Parents and family matter: strategies for developing family-centered adolescent care within primary care practices.
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ABSTRACT:
SUBMITTER: Svetaz MV
PROVIDER: S-EPMC5549465 | biostudies-other | 2014 Sep
REPOSITORIES: biostudies-other
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Project description:Objectives:This study was conducted to examine the differences between perceptions and practices of family-centered care among Thai pediatric nurses. Methods:This mixed-methods study consisted of two phases. In the first phase, a descriptive comparative design using the Family-Centered Care Questionnaire - Revised (FCCQ-R) was administered to 142 pediatric nurses from a university hospital in Bangkok, Thailand. In the second phase, qualitative interviews were conducted with 16 pediatric nurses to gather complementary information regarding the major findings from the first phase. Results:The results revealed that family strengths and individuality were rated the highest as the most important elements and the most frequent practices. Parent/professional collaboration was perceived as the least important element, while the design of the heath care delivery system was rated as the least frequent practice. The qualitative data revealed that the major reasons for suboptimal implementation included a common perception that family-centered care is a Western concept, nurses' weak attitudes towards their roles, and a shortage of nurses. Conclusions:Nurses agreed that the identified elements of family-centered care were necessary but that they did not incorporate the concepts into their daily nursing practice to maintain their endorsement of the family-centered care model. Further study is needed to explore how family-centered care is understood and operationalized by Thai nurses and how hospital administration and environments can be modified to support this care model.
| S-EPMC7031120 | biostudies-literature
Project description: Not available
| S-EPMC11201882 | biostudies-literature
Project description:BACKGROUND:Overtreatment and overtesting expose patients to unnecessary, wasteful, and potentially harmful care. Reducing overtreatment or overtesting that has become ingrained in current clinical practices and is being delivered on a routine basis will require solutions that incorporate a deep understanding of multiple perspectives, particularly those on the front lines of clinical care: patients and their clinicians. Design approaches are a promising and innovative way to incorporate stakeholder needs, desires, and challenges to develop solutions to complex problems. OBJECTIVE:This study aimed (1) to engage patients in a design process to develop high-level deintensification strategies for primary care (ie, strategies for scaling back or stopping routine medical services that more recent evidence reveals are not beneficial) and (2) to engage both patients and primary care providers in further co-design to develop and refine the broad deintensification strategies identified in phase 1. METHODS:We engaged stakeholders in design charrettes-intensive workshops in which key stakeholders are brought together to develop creative solutions to a specific problem-focused on deintensification of routine overuse in primary care. We conducted the study in 2 phases: a 6.5-hour design charrette with 2 different groups of patients (phase 1) and a subsequent 4-hour charrette with clinicians and a subgroup of phase 1 patients (phase 2). Both phases included surveys and educational presentations related to deintensification. Phase 1 involved several design activities (mind mapping, business origami, and empathy mapping) to help patients gain a deeper understanding of the individuals involved in deintensification. Following that, we asked participants to review hypothetical scenarios where patients, clinicians, or the broader health system context posed a barrier to deintensification and then to brainstorm solutions. The deintensification themes identified in phase 1 were used to guide phase 2. This second phase primarily involved 1 design activity (WhoDo). In this activity, patients and clinicians worked together to develop concrete actions that specific stakeholders could take to support deintensification efforts. This activity included identifying barriers to the actions and approaches to overcoming those barriers. RESULTS:A total of 35 patients participated in phase 1, and 9 patients and 7 clinicians participated in phase 2. The analysis of the deintensification strategies and survey data is currently underway. The results are expected to be submitted for publication in early 2020. CONCLUSIONS:Health care interventions are frequently developed without input from the people who are most affected. The exclusion of these stakeholders in the design process often influences and limits the impact of the intervention. This study employed design charrettes, guided by a flexible user-centered design model, to bring clinicians and patients with differing backgrounds and with different expectations together to cocreate real-world solutions to the complex issue of deintensifying medical services. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR1-10.2196/15618.
