions are needed at the level of health policies to ensure, for instance, adequate financing and access to the services. Also, synergies between the Ministries of Education and Health can improve the training of the workforce.Implications for rehabilitationEvidence that rehabilitation services contribute to improving health outcomes and cost-effectiveness could raise awareness among Mongolian policymakers and inform their decisions on funding schemes.Health policies in Mongolia should be reformed to remove barriers in the provision of rehabilitation services for persons with complex and chronic health conditions.Rehabilitation services need to be included into the Mongolian health insurance scheme in order to improve the quality and accessibility of rehabilitation services.Synergies between the Ministry of Education and the Ministry of Health in Mongolia are needed to develop training standards for rehabilitation professionals.


Subject(s)
Physicians , Spinal Cord Injuries , Global Health , Health Services Accessibility , Humans , Mongolia , Qualitative Research
9.
Spinal Cord ; 59(4): 452-461, 2021 Apr.
Article in English | MEDLINE | ID: mdl-33204032

ABSTRACT

STUDY DESIGN: Observational study using data from the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017). OBJECTIVES: To examine information seeking of individuals with spinal cord injury (SCI) in Switzerland and its association with personal characteristics, quality of life, satisfaction with health, and healthcare services utilization. SETTING: Community. METHODS: Descriptive statistics were used to describe information needs, information sources, and health literacy of the participants. Linear, logistic, and Poisson regression analyses were used to assess the association of information-related variables with personal characteristics, quality of life, satisfaction with health, and healthcare services utilization. RESULTS: One quarter of the 1294 study participants (24.6%) reported having information needs. Most frequently mentioned were needs for medical information about SCI, complications and comorbidities (30.5%), and information on living with SCI (28.6%). The most often used sources of information were healthcare professionals (72.3%), the Internet (43.2%), and other people living with SCI (40.8%). Almost half of the participants (41.4%) were only somewhat or not at all confident in their ability to find information. Having information needs was associated with suboptimal outcomes. CONCLUSIONS: This study confirms the importance of information for individuals living with SCI. By providing evidence on topics to be addressed and modalities of information delivery, our findings can help institutions in developing information to support individuals living with SCI in their daily activities. Information should cover all aspects of living with SCI, be relevant to and understandable for people of all backgrounds, and be made available online and offline.


Subject(s)
Information Seeking Behavior , Spinal Cord Injuries , Cohort Studies , Cross-Sectional Studies , Humans , Quality of Life , Spinal Cord Injuries/epidemiology , Switzerland/epidemiology
10.
J Rehabil Med ; 52(11): jrm00124, 2020 Dec 07.
Article in English | MEDLINE | ID: mdl-33119123

ABSTRACT

OBJECTIVE: To describe the living situation of family caregivers of persons with spinal cord injury. DESIGN: Cross-sectional questionnaire. SUBJECTS: Primary family caregivers of persons with chronic spinal cord injury in Switzerland. METHODS: Cross-sectional study of family caregivers of persons with spinal cord injury. For comparison, the study population was matched to family care-givers of persons dealing with long-term health conditions in the general population, using a propensity-score based algorithm. RESULTS: A total of 717 family caregivers participat-ed in the survey (35% response rate). Participants were mostly female (72%), mean age 57 years, and had spent approximately 13 years caring for their relative. A mean of 21 h/week was spent providing care and assistance. The vast majority of family care-givers reported coping well with their situation. However, support from public services was deemed inadequate. Compared with family caregivers in the general population, family caregivers of persons with spinal cord injury performed more caring tasks and reported a slightly lower quality of life. CONCLUSION: Family caregivers of persons with spinal cord injury are self-reliant to cope with their situation, but report discontent with public support ser-vices. The healthcare system could provide alternative support measures, such as direct financial compensation.


