Assessment of the current implementation and barriers to uptake of the guidelines for the psychosocial care of adults with cancer according to cancer nurses in Australia.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20615-e20615
Author(s):  
Catalina Lawsin ◽  
Kirsty McMillan ◽  
Phyllis Butow ◽  
Jane Turner ◽  
Patsy Yates ◽  
...  
Keyword(s):  
Medical Treatment ◽  
Relaxation Training ◽  
Psychosocial Support ◽  
Psychosocial Care ◽  
Psychosocial Issues ◽  
Care Providers ◽  
Care Coordinator ◽  
Web Based ◽  
Current Implementation ◽  
Cancer Nurses

e20615 Background: The Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (the Guidelines) were launched in 2003 to guide cancer care providers in the assessment of psychosocial issues and provision of evidence-based interventions. Despite multi-faceted Australia-wide dissemination efforts, the current study aimed to be the first to assess current implementation of the Guidelines across and barriers to uptake. Methods: A cross-sectional web-based survey was developed to assess clinical use of recommendations in the Guidelines in relation to the provision of psychosocial support, and assessment of distress and pain. Data was collected about perceived barriers to the provision of psychosocial support at participants’ place of employment, as well as roles and training needs. Cancer nurses were recruited through the Cancer Nurses Society of Australia, the Royal College of Nursing Australia, and the Haematology Society of Australia & New Zealand. Descriptive and correlational analyses were conducted. Results: Of 354 respondents, 266 completed the assessment. Relaxation training was the most prevalent form of psychosocial support (24%) and web-based support (20%) was the most common modality. While 26% of institutions had no systematic means of assessing distress amongst patients, those that did relied primarily on clinical interviews (37%). Once a patient was identified as distressed, most often the care coordinator was responsible for providing ensuing interventions. An organizational culture in which psychosocial issues are seen as less important than medical treatment (23%) and role ambiguity proved to be barriers to provision of psychosocial support, particularly when nurses did not perceive psychosocial support was beneficial and supervision was inadequate (R2= .313, F(1, 265) = 6.58, p < .001). Conclusions: Results confirmed that dissemination does not necessarily equal implementation. Clear pathways for assessment and treatment need to be established to reduce individual barriers and promote organizational cultures that appreciate the need to integrate psychosocial care in standard medical treatment.

scholarly journals ETHICAL CONSIDERATION AND PSYCHOSOCIAL CARE FOR PEOPLE WITH HEMOPHILIA

2017 ◽  
Vol 64 (1) ◽  
pp. 21-24
Author(s):  
Lavinia Maria Hogea ◽  
◽  
Bogdan Gheorghe Hogea ◽  
Mihaela Aungurence ◽  
Laura Alexandra Nussbaum ◽  
...  
Keyword(s):  
Medical Treatment ◽  
Social Workers ◽  
Psychosocial Support ◽  
Medical Condition ◽  
Psychosocial Care ◽  
Psychosocial Issues ◽  
Treatment Centre ◽  
Full Life ◽  
Psychosocial Challenges

Psychosocial support is an important part of comprehensive care for people with hemophilia. Beyond the medical condition, individuals with hemophilia commonly face a number of psychosocial challenges. Social workers, psychologists and counsellors play a key role in helping new patients and their families adapt and learn to cope with their new reality. It is possible to have hemophilia and still live a full life, even for those who face many social and economic challenges. Medical treatment alone does not automatically translate into better quality of life. Beyond medical treatment, the responsibilities of the hemophilia treatment centre include educating families about how to manage hemophilia and helping them find interventions for psychosocial issues.

scholarly journals Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis

2021 ◽  
Vol 8 ◽  
pp. 237437352110496
Author(s):  
Ethan G. Lester ◽  
Paula J. Popok ◽  
Victoria A. Grunberg ◽  
Alejandro Baez ◽  
Farahdeba Herrawi ◽  
...  
Keyword(s):  
Psychosocial Support ◽  
Qualitative Interviews ◽  
Psychosocial Care ◽  
Barriers And Facilitators ◽  
Web Based ◽  
Positive Attitudes ◽  
Efficient Access ◽  
Semistructured Interviews ◽  
Life Context ◽  
Specific Factors

