Support Resources For Patients Research Articles

Facilitating and Preventing Factors of Tracheostomy Patient Care by Home Caregivers: A Qualitative Study

Background: The unstable condition of tracheostomy patients and the lack of support resources for patients and their families during discharge is the biggest challenge, especially for their home and non-professional caregivers. The present study aimed to identify the factors affecting the care of tracheostomy patients provided by home caregivers. Materials and Methods: This qualitative research was conducted from September 2018 to December 2019 using the content analysis method and interviews with nine home caregivers and one professional caregiver in Lorestan Province, Iran. The required data were collected by holding in-depth semi-structured interviews and continued until reaching data saturation. Simultaneously, the gathered data were analyzed using the 5-step approach of Graneheim and Lundman (2004). Results: The results led to the extraction of 2 themes of preventing and facilitating care factors, 7 categories, and 21 subcategories. The categories related to the theme (preventing factors) of patient care challenges included neglecting the caring role of informal caregivers by the healthcare system, interaction challenges, the high pressure of caregiving, and lack of trust. The categories related to the facilitating factors theme were the experience of the care facilitating over time, the intensification of care with the aim of prevention, and hope and inner satisfaction underlying the care. Conclusion: The challenges of the family's lack of readiness to accept the new role, the exhausting nature of caregiving, and the caregivers’ lack of skills, and as a result, the imposition of a burden of caregiving, and the emergence of harmful consequences for them in various dimensions, the existence of non-governmental organizations that aim to continue to care for these patients and support their families seems necessary. With support systems and gaining experience over time, the care transition process is facilitated.

Characterization of online support group resources for patients with dermatologic conditions.

Dermatologic conditions can have significant quality of life effects on patients. The internet is a first-line accessible resource for patients to seek support and community in managing dermatologic diagnoses. The accessibility and content of online support resources for patients with dermatologic conditions is unclear so we sought to characterize these resources. We conducted online searches utilizing incognito Google, Yahoo, and Bing search engines and identified a total of 36 support group resources. 9 links were for single dermatology support groups and 27 links were for databases of support groups for different dermatologic conditions. We tallied number totals and percentages of online support resources and found wide variability of material in terms of the readability of the group websites, as well as content, medium, and hosts of the groups. Furthermore, we observed an imbalance in representation of resources for certain dermatologic conditions as opposed to others, further highlighting the strong need for the creation of easy-to-access support groups for patients across the spectrum of dermatological disease.

32.1 The Impact of COVID-19 on the Mental Health of Black Youth and Available Resources

The participant will: 1) discuss how the pandemic has impacted mental health and suicide rates for Black adolescents; and 2) identify available crisis support resources for patients at risk of suicidal ideation or mental health crisis. The suicide rate has increased by more than 30% in the United States since 1999, and it is now the second leading cause of death among people ages 10 to 24 years. In particular, research has shown that the rate of suicide among Black youth has risen, with Black children between the ages 5 and 12 years now being twice as likely to die by suicide when compared to their White counterparts.

MA05.02 Impact of Covid-19 on Lung Cancer Care and Utilization of Patient Support Resources

The COVID-19 pandemic has caused significant effects on rates of cancer diagnosis, treatment, and accessibility of cancer care (Wu et.al., World J Oncol, 2021). Barriers to seeking timely oncology care may lead to lung cancer patients being diagnosed at later stages or interruption of optimal therapy once diagnosed. This study examines the impact of COVID-19 pandemic on lung cancer care in the GO2 Foundation Care Continuum Centers of Excellence (CCCOE) network and on the utilization of patient support resources provided by the GO2 Foundation.

Sociodemographic Predictors of Patient Age at Time of Cleft Lip and Palate Repair.

To identify the impact of sociodemographic and health variables on the age at which patients undergo cleft lip repair, cleft palate repair, and primary speech evaluation. A retrospective, noninterventional quality assessment, and quality improvement study was designed. This institutional study was performed at Michigan Medicine in Ann Arbor, MI. All patients born between 2011 and 2014 who received surgical cleft repair, excluded those who were adopted (n = 165). The age at which patients undergo cleft lip repair, cleft palate repair, and primary speech evaluation. Cleft lip repair was performed significantly later for patients identifying as Asian (18 weeks, P = .01), patients with Child Protective Services contact (19 weeks, P = .01), patients with a significant comorbidity (14 weeks, P = .02), and patients who underwent preliminary lip adhesion surgery (19 weeks, P < .01). Cleft palate repair was performed significantly later for patients identifying racially as Asian (19 weeks, P = .03) and other (22 weeks, P = .03). Preliminary speech and language evaluation were performed significantly later for patients identifying as black (55 weeks, P = .03) and patients diagnosed with an isolated cleft lip (71 weeks, P < .01). Timing of cleft lip, cleft palate repair, and primary speech and language evaluation are subject to variation which may be predicted by clinically accessible factors. By identifying race, Child Protective Services contact, and care variables as significant predictors of increased patient age at time of intervention, multidisciplinary cleft care teams can proactively allocate patient support resources.