Subject(s)
Caregivers/standards , Quality of Life/psychology , Spinal Cord Injuries/epidemiology , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Surveys and Questionnaires
11.
J Med Ethics ; 2020 Oct 14.
Article in English | MEDLINE | ID: mdl-33055136

ABSTRACT

Communicating an unfavourable prognosis while maintaining patient hope represents a critical challenge for healthcare professionals (HPs). Duty requires respect for the right to patient autonomy while at the same time not doing harm by causing hopelessness and demoralisation. In some cases, the need for therapeutic privilege is discussed. The primary objectives of this study were to explore HPs' perceptions of hope in the prognosis communication and investigate how they interpret and operationalise key ethical principles. Sixteen qualitative semistructured interviews with HPs from different positions and experience, including doctors and nurses in four different departments (intensive care, oncology, palliative care, rehabilitation), were conducted in the Ticino Cantonal Hospital, Switzerland. The interviews were recorded, transcribed verbatim and analysed using thematic analysis. HPs defined prognosis and patient hope as interdependent concepts related to future perspectives for subjective quality of life. Two main factors allow HPs to maximise the benefits and minimise the harm of their communication: respecting the patient's timing and sharing the patient's wishes. Time is required to reframe needs and expectations. Furthermore, communication needs to be shared by HPs, patients and their relatives to build common awareness and promote a person-centred approach to prognosis. In this process, interprofessional collaboration is key: doctors and nurses are complementary and can together guarantee that patients and relatives receive information in the most appropriate form when they need it. Organisational aspects and the HPs' emotional difficulties, particularly in coping with their own despair, are barriers to effective communication that need further investigation.

12.
JMIR Mhealth Uhealth ; 8(5): e15818, 2020 05 20.
Article in English | MEDLINE | ID: mdl-32432559

ABSTRACT

BACKGROUND: Technological solutions, particularly mobile health (mHealth), have been shown to be potentially viable approaches for sustaining individuals' self-management of chronic health conditions. Theory-based interventions are more successful, as evidence-based information is an essential prerequisite for appropriate self-management. However, several reviews have shown that many existing mobile apps fail to be either theoretically grounded or based on evidence. Although some authors have attempted to address these two issues by focusing on the design and development processes of apps, concrete efforts to systematically select evidence-based content are scant. OBJECTIVE: The objective of this study was to present a procedure for the participatory identification of evidence-based content to ground the development of a self-management app. METHODS: To illustrate the procedure, we focused on the prevention and management of pressure injuries (PIs) in individuals with spinal cord injury (SCI). The procedure involves the following three steps: (1) identification of existing evidence through review and synthesis of existing recommendations on the prevention and self-management of PIs in SCI; (2) a consensus meeting with experts from the field of SCI and individuals with SCI to select the recommendations that are relevant and applicable to community-dwelling individuals in their daily lives; and (3) consolidation of the results of the study. RESULTS: In this case study, at the end of the three-step procedure, the content for an mHealth intervention was selected in the form of 98 recommendations. CONCLUSIONS: This study describes a procedure for the participatory identification and selection of disease-specific evidence and professional best practices to inform self-management interventions. This procedure might be especially useful in cases of complex chronic health conditions, as every recommendation in these cases needs to be evaluated and considered in light of all other self-management requirements. Hence, the agreement of experts and affected individuals is essential to ensure the selection of evidence-based content that is considered to be relevant and applicable.


Subject(s)
Mobile Applications , Pressure Ulcer , Self-Management , Humans , Chronic Disease , Spinal Cord Injuries/therapy , Telemedicine , Pressure Ulcer/prevention & control
13.
Patient Educ Couns ; 103(8): 1531-1537, 2020 08.
Article in English | MEDLINE | ID: mdl-32098740

ABSTRACT

OBJECTIVE: To examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience. METHODS: Nationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed. RESULTS: Health professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers' satisfaction with own health. CONCLUSION: Caregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it. PRACTICE IMPLICATIONS: Building health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.


