Perceptions Of Family-centred Care Research Articles

Competing Tensions: Nurse Perceptions of Family-Centered Care and Parents' Needs in Neonatal Care.

Family-centered care is founded upon collaboration between parents and healthcare professionals, caring for a child and parents as one entity. The unfamiliar neonatal environment and complexity of care can make family-centered care challenging. To explore neonatal nurses' perceptions of family-centered care and parents' cultural needs. This was a qualitative descriptive study using interviews to gather data from registered nurses, and analyzed using inductive content analysis. Ten neonatal nurses participated in online interviews, lasting an average of 25 minutes. Parents' cultural needs were poorly understood and assumed synonymous with family-centered care. While all acknowledged the importance of family-centered care, most described tasks to parent-infant bonding, rather than a broader embodiment of family-centered care. In time of uncertainty, emergent clinical priorities took priority over a family-centered approach to care. Cultural care was poorly understood, and care tasks associated with supporting parent-infant bonding suggest further work is necessary to promote embodiment of family-centered care beyond individual tasks. While emergent clinical priorities and neonate well-being will always be the priority, finding a way to respond that concords with the ethos of family-centered care is also essential. Clear and consistent leadership is needed to demonstrate greater embodiment of family-centered care, which includes cultural care for parents. Strong leadership and targeted education are key to supporting this change. Further research is warranted to examine and observe practice, in particular how parents' cultural needs are assessed and integrated into family-centered care in neonatal settings.

Factors associated with companions’ perceptions of family-centered care in pediatric units

Objective To describe the perceptions of companions regarding Patient and Family-Centered Care, and to analyze their association with sociodemographic variables and hospitalization locations during the COVID-19 pandemic. Methods This analytical, cross-sectional study was conducted in the neonatal and pediatric units of a public hospital between May and October 2021. Data were collected over a period of 30 days in four units, using the Brazilian version of the Family-Centered Care Perception Instrument for Parents. Results Ninety-four companions participated. The perception of Patient and Family-Centered Care was predominantly positive, with an average total score of 3.21. The highest-scoring domain was respect, followed by collaboration and support. Conclusion Family members generally perceived the care as family-centered and positive. Identified areas for improvement include professional identification, managing high staff turnover, enhancing team knowledge about family support, and including other family members in the care process.

Family-Centered Care Across Thai Neonatal Intensive Care Units

Background: Implementing family-centered care (FCC) presents challenges to parental-healthcare provider partnership and collaboration in newborn care in neonatal intensive care units (NICUs). Aims: To explore NICU nurses' perceptions of FCC (respect, collaboration, and support) during the COVID-19 pandemic and to compare these between nurses working in secondary and tertiary/higher care settings. Methods: A multicenter, cross-sectional exploratory online survey design study was conducted to identify Thai NICU nurses' perceptions. The online survey of the Perceptions of Family-Centered Care—Staff (PFCC-S) was distributed via a Web page and professional networks between July and September 2022. Results: Of the 187 survey respondents, most NICU nurses worked in the NICU for less than 16 years and were employed in tertiary care/higher care settings in southern Thailand. There was a significant difference in perceptions of support subscale between NICU nurses in secondary (mean: 3.32, SD ± 0.53) and tertiary/higher care settings (mean: 3.17, SD ± 0.46) (P < .05). Conclusion: Despite the challenges of the visitation restriction of COVID-19 in Thailand, nurses' perceptions of the value of FCC were maintained. Relevance to Clinical Practice: Further research is recommended to investigate how FCC can be implemented where there is a lack of material and infrastructure resources and staff shortage.

Psychometric Validation of the Korean Version of the Family-Centered Care Questionnaire-Revised.