Patient and physician perceptions of disease management in Parkinson's disease: results from a US-based multicenter survey.

Background: Clinical care for patients with Parkinson’s disease (PD) is complex, and disconnect may exist between patient and physician perceptions of treatment, disease awareness, and impact on quality of life (QoL). Relatively few studies have analyzed patient and physician perspectives of disease management concurrently, and even fewer have compared responses between corresponding patients and their physicians. This study aimed to characterize these aspects and identify opportunities to improve alignment.Methods: This cross-sectional study used an online survey and chart review. Participating physicians completed a profiling survey, followed by patient record forms (PRFs) for their next five patients with PD. Patients completed paper questionnaires. PRFs were matched with patient questionnaires, and patient and physician responses compared.Results: Of 107 participating physicians, 70 completed 350 PRFs. Patients completed 71 questionnaires; 66 were matched to PRFs. From a physician perspective, there was alignment between the motor symptoms that were most bothersome for patients and those that were most discussed (physicians felt tremor was most bothersome for most patients [71%]; 77% of physicians included tremor among top three most discussed), but disconnect between the most bothersome and most discussed nonmotor symptoms (physicians felt fatigue was most bothersome for most patients [35%]; cognitive impairment was the most discussed nonmotor symptom, with 52% of physicians including it in top three most discussed). Patients and physicians reported moderate satisfaction with current PD medication. Patients considered form of delivery more important than did physicians. Physicians showed a strong level of awareness of PD’s impact on patient QoL, although validated QoL instruments were not widely used. Physicians were more confident than patients about patients’ awareness of support resources for patients with PD.Conclusion: Nonmotor symptoms, form of medication delivery, and awareness of support services are areas where PD physician and patient alignment could be increased to improve outcomes.

Psychosocial issues in erythropoietic protoporphyria - the perspective of parents, children, and young adults: A qualitative study

Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare photodermatoses, generally presenting in childhood with severe and painful phototoxicity. EPP has been reported to negatively affect quality of life (QoL), but there is limited information on the psychosocial issues faced by patients and families. To address this, an online focus group study was conducted to explore the perspective of parents of children with EPP, and young adults and children with EPP. Five focus groups were conducted in a semi-structured format, with moderator-led discussions exploring the impact on QoL. Three focus groups included parents of children with EPP, one with children aged 10–11 years, and another with young adults aged 24–25 years, for a total of 24 participants. Thematic data analysis showed that parents experience guilt for being unable to protect their children and frustration with the current state of knowledge of EPP. Parents also admitted that the disease can lead to stress within family members which is difficult to manage. Young adults expressed embarrassment over having to explain the disease to others. They reported that the teenage years were the most difficult to navigate; however, they learned to adapt to their disease as they grew older. Children expressed that they had limited understanding of their disease and wished they were told what symptoms to expect by physicians earlier in life. Our findings emphasize the significant impact on QoL for these families and a lack of age appropriate information for children with EPP. These findings can help improve counseling and support resources for patients and caregivers.

Incorporating Social Media into your Support Tool Box: Points to Consider from Genetics-Based Communities.

Patients with newly-described or rare genetic findings are turning to social media to find and connect with others. Blogs, Facebook groups, and Twitter have all been reported as tools for patients to connect with one another. However, the preferences for social media use and privacy among patients, their families, and these communities have not been well characterized. To explore preferences about privacy and membership guidelines, an online survey was administered to two web-based patient registries, Simons Variation in Individuals Project ( www.simonsvipconnect.org ) and GenomeConnect ( www.genomeconnect.org ). Over a three-month period, invitations were sent to 2524 individuals and 103 responses (4%) were received and analyzed. Responses indicate that Facebook is the most popular resource accessed within this sample population (99%). Participants used social media to look for information about their diagnosis or test results (83%), read posts from rare disease groups or organizations (73%), participate in conversations about their diagnosis (67%), and connect with others to find support (58%). Focusing on privacy issues in social media, respondents indicate that membership and access impact the level of comfort in sharing personal or medical information. Nearly 60% of respondents felt uncomfortable sharing photos or medical information within a public Facebook group, whereas only 12% of respondents felt uncomfortable sharing in private group targeted to families alone. Using this preliminary data concerning social media use and privacy, we developed points for genetic counselors to incorporate when discussing available support resources for patients with a new, or rare, genetic diagnosis or genetic test result. Genetic counselors are trained to provide anticipatory guidance to families adapting to new genetic information, and are well-equipped to help patients consider their preferences about using social media as a source of information and support.