Introduction: Psychosocial care for people with neurofibromatosis (NF) is challenging to access. Therefore, we sought to develop a self-guided web-based treatment platform for people with NF based on the live video relaxation response resiliency program for NF (3RP-NF). Here we report on qualitative interviews with adult patients who participated in the 3RP-NF to: (a) understand participant perceptions of the 3RP-NF program and (b) gather feedback for a self-guided web-based treatment platform (i.e., NF-Web). Methods: We conducted individual semistructured interviews ( N = 23; videoconferencing). We utilized both the Framework method and a hybrid deductive and inductive approach to analyze qualitative data. Results: We examined findings within the following themes for both 3RP-NF and NF-Web: (a) general attitudes, (b) barriers and facilitators, and (c) program-specific factors. Participants endorsed positive attitudes towards the 3RP-NF and NF-Web and described unique barriers and facilitators to each and provided suggestions regarding technology, NF-specific needs, and ways to promote social support virtually. Conclusions: This study highlights the importance of gathering participant feedback when designing novel, illness-specific interventions. In future studies, we aim to provide people with NF effective and efficient access to psychosocial support that matches their needs and life context. Results are informing NF-Web development.

scholarly journals Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Stefanie Witt ◽  
Kaja Kristensen ◽  
Silke Wiegand-Grefe ◽  
Johannes Boettcher ◽  
Janika Bloemeke ◽  
...  
Keyword(s):  
Rare Diseases ◽  
Psychosocial Support ◽  
Psychosocial Care ◽  
Routine Care ◽  
System Level ◽  
Organizational Level ◽  
Care Providers ◽  
Patient Organizations ◽  
Qualitative Interview Study ◽  
The Family

Abstract Background Rare diseases occur in early childhood and have a major impact on the quality of life of the affected children and their families. Their need for psychosocial support is considerable, but psychosocial care in Germany is still far from being part of routine care. We interviewed experts to explore how they describe the current pathways to psychosocial care, potential barriers and problems, and possibilities for improvements. Results We conducted telephone interviews with 49 experts working in somatic medicine, psychosocial medicine, patient organizations, child and youth welfare, and the educational sector. Interviews were transcribed and analyzed using focused interview analysis. Results document ways of access and facilities used by families to receive psychosocial care. The barriers described by the experts can be summarized on three levels: the family-organizational level, the family-psycho-emotional level, and finally, the structural system level. Accordingly, suggestions for improvement were directed at these levels. Conclusion Based on the experts' perspectives, there is ample room for improvement to facilitate the pathways to psychosocial care for children with rare diseases and their families. Unfortunately, there seems to be a long way to go before psychosocial care will be routinely provided. However, awareness of the issue among different professional groups is high, and numerous suggestions for improvement were made, including continuous expansion of services to all family members, strengthening of low-threshold services, simplifying application procedures, and more cooperation between different funding agencies as well as between different care providers.

scholarly journals Online Pregnancy-Related Information: Reliability and Worries Among Expectant Women In Qatar

2021 ◽  
Author(s):  
Ayman Al-Dahshan ◽  
Mohamad Chehab ◽  
Nagah Selim
Keyword(s):  
Antenatal Care ◽  
Pregnant Women ◽  
Sampling Technique ◽  
Cross Sectional Study ◽  
Care Providers ◽  
Cross Sectional ◽  
Web Based ◽  
Related Information ◽  
University Degree ◽  
Self Administered Questionnaire

Abstract Background: Although the internet can be a source of reassurance and clarification for expectant women, it ‎could cause concerns or feelings of worry when reading about pregnancy-related ‎information. The current research sought to assess the feelings of worry and perceived reliability towards online pregnancy-related information and the associated factors among expectant women attending antenatal clinics at primary healthcare centers in Qatar.Methods: A cross-sectional study design was employed. The participants were recruited through a systematic random sampling technique. ‎A self-administered questionnaire was used to collect data from the participants. Descriptive and analytic statistics were used when appropriate‎.Results: A total of 327 expecting women completed the questionnaire. Most participants were aged between 26-34 years (74.1%), held a college/university degree (76.4%), and multigravidas (73.1%). About one-third of the women ‎(31.2‎%) reported feeling worried due to something they read online. The participants coped with these feelings by consulting their antenatal care provider at the next appointment (51.0%) or by talking with relatives and friends (47.0%). Furthermore, most women (79.2%) considered online pregnancy-related information to be reliable or highly reliable. Holding a college/university degree, primigravidae, and having no children were factors significantly associated with a high perception of reliability of online health information.Conclusion: Although online pregnancy information caused feelings of worry for some pregnant ‎women, most women perceived such information to be reliable. Thus, antenatal care providers should be equipped to guide pregnant women on how to access high-quality web-based information.