| S-EPMC6904896 | biostudies-literature
Project description:BackgroundChildren with inflammatory bowel diseases (IBDs) require primary and gastrointestinal (GI) care, but little is known about patient and family preferences for care receipt. We aimed to understand caregiver perceptions of current healthcare quality, describe barriers to receiving healthcare, and elicit caregiver and adolescent preferences for how comprehensive care ideally would be delivered.MethodsThis was an anonymous survey of caregivers of 2- to 17-year olds with IBD and adolescents with IBD aged 13-17 years at a large, free-standing children's hospital. Surveys assessed patient medical history, family demographics, perceptions of health care quality and delivery, barriers to primary and GI care, and preferences for optimal care delivery.ResultsTwo hundred and seventeen caregivers and 140 adolescents were recruited, 214 caregivers and 133 adolescents consented/assented, and 160 caregivers and 84 adolescents completed the survey (75% and 60% response rate, respectively). Mean patient age was 14 years (SD = 3); 51% male; 79% Crohn's disease, 16% ulcerative colitis, and 4% indeterminate colitis. Caregivers were primarily female (86%), Caucasian (94%), and living in a 2-caregiver household (79%). Most caregivers reported that their child's primary care physician (PCP) and GI doctor oversaw their primary care (71%) and their IBD care (94%), respectively. Caregivers were satisfied with communication with their PCP and GI providers (>90%) but did not know how well they communicated with one another (54%). Barriers to primary and GI care varied, and few caregivers (6%) reported unmet healthcare needs. Caregivers and adolescents saw PCPs and GI doctors having important roles in comprehensive care, though specific preferences for care delivery differed.ConclusionCaregivers and adolescent perspectives are essential to developing family-centered care models for children with IBD.
| S-EPMC7437716 | biostudies-literature
Project description:PROBLEM:The Institute for Patient- and Family-Centered Care's (IPFCC) definition of family-centered care (FCC) includes the following four core concepts: respect and dignity, information sharing, participation, and collaboration. To date, research has focused on the provider experience of FCC in the PICU; little is known about how parents of children hospitalized in the pediatric intensive care unit (PICU) experience FCC. ELIGIBILITY CRITERIA:Articles were included if they were published between 2006 and 2016, included qualitative, quantitative, or mixed methods results, related to care received in a PICU, and included results that were from a parent perspective. SAMPLE:49 articles from 44 studies were included in this review; 32 used qualitative/mixed methods and 17 used quantitative designs. RESULTS:The concepts of respect and dignity, information sharing, and participation were well represented in the literature, as parents reported having both met and unmet needs in relation to FCC. While not explicitly defined in the IPFCC core concepts, parents frequently reported on the environment of care and its impact on their FCC experience. CONCLUSIONS:As evidenced by this synthesis, parents of critically ill children report both positive and negative FCC experiences relating to the core concepts outlined by the IPFCC. IMPLICATIONS:There is a need for better understanding of how parents perceive their involvement in the care of their critically ill child, additionally; the IPFCC core concepts should be refined to explicitly include the importance of the environment of care.
| S-EPMC5955783 | biostudies-literature
Project description:BackgroundIn recent years, extensive studies have been designed and performed in the context of providing midwifery care in developed countries, which has been unfortunately neglected in some low resources and upper middle-income countries such as Iran. This study was conducted to identify the best strategies for improving the quality of midwifery care and developing midwife-centered care in Iran.MethodsThis was a qualitative study using focus group discussion and content analysis method. Data were collected from 121 participants including midwifery board members, gynecologists, heads of midwifery departments, midwifery students, in charge midwives in hospitals, and midwives in the private sector. Focused-group discussions were used for data collection, and data were analyzed using content analysis method.ResultsThe main themes extracted from the participants' statements regarding improving the quality of midwifery care were as follows: Promotion and development of education, Manpower management, Rules, and regulations and standards for midwifery services, and Policy making.ConclusionThis study showed that to improve midwifery care, health policy makers should take into account both the quality and quantity of midwifery education, and promote midwifery human resources through employment. Furthermore, insurance support, encouragement, supporting and motivating midwives, enhancing and improving the facilities, providing hospitals and maternity wards with cutting-edge equipment, promoting and reinforcing the position of midwives in the family doctor program, and using a referral system were the strategies proposed by participants for improving midwifery care. Finally, establishing an efficient and powerful monitoring system to control the practice of gynecologists and midwives, promoting the collaborative practice of midwives and gynecologists, and encouraging team-work with respect to midwifery care were other strategies to improve the midwifery services in Iran. Authorities and policymakers may set the stage for developing high quality and affordable midwifery care by relying on the strategies presented in this study.
| S-EPMC8762813 | biostudies-literature
Project description:PURPOSE:In order to develop a theoretical framework for person-centered care models for children with epilepsy and their parents, we conducted a qualitative study to explore and understand parents' needs, values, and preferences to ultimately reduce barriers that may be impeding parents from accessing and obtaining help for their children's co-occurring problems. METHODS:A qualitative grounded theory study design was utilized to understand parents' perspectives. The participants were 22 parents of children with epilepsy whose age ranged from 31 to 53 years. Interviews were conducted using open-ended semistructured questions to facilitate conversation. Transcripts were analyzed using grounded theory guidelines. RESULTS:In order to understand the different perspectives parents had about their child, we devised a theory composed of three zones (Zones 1, 2, and 3) that can be used to conceptualize parents' viewpoints. Zone location was based on a parent's perspectives on their child's comorbidities in the context of epilepsy. These zones were developed to help identify distinctions between parents' perspectives and to provide a framework within which to understand parents' readiness to access and implement interventions to address the child's struggles. These zones of understanding describe a parent's perspectives on their children's struggles at a particular point in time. This is the perspective from which parents address their child's needs. This theoretical perspective provides a structure in which to discuss a parent's perspectives on conceptualizing or comprehending the child's struggles in the context of epilepsy. The zones are based on how the parents describe (a) their concerns about the child's struggles and (b) their understanding of the struggles and (c) the parent's view of the child's future. CONCLUSIONS:Clinicians working with individuals and families with epilepsy are aware that epilepsy is a complex and unpredictable disorder. The zones help clinicians conceptualize and build a framework within which to understand how parents view their child's struggles, which influences the parents' ability to understand and act on clinician feedback and recommendations. Zones allow for increased understanding of the parent at a particular time and provide a structure within which a clinician can provide guidance and feedback to meet parents' needs, values, and preferences. This theory allows clinicians to meet the parents where they are and address their needs in a way that benefits the parents, family, and child.
