Desire For More Support Research Articles

Exploring and prioritizing content to include in a medication self-management toolkit for persons with spinal cord injury/dysfunction: A concept mapping approach.

Adults with spinal cord injury/dysfunction (SCI/D) face challenges with medications they take to manage their secondary conditions (e.g., pain, urinary tract infections, autonomic dysreflexia). With many healthcare providers typically involved in care, there are additional challenges with care fragmentation and self-management. Prior research emphasized the desire for more support with medication self-management among this population. To explore what content should be included in a medication self-management resource (i.e., toolkit) for adults with SCI/D, as well as considerations for delivery from the perspectives of adults with SCI/D, caregivers, healthcare providers, and representatives from community organizations. A concept mapping study was conducted. Participants took part in one or more of three activities: brainstorming; sorting and rating; and mapping. Participants generated ideas about the content to include in a medication self-management toolkit. Participants sorted the statements into conceptual piles and assigned a name to each. All statements were rated on a five-point Likert-type scale on importance and realistic to include in the toolkit. Participants decided on the final cluster map, rearranged statements, and assigned a name to each cluster to create visual representations of the data. Forty-four participants took part in this study. The final map contained eight clusters: 1) information-sharing and communication; 2) healthcare provider interactions and involvement; 3) peer and community connections; 4) supports and services for accessing prescription medications and medication information; 5) information on non-prescription medication and medication supplies; 6) safety and lifestyle considerations; 7) general medication information; and 8) practical information and strategies related to medication-taking. Safety and lifestyle considerations was rated as the most important and realistic to include in the toolkit. Given the limited tools to help adults with SCI/D with managing their medications, there is great potential to better support this population across all areas of medication self-management.

Assessment of Clinical Toxicological Resources in Countries Belonging to the World Health Organization's Regional Office of the Eastern Mediterranean.

Poison Centers are vital to prevent and manage exposures to chemicals, toxins, and ionizing radiation. However, many countries still lack sufficient poison information center services. Within the World Health Organization's Eastern Mediterranean Regional Office (EMRO) region, we were not able to identify a formal assessment of its toxicological resources. We sought to assess the clinical toxicological resources in the EMRO region and the attitudes, needs, andperspective of the workforce in thatregion. METHODS: This was a two part survey study. First, wedeveloped a poison center questionnaire and scoring system based on the World Health Organization's Guidelines for Establishing a Poison Center; thisinstrument wasadministeredby phone to poison center directors and faculty in the EMROregion. Questions assessed for the presence or absence of important poison center capabilities listed in the WHO guidelines, and points were assigned based on response. Secondly, we administered an electronicworkforce survey to clinical toxicology professionals in the region; participanteligibility for the workforce survey was based on themembership roster ofMENATOX. Out of 22 EMRO countries, 16 countries have an established poison center, and 14 of 16 participated in the poison center survey. The results reflected a wide variability in capabilities amongcountries. Areas such as call centers, clinical toxicology units, laboratory services, and data management were relatively lacking while some other areas including toxicovigilance, chemical incidents and emergencies, antidotes/antivenoms, poisoning information sources, and the availability of free services were relatively stronger.Twenty-seven out of 32 workforce respondents were physicians. Results from that survey highlighted a desire for more support from government and better compensation. Our studyidentified areas of need for the EMRO region.The poison center survey results reflect large disparities amongcountries with some areas being stronger than others. The workforce survey highlighted issues such as compensation and government recognition. Overall, a formal assessment of individual poison centers can provide benchmarks to drive improvement of services, but further research is needed to identify and characterize country-specific needs.

