Initial Feasibility of the "Families Moving Forward Connect" Mobile Health Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Mixed Method Evaluation Within a Systematic User-Centered Design Approach.

BACKGROUND: Fetal alcohol spectrum disorders (FASD) are prevalent neurodevelopmental conditions. Significant barriers prevent family access to FASD-informed care. To improve accessibility, a scalable mobile health intervention for caregivers of children with FASD is under development. The app, called Families Moving Forward (FMF) Connect, is derived from the FMF Program, a parenting intervention tailored for FASD. FMF Connect has 5 components: Learning Modules, Family Forum, Library, Notebook, and Dashboard. OBJECTIVE: This study assesses the feasibility of FMF Connect intervention prototypes. This includes examining app usage data and evaluating user experience to guide further refinements. METHODS: Two rounds of beta-testing were conducted as part of a systematic approach to the development and evaluation of FMF Connect: (1) an iOS prototype was tested with 20 caregivers of children (aged 3-17 years) with FASD and 17 providers for the first round (April-May 2019) and (2) iOS and Android prototypes were tested with 25 caregivers and 1 provider for the second round (November-December 2019). After each 6-week trial, focus groups or individual interviews were completed. Usage analytics and thematic analysis were used to address feasibility objectives. RESULTS: Across beta-test trials, 84% (38/45) of caregivers and 94% (17/18) of providers installed the FMF Connect app. Technological issues were tracked in real time with updates to address problems and expand app functionalities. On use days, caregivers averaged 20 minutes using the app; most of the time was spent watching videos in Learning Modules. Caregiver engagement with the Learning Modules varied across 5 usage pattern tiers. Overall, 67% (30/45) of caregivers posted at least once in the Family Forum. Interviews were completed by 26 caregivers and 16 providers. App evaluations generally did not differ according to usage pattern tier or demographic characteristics. Globally, app users were very positive, with 2.5 times more positive- than negative-coded segments across participants. Positive evaluations emphasized the benefits of accessible information and practical utility of the app. Informational and video content were described as especially valuable to caregivers. A number of affective and social benefits of the app were identified, aligning well with the caregivers' stated motivators for app use. Negative evaluations of user experience generally emphasized technical and navigational aspects. Refinements were made on the basis of feedback during the first beta test, which were positively received during the second round. Participants offered many valuable recommendations for continuing app refinement, which is useful in improving user experience. CONCLUSIONS: The results demonstrate that the FMF Connect intervention is acceptable and feasible for caregivers raising children with FASD. They will guide subsequent app refinement before large-scale randomized testing. This study used a systematic, user-centered design approach for app development and evaluation. The approach used here may illustrate a model that can broadly inform the development of mobile health and digital parenting interventions.

A Mobile Health Intervention for Fetal Alcohol Spectrum Disorders (Families Moving Forward Connect): Development and Qualitative Evaluation of Design and Functionalities.

BACKGROUND: Fetal alcohol spectrum disorders (FASD) affect approximately 2% to 5% of the US population. However, most families are unable to access FASD-informed interventions. Barriers to care include the lack of a knowledgeable and skilled workforce and family-level barriers such as limited financial resources, inability to access childcare, and stigma. As a result, families often try peer-to-peer and self-help support strategies. However, they often take these strategies from disparate sources, which have quite variable intervention quality and empirical support. OBJECTIVE: This study aimed to initiate systematic development and evaluation of a mobile health intervention (app) for caregivers raising children with FASD. Focus groups were conducted to elicit participant perspectives on app design and functionalities to inform further app development. METHODS: The app, called FMF Connect, was derived from the scientifically validated Families Moving Forward (FMF) Program, a clinician-delivered behavioral consultation intervention. FMF Connect was intended for caregiver self-delivery and included five main components: (1) Learning Modules, (2) Family Forum, (3) Library, (4) Notebook, and (5) Dashboard. Focus group methods were used to solicit perspectives from diverse families during the early stages of app development. Questions were asked about interface design, relevance of components and content, and perceived barriers and facilitators of use. A total of 25 caregivers participated in 7 focus groups across 5 US cities. Data were analyzed thematically. RESULTS: Focus group participants were generally enthusiastic about the app interface design and components. Four global positive impression themes emerged, including (1) ease of access, (2) how the app guides and organizes information, (3) connection to other users and information, and (4) ability to share some content with others. Themes arose not only in discussions relating to positive app features but also when participants were asked about motivators for app use. Participants related how these positive global themes could address some system-level barriers, such as limited access to services, feeling isolated, and increased advocacy needs related to the societal lack of FASD knowledge. Participants identified many positive features about individual app components and functionalities. They also communicated potential barriers to use and raised important concerns and considerations relating to several app components. These included recognizability of the app based on the logo, and the balance of following the planned intervention sequence versus obtaining immediate answers. Also mentioned were privacy and dynamics within the Family Forum. CONCLUSIONS: FMF Connect is a promising novel intervention with potential to reach many families in need and reduce significant barriers to care, resulting in a broader public health impact. Study findings will guide further app development both in terms of content and technological advances to optimize intervention effects. FMF Connect app development provides useful directions for other apps aimed at changing parenting practices.

