Family-centered Care Interventions Research Articles

Child and Family Outcomes and Experiences Related to Family-Centered Care Interventions for Hospitalized Pediatric Patients: A Systematic Review.

Family-centered care (FCC) is the recommended model for pediatric inpatient care. Our overall aim was to conduct a narrative synthesis of the contemporary published research on the effectiveness of FCC interventions for pediatric inpatients. Our specific objective was to critique studies of inpatient pediatric FCC interventions that evaluated child or parent outcomes. We searched five databases (Pubmed, CINAHL, Embase, PsychInfo, and Web of Science) for peer-reviewed research published from 1 January 2017 to 6 February 2024. Independent reviewers evaluated each study based on pre-specified inclusion and exclusion criteria, then extracted and narratively synthesized the data. We found 16 studies of 15 interventions conducted in six countries. The studies were quantitative (n = 11), qualitative (n = 3), and mixed methods (n = 2), with most designs being of low to moderate quality based on a modified Mixed-Methods Appraisal Tool. Interventions included family-centered rounds, parent-focused health information technology, education, patient navigation, parent-peer support, partnership, and parent participation in caregiving. Most studies found significant improvements in parents' well-being, knowledge, and participation, as well as decreased stress and anxiety with the FCC interventions compared to usual care. One study found no differences in child outcomes (infant feeding, length of stay) between usual care and a parent-participation intervention. Although FCC interventions led to many improved outcomes for parents, there were few well-designed comparison studies using validated tools and well-defined interventions. Higher quality research is needed to promote greater uptake and sustainability of FCC interventions globally.

Impact of family-centered Care on Parenting Role and Sense of Competence in Parents of Preterm Neonates: a quasi-experimental study

BackgroundImplementing a family-centered care approach can empower parents to care for their premature infants, positively influencing their sense of competence and parenting role. This study aims to investigate the impact of family-centered care within the context of newborn care on the sense of competence and parenting role of parents with preterm infants who were hospitalized in neonatal intensive care units (NICUs) in Iran. MethodsThis quasi-experimental study employed a design with two groups in neonatal intensive care units (NICUs) located in Kerman, Iran. The research sample consisted of 90 parents. The intervention group received training based on the principles of family-centered care and actively participated in caring for their infants in the intensive care unit. Both groups completed the Parenting Sense of Competence Scale and the Parenting Role Tasks Questionnaire before the intervention, seven days after the intervention, and three months after the intervention. ResultsFollowing the implementation of the family-centered care intervention, the experimental group exhibited a relatively higher increase in the sense of competence score (83.42±6.66) compared to the control group (57.60±9.45). Similarly, the experimental group had a higher mean parenting role score (87.95±6.45) than the control group (54.77±11.80). ConclusionThe study findings suggest that implementing the family-centered care program develops training packages based on the principles of family-centered care for nurses working in neonatal intensive care units. This training will help parents of hospitalized infants enhance their sense of competence and improve their parenting role.

Contents and effectiveness of patient- and family-centred care interventions in adult intensive care units: A systematic review.

The need and values of patient- and family-centred care (PFCC) have been globally increasing in the health care landscape. However, the concept of PFCC and the components in adult intensive care units (ICUs) remain wide-ranging. To elucidate the core concepts of PFCC interventions and evaluate the effects of the interventions in adult ICUs. We searched electronic databases (PubMed, Cochrane Central, CINAHL, EMBASE, PsycINFO, RISS, KMbase and KoreaMed) from inception to 20 June 2022, for all studies on PFCC interventions. Three authors independently conducted data screening and extraction. The core concepts and the effects of PFCC interventions in adult ICUs were examined. The effects of patient- and family-centred care interventions in adult ICUs were examined. The quality of the included studies was evaluated using the Mixed Methods Appraisal Tool. Overall, 3507 records were identified, and 14 full-text articles were assessed. Participants in the included studies were patients and/or their family members in adult ICUs. The main concepts of the studies were participation and information-sharing. Only two studies used collaboration as the main concept of intervention. PFCC interventions have shown positive outcomes for patients, including increased satisfaction, improvement of patient health status and reduced incidence of complications. They have also been beneficial for families, leading to higher satisfaction levels and decreased anxiety. Additionally, these interventions have positively impacted health care providers by enhancing satisfaction and improving rounding efficiency. Moreover, they have influenced health care utilization by decreasing hospital costs and length of stay. This review highlights the advantages of PFCC interventions for patients, families and health care providers in adult ICUs. Future research should focus on developing strategies to incorporate collaboration more comprehensively as a core concept in the implementation of PFCC interventions. Future research endeavours must prioritize collaborative efforts involving health care providers, patients and their families by deploying an array of strategies within the intensive care unit setting.

