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Zoning in on parents' needs: understanding parents' perspectives in order to provide person-centered care.

ABSTRACT: 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.

SUBMITTER: Jones JE

PROVIDER: S-EPMC4180211 | biostudies-literature | 2014 Aug

REPOSITORIES: biostudies-literature

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Zoning in on parents' needs: understanding parents' perspectives in order to provide person-centered care.

Jones Jana E JE Kessler-Jones Alanna A Thompson Mary K MK Young Kate K Anderson Amelia J AJ Strand David M DM

Epilepsy & behavior : E&B 20140720

<h4>Purpose</h4>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.<h4>Methods</h4>A qualitative grounded theory study design was utilized to understand parents' perspectives. The participants w ...[more]

PMID: 25050778

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Project description:BackgroundPerson-centered care (PCC) is an important concept in many countries' national guidelines and dementia plans. Key intervention categories, i.e., a taxonomy of person-centered (PC)-interventions, to provide person-centered dementia care, are difficult to identify from literature.ObjectiveThis systematic review aimed to identify and categorize published PC-interventions into key intervention categories to guide the provision of person-centered dementia care.MethodsConduct of this systematic review followed Cochrane guidelines. A search of the dimensions 'Dementia', 'Person-Centered Care', and 'Intervention' combined was performed in PubMed, EMBASE, and Web of Science. Study selection was based on 2-stage screening against eligibility criteria, limited to controlled study designs. Information about interventions and outcomes was extracted into an "Effects Table". The identified PC-interventions were categorized in intervention categories to provide person-centered dementia care.ResultsSearches identified 1,806 records. 19 studies were included. These covered a range of psychosocial interventions, oftentimes multi-component interventions, which followed heterogeneous approaches. Studies were conducted in long-term care/hospital settings. Nine key intervention categories were identified: social contact, physical activities, cognitive training, sensory enhancement, daily living assistance, life history oriented emotional support, training and support for professional caregivers, environmental adjustments, and care organization.ConclusionOur findings provide a current overview of published PC-interventions in dementia, which followed heterogeneous approaches under the PCC-concept. The heterogeneity made it challenging to identify a well-defined concept of PCC and common key intervention categories. An effectiveness-evaluation of "PC" - including "relationship-centered"-interventions may be valuable, to assess whether an explicit focus on relationships around PCC-interventions yields an added benefit.Prospero-idCRD42021225084.

Project description:BackgroundPeople with chronic conditions have complex healthcare needs that lead to challenges for adequate healthcare provision. Current healthcare services do not always respond adequately to their needs. A modular perspective, in particular providing visualization of the modular service architecture, is promising for improving the responsiveness of healthcare services to the complex healthcare needs of people with chronic conditions. The modular service architecture provides a comprehensive representation of the components and modules of healthcare provision. In this study, we explore this further in a qualitative multiple case study on healthcare provision for children with Down syndrome in the Netherlands.MethodsData collection for four cases involved 53 semi-structured interviews with healthcare professionals and 21 semi-structured interviews with patients (the parents of children with Down syndrome as proxy). In addition, we gathered data by means of practice observations and analysis of relevant documents. The interviews were audio-recorded, transcribed verbatim and analyzed utilizing the Miles and Huberman approach.ResultsOur study shows that the perspectives on healthcare provision of professionals and patients differ substantially. The visualization of the modular service architecture that was based on the healthcare professionals' perspective provided a complete representation of (para)medical outcomes relevant to the professionals' own discipline. In contrast, the modular service architecture based on the patients' perspective, which we define as a person-centered modular service architecture, provided a representation of the healthcare service that was primarily based on functional outcomes and the overall wellbeing of the patients.ConclusionOur study shows that visualization of the modular service architecture can be a useful tool to better address the complex needs and requirements of people with a chronic condition. We suggest that a person-centered modular service architecture that focuses on functional outcomes and overall wellbeing, enables increased responsiveness of healthcare services to people with complex healthcare needs and provision of truly person-centered care.