Evaluation of Web-Based Ostomy Patient Support Resources.

To evaluate currently available, no-cost, Web-based patient support resources designed for those who have recently undergone ostomy surgery. Descriptive, correlational study using telephone survey. The sample comprised 202 adults who had ostomy surgery within the previous 24 months in 1 of 5 hospitals within a large healthcare organization in the Midwestern United States. Two of the hospitals were academic teaching hospitals, and 3 were community hospitals. The study was divided into 2 phases: (1) gap analysis of 4 Web sites (labeled A-D) based on specific criteria; and (2) telephone survey of individuals with an ostomy. In phase 1, a comprehensive checklist based on best practice standards was developed to conduct the gap analysis. In phase 2, data were collected from 202 participants by trained interviewers via 1-time structured telephone interviews that required approximately 30 minutes to complete. Descriptive analyses were performed, along with correlational analysis of relationships among Web site usage, acceptability and satisfaction, demographic characteristics, and medical history. Gap analysis revealed that Web site D, managed by a patient advocacy group, received the highest total content score of 155/176 (88%) and the highest usability score of 31.7/35 (91%). Two hundred two participants completed the telephone interview, with 96 (48%) reporting that they used the Internet as a source of information. Sixty participants (30%) reported that friends or family member had searched the Internet for ostomy information on their behalf, and 148 (75%) indicated they were confident they could get information about ostomies on the Internet. Of the 90 participants (45%) who reported using the Internet to locate ostomy information, 73 (82%) found the information on the Web easy to understand, 28 (31%) reported being frustrated during their search for information, 24 (27%) indicated it took a lot of effort to get the information they needed, and 39 (43%) were concerned about the quality of the information. Web-based patient support resources may be a cost-effective approach to providing essential ostomy information, self-management training, and support. Additional research is needed to examine the efficacy of Web-based patient support interventions to improve ostomy self-management knowledge, skills, and outcomes for patients.

Evaluation of the Informational Content, Readability and Comprehensibility of Online Health Information on Monogenic Diabetes.

The purpose of this study was to assess the informational content, readability, suitability and comprehensibility of websites offering educational information about monogenic diabetes available to patients. The top 20 results from 15 queries in four search engines were screened. Content analysis was performed by two independent coders. Readability was determined using Flesch-Kincaid grade level (FKGL) and Simplified Measure of Goobledygook (SMOG). The Comprehensibility Assessment of Materials (SAM+CAM) scale was utilized to evaluate website suitability and comprehensibility. Only 2% (N=29) of 1200 screened websites met inclusion criteria. Content analysis showed that 16 websites presented information on at least the most common forms of MODY (1, 2 and 3), four addressed the utility of genetic counseling, and none included support resources for patients. All websites exceeded the consensus readability level (6th grade) as assessed by FKGL (10.1 grade) and SMOG (12.8±1.5 grades). Although the majority (N=20) of websites had an overall "adequate" to "superior" quality score (SAM+CAM score>= 40%), more than one-third scored "not suitable" in categories of content, literacy demand, graphics, and learning motivation. The online educational resources for monogenic diabetes have a high readability level and require improvement in ease of use and comprehensibility for patients with diabetes.

Benefits of Peer Support in Online Japanese Breast Cancer Communities: Differences Between Lurkers and Posters

BackgroundWeb 2.0 has improved interactions among peers on the Internet, especially for the many online patient communities that have emerged over the past decades. Online communities are said to be particularly beneficial peer support resources for patients with breast cancer. However, most studies of online patient communities have focused on those members who post actively (posters), even though there are many members who participate without posting (lurkers). In addition, little attention has been paid to the usage of online communities among non-English-speaking patients.ObjectiveThe present study explored the differences in peer support received by lurkers and posters in online breast cancer communities. It also examined the effects of such support on both groups’ mental health.MethodsWe conducted an exploratory, descriptive, cross-sectional, Web-based survey among members of four Japanese online breast cancer communities. In an online questionnaire, we asked questions regarding sociodemographics, disease-related characteristics, mental health, participation in online communities, and peer support received from those communities.ResultsOf the 465 people who accessed the questionnaire, 253 completed it. Of the respondents, 113/220 (51.4%) were lurkers. There was no significant difference between lurkers and posters with regard to sociodemographic variables. About half of the posters had been given a diagnosis of breast cancer less than a year previously, which was a significantly shorter period than that of the lurkers (P = .02). The 5 support functions extracted by factor analysis were the same for both posters and lurkers. These were emotional support/helper therapy, emotional expression, conflict, advice, and insight/universality. When the support scores were calculated, insight/universality scored highest for both posters and lurkers, with scores that were not significantly different between the two groups. Among the 5 support scores, emotional support/helper therapy and emotional expression were significantly higher among posters. For posters, emotional support/helper therapy and advice were negatively correlated with the anxiety subscale of the Hospital Anxiety and Depression Scale. Emotional expression, advice, and insight/universality were negatively correlated with the anxiety subscale for lurkers.ConclusionWe found that posters felt they received more benefits from online communities than lurkers did, including emotional support, helping other patients, and expressing their emotions. Yet even lurkers were found to gain a certain amount of peer support through online communities, especially with regard to advice and insight/universality. The results demonstrate that participation in online communities—even as a lurker—may be beneficial to breast cancer patients’ mental health.