Physical education pre-service teachers’ perceptions of learning about the spectrum of teaching styles and its role in their pedagogical awareness and practice

The purpose of this study was to examine physical education pre-service teachers’ (PSTs’) beliefs about the usefulness of the spectrum of teaching styles (also referred to as The Spectrum; Mosston and Ashworth, 2008 ) and their perceived abilities to use each style. Using a series of foregrounding techniques based on The Spectrum, PSTs’ ( N = 34) experiences with the teaching styles were explored over one academic semester using a mixed methods approach ( Creswell and Plano Clark, 2018 ). The participants completed a pre/post survey (validated instrument) before and after the semester to record their perceptions of each teaching style. All participants answered several open-ended questions and completed a series of video-based lesson reflections, and 15 of the 34 participants were interviewed individually about their experiences. The results reflected significant increases in the PSTs’ perceived ability to use styles A, B, and F. Qualitative themes were: (1) instructional comfortability from early and frequent experiences learning about and using The Spectrum; (2) a heightened desire to utilize styles with K-12 students; (3) a desire for more support in understanding the alignment between style choice and learning objectives; and (4) an interest in knowing how to connect The Spectrum with curriculum models. The results suggest that there is likely a developmental process for PSTs in learning about and applying The Spectrum. A relationship also appears to be present between using The Spectrum in conjunction with models-based practices. Foregrounding PSTs’ learning within The Spectrum can ease planning anxiety more intentionally and effectively, which can in turn increase the pedagogical accountability of PSTs.

Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) survey: Perspectives of adolescent and adult patients, caregivers, and healthcare professionals on the burden of sickle cell disease.

Sickle cell disease (SCD) is an inherited disorder that causes lifelong complications, substantially impacting the physical and emotional well-being of patients and their caregivers. Studies investigating the effects of SCD on quality of life (QOL) are often limited to individual countries, lack SCD-specific QOL questionnaires, and exclude the caregiver experience. The SHAPE survey aimed to broaden the understanding of the global burden of SCD on patients and their caregivers and to capture the viewpoint of healthcare providers (HCPs). A total of 919 patients, 207 caregivers, and 219 HCPs from 10, 9, and 8 countries, respectively, answered a series of closed-ended questions about their experiences with SCD. The symptoms most frequently reported by patients were fatigue/tiredness (84%) and pain/vaso-occlusive crises (71%). Patients' fatigue/tiredness had one of the greatest impacts on both patients' and caregivers' QOL. On average, patients and caregivers reported missing 7.5 days and 5.0 days per month, respectively, of school or work. HCPs reported a need for effective tools to treat fatigue/tiredness and a desire for more support to educate patients on long-term SCD-related health risks. The multifaceted challenges identified using the SHAPE survey highlight the global need to improve both patient and caregiver QOL.

Development and implementation of a novel peer mentoring program for undergraduate nursing students.

Given the dynamic and high-stress environment of nursing education today, the need arose for the development and implementation of a novel peer mentoring program to support undergraduate nursing students. Peer mentoring refers to a network of support in which a more skilled or experienced person serves as a role model for a less skilled person for professional development and personal growth. Peer mentoring provides a support system that encourages self-confidence and increases self-worth for both the mentee and the mentor. The undergraduate student peer mentoring program in a large, Southeastern United States, university-based, 4-year school of nursing was created in response to a desire for more support conveyed by upper-level nursing students. A model was developed whereby each incoming nursing student (Semester 1) would be paired with a senior nursing student (Semesters 3, 4, or 5). This mentoring dyad was then assigned to a faculty mentor who ensured that the mentoring relationship was functioning in accordance with established guidelines and provided support to both the student mentee and the student mentor. The first cohort was comprised of 20 mentoring dyads. Subsequent cohorts have ranged from 20 to 45 mentoring dyads. To date, over 300 nursing students have participated in the undergraduate peer mentoring program. Based on feedback from student evaluation surveys, both mentors and mentees appreciate and find value in the program. Approximately 93% of student mentors indicated that they would have appreciated such a program when they were first semester nursing students. Some of the challenges of navigating nursing programs are not related to lack of academic aptitude. Rather, other challenges, including lack of social support and soft skills needed to successfully complete the first and second semesters of nursing school. These are critical challenges that a peer mentor could help to meet.