Factors Associated with Family Physician Follow-up 30 Days Post-discharge from a Local Canadian Community Emergency Department.

Introduction Close outpatient follow-up with a specialist or family physician post-discharge from the emergency department (ED) has been shown to increase adherence to antihypertensive medications, decrease mortality in heart failure, and reduce the odds of myocardial infarction or death after ED presentation for chest pain. A Canadian study demonstrated that 21% of patients who left the ED with a new diagnosis of atrial fibrillation, heart failure, or hypertension were not seen by a physician within 30 days. There is a paucity of research investigating why this follow-up does not occur. This study aimed to elucidate factors that are associated with outpatient follow-up by a family physician clinic following discharge from a local Canadian community emergency department. Methods A retrospective chart review of patients rostered to a family physician who presented to the community ED in the past two years was conducted. The primary outcome examined was a documented follow-up visit with any physician at the clinic within 30 days of the index ED visit. Patients aged 18 or older at the time of the initial ED visit were eligible for inclusion in the study. Exclusion criteria were the following: patients aged 17 or younger at the time of the initial ED visit, those who were not fully assessed at ED visit (i.e., left against medical advice), those whose charts corresponding to the ED visit were unable to be found, patients who were admitted to any facility within 30 days of ED visit, and patients who died within 30 days of the ED visit. Variables of interest extracted from the ED chart and clinic electronic medical record were the following: Canadian Triage and Acuity Scale (CTAS) score, documented discharge instructions, age, sex, primary residence distance from the clinic, last documented clinic visit before ED visit, and the date of and presenting complaint of the next clinic visit after the ED visit. Data were collected as continuous and categorical variables. Descriptive statistics were used to show the number and percentages of patients who followed up in clinic. Binomial regression analysis was used to determine if a specific variable was associated with patient follow-up. Inter-rater reliability between data abstractors was calculated using Fleiss Κ. An alpha-value of 0.05 was chosen, and SPSS version 25.0 (IBM Corp., Armonk, NY) was used for all statistical analyses. Results A total of 234 patients out of 1292 patients met inclusion criteria. 53% of patients were female, and the mean age was 50. Seventy-two (31%) received discharge instructions from the ED physician to follow up with their family doctor. In total, 93 of the 234 patients proceeded to have a documented clinic visit within 30 days (40%). 52% (n = 48) of these were women. Receiving specific discharge instructions increased the adjusted odds of follow-up (OR 3.07, 95% CI: 1.64-5.76; P < 0.05). Patients who followed up also tended to have been seen in clinic in the last three months, but this was not statistically significant. Conclusion Receiving specific discharge instructions to follow-up increased the odds that patients followed up with their family physician after discharge from the ED. ED physicians may consider giving explicit instructions to patients to improve monitoring of ongoing clinical issues. More research needs to be conducted on how to improve transitions of care. Countries with different healthcare models may have other barriers to appropriate follow-up.

Self-care in caregivers of children with FASD: How do caregivers care for themselves, and what are the benefits and obstacles for doing so?