scholarly journals Use and Effects of Patient Access to Medical Records in General Practice Through a Personal Health Record in the Netherlands: Protocol for a Mixed-Methods Study

10.2196/10193 ◽  
2018 ◽  
Vol 7 (9) ◽  
pp. e10193 ◽  
Author(s):  
Maria MT Vreugdenhil ◽  
Rudolf B Kool ◽  
Kees van Boven ◽  
Willem JJ Assendelft ◽  
Jan AM Kremer
Keyword(s):  
Health Care ◽  
General Practice ◽  
Health Care Providers ◽  
Personal Health Record ◽  
Mixed Methods Study ◽  
Personal Health ◽  
Care Providers ◽  
Group Discussions ◽  
Web Based ◽  
Staff Level

Background In the Dutch health care system, general practitioners hold a central position. They store information from all health care providers who are involved with their patients in their electronic health records. Web-based access to the summary record in general practice through a personal health record (PHR) may increase patients’ insight into their medical conditions and help them to be involved in their care. Objective We describe the protocol that we will use to investigate the utilization of patients’ digital access to the summary of their medical records in general practice through a PHR and its effects on the involvement of patients in their care. Methods We will conduct a multilevel mixed-methods study in which the PHR and Web-based access to the summary record will be offered for 6 months to a random sample of 500 polypharmacy patients, 500 parents of children aged <4 years, and 500 adults who do not belong to the former two groups. At the patient level, a controlled before-after study will be conducted using surveys, and concurrently, qualitative data will be collected from focus group discussions, think-aloud observations, and semistructured interviews. At the general practice staff (GP staff) level, focus group discussions will be conducted at baseline and Q-methodology inquiries at the end of the study period. The primary outcomes at the patient level are barriers and facilitators for using the PHR and summary records and changes in taking an active role in decision making and care management and medication adherence. Outcomes at the GP staff level are attitudes before and opinions after the implementation of the intervention. Patient characteristics and changes in outcomes related to patient involvement during the study period will be compared between the users and nonusers of the intervention using chi-square tests and t tests. A thematic content analysis of the qualitative data will be performed, and the results will be used to interpret quantitative findings. Results Enrollment was completed in May 2017 and the possibility to view GP records through the PHR was implemented in December 2017. Data analysis is currently underway and the first results are expected to be submitted for publication in autumn 2019. Conclusions We expect that the findings of this study will be useful to health care providers and health care organizations that consider introducing the use of PHR and Web-based access to records and to those who have recently started using these. Trial Registration Netherlands Trial Registry NTR6395; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6395 (Archived by WebCite at http://www.webcitation.org/71nc8jzwM) Registered Report Identifier RR1-10.2196/10193

scholarly journals Institutional care for children and adolescents that use drugs

2021 ◽  
Vol 38 ◽  
Author(s):  
Julia Corrêa GOMES ◽  
Fernanda Kimie Tavares MISHIMA-GOMES ◽  
Clarissa Mendonça CORRADI-WEBSTER
Keyword(s):  
Children And Adolescents ◽  
Thematic Analysis ◽  
Social Vulnerability ◽  
Participant Observation ◽  
Institutional Care ◽  
Psychosocial Care ◽  
Care Providers ◽  
Structured Interviews ◽  
Specific Population ◽  
A Current

Abstract The literature highlights the existence of weaknesses in the psychosocial care network, especially in the treatment of children and adolescents that use drugs. The study aimed to comprehend, based on the Winnicottian theoretical framework, how a Residential Care Unit has been providing care to children and adolescents with needs arising from drugs use in situations of social vulnerability. Semi-structured interviews, with eight care providers, and 65 hours of participant observation were carried out. From the thematic analysis, three themes were constructed: (1) Setting: regarding attention to basic needs and construction of a routine; (2) View: regarding empathy and expansion of perspectives; (3) Aggressiveness: regarding new ways of relating. Important actions are aimed at constructing care for this specific population, as this is a current theme with recent and weakly structured public policies.