Digitalisation in Craft Enterprises: Perceived Technostress, Readiness for Prevention and Countermeasures-A Qualitative Study.

Introduction: Digital technologies are increasingly used in the craft sector. Innovative technologies have several benefits for businesses but working with them can also induce negative feelings and stress. Data are lacking on perceived stress as well as the resulting strain and effects on health. However, information is needed about the principles of healthy working conditions in the context of digitalisation in the craft sector. To identify targeted starting points for preventive interventions to reduce technostress, we studied the perception of managers and employees of craft enterprises about digitalisation. Method: 26 guideline-based interviews were conducted with managers and employees in the craft sector to assess their understanding of digitalisation and the perceived effects on their health. The data analysis was based on a structured qualitative content analysis. Results: In the administrative area, digitalisation is perceived as simplifying work, as information, for example, becomes more easily accessible. The actual craft work, however, is perceived as more psychologically stressful, e.g., due to technologically more complex heating systems. Likewise, an increased stress experience is described in connection with constant accessibility and workplace surveillance. To reduce the stress experience, clear prevention wishes such as digital breaks or more participation in decisions about digital technologies are stated. Conclusion: Managers and employees in craft enterprises experience increasing psychological strain due to technostress. However, there is a willingness to take preventive interventions and a desire for more support in creating healthy working conditions in the context of digitalisation.

Perspectives on Specific Carbohydrate Diet Education from Inflammatory Bowel Disease Patients and Caregivers: A Needs Assessment.

The specific carbohydrate diet (SCD) has potential health benefits for inflammatory bowel disease (IBD); however, adherence is challenging. Through an online needs assessment survey, this study explored the perspectives of patients and caregivers using the SCD to manage IBD to determine barriers, knowledge gaps, and desired areas for further learning about the SCD. Inclusion criteria included patients with IBD or their caregivers who had experience with the SCD. Of the 208 participants, 87% of participants were female with a mean age of 46 years. Fifty-seven percent had never received SCD training before starting the diet. Participants favored more education on several topics within the SCD and identified one-on-one sessions as the preferred learning modality. Barriers identified were initial steep learning curve, time commitment, and a desire for more support from healthcare professionals. This needs assessment survey highlights the gaps in educational priorities for patients on the SCD.

Online safety experiences of autistic young people: An Interpretative Phenomenological Analysis

BackgroundMany autistic young people use online devices for social connection and to share interests. However, there is limited research regarding autistic online safety behaviours. Compared with non-autistic children, parental surveys have indicated that autistic young people are less likely to block people and/or online sites. To date, no research has explored autistic young people’s perceptions of their online safety experiences. This qualitative research explored autistic young people’s experiences of communicating with others online, as well as their online safety experiences. MethodSemi-structured interviews were conducted with 14 autistic young people aged 11–17 years (M = 14.0, SD = 2.2), including 8 males (M = 13.9, SD = 2.1) and 6 females (M = 14.5, SD = 2.5). These were conducted face to face (n = 1), phone call (n = 2), or via Skype (n = 8) or live web chat (n = 3). Questions explored factors relating to autistic young people’s online safety experiences. ResultsInterpretative Phenomenological Analysis was used to analyse the data. In line with previous studies, autistic young people reported being victims of cyberbullying. Young autistic females reported being subject to online sexual harassment. While participants’ online experiences varied, there were commonalities, including a desire for more support to block online comments and/or individuals. ConclusionsOur results support previous findings that autistic young people are subject to online harassment and are not confident blocking unwanted contact from others online. Future interventions will be more readily accepted and ecologically valid if they address the unique needs of autistic young people.