Subject(s)
Caregivers/psychology , Family/psychology , Health Literacy/statistics & numerical data , Information Seeking Behavior , Adaptation, Psychological , Adolescent , Adult , Aged , Chronic Disease , Cost of Illness , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Spinal Cord Injuries/psychology , Switzerland
14.
Spinal Cord ; 58(8): 882-891, 2020 Aug.
Article in English | MEDLINE | ID: mdl-32103157

ABSTRACT

STUDY DESIGN: Qualitative exploratory study. OBJECTIVES: Pressure injuries (PIs) are a major secondary condition occurring after spinal cord injuries (SCI). Optimization of outpatient and community care may be a promising approach to better support community-dwelling individuals with SCI in preventing PIs. The aim of this study was to examine the experiences of individuals with SCI, family caregivers and health professionals (HPs) in using or providing outpatient and community services for early treatment and prevention of PIs in SCI. SETTING: Switzerland. METHODS: Semi-structured interviews with a sample of Swiss residents community-dwelling individuals with SCI (n = 20), family caregivers (n = 5) and HPs (n = 22) were analysed using thematic analysis. RESULTS: General practitioners (GPs), home care providers, SCI-specialized outpatient clinics and an SCI-specialized nursing service are involved in the prevention and early treatment of PIs. Our findings show that the needs of individuals with SCI are not fully met: outpatient and community care is often fragmented, mono-professional and non-specialized, while persons with SCI and HPs prefer coordinated, inter-professional and specialized services for preventing and treating PIs. Our findings also highlight the challenges faced by HPs in providing care to individuals with SCI in the community. CONCLUSIONS: Although there seems to be a gap in service provision, there is the potential for improvement by better integrating the different providers in a network and structuring their collaborations. Concrete suggestions are: systematizing knowledge transfer to home care providers and GPs; redefining the role of involved HPs and individuals with SCI and reinforcing the role of the SCI-specialized nursing service.


Subject(s)
Ambulatory Care/standards , Attitude of Health Personnel , Community Health Services/standards , Patient Preference , Pressure Ulcer/therapy , Spinal Cord Injuries/therapy , Adult , Caregivers , Female , Humans , Male , Middle Aged , Pressure Ulcer/etiology , Pressure Ulcer/prevention & control , Qualitative Research , Spinal Cord Injuries/complications
15.
J Spinal Cord Med ; 43(4): 518-531, 2020 07.
Article in English | MEDLINE | ID: mdl-30633693

ABSTRACT

Context: Environmental factors play a key role in the lives of individuals with a spinal cord injury (SCI). This study identifies environmental barriers and their impacts on daily lives as perceived by individuals living with SCI in Mongolia. Design: A qualitative study with semi-structured interviews was conducted. A topic guide for the interviews was structured around the components of the International Classification of Functioning, Disability, and Health. Setting: Urban and rural areas of Mongolia. Participants: A purposive sample of 16 persons with traumatic SCI. Interventions: Not applicable. Outcome Measures: Not applicable. Results: Seven categories of environmental barriers were mentioned, such as poor access to the physical environment, absence of wheelchair-friendly transportation, negative societal attitudes, inadequate health and rehabilitation services, lack of access to assistive devices and medicines, limited financial resources for healthcare, and inaccurate categorization of disabilities in laws. These barriers were claimed to have an impact on physical and psychological health, limit activities, and restrict participation in almost all areas of life. Conclusion: This study contributes to the identification of targets for interventions aimed at improving the lived experience of persons with SCI in a low-resource context. The findings reveal that while the Mongolian government already has laws and policies in place to improve access to the physical environment, transportation, assistive devices and employment, much more has to be done in terms of enforcement. Specialized SCI care and rehabilitation services are highly demanded in Mongolia.


Subject(s)
Disabled Persons , Self-Help Devices , Spinal Cord Injuries , Humans , Mongolia/epidemiology , Qualitative Research , Spinal Cord Injuries/epidemiology
16.
J Spinal Cord Med ; 43(2): 247-256, 2020 03.
Article in English | MEDLINE | ID: mdl-30540555