| S-EPMC4180211 | biostudies-literature
Project description:Autism spectrum disorder (ASD) affects 1:59 children, yet little is known about parents' perceptions of family-centered care (FCC) during the diagnostic process leading up to diagnosis. This mixed-methods study explored key elements of FCC from 31 parents of children recently diagnosed with ASD using parallel qualitative and quantitative measures. Parents rated highly their receipt of FCC and discussed ways providers demonstrated FCC. However, the majority of parents indicated that the period when their child was undergoing diagnosis was stressful and reported symptoms of depression and anxiety. The study points to ways in which health care providers can enhance FCC provided to families when a child is undergoing ASD diagnosis.
| S-EPMC8349341 | biostudies-literature
Project description:BackgroundDespite progress in developing learning health systems (LHS) and associated metrics of success, a gap remains in identifying measures to guide the implementation and assessment of the impact of an oncology LHS. Our aim was to identify a balanced set of measures to guide a person-centered oncology LHS.MethodsA modified Delphi process and clinical value compass framework were used to prioritize measures for tracking LHS performance. A multidisciplinary group of 77 stakeholders, including people with cancer and family members, participated in 3 rounds of online voting followed by 50-minute discussions. Participants rated metrics on perceived importance to the LHS and discussed priorities.ResultsVoting was completed by 94% of participants and prioritized 22 measures within 8 domains. Patient and caregiver factors included clinical health (Eastern Cooperative Oncology Group Performance Status, survival by cancer type and stage), functional health and quality of life (Patient Reported Outcomes Measurement Information System [PROMIS] Global-10, Distress Thermometer, Modified Caregiver Strain Index), experience of care (advance care planning, collaboRATE, PROMIS Self-Efficacy Scale, access to care, experience of care, end-of-life quality measures), and cost and resource use (avoidance and delay in accessing care and medications, financial hardship, total cost of care). Contextual factors included team well-being (Well-being Index; voluntary staff turnover); learning culture (Improvement Readiness, compliance with Commission on Cancer quality of care measures); scholarly engagement and productivity (institutional commitment and support for research, academic productivity index); and diversity, equity, inclusion, and belonging (screening and follow-up for social determinants of health, inclusivity of staff and patients).ConclusionsThe person-centered LHS value compass provides a balanced set of measures that oncology practices can use to monitor and evaluate improvement across multiple domains.
| S-EPMC9219163 | biostudies-literature
Project description:BackgroundResearch has shown that adverse events during care transitions from hospital to home can have a significant impact on patients' outcomes, leading to readmission, delayed healing or even death. Gaps exist in the ways of monitoring care during transition periods and there is a need to help organizations better implement and monitor safe person-and family-centered care. Value statements are a way to obtain narratives in lay terms about how well care, treatment and support is organized to meet the needs and preferences of patients/families. The purpose of this study was to identify the value statements that are perceived by decision-makers and patients/families to best signify safe person- and family-centered care during transitions from hospital to home.MethodsBetween January and September 2017, a web-based Delphi was used to survey key stakeholders in acute care and home care organizations across Canada.ResultsDecision-makers (n = 22) and patients/families (n = 24) from five provinces participated in the Delphi. Following Round 1, 45 perceived value statements were identified. In Round 2, consensus was received on 33/45 (73.3%) by decision-makers, and 30/45 (66.7%) by patients/families. In Round 3, additional value statements reached consensus in the decision-makers' survey (3) and in the patients/families' survey (2). A total of 30 high priority value statements achieved consensus derived from both the decision-makers' and patients/families' perspectives.ConclusionThis study was an important first step in identifying key consensus-based priority value statements for monitoring care transitions from the perspective of both decision-makers and patients/families. Future research is needed to test their usability and to determine whether these value statements are actually suggestive of safe person-and family-centered care transition interventions from hospital to home.
| S-EPMC6342305 | biostudies-literature