Project description:BackgroundFor more than a decade, the Patient-Centered Medical Home model has been a guiding vision for the modernization of primary care systems. In Canada, Ontario's Family Health Teams (FHTs) were designed in the mid-2000s with the medical home model in mind. These primary care clinics aim to provide accessible, comprehensive, and person-centered primary care services to communities across Ontario. Their services typically include mental health care for people experiencing common mental disorders, such as depression and anxiety disorders. It remains unclear, however, whether the mental health care delivered within FHTs is consistent with person-centered care approaches. In the current study, we aimed to explore the perspectives of FHT providers on the care delivered to people with common mental disorders to determine whether, and to what extent, they believed this care was person-centered.MethodsWe conducted a qualitative grounded theory study involving interviews with 65 health professionals and administrators from 18 FHTs across Ontario. Transcripts were coded using a three-step process of initial, focused, and axial coding that mixed inductive and deductive approaches informed by sensitizing concepts on person-centeredness.ResultsPractices and challenges associated with the delivery of mental health care in a person-centered way were captured by several themes regrouped into five domains: (1) patient as unique person, (2) patient-provider relationship, (3) sharing power and responsibility, (4) connecting to family and community, and (5) creating person-centered care environments. FHT providers perceived that they delivered person-centered care by delivering mental health care that was responsive, flexible, and consistent with biopsychosocial approaches. They emphasized the importance of creating long-lasting relationships with patients grounded in empathy and trust. Their challenges included being able to ensure continuity of care, adequately prioritizing patients' mental health issues, and meaningfully engaging patients and families as partners in care.ConclusionsOur findings suggest that FHT providers have adopted a range of person-centered practices for people with common mental disorders. However, greater attention to practices such as shared decision making, supporting self-management, and involving families in care would strengthen person-centeredness and bring teams closer to the Patient-Centered Medical Home vision.

Project description:BackgroundWhile person-centered care (PCC) includes multiple domains, residential substance use disorder (SUD) treatment clients may value certain domains over others. We sought to identify the PCC domains most valued by former residential SUD treatment clients. We also sought to explore conceptual distinctions between potential theoretical PCC subdomains.MethodsWe distributed an online survey via social media to a national convenience sample of former residential SUD treatment clients. Respondents were presented with ten PCC domains in an online survey: (a) access to evidence-based care; (b) integration of care; (c) diversity/respect for other cultures; (d) individualization of care; (e) emotional support; (f) family involvement in treatment; (g) transitional services; (h) aftercare; (i) physical comfort; and (j) information provision. Respondents were asked to select up to two domains they deemed most important to their residential SUD treatment experience. We used descriptive statistics to identify response frequencies and logistic regression to predict relationships between selected domains and respondents' race, gender, relationship status, parenting status, and housing stability.ResultsOur final sample included 435 former residential SUD treatment clients. Diversity and respect for different cultures was the most frequently selected domain (29%), followed by integration of care (26%), emotional support (26%), and individualization of care (26%). Provision of information was the least frequently chosen domain (3%). Race and ethnicity were not predictive of selecting respect for diversity. Also, parental status, relationship status and gender were not predictive of selecting family integration. Employment and housing status were not predictive of selecting transitional services.ConclusionsWhile residential SUD treatment facilities should seek to implement PCC across all domains, our results suggest facilities should prioritize (a) operationalizing diversity, (b) integration of care, and (c) emotional support. Significant heterogeneity exists regarding PCC domains deemed most important to clients. PCC domains valued by clients cannot be easily predicted based on client demographics.

Project description:BackgroundMental health care (MHC) needs to shift towards person-centered care to better meet people's individual needs. Open Dialogue (OD) is well-aligned with this perspective and brings it into practice. This study focuses on exploring the change process within a pilot project involving three MHC teams as they transition to a person-centered OD practice. Our aim is to identify and reflect on the challenges faced by MHC professionals in adopting person-centered care, and shedding light on the underlying complexity of these challenges. By gaining a better understanding of these obstacles, we hope to contribute to the adoption of the person-centered approach in MHC practice.MethodsOur research employed a qualitative design, involving a total of 14 semi-structured interviews with MHC professionals who were either trained in OD, OD trainees, or MHC professionals without OD training. To analyze the data, we utilized a hybrid approach that combined deductive - and inductive thematic analysis.ResultsWe identified four distinctive challenges: (1) understanding and knowledge transfer, (2) (inter)personal process, (3) emotional discomfort, and (4) the need for multi-stakeholder participation and support. In practice, these challenges intersect and the appearance of and relationships between these challenges are not linear or disentangleable.ConclusionUpon careful consideration of these interdependent challenges, it became evident that embedding a person-centered approach like OD brings about systemic change, leading to an unfamiliar situation X. The research findings indicated that understanding and conveying the concept of person-centered care in practical settings poses significant challenges. The field of knowledge management helps to capture the complexity of understanding and transferring this knowledge. The change process necessitates an (inter)personal process and elicits emotional discomfort, as person-centered OD practice confronts a deeply entrenched paradigm in MHC. Achieving a shared understanding of person-centered care requires dedicated time and attention, while introducing this approach prompts broader discussions on underlying values and human rights in MHC. Current implementation efforts may underestimate or overlook these underlying values, but initiating an open dialogue can serve as an initial step in addressing the complexities.

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Zoning in on parents' needs: understanding parents' perspectives in order to provide person-centered care.

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Zoning in on parents' needs: understanding parents' perspectives in order to provide person-centered care.

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