ABSTRACT

Context: Spinal cord injury (SCI) is a complex chronic condition with multiple self-management requirements and a high prevalence of complications. Pressure injuries (PIs) are among the most common ones and represent a frequent reason for re-hospitalization. This study aimed to identify styles of prevention that individuals with SCI adopt to deal with the risk of developing PIs.Design: Qualitative explorative interview study. Data was collected through semi-structured interviews, which were transcribed verbatim and analyzed following the principles of thematic analysis.Setting: Switzerland.Participants: The participants were a purposive sample of community-dwelling Swiss residents with SCI for at least five years.Interventions: Not applicable.Outcome measures: Not applicable.Results: Although all participants (N = 20) showed at least a basic knowledge of prevention of PIs by describing some preventive measures, they had different prevention styles characterized by different behavioral patterns (i.e. complying with all recommended measures, performing only a selection of them or delegating them to others) and different beliefs and attitudes towards prevention.Conclusion: By identifying the style of prevention of an individual, it is possible to develop tailored interventions that have an impact on the factors which seem to play a role in determining the adoption of preventive behaviors (i.e. perceived susceptibility to PIs, attitudes towards prevention, and self-efficacy). Such interventions would constitute a concrete effort to support individuals with SCI during their self-management. Besides alleviating a frequent and disabling medical complication and contributing to an enhanced quality of life, these interventions might also help decrease healthcare costs.


Subject(s)
Independent Living , Pressure Ulcer/prevention & control , Self-Management , Spinal Cord Injuries/complications , Female , Humans , Interviews as Topic , Male , Middle Aged , Pressure Ulcer/etiology , Qualitative Research , Quality of Life , Switzerland
17.
PLoS One ; 14(10): e0224394, 2019.
Article in English | MEDLINE | ID: mdl-31661529

ABSTRACT

BACKGROUND: The communication of prognosis represents an ethical and clinical challenge in medical practice due to the inherent uncertain character of prognostic projections. The literature has stressed that the mode of communicating prognoses has an impact on patients' hope, which is considered to play a major role in adapting to illness and disability. In light of this, this study aims to explore health professionals' (HPs) perceptions of the role of hope in rehabilitation and to examine if and how they use strategies to maintain hope when discussing prognostic information with patients. METHODS: Eleven qualitative semi-structured interviews with a purposive sample of HPs were conducted at two rehabilitation clinics in the Canton of Ticino, Switzerland. The interviews were analyzed using thematic analysis. RESULTS: The HPs perceive hope in rehabilitation as a double-edged sword. Three main strategies were identified to maintain hope while avoiding false hope: 1) giving space for self-evaluation; 2) tailoring the communication of prognostic information; and 3) supporting the patient in dealing with the prognosis. These strategies are particularly suitable when HPs consider that patients might not be ready to accept the prognosis, due to their expectations for recovery. CONCLUSIONS: The strategies identified here support a person-centered approach to the communication of prognosis and are in line with existing protocols for the communication of unfavorable medical information. The findings emphasize the need for strengthening communication and inter-professional collaboration skills of rehabilitation HPs.


Subject(s)
Health Personnel/psychology , Hope/ethics , Rehabilitation/psychology , Adult , Attitude of Health Personnel , Communication , Female , Humans , Interview, Psychological/methods , Male , Middle Aged , Physician-Patient Relations/ethics , Prognosis , Qualitative Research , Self-Assessment , Switzerland
18.
Swiss Med Wkly ; 149: w20086, 2019 06 17.
Article in English | MEDLINE | ID: mdl-31256412

ABSTRACT

AIMS OF THE STUDY: The effective management of spinal cord injury (SCI) requires partnership between people with SCI and health professionals (HPs). This paper identifies HPs’ perceived challenges in building and maintaining this partnership, with a specific focus on how people with SCI and HPs collaborate in the prevention and treatment of pressure injuries (PIs) in SCI. DESIGN: This study has a qualitative and explorative design. Data were collected through semi-structured interviews and analysed following the principles of thematic analysis. POPULATION AND SETTING: The study population consisted of a purposive sample of HPs (n = 26) working in inpatient and outpatient care in Switzerland with experience in the care of people with SCI. RESULTS: The analysis identified three main challenges: defining responsibilities and expectations, negotiating priorities and establishing and strengthening trust and respect. The HPs argue that the prevention of PIs and self-management are mainly the responsibility of the person with SCI. The HPs have, however, the responsibility to empower, guide, and support persons with SCI in self-management by educating and motivating them. CONCLUSION: Building and maintaining a partnership with individuals with SCI to prevent and treat PIs is crucial, but it is not an easy task for HPs. Specific communication skills can help HPs and patients find personalised solutions that take into account the patients’ expertise and preferences. Additionally, the healthcare system must develop solutions that go beyond personal partnership to better integrate the prevention and treatment of PIs into the lifelong self-management of SCI. Assistive technologies, such as mobile technology, might help in this endeavour.