Effect of family-centered care interventions on well-being of caregivers of children with cerebral palsy: a systematic review.

Caring for a child with long-term functional limitations can have a negative impact on the physical and psychological well-being of the caregiver. Family-centered care (FCC) interventions have the potential to empower caregivers and contribute to their well-being. This systematic review aimed to synthesize existing evidence on the effectiveness of FCC interventions in improving the well-being of caregivers of children with cerebral palsy (CP), and identify the key components of such interventions that are most commonly practiced and deemed effective. This review systematically searched seven databases for randomized controlled trials that evaluated the effectiveness of any FCC intervention on the well-being of caregivers of children with or at risk of CP. We used the Cochrane RoB 2.0 tool to assess risk of bias and Critical Appraisal Skills Programme (CASP) checklist for critical appraisal. Due to high heterogeneity of studies, narrative synthesis was used to summarize the data. The review consists of 11 studies which were categorized into five sections based on the components of FCC intervention provided in each individual study: 1. Information provision, and Enabling and partnership (n= 5); 2. Information provision, and Respectful and supportive care (n= 1); 3. Enabling and partnership (n= 2); 4. Enabling and partnership, and Respectful and supportive care (n= 2); 5. Information provision, Enabling and partnership and Respectful and supportive care (n= 1). Risk of bias was low in four studies, unclear in two studies, and high in five studies. FCC interventions were found to be effective in improving caregivers' satisfaction with attainment of child and caregiver goals. Evidence from multiple studies does not strongly support the effectiveness of FCC interventions on caregiver's mental health, parenting and personal outcomes. Limited evidence precludes a conclusion on the effectiveness of the components of FCC on well-being of caregivers of children with CP.

Parental barriers to implementing family-centred care in a neonatal intensive care unit in Islamic Republic of Iran.

Studies have shown short-term and long-term positive effects of family-centred care interventions on neonatal and maternal health, and developmental outcomes in neonatal intensive care units. However, some challenges and barriers limit implementation of family-centred care. To investigate parental barriers to implementing family-centred care in a neonatal intensive care unit in Islamic Republic of Iran. A conventional content analysis was conducted at a neonatal intensive care unit in Tehran, Islamic Republic of Iran from 2020 to 2021. Twenty semi-structured interviews and 9 field notes were conducted. The interview data were analysed using the Graneheim and Lundman method and the demographic data were analysed using SPSS version 21. Two themes emerged from the data analysis. The first theme was "inefficiency of playing the parental role", with 2 main categories of "face unpleasant feelings" and "inappropriate presence and participation". The second theme was "ineffective involvement of parents in the care", with 3 main categories of "lack of effective communication with personnel", "interference of parents in the treatment process", and "given insufficient information by parents". Parental barriers to the provision of family-centred care featured prominently in the study. Therefore, to improve neonatal and family health, there is a need for involvement, coordination and effective communication between the medical teams and parents to create a supportive and friendly environment in neonatal intensive care units.

Factors influencing the development and implementation of pediatrics in family-centered care model: A scoping review

Introduction: Family-Centered Care (FCC) in neonatal healthcare emphasizes collaborative efforts between medical staff and families. This approach, rooted in mutual respect and active family participation, aims to enhance infant care outcomes. However, understanding the underlying forces behind FCC interventions remains challenging due to the diverse methods employed in healthcare practices. Methods: We conducted a scoping review in June 2023. We searched Embase, Medline, CINAHL, Web of Science, Cochrane Library, Joanna Briggs Institute (JBI), PubMed, and PsycINFO. Inclusion criteria encompassed English language studies on Family-centered care and related factors, without date or geographic restrictions. Results: Fifteen pertinent studies meeting the inclusion criteria were identified. Five pivotal components of modern FCC emerged: effective communication, active patient and family involvement, robust family support systems, organizational considerations, and the nurturing attitude of nurses. Discussion: Family-centered care emerges as a comprehensive healthcare approach focusing on the interdependence of patients, healthcare professionals, and families. By recognizing this interconnection, FCC seeks to ensure the satisfaction and well-being of all stakeholders. Implementing FCC strategies presents challenges, emphasizing the need for continuous exploration and refinement. Conclusion: Embracing family-centered care principles enriches patient-centered healthcare by involving families as active partners in the care process. Acknowledging the integral role of families enhances care quality and contributes to improved patient outcomes. Ongoing research and dialogue are essential for refining FCC models, ensuring successful implementation, and fostering patient-centered healthcare environments.