Building Families Through Healthcare: Experiences of Lesbians Using Reproductive Services

The use of assisted human reproduction (AHR) represents a meaningful and important life event for lesbians wishing to create biologically related families. Despite increasing numbers of lesbians utilizing AHR services, barriers to access persist. This qualitative study investigated the experiences of lesbians and their interactions with reproductive services in Ontario, Canada, where limited public funding is available for all AHR patients and where the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community makes up to 30% of clientele. Eleven semi-structured interviews were conducted, and findings revealed a wide range of experiences. Lesbian patients expressed a desire for more support from their care providers in navigating a complex and costly medical journey through a system largely designed for the needs of heterosexual patients. Additionally, private fertility clinics, as the environment for accessing publicly funded services, were felt to contribute pressure to pay out-of-pocket for add-on medical procedures. To improve the quality of care, participants recommended providing more high-level information on the medical journey and taking an individual approach with lesbian patients, in particular, assuming a patient has sufficient fertility until proven otherwise.

Approaches to Identification and Instruction for Students with Significant Cognitive Disabilities Who Are English Learners

Research is needed to better understand the academic instruction needs of students with significant cognitive disabilities who are English learners and the classroom practices of their teachers. In this qualitative study, we interviewed 10 teachers to learn how they identify and meet the unique needs of this student subpopulation. Our findings suggest that teachers generally do not view disability- and language-related needs as separate and that approaches to instruction tend to follow those perceptions. Some expressed a desire for more support from language professionals in the classroom, whereas others thought their special education classrooms adequately meet student language development needs. Finally, although the teachers we interviewed went to great lengths to engage families in supporting instruction, some reported dissatisfaction with and barriers to those relationships. We discuss our findings in light of the current literature, the study’s limitations, and implications for future research and practice.

First 1000 days: New Zealand Mothers' perceptions of early life nutrition resources.

Research into associations between early life nutritional exposures and vulnerability to adult non-communicable disease (NCD) highlights the importance of maternal diet. A booklet outlining evidence-based dietary guidelines for the first 1000 days of life was first published in 2016 by early life nutrition experts for distribution to pregnant women in Australia and New Zealand. First-time New Zealand mothers' (n=9) perceptions of the booklet and its relevance for the future health of their child were explored via semi-structured focus groups and interviews. Recruitment took place via social media channels and antenatal classes around Auckland. Three major themes were identified using thematic analysis: 1. A difference in the ways mothers related to the booklet depending on their apparent level of health literacy and communication preferences; 2. A tendency for women to outsource decision-making to nutrition 'rules', rather than interpreting information to suit personal circumstances; 3. Intense pressure to comply, resulting in feelings of shame or guilt when the 'rules' were not followed. In this study, first-time mums expressed feeling under pressure to 'get it right' and identified a desire for more support from healthcare providers and society. Nutrition education is essential; however, a booklet should provide a starting point for conversation rather than a stand-alone list of recommendations. Further exploration is needed to develop a resource that can be used by health professionals working alongside women and their partners to support healthy child development.

Needs and Requirements in the Designing of Mobile Interventions for Patients With Peripheral Arterial Disease: Questionnaire Study

BackgroundThe development of mobile interventions for noncommunicable diseases has increased in recent years. However, there is a dearth of apps for patients with peripheral arterial disease (PAD), who frequently have an impaired ability to walk.ObjectiveUsing a patient-centered approach for the development of mobile interventions, we aim to describe the needs and requirements of patients with PAD regarding the overall care situation and the use of mobile interventions to perform supervised exercise therapy (SET).MethodsA questionnaire survey was conducted in addition to a clinical examination at the vascular outpatient clinic of the West-German Heart and Vascular Center of the University Clinic Essen in Germany. Patients with diagnosed PAD were asked to answer questions on sociodemographic characteristics, PAD-related need for support, satisfaction with their health care situation, smartphone and app use, and requirements for the design of mobile interventions to support SET.ResultsOverall, a need for better support of patients with diagnosed PAD was identified. In total, 59.2% (n=180) expressed their desire for more support for their disease. Patients (n=304) had a mean age of 67 years and half of them (n=157, 51.6%) were smartphone users. We noted an interest in smartphone-supported SET, even for people who did not currently use a smartphone. “Information,” “feedback,” “choosing goals,” and “interaction with physicians and therapists” were rated the most relevant components of a potential app.ConclusionsA need for the support of patients with PAD was determined. This was particularly evident with regard to disease literacy and the performance of SET. Based on a detailed description of patient characteristics, proposals for the design of mobile interventions adapted to the needs and requirements of patients can be derived.

