Gender Differences in Family Caregiving. Do female caregivers do more or undertake different tasks?

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.

An exploration of information seeking behavior among persons living with spinal cord injury in Switzerland.

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.

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury.

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.

Hope and therapeutic privilege: time for shared prognosis communication.

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.

Outpatient and community care for preventing pressure injuries in spinal cord injury. A qualitative study of service users' and providers' experience.

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.

Building bridges between doctors and patients: the design and pilot evaluation of a training session in argumentation for chronic pain experts.

BACKGROUND: Shared decision-making requires doctors to be competent in exchanging views with patients to identify the appropriate course of action. In this paper we focus on the potential of a course in argumentation as a promising way to empower doctors in presenting their viewpoints and addressing those of patients. Argumentation is the communication process in which the speaker, through the use of reasons, aims to convince the interlocutor of the acceptability of a viewpoint. The value of argumentation skills for doctors has been addressed in the literature. Yet, there is no research on what a course on argumentation might look like. In this paper, we present the content and format of a training session in argumentation for doctors and discuss some insights gained from a pilot study that examined doctors' perceived strengths and limitations vis-à-vis this training. METHODS: The training session (eight hours) combined different aspects from prominent theories of argumentation and was designed to strengthen doctors' argumentative discussion skills. A convenient, self-selected sample of 17 doctors who were experts in the field of chronic pain participated in the training and evaluated it via a feedback form and semi-structured interviews. RESULTS: The participants found that the training session gave a structure to types of communication they use to interact with their patients, and taught them techniques that can increase their effectiveness. Moreover, it provided tools to help address some of the challenges of modern doctor-patient interactions, including dealing with patients' unrealistic expectations and medically inaccurate beliefs, and reaching agreement when there are differences of opinion. CONCLUSIONS: This study enriches the research in the field of medical education. In line with the findings of studies that explore the value of argumentation in different fields, argumentative discussion skills can be applied by doctors to express their views and to account for the views of patients without patronizing the interaction. In this paper, we provide a basis to reflect on the value of argumentation in enhancing patients' right to autonomy and self-determination in interactions with their doctors.

Living with Gitelman disease: an insight into patients' daily experiences.

BACKGROUND: Gitelman disease presents with musculoskeletal complaints and fatigue. Surprisingly, there is no clear-cut correlation between biochemical abnormalities and symptoms. METHODS: Starting from the hypothesis that the way patients comprehend their illness within their sociocultural frameworks reflects on their way of adapting to it, this study investigated how adult patients experience the disease in everyday life. We conducted a qualitative analysis based on interviews with 12 patients. Interviews were audio recorded, fully transcribed and analyzed using the constant comparative method described by Strauss and Corbin. RESULTS: A typology of the experiences emerged from the data and was tested on each transcript with an explicit search for disconfirming cases. Patients fell into four main groups: (i) those considering Gitelman disease a disabling illness, (ii) those considering it a normalized illness, (iii) those considering it a different normality and (iv) those considering it an episodic disability. Each pattern of experience was characterized by particular (i) ways of interpreting symptoms (ii) ways of managing Gitelman disease in everyday life, (iii) general lifestyles and (iv) risks for the patient's psychosocial life. CONCLUSIONS: These findings suggest that health care providers should take advantage of considering patients' own perception of the disease in order to adjust the care and advice provided.

Coping strategies of family caregivers in spinal cord injury: a qualitative study.

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.

Strengthening Critical Health Literacy for Health Information Appraisal: An Approach from Argumentation Theory.

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.

Toward an optimization of rehabilitation services for persons with spinal cord injury in Mongolia: the perspective of medical doctors.

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.

Delivery Route and the Outcome of Newborn Hearing Screening of Full-Term Neonates Born in a Public Maternal-Infant Hospital in the South of Brazil.

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.

Living situation of family caregivers of persons with spinal cord injury.

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.

Living with spinal cord injury in Mongolia: A qualitative study on perceived environmental barriers.

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.

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland.

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.

Engaging in the prevention of pressure injuries in spinal cord injury: A qualitative study of community-dwelling individuals' different styles of prevention in Switzerland.

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.

Selecting Evidence-Based Content for Inclusion in Self-Management Apps for Pressure Injuries in Individuals With Spinal Cord Injury: Participatory Design Study.

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.

The role of hope for health professionals in rehabilitation: A qualitative study on unfavorable prognosis communication.

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.

Challenges to building and maintaining partnership in the prevention and treatment of pressure injuries in spinal cord injury: a qualitative study of health professionals' views.

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.

Awareness, attitudes, and beliefs about music-induced hearing loss: Towards the development of a health communication strategy to promote safe listening.

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).

What Online User Innovation Communities Can Teach Us about Capturing the Experiences of Patients Living with Chronic Health Conditions. A Scoping Review.

BACKGROUND: In order to adapt to societal changes, healthcare systems need to switch from a disease orientation to a patient-centered approach. Virtual patient networks are a promising tool to favor this switch and much can be learned from the open and user innovation literature where the involvement of online user communities in the innovation process is well-documented. OBJECTIVES: The objectives of this study were 1) to describe the use of online communities as a tool to capture and harness innovative ideas of end users or consumers; and 2) to point to the potential value and challenges of these virtual platforms to function as a tool to inform and promote patient-centered care in the context of chronic health conditions. METHODS: A scoping review was conducted. A total of seven databases were searched for scientific articles published in English between 1995 and 2014. The search strategy was refined through an iterative process. RESULTS: A total of 144 studies were included in the review. Studies were coded inductively according to their research focus to identify groupings of papers. The first set of studies focused on the interplay of factors related to user roles, motivations, and behaviors that shape the innovation process within online communities. Studies of the second set examined the role of firms in online user innovation initiatives, identifying different organizational strategies and challenges. The third set of studies focused on the idea selection process and measures of success with respect to online user innovation initiatives. Finally, the findings from the review are presented in the light of the particularities and challenges discussed in current healthcare research. CONCLUSION: The present paper highlights the potential of virtual patient communities to inform and promote patient-centered care, describes the key challenges involved in this process, and makes recommendations on how to address them.