scholarly journals Caregiver-Focused, Web-Based Interventions: Systematic Review and Meta-Analysis (Part 2) (Preprint)

2018 ◽  
Author(s):  
Jenny Ploeg ◽  
Muhammad Usman Ali ◽  
Maureen Markle-Reid ◽  
Ruta Valaitis ◽  
Amy Bartholomew ◽  
...  
Keyword(s):  
Systematic Review ◽  
Self Efficacy ◽  
Chronic Condition ◽  
Electronic Monitoring ◽  
Psychosocial Support ◽  
Meta Analysis ◽  
Self Esteem ◽  
Intervention Programs ◽  
Care Recipient ◽  
Web Based

BACKGROUND Approaches to support the health and well-being of family caregivers of adults with chronic conditions are increasingly important given the key roles caregivers play in helping family members to live in the community. Web-based interventions to support caregivers have the potential to lessen the negative health impacts associated with caregiving and result in improved health outcomes. OBJECTIVE The primary objective of this systematic review and meta-analysis was to examine the effect of caregiver-focused, Web-based interventions, compared with no or minimal Web-based interventions, on caregiver outcomes. The secondary objective was to assess the effect of different types of Web-based interventions (eg, education, peer and professional psychosocial support, and electronic monitoring of the care recipient), compared with no or minimal Web-based interventions, on caregiver outcomes. METHODS MEDLINE, EMBASE, CIHAHL, PsychInfo, Cochrane, and AgeLine were searched from January 1995 to April 2017 for relevant randomized controlled trials (RCTs) or controlled clinical trials (CCTs) that compared caregiver-focused, Web-based intervention programs with no or minimal Web-based interventions for caregivers of adults with at least one chronic condition. Studies were included if they involved: adult family or friend caregivers (aged ≥18 years) of adults living in the community with a chronic condition; a caregiver-focused, Web-based intervention of education or psychosocial support or electronic monitoring of the care recipient; and general caregiver outcomes (ie, burden, life satisfaction, self-efficacy or mastery, reaction to problem behavior, self-esteem, strain, and social support). Title and abstract as well as full-text screening were completed in duplicate. Data were extracted by a single reviewer and verified by a second reviewer, and risk of bias assessments were completed accordingly. Where possible, data for these caregiver outcomes were meta-analyzed. RESULTS The search yielded 7927 unique citations, of which 294 studies were screened at full text. Of those, 14 studies met the inclusion criteria; 12 were RCTs and 1 study was a CCT. One study used an RCT design in 1 country and a CCT design in 2 other countries. The beneficial effects of any Web-based intervention program, compared with no or minimal Web-based intervention, resulted in a mean increase of 0.85 points (95% CI 0.12 to 1.57) for caregiver self-esteem, a mean increase of 0.36 points (95% CI 0.11 to 0.62) for caregiver self-efficacy or mastery, and a mean decrease of 0.32 points (95% CI −0.54 to −0.09) for caregiver strain. However, the results are based on poor-quality studies. CONCLUSIONS The review found evidence for the positive effects of Web-based intervention programs on self-efficacy, self-esteem, and strain of caregivers of adults living with a chronic condition. Further high-quality research is needed to inform the effectiveness of specific types of Web-based interventions on caregiver outcomes. CLINICALTRIAL PROSPERO CRD42018091715; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=91715 (Archived by WebCite at http://www.webcitation.org/738zAa5F5)

scholarly journals Development of a tool to assess health applications for healthcare providers: A Delphi Expert Panel Study (Preprint)

2020 ◽  
Author(s):  
Immaculada Grau-Corral ◽  
Percy Efran Pantoja ◽  
Francisco J. Grajales III ◽  
Belchin Kostov ◽  
Valentí Aragunde ◽  
...  
Keyword(s):  
Literature Review ◽  
Health Care Providers ◽  
Expert Panel ◽  
Panel Study ◽  
Healthcare Providers ◽  
Care Providers ◽  
Web Based ◽  
Health Apps ◽  
Agreement Assessment ◽  
Health Applications