BACKGROUND: Caregivers of children with fetal alcohol spectrum disorders (FASD) have elevated levels of stress, which can negatively impact family functioning and caregivers' mental and physical health. Self-care is a critical resource to address caregivers' stress. AIMS: This study describes strategies and obstacles related to self-care reported by caregivers of children with FASD. It also examines how caregivers' perceived confidence in and frequency of self-care is related to stress, parenting attitudes, and family needs. METHODS & PROCEDURES: Forty-six caregivers of children with FASD identified self-care strategies and obstacles and rated their confidence and frequency of self-care. Additional measures of perceived parenting efficacy, stress, family needs, child behavior, and family demographics were administered. Correlation analyses examined associations between self-care and measures of child and family functioning. RESULTS: Self-care strategies and obstacles were varied. Greater reported confidence in self-care was associated with less parental distress and more satisfaction in the parenting role. Frequency of self-care was positively associated with confidence in self-care but not with any other measure of family functioning. CONCLUSIONS: Caregivers use a variety of strategies and face significant obstacles in self-care. Confidence in self-care may be associated with lower stress and greater satisfaction in the parenting role.

Speaking Up for Fundamental Care: the ILC Aalborg Statement.

OBJECTIVE: The International Learning Collaborative (ILC) is an organisation dedicated to understanding why fundamental care, the care required by all patients regardless of clinical condition, fails to be provided in healthcare systems globally. At its 11th annual meeting in 2019, nursing leaders from 11 countries, together with patient representatives, confirmed that patients' fundamental care needs are still being ignored and nurses are still afraid to 'speak up' when these care failures occur. While the ILC's efforts over the past decade have led to increased recognition of the importance of fundamental care, it is not enough. To generate practical, sustainable solutions, we need to substantially rethink fundamental care and its contribution to patient outcomes and experiences, staff well-being, safety and quality, and the economic viability of healthcare systems. KEY ARGUMENTS: We present five propositions for radically transforming fundamental care delivery:Value: fundamental care must be foundational to all caring activities, systems and institutionsTalk: fundamental care must be explicitly articulated in all caring activities, systems and institutions.Do: fundamental care must be explicitly actioned and evaluated in all caring activities, systems and institutions.Own: fundamental care must be owned by each individual who delivers care, works in a system that is responsible for care or works in an institution whose mission is to deliver care. RESEARCH: fundamental care must undergo systematic and high-quality investigations to generate the evidence needed to inform care practices and shape health systems and education curricula. CONCLUSION: For radical transformation within health systems globally, we must move beyond nursing and ensure all members of the healthcare team-educators, students, consumers, clinicians, leaders, researchers, policy-makers and politicians-value, talk, do, own and research fundamental care. It is only through coordinated, collaborative effort that we will, and must, achieve real change.

Non-Offending Minor-Attracted Persons: Professional Practitioners' Views on the Barriers to Seeking and Receiving Their Help.

Individuals who are attracted to minors but have abstained from sexual offending (non-offending minor-attracted persons) are an under-researched, hard-to-reach population. The current study explored professionals' perspectives of the barriers this population faces in seeking and receiving help and how these barriers can be reduced. Twenty professionals read an original vignette and answered a series of questions via an online survey. Using an inductive thematic analysis, the accessibility of treatment and perceived risk of disclosure emerged as the main barriers to seeking and receiving help. To reduce these barriers a number of potential solutions were suggested, including increasing publicity, educating the public, and offering enhanced training to professionals. This research should bolster future efforts to prevent child sexual abuse and contribute to strategies focused on helping non-offending minor-attracted persons manage their attraction in a pro-social way.

Behind prison walls: HIV vulnerability of female Filipino prisoners.