Inherited Thrombophilia: Key Points for Genetic Counseling

With the evolution of medical genetics to focus on highly prevalent, multifactorial conditions, it is inevitable that genetic counselors will be called upon to participate in the evaluation and counseling of individuals with inherited thrombophilia. The purpose of this review is to educate the genetic counselor on key issues related to risk assessment and genetic counseling for hereditary thrombophilia. The information contained in this document is derived from an extensive review of the literature, as well as the author's personal expertise. Upon completion of this review, the genetic counselor will be able to: a) describe inherited and acquired risk factors for thrombosis, b) collect and interpret personal and family histories to assess risk related to hereditary thrombophilia, c) discuss the potential advantages and disadvantages of thrombophilia testing, including psychosocial aspects and implications for medical management, and d) identify educational and support resources for patients and families.

The experiences of loneliness, depression, and social support of Turkish patients with continuous ambulatory peritoneal dialysis and their caregivers

The aim of the study was to examine the relationship between loneliness, depression and social support of Turkish patients with continuous ambulatory peritoneal dialysis and their caregivers. By altering the lifestyle of the patient and family or caregiver, chronic illness and continuous ambulatory peritoneal dialysis can create loneliness and depression. Perceived social support may facilitate coping with illness. Descriptive correlational design was used. Data were collected by using the UCLA loneliness scale, the Beck's depression scale and the perceived social support from family and friends scales and demographic data form. A total of 130 subjects including 65 patients with continuous ambulatory peritoneal dialysis and 65 caregivers took part in this study. The mean ages of the patients and caregivers were similar (44.69 +/- 17.22 and 43.90 +/- 8.52 years respectively). Scores of loneliness and depression were below cut-off scores in both groups. However, scores of the loneliness of patients were higher than that of the caregivers. Perceived social support from family and friend were above cut-off scores in both groups and it was different for patients and caregivers. The results of this study indicate that Turkish patients with continuous ambulatory peritoneal dialysis and their caregivers did not experience loneliness and depression. Results of the study suggest that the nurses need to be aware of patients' and caregivers' psychological reactions to continuous ambulatory peritoneal dialysis, which may be expressed in feelings of loneliness and depression, and employ social support resources for patients with peritoneal dialysis and caregivers to cope with their illness and to adapt lifestyle changes.

An interdisciplinary approach to the provision of patient support resources across the oncology care continuum: description of a performance improvement project.

Cancer survival has improved, and more attention is now being focused on quality of life. Quality-of-life issues include the physical, psychological, social, spiritual, and financial aspects of caring. Because patient support services can play an important role in helping patients cope with their disease, they are critical to patients with cancer and their families. This article describes the methods used to address the need for patient support resources and identifies the process for identifying and evaluating existing resources and developing additional ones. The project goal was to streamline patient care access across the oncology care continuum from prevention, diagnosis, and treatment to end of life in ambulatory, hospital, and hospice settings.

Electronic karyotype transmission

The Internet offers a wealth of resources for clinical geneticists. Literally millions of sources of specialized information, search engines, listserves, patient support resources, and online conferencing are available and enhance knowledge, efficiency, and patient care. For the clinical cytogeneticist, internet transmission of high resolution karyotypes and FISH images provides another valuable electronic tool. Pictures can be downloaded from an imaging system onto a floppy disk and e-mailed after removal of patient identifiers. They can be viewed with a simple graphics program and the results quickly reported via return email or telephone. This remote case review by the laboratory director or a designee solves the majority of laboratory coverage problems and maintains turnaround time and efficiency. In addition it provides immediate karyotypes or FISH images when consultation is needed. Emailing of images allows sharing of data among colleaques regardless of differences in computerized image will require microscope the few drawback