Subject(s)
Cooperative Behavior , Health Personnel/psychology , Pressure Ulcer/prevention & control , Spinal Cord Injuries/complications , Female , Humans , Interviews as Topic , Male , Middle Aged , Qualitative Research , Switzerland
19.
Patient Educ Couns ; 102(8): 1506-1512, 2019 08.
Article in English | MEDLINE | ID: mdl-30935699

ABSTRACT

OBJECTIVE: Worldwide, 1.1 billion young people are at risk of developing hearing loss due to unsafe listening. The World Health Organization plans a global health campaign to promote behavior change. In an effort to develop effective evidence-based interventions, this study identifies modifiable factors that influence listening habits. METHODS: Online survey among 1019 individuals aged 18-35. The questionnaire was based on theories of behavior change. RESULTS: Individuals not contemplating change showed a lack of knowledge, tended not to feel particularly at risk, and did not see the benefits of preventive measures. Conversely, those considering a change perceived more barriers (e.g., lack of information on how to act,). Self-efficacy was shown to play an ambivalent role. CONCLUSION: Four factors that can be influenced by a health communication intervention were identified: risk perception, perceived safe listening level due to a lack of symptoms, knowledge, and perceived benefits and barriers, in particular perceived loss of pleasure. PRACTICE IMPLICATIONS: The first aspects can be influenced through health communication interventions. Influencing the perceived loss of pleasure additionally requires an analysis of competing pressures. To support and not exceedingly burden the individual, we further suggest to address environmental aspects (e.g., policies).


Subject(s)
Attitude to Health , Awareness , Health Communication , Health Promotion/methods , Hearing Loss, Noise-Induced/etiology , Hearing Loss, Noise-Induced/prevention & control , Music , Adolescent , Adult , Female , Humans , Male , Risk Factors , Surveys and Questionnaires
20.
Article in English, Portuguese | LILACS | ID: biblio-1048887

ABSTRACT

Objetivo: Avaliar o perfil de neonatos que realizaram triagem auditiva neonatal (TAN) e suas mães em um hospital público vinculado à Rede Cegonha, no que diz respeito às características sociodemográficas e aos desfechos de saúde. Métodos: Estudo transversal, retrospectivo e documental, baseado em dados de prontuários de um hospital materno-infantil da cidade de Porto Alegre, Rio Grande do Sul. A amostra foi composta por 1.818 díades mãe-bebê, que realizaram TAN no período de maio/2014 a maio/2015. Foram analisados os resultados da TAN e as características clínicas maternas e dos neonatos. Para a análise dos dados, utilizou-se o programa estatístico SPSS, versão 21.0. Resultados: Dos 1.818 neonatos que realizaram a TAN, 359 (19,74%) tinham algum indicador de risco para deficiência auditiva. Houve associação entre falha dos neonatos na TAN e indicadores de risco para deficiência auditiva (presença de HIV congênito, p=0,035; citomegalovírus congênito, p=0,048; e exposição a drogas ototóxicas, p=0,011) e entre ausência de algum indicador de risco para deficiência auditiva com disfunção respiratória (p=0,043) e sepse neonatal (p=0,021). Nos neonatos sem esses indicadores, essa associação aconteceu naqueles cujas mães tiveram infecção de trato urinário na gestação (p=0,015). Conclusão: Verificaram-se associações significativas entre falha na TAN e características maternas e do bebê que não são consideradas como indicadores de risco para deficiência auditiva. (AU)


Subject(s)
Neonatal Screening , Maternal-Child Health Services , Speech, Language and Hearing Sciences , Hearing
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