PURPOSE: The imprisoned population is increasing worldwide and is overrepresented in the HIV epidemic. The purpose of this paper is to explore the HIV vulnerability of female Filipinos who are pre-trial prisoners, as the specific needs of imprisoned women are poorly understood and fewer resources are granted to pre-trial detainees, especially in low and middle-income countries (LMICs). DESIGN/METHODOLOGY/APPROACH: This study was based on a Qualitative Descriptive Design. In total, 18 semi-structured interviews were conducted with prisoners and NGO directors. Data were analysed through Framework Analysis, using the individual, social and community categories of the Modified Socio-Ecological Model. FINDINGS: Results from this study suggest that the prison environment and management practices maximise the HIV vulnerability in the sample. This vulnerability is shaped by low HIV knowledge, combined with the existence of multiple social vulnerabilities prior to incarceration. SOCIAL IMPLICATIONS: HIV care in Filipino prisons needs urgent attention from government and international organisations, as it is a major public health and human rights concern. International goals of ending the epidemic by 2030 cannot be reached if efforts are not translated into action within this setting. ORIGINALITY/VALUE: In the Philippines, few studies have addressed this issue and little is known about the conditions of Filipino prisons. This paper aims to fill a gap in literature regarding the vulnerability of imprisoned women in LMICs, which is even more limited in examining pre-trial detention.

Characteristics of chronic pain patients in a rural teaching practice.

OBJECTIVE: To describe the characteristics of chronic noncancer pain (CNCP) patients taking oxycodone or its derivatives in a rural teaching practice. DESIGN: Characteristics of CNCP patients taking oxycodone over a 5-year period (September 2003 to September 2008) were compared with those of patients not taking opioid medications using a retrospective chart audit. SETTING: A rural teaching practice in southwestern Ontario. PARTICIPANTS: A total of 103 patients taking chronic oxycodone therapy for CNCP and a random sample of 104 patients not taking opioid medication. MAIN OUTCOME MEASURES: Number of visits, health problems, sex, and previous history of addiction and mental illness. RESULTS: Patients with CNCP taking oxycodone had significantly more health problems (P < .001), including drug and tobacco addictions. They had more than 3 times as many clinic visits during the same period of time as patients not taking opioid medication (mean of 39.0 vs 12.8 visits, P < .001). CONCLUSION: Patients with CNCP in this rural teaching practice had significantly more health issues (P < .001) and were more likely to have a history of addiction than other patients were. They created more work with significantly more visits over the same period compared with the comparison group.

Disclosure among HIV-positive women: the role of HIV/AIDS support groups in rural Kenya.

Disclosure by people living with HIV or AIDS is critical for HIV prevention and care. However, many women choose not to disclose their HIV status for fear of negative outcomes, such as blame and rejection. The World Health Organization suggests that HIV/AIDS support groups help to encourage women to disclose their status, but little is known about the role of such groups in Kenya. This study used qualitative research methods to gain insight into rural women's experience of disclosing a positive HIV status and it explores opinions about the role of support groups in relation to disclosure. Focus group discussions and semi-structured interviews were conducted with HIV/AIDS support group members and leaders. Thematic analysis showed that the women felt a sense of duty to inform others of their HIV status, particularly in order to prevent HIV transmission and to encourage sexual partners to be tested. There were multiple problems associated with disclosure, and negative outcomes such as blame and rejection were common. Support groups gave the women confidence and provided emotional support, which may have assisted them with coping with the negative outcomes of disclosure. The findings demonstrate that such support may improve women's experience of HIV-status disclosure and possibly even promote disclosure. However, initiatives such as these must protect those who disclose and therefore should take into account the local cultural and economic context.

Needs assessment of undergraduate education in otolaryngology among family medicine residents.

OBJECTIVES: To investigate the adequacy of otolaryngology teaching in undergraduate medical education (UME) and to determine the general level of comfort of family medicine residents in managing and assessing diseases affecting the ears, nose, and throat. DESIGN: Cross-sectional survey. METHODS: A sample of family medicine residents at the University of Western Ontario (N = 68) completed a questionnaire inquiring into their exposure to topics in otolaryngology during their UME. They were also asked to comment on their present comfort with knowledge and skills specific to otolaryngology. RESULTS: Family medicine residents suggest that there is generally little otolaryngology training in UME; 66.7% of respondents who received UME in Canada suggested that they received very little classroom instruction and 75.6% received very little clinical otolaryngology instruction. Residents identified specific otolaryngologic conditions with which they felt particularly uncomfortable. CONCLUSIONS: This study demonstrated that students receive very little exposure to otolaryngology in UME and highlighted specific conditions and procedures that family medicine residents lack confidence in managing and performing.