Family-centred care interventions for children with chronic conditions: A scoping review.

Children with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers are interested in developing interventions to improve family-centred care need information about the characteristics of existing interventions, their developmentand the domains of family-centred care that they address. We conducted a scoping review that aimed to identify and characterize recent family-centred interventions designed to improve experiences with care for children with chronic conditions. We searched Medline, Embase, PsycInfoand Cochrane databases, and grey literature sources for relevant articles or documents published between 1 January2019 and 11 August2020 (databases) or 7-20October2020 (grey literature). Primary studies with ≥10 participants, clinical practice guidelinesand theoretical articles describing family-centred interventions that aimed to improve experiences with care for children with chronic conditions were eligible. Following citation and full-text screening by two reviewers working independently, we charted data covering study characteristics and interventions from eligible reports and synthesized interventions by domains of family-centred care. Our search identified 2882 citations, from which 63 articles describing 61 unique interventions met the eligibility criteria and were included in this review. The most common study designs were quasiexperimental studies (n = 18), randomized controlled trials(n = 11)and qualitative and mixed-methods studies (n = 9 each). The most frequently addressed domains of family-centred care were communication and information provision (n = 45), family involvement in care (n = 37)and access to care (n = 30). This review, which identified 61 unique interventionsaimed at improving family-centred care for children with chronic conditions across a range of settings, is a concrete resource for researchers, health care providersand administrators interested in improving care for this high-needs population. This study was co-developed with three patient partner co-investigators, all of whom are individuals with lived experiences of rare chronic diseases as parents and/or patients and have prior experience in patient engagement in research (I. J., N. P., M. S.). These patient partner co-investigators contributed to this study at all stages, from conceptualization to dissemination.

The Impact of Artificial Intelligence and Deep Learning-Based Family-Centered Care Interventions on the Healing of Chronic Lower Limb Wounds in Children

The Impact of Artificial Intelligence and Deep Learning-Based Family-Centered Care Interventions on the Healing of Chronic Lower Limb Wounds in Children

An exploration of the cultural appropriateness of the family-centered function-focused care intervention.

The Family-centered Function Focused Care (Fam-FFC) intervention, is a nurse-family care partnership model aimed to improve the physical and cognitive recovery in hospitalized persons living with Alzheimer's Disease Related Dementias (ADRD) while improving the care partner's experiences. Discussions of patients' needs and preferences between nurses and the patient's close family members have been found to be useful in preventing excessive stress in persons with dementia, while lessening the anxiety of care partners. However, the efficacy of dementia-specific interventions is influenced in part by the degree to which the interventions are flexible and sensitive to the patient's and care-partner's condition, needs, and preferences, including cultural preferences. Therefore, the purpose of this study is to assess the cultural appropriateness of Fam-FFC using the Ecological Validity Model (EVM). This qualitative, descriptive study included 28 consented care partners drawn from a sample of 455 dyads enrolled in the Fam-FFC intervention. An interview guide was created based on the EVM. Participants provided demographic data. Thematic analysis was conducted to analyze transcribed interviews. The majority of the sample was female (79%), Non-Hispanic (96%) and half were married. One-half of the sample represented Black care partners and one-half were White. Seventy-nine percent lived with their family member with ADRD. Three major themes were identified from the thematic analysis including Care Partner Identity, Care Partner Preferences, and Goals of Care for functional recovery of their family member living with dementia. In this study care partners wanted more social services as well as home care that supported not just physical needs but also social and recreational needs. Findings from the study offer guidance on improving the Fam-FFC intervention including strengthening education and resources on partner self-care.