Reconsidering perfect: a qualitative study of the experiences of internet-based cognitive behaviour therapy for perfectionism.

Internet-based cognitive behaviour therapy (ICBT) is a promising format for treating different psychiatric disorders. In addition, several clinical trials have found positive results when using it to target transdiagnostic processes, such as perfectionism. However, few qualitative investigations have been conducted on the experiences of clients undergoing such treatments. In the current study, clients completing 12-week guided ICBT for perfectionism responded to open-ended questions at post-treatment. In total, 30 out of 62 (48.4%) described their impressions of its content and the support provided by their guide. The results were analysed qualitatively using thematic analysis. Five themes were found in the responses: Learning how to do things differently, Noticing the positives, Feeling safe to be honest, A comfortable treatment format and Barriers to treatment. The results suggest that many clients were able to achieve a change in perspective in relation to their perfectionism and started facing their fears. They were also able to report the benefits of doing things differently as part of treatment, such as an improvement in their interpersonal relationships. Most clients were also positive about the treatment format, enjoying its flexibility and the encouragement offered by their therapist. However, obstacles such as conflicting commitments, personal difficulties, time-consuming and comprehensive treatment modules, and a desire for more support were brought up by some, suggesting that there are aspects that could be considered in the future.

The Internalization of Social Stigma Among Minor-Attracted Persons: Implications for Treatment

In this article, we sought to build on existing stigmatization research by examining the extent to which internalized stigmatization (i.e., the personal adoption and incorporation of social views, operationalized as thought suppression—an avoidant coping strategy—and low psychological well-being) among minor-attracted persons (MAPs) may impact upon help-seeking behaviors and their avoidance of children. We adopted a cross-sectional anonymous survey design to recruit a sample of self-identified MAPs (N = 183) from prominent online support fora. We found that increased levels of suppression and lower levels of psychological well-being were associated with lower levels of hope about the future, but higher levels of both shame and guilt about having a sexual interest in minors. Thought suppression was not significantly associated with outcomes related to help-seeking behaviors, but did significantly predict higher rates of actively avoiding children, even after controlling for psychological well-being and other emotional variables. Independently, lower levels of self-reported psychological well-being were associated with a desire for more support and higher rates of actively avoiding children. We explore the potential implications of our data in relation to treating and supporting MAPs within the community, increasing their well-being, and encouraging help-seeking behavior.

Patient Perspectives About Follow-Up Care and Weight Regain Following Sleeve Gastrectomy.

Weight regain following sleeve gastrectomy is an increasingly recognised and important problem. Similar to other centres, we have noticed an association between the onset of weight regain and discharge from the bariatric service. We aimed to elucidate this further from the patient perspective. Patients at least 2years from sleeve gastrectomy, who had experienced weight regain, were invited to participate in a focus group discussion. Participants were asked to complete a demographic survey and discussions were audio-recorded. Transcripts underwent content analysis using an inductive approach. Thirty-eight participants participated in one of seven focus group discussions. The majority of participants were female, European and satisfied with the surgery and follow-up care. Participants described positive and negative aspects of the surgery, their follow-up care and causes of weight regain. Important emergent themes included the desire for more support, that is delivered within the overarching principles of providing individualised, specialised care by providers that maintain good rapport and assist in maintaining motivation. Furthermore, this follow-up support may be delivered in non-traditional ways rather than conventional face-to-face consultations. Explorative focus group discussions in a group of patients who had regained weight following sleeve gastrectomy revealed a desire for more support after discharge from the bariatric service.