BACKGROUND The presence of the mobile phone and devices is generating knowledge about the use of applications to support patient care, but there are few recommendations for apps dedicated to healthcare professionals OBJECTIVE To establish a validated scale to assess healthcare mobile applications is the most efficient step for health care providers and systems. The main goal is to create and validate a tool to evaluate health apps destined to be used by health professionals. METHODS A five steps simplified methodology to assess of the scale was followed. The first step consists of building a scale for professionals based on a literature review. Next step would be an expert panel validation by a Delphi method, rating web-based questionnaires to evaluate inclusion and weight of the indicators. It was agreed to carry out, as many iterations as necessary, to reach a consensus of 75%. Finally, a pilot of the score was developed to evaluate the reliability of the scale. For the inter-rater agreement assessment during the pilot, the Cohen Kappa was used. RESULTS After the literature review, a first scale draft was developed. Two rounds of interactions of the local investigation group and the external panel of experts were needed to select final indicators. Seventeen indicators were included in the score. For the pilot test, 280 apps were evaluated and 66 meet the criteria. The interrater agreement was strong (higher than 82% with significant kappa >0.72 per app and item). CONCLUSIONS We have developed, with a reproducible methodology, a tool that allows us to evaluate health applications for clinical, surgical and general medical providers. The ISYScore-PRO scale to be reliable and reproducible. The assessment permitted to consolidate every step of the methodology. We were able to reach consensus on the dimensions and items on the scale with only two rounds. The process of validation included two robust methodologies. The ISYScore-PRO scale is reliable and reproducible.

scholarly journals A Pain eHealth Platform for Engaging Obese, Older Adults with Chronic Low Back Pain in Nonpharmacological Pain Treatments: Protocol for a Pilot Feasibility Study

10.2196/14525 ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. e14525
Author(s):  
Amber K Brooks ◽  
David P Miller Jr ◽  
Jason T Fanning ◽  
Erin L Suftin ◽  
M Carrington Reid ◽  
...  
Keyword(s):  
Older Adults ◽  
Primary Care ◽  
Low Back Pain ◽  
Back Pain ◽  
Chronic Low Back Pain ◽  
Primary Care Providers ◽  
Patient Portal ◽  
Low Back ◽  
Care Providers ◽  
Web Based

Background Low back pain is a costly healthcare problem and the leading cause of disability among adults in the United States. Primary care providers urgently need effective ways to deliver evidence-based, nonpharmacological therapies for chronic low back pain. Guidelines published by several government and national organizations have recommended nonpharmacological and nonopioid pharmacological therapies for low back pain. Objective The Pain eHealth Platform (PEP) pilot trial aims to test the feasibility of a highly innovative intervention that (1) uses an electronic health record (EHR) query to systematically identify a phenotype of obese, older adults with chronic low back pain who may benefit from Web-based behavioral treatments; (2) delivers highly tailored messages to eligible older adults with chronic low back pain via the patient portal; (3) links affected patients to a Web app that provides education on the efficacy of evidence-based, nonpharmacological, behavioral pain treatments; and (4) directs patients to existing Web-based health treatment tools. Methods Using a three-step modified Delphi method, an expert panel of primary care providers will define a low back pain phenotype for an EHR query. Using the defined low back pain phenotype, an EHR query will be created to identify patients who may benefit from the PEP. Up to 15 patients with low back pain will be interviewed to refine the tailored messaging, esthetics, and content of the patient-facing Web app within the PEP. Up to 10 primary care providers will be interviewed to better understand the facilitators and barriers to implementing the PEP, given their clinic workflow. We will assess the feasibility of the PEP in a single-arm pragmatic pilot study in which secure patient portal invitations containing a hyperlink to the PEP Web app are sent to 1000 patients. The primary outcome of the study is usability as measured by the System Usability Scale. Results Qualitative interviews with primary care providers were completed in April 2019. Qualitative interviews with patients will begin in December 2019. Conclusions The PEP will leverage informatics and the patient portal to deliver evidence-based nonpharmacological treatment information to adults with chronic low back pain. Results from this study may help inform the development of Web-based health platforms for other pain and chronic health conditions. International Registered Report Identifier (IRRID) DERR1-10.2196/14525

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