The moderating effects of nurses' background characteristics on the relationship between family-centred care perception and practice for hospitalized children and their families in Malawi

PurposeGlobally, limited information is available on the relationship between the perception and practice of family-centered care (FCC), and the moderating effects of nurses' background characteristics on this relationship. This study investigated the relationship between FCC perception and FCC practice and the moderating effects of the nurses' background characteristics on this relationship. Design and methodsA cross-sectional study was conducted using a two-stage stratified sampling method. Data were collected from 444 nurses using the Family Centered Care Questionnaire-Revised and analyzed using IBM SPSS Version 25. The Hayes PROCESS macro model, version 3, was integrated into SPSS to examine the moderating effects at a significance level of 0.05. ResultsThe response rate was 98%, and a statistically significant positive association was found between FCC perception and FCC practice (r = 0.353, p < .001). Gender of a nurse (ΔR2 = 0.0206, p < .002), having children (ΔR2 = 0.0231, p < .001), experience (ΔR2 = 0.0107, p = .028), and working in a medical–surgical ward (ΔR2 = 0.0208, p = .008) had a statistically significant moderating effect on the relationship between FCC perception and FCC practice. ConclusionThese findings provide minimal evidence of the existence of non-modifiable moderators of FCC. Future studies with modifiable moderators are therefore needed. Practice implications: Understanding the moderating effects of nurses' background characteristics on the relationship between FCC perception and FCC practice may facilitate the development of FCC interventions that favor these background characteristics and facilitate the integration of FCC into routine policies and practices.

Application of Trauma-Informed Care Principles to Care Needs Identified by Mothers of NICU-Hospitalized Children

Systematic uptake of family-centered care (FCC) interventions remains challenging and frequently suboptimal in many neonatal intensive care units (NICUs). Across NICUs in the United States, integrating family members as partners in infant caregiving and decision-making has not been well supported and routine screening and provision of psychological support for parents remains inadequate. Trauma-informed care (TIC) may offer a more comprehensive approach to NICU care which can encompass FCC principles and promote family recovery and resilience by recognizing and responding to the traumas experienced by NICU infants and families. The current paper aimed to understand needs identified by mothers of NICU-hospitalized children and reports a focused analysis of one-on-one interview data (n = 13 mothers) collected during a larger mixed methods study. Reflexive thematic analysis was used to understand needs identified by mothers and to explore how these needs aligned with TIC principles. Six themes were identified and subsequently examined in the context of the principles of TIC: I Just Had No Control, That Really Caught Us Off Guard, So Much Was Already Taken Away, We’re People and There Needs To Be More Support and Practices Which Helped. Mothers’ care needs were found to align with TIC principles. Findings suggest that implementation of TIC principles in NICU settings can support parental presence, participation in infant care, and mental health and support the potential of TIC as a more comprehensive approach to meeting the needs of NICU parents.

Multidimensional assessment of infant, parent and staff outcomes during a family centered care enhancement project in a tertiary neonatal intensive care unit: study protocol of a longitudinal cohort study

BackgroundThe therapeutic advances and progress in the care for preterm infants have enabled the regular survival of very immature infants. However, the high burden of lifelong sequelae following premature delivery constitutes an ongoing challenge. Regardless of premature delivery, parental mental health and a healthy parent–child relationship were identified as essential prerogatives for normal infant development. Family centered care (FCC) supports preterm infants and their families by respecting the particular developmental, social and emotional needs in the Neonatal Intensive Care Unit. Due to the large variations in concepts and goals of different FCC initiatives, scientific data on the benefits of FCC for the infant and family outcome are sparse and its effects on the clinical team need to be elaborated.MethodsThis prospective single centre longitudinal cohort study enrols preterm infants ≤ 32 + 0 weeks of gestation and/or birthweight ≤ 1500 g and their parents at the neonatal department of the Giessen University Hospital, Giessen, Germany. Following a baseline period, the rollout of additional FCC elements is executed following a stepwise 6-months approach that covers the NICU environment, staff training, parental education and psychosocial support for parents. Recruitment is scheduled over a 5.5. year period from October 2020 to March 2026. The primary outcome is corrected gestational age at discharge. Secondary infant outcomes include neonatal morbidities, growth, and psychomotor development up to 24 months. Parental outcome measures are directed towards parental skills and satisfaction, parent-infant-interaction and mental health. Staff issues are elaborated with particular focus on the item workplace satisfaction. Quality improvement steps are monitored using the Plan- Do- Study- Act cycle method and outcome measures cover the infant, the parents and the medical team. The parallel data collection enables to study the interrelation between these three important areas of research. Sample size calculation was based on the primary outcome.DiscussionIt is scientifically impossible to allocate improvements in outcome measures to individual enhancement steps of FCC that constitutes a continuous change in NICU culture and attitudes covering diverse areas of change. Therefore, our trial is designed to allocate childhood, parental and staff outcome measures during the stepwise changes introduced by a FCC intervention program.Trial registrationClinicaltrials.gov, trial registration number NCT05286983, date of registration 03/18/2022, retrospectively registered, http://clinicaltrials.gov.