Unmet Needs of Patients Feeling Severely Affected by Multiple Sclerosis in Germany: A Qualitative Study

The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general. The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS. The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients self-reporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis. Unmet needs were identified in the main categories "support of family and friends," "health care services," "managing everyday life," and "maintaining biographical continuity." Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated. To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professional-patient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support.

Anime-zing in North Carolina: Library Views of Anime Fans

The popularity of anime and manga makes anime fans a group of interest to libraries. There are several events in North Carolina where anime fans gather together, and libraries are already involved with these events. This article discusses conventions and summarizes demographics and attitudes of anime fans at the 2008 Animazement convention in the Triangle. Out of 115 respondents, more than half are library card holders and use a library at least once a month. Some sense of library support for anime and manga fans is present, but respondents definitely show a desire for more support.

The importance of context in fostering responsive community systems: Supports for families in systems of care.

The importance of helping families of children with severe emotional disturbances (SED) connect with informal or natural supports-that is, individuals who are part of their ongoing communities and daily lives-has been widely recognized. Utilization of informal supports has thus become a core element within systems of care (SOCs) designed to improve services for children with SED and their families. However, research demonstrates that implementation of wraparound, the key practice approach within SOCs, often does not include involvement of informal supports. Using a measure of social connectedness (SC), developed to augment the instruments used for the SOC national evaluation, this study assessed parents' and caregivers' views of their connections to and support from their community within a SOC. Overall, parents and caregivers reported low levels of support across multiple sources as well as a desire for more support. Greater levels of perceived support related positively to caregiver strain, types of and satisfaction with services received, and views of their communities as supportive and safe. Greater attention to families' contexts and the identification of effective ways to connect families to their communities are recommended.

Relational factors in psychopathological responses to childbirth

Childbirth can represent for women the time of greatest vulnerability experience, often associated with being out of control, loneliness or sadness. One hundred and sixty women who had ‘normal’ births were assessed within 48 hours on potential predictive measures and at 3–6 months post-partum for PTSD. Symptoms of depression, anxiety, perceived and desired support by family members, friends, medical personnel were also assessed. t-Test and chi-square were used to analyze differences between ‘risk group’ and ‘non-risk group’. Few women (1.25%) showed questionnaire responses suggesting clinically significant levels on PTSD; other women (28.75%) reported clinically significant symptoms for at least one subscale. Being at the first delivery experience, together with perceptions of low levels of support from family members and medical personnel, were found to be related to experience of post-traumatic stress symptoms. Anxiety for the child and previous depression are also related to such symptoms. Moreover, anxiety and depression are related to a difficult recognition of the support received, as well as to the desire for more support, in the care of the newborn, from medical professionals.

Hospital Staff and Family Perspectives Regarding Quality of Pediatric Palliative Care

Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up contact. Frequencies were generated for responses to the staff survey. Five interviewers reviewed the families' narratives and identified frequently occurring themes. Staff members reported feeling inexperienced in communicating with patients and families about end of life issues, transition to palliative care, and do not resuscitate status. Families reported distress caused by uncaring delivery of bad news and careless remarks made by staff members. Staff members reported feeling inexperienced in symptom and pain management and described occasions when pain could have been better managed. Families believed pain had been managed as well as possible despite observing their children suffer. Fifty-four percent of staff members reported that adequate support was not provided for those who treat dying children. Staff members and family members stated their desire for more support. Staff members who described their most difficult experiences caring for a dying child referenced personal pain and inadequate support most frequently. Albeit from different perspectives, staff members and family members shared common concerns and experiences regarding pediatric palliative care. These experiences emphasize the need for additional systematic study, improved education and support for staff members, and continued development of more effective and compassionate delivery of pediatric palliative care.