Effect of family-centered care interventions on well-being of caregivers of children with cerebral palsy: a systematic review

Background: Caring for a child with long-term functional limitations can have a negative impact on the physical and psychological well-being of the caregiver. Family-centered care (FCC) interventions have the potential to empower caregivers and contribute to their well-being. This systematic review aimed to synthesize existing evidence on the effectiveness of FCC interventions in improving the well-being of caregivers of children with cerebral palsy (CP), and identify the key components of such interventions that are most commonly practiced and deemed effective. Methods: This review systematically searched seven databases for randomized controlled trials that evaluated the effectiveness of any FCC intervention on the well-being of caregivers of children with or at risk of CP. We used the Cochrane RoB 2.0 tool to assess risk of bias and Critical Appraisal Skills Programme (CASP) checklist for critical appraisal. Due to high heterogeneity of studies, narrative synthesis was used to summarize the data. Results: The review consists of 11 studies which were categorized into five sections based on the components of FCC intervention provided in each individual study: 1. Information provision, and Enabling and partnership (n= 5); 2. Information provision, and Respectful and supportive care (n= 1); 3. Enabling and partnership (n= 2); 4. Enabling and partnership, and Respectful and supportive care (n= 2); 5. Information provision, Enabling and partnership and Respectful and supportive care (n= 1). Risk of bias was low in four studies, unclear in two studies, and high in five studies. Conclusion: FCC interventions were found to be effective in improving caregivers’ satisfaction with attainment of child and caregiver goals. Evidence from multiple studies does not strongly support the effectiveness of FCC interventions on caregiver’s mental health, parenting and personal outcomes. Limited evidence precludes a conclusion on the effectiveness of the components of FCC on well-being of caregivers of children with CP.

Developing a Burn-Specific Family-Centered Care (BS-FCC) Framework: A Multi-Method Study

A burn has been described as a family injury warranting the delivery of family-centered care (FCC) across the continuum of burns management. This assertion notwithstanding, only limited progress has been made to develop and implement FCC interventions in the burn unit. As a starting point, this study sought to formulate a tentative framework to underpin FCC in burn care. A multi-method design comprising an umbrella review and the secondary data analysis of qualitative datasets was employed. Following these, the findings were merged and aligned to the Universal Model of FCC to formulate the burn-specific FCC framework. For the umbrella review, four review articles met the criteria for inclusion. Following a data synthesis of the review findings and their integration with the qualitative dataset, four meta-themes that encapsulate the shared needs/concerns of family members of both pediatric and adult burn survivors emerged: (1) psychosocial concerns, (2) issues relating to role changes, (3) logistical concerns, and (4) requiring information. These issues were mapped to the following components of the Universal Model of FCC: family support, education, collaboration, and communication. All these are underpinned by dedicated policies, procedures, and consideration of the family context. Testing and further empirical work are needed to refine and implement the framework across the continuum of burn management.

Treatment Fidelity of the Family-Centered Function-Focused Care Intervention.

The purpose of the current study was to evaluate treatment fidelity (i.e., the extent to which an intervention is provided as intended) in the Family-Centered Function-Focused Care (Fam-FFC) intervention. This was a descriptive study using data collected during intervention activities throughout the course of the Fam-FFC study. Specific measures included Environment and Policy Assessments, Fam-FFC Knowledge Test, Goal Attainment Scale, Function-Focused Care Behavior Checklist, and completion of the FamPath Audit. Delivery was provided as intended. Staff demonstrated intervention skills with only one Fam-FFC research nurse needing retraining. Receipt was based on Fam-FFC Knowledge Test scores >80%, with the majority of participants reporting goal achievement as expected or higher than expected and slight improvement in environments and policies to better support Fam-FFC. Lastly, enactment was based on evidence that in 67% of observations staff provided at least one function-focused care intervention. Findings from this study will be used to adapt the intervention to reach all staff, increase ways to change environments and policies, consider ways to more comprehensively evaluate enactment of function-focused care during real-world interactions, and consider the characteristics of nursing staff and whether a relationship exists between staff characteristics and providing function-focused care. [Research in Gerontological Nursing, 16(4), 165-171.].

Validation of post-traumatic growth inventory in mothers with the experience of having the NICU-Hospitalized newborns "validation of post-traumatic growth inventory".

Investigating post-traumatic growth (PTG) in mothers with the experience of having a preterm newborn hospitalized in the NICU requires a valid tool. This study aims to determine the validity and reliability of the Farsi version of the post-traumatic growth inventory (PTGI) in mothers with the experience of having their newborns hospitalized in the NICU. This study was methodological research. In this study, 250 mothers who had newborns with a history of NICU hospitalization during the last 3 to 12 months and had visited paediatric clinics of the selected hospitals in Tehran with the aim of having their children's condition examined were selected through convenience sampling. The data were collected using a demographic information questionnaire and PTGI. The face validity, the construct validity (confirmatory factor analysis), and the internal consistency reliability of the inventory were measured using SPSS V22 and LISREL V8.8. According to appropriate values for factor analysis fit indices (FI = 0.94, RMSEA = 0.07, IFI = 0.94, NFI = 0.93, RFI = 0.91, NNFI = 0.93, SRMR = 0.07), 21 items and 5 factors were confirmed for this inventory. Furthermore, Cronbach's alpha coefficient of this inventory was measured as α = 0.94. According to favourable psychometric properties, the Farsi version of PTGI is a suitable tool for studying PTG in mothers with the experience of having preterm newborns in the NICU. Using PTGI can help nurses in planning family-centered care interventions to reduce the impact of the mental trauma caused by the preterm newborn's hospitalization in parents. Mothers who had newborns with a history of NICU hospitalization during the last 3-12 months.

Effects of Patient and Family-Centered Care on Quality of Care in Pediatric Patients: A Systematic Review

Background: Patient and family-centered care is one approach that is applied in pediatric care in various hospital settings to improve the quality of care. However, information related to the results of the entire study and its intervention model has not been identified effectively in child health care.Purpose: This study aimed to describe and assess the effects of patient and family-centered care on the quality of care in pediatric patients.Methods: A systematic review was used as a method in this study. Seven databases were used, including ScienceDirect, Scopus, ProQuest, EBSCO, Sage Journal, Tailor and Francis, and PubMed to search the literature for relevant published reviews that determined patient and family-centered care interventions between 2011 and 2021. The synthesis without meta-analysis guidelines was used to analyze the data in this review. The data were further analyzed by critically assessing the quality of the articles using the JBI and CASP checklists.Results: From a total of 29.780 articles identified, fifteen articles were included in this review. Several models of patient and family-centered care interventions were identified, such as family-centered care, family-centered communication program, family-integrated care, family nurture intervention, family empowerment, parent participation, close collaboration, mother-nurse partnership program, and the newborn individualized developmental care and assessment program. From those models, the outcomes for quality of care were related to the pediatric quality of life, length of stay, patient safety, parent satisfaction, parent psychological response, and parent involvement and partnership with staff.Conclusion: The shreds of evidence indicate that patient and family-centered care can improve the quality of care in the pediatric patients. It is recommended that patient and family-centered care can be implemented in pediatric care by increasing the participation of family during treatment.

Family-centred interventions for Indigenous early childhood well-being by primary healthcare services.

Family-centred interventions for Indigenous early childhood well-being by primary healthcare services.

"I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care.

In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer. We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers. We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping. 40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer's disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home. Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.

Understanding and Enhancing Occupational Therapists' Use of Standard Family-Centered Measures.

The use of standard family-centered measures (FCMs) is imperative to guide family-centered care (FCC) interventions and monitor their outcomes. To measure the frequency of FCM use and evaluate the effectiveness of experiential learning and reflection to increase their use. Descriptive and two-group pre-post comparative training study. Continuing education center. Phase 1 included 145 health care providers. Phase 2 included 44 school-based occupational therapists who participated in Phase 1. Phase 2 participants enrolled in 30-hr FCC training that included a 2-hr workshop on FCM. One group (n = 22) conducted an FCM with a family and wrote a reflective report. All participants completed the Measure of Processes of Care-Service Provider (MPOC-SP) questionnaire and reported how frequently they used FCMs. FCM use rates were low (50%, not at all; 26%, to a very small extent). The extent of FCC was correlated with FCM use (r = .24-.30, p < .01). A Wilcoxon signed-rank test demonstrated that participants who administered an FCM with a family and reflected on this experience showed significant increases (Z = 176.0, p = .001) in FCM use compared with participants who were only instructed about available FCM. A Mann-Whitney U test confirmed the difference (U = 3.54, p = .012). FCM use is sparse, but experiential and reflective activities are simple keys to promoting FCC and integrating FCM into practice. What This Article Adds: Training designers, educators, and managers should consider integrating experiential learning to enhance providers' expertise and quality of care.