Background and Purpose: Family-centered care (FCC) is a philosophy of care that applies to all areas of pediatric nursing and is a key component of the care model for patient safety and management activities in the medical environment of hospitalized children. The aim of this study was to translate and evaluate the psychometric properties of the Korean version of the Family-Centered Care Questionnaire-Revised (FCCQ-R). Methods: A total of 239 questionnaires were completed by pediatric nurses at 4 consenting general hospitals. Results: Fourteen items were removed from the original questionnaire through exploratory factor analysis and nine subscales were reduced to five. The factor loadings of the 30 items on the 5 subscales ranged from 0.50-0.80. The model of the Korean version of the questionnaire was validated by an exploratory and confirmatory factor analysis. Reliability analysis for internal consistency showed an acceptable to high Cronbach's α of 0.96 in total and the subscales ranged from 0.59-0.92. Conclusions: This study verified the validity and reliability of the tool to measure the perception of FCC. Future research will need to correlate FCC with more relevant measures, such as the nurse-parent partnership measure tool, to confirm predictive and concurrent validity. The Korean version of the FCCQ-R of 30 questions on 5 subscales is a valid and reliable measurement of Korean nurses' perceptions of FCC.

The perceptions and performance of family-centered care among pediatric nurses at a children's hospital in South Korea: a descriptive study.

This study aimed to examine pediatric hospital nurses' perceptions and performance of family-centered care. A descriptive study design was used. This study surveyed 162 nurses who worked at a single tertiary children's hospital in South Korea. The modified Family-Centered Care Scale was used to assess nurses' perceptions and performance of family-centered care. Barriers to the implementation of family-centered care were described in an open-ended format. Pediatric hospital nurses had a higher score for perceptions (mean score=4.07) than for performance (mean score=3.77). The collaboration subscale had the lowest scores for both perceptions and performance. The perceptions of family-centered care differed significantly according to the nurses' clinical career in the pediatric unit and familiarity with family-centered care, while performance differed according to clinical career only. Perceptions and performance were positively correlated (r=.594, p<.001). Barriers to implementation included a shortage of nursing personnel, a lack of time, and the absence of a family-centered care system. To improve the performance of family-centered care, nurses' perceptions of family-centered care should be improved by offering education programs and active support, including sufficient staffing, and establishing systems within hospitals.

Practices and Perceptions of Family-Centered Care: A Cross-Sectional Survey of Secondary School Athletic Trainers

Family-centered care (FCC) includes collaboration between families and healthcare providers, the creation of flexible policies, and the family taking an active role in the delivery of care. Secondary school athletic trainers provide care for underage patients in school-based health systems, making them responsible for maintaining communication with parents, guardians, and/or caregivers. This cross-sectional survey investigated the extent to which athletic trainers (n = 205) include aspects of FCC in their daily secondary school clinical practice (current practices = CP) and whether they believe that aspect of care is necessary for FCC to be provided in athletic training (perceived necessary = PN) in their everyday practice using the Family-Centered Care Questionnaire-Revised tool. The total mean score for the CP scale (mean = 26.83 ± 4.36) was significantly lower (p ≤ 0.01) than the PN scale (mean = 35.33 ± 4.17). All FCC subscales compared between CP and PN were significantly different (p ≤ 0.01), with each being of higher importance than CP in athletic training. Data analysis revealed four themes related to enhancing FCC in secondary schools: limited education and resources, staffing and space concerns, non-technical skills, and social determinants of health. Attention should be placed on developing resources and interventions for secondary school athletic trainers to collaboratively work with children and their support systems.

Family-centred care and breastfeeding self-efficacy determined how ready mothers were for their infants to be discharged from a neonatal intensive care unit.

We examined if a range of factors were associated with how ready mothers were for their infants to be discharged from a neonatal intensive care unit (NICU). This was a secondary analysis of a study on the well-being of mothers whose infants were hospitalised in the level 3 NICU at the Jewish General Hospital in Canada. We studied 132 mother-infant dyads: 70 from an open ward NICU and 62 from the purpose-built NICU with pods or single-family rooms that replaced it in 2016. The mothers completed a questionnaire on NICU stress and their perceptions of family-centred care on enrolment and another on breastfeeding self-efficacy and readiness to go home a week before discharge. The infants' characteristics were retrieved from the medical files. The infants were born at a mean age of 29.8 ± 3.1 weeks. Greater family-centred care during early hospitalisation (p=0.01) and greater breastfeeding self-efficacy in the period before discharge (p=0.04) were significantly associated with higher readiness for discharge. The unit design was not significantly associated with readiness for discharge. The quality of early family-centred care and breastfeeding self-efficacy were significantly associated with how ready mothers were for their preterm infant to be discharged from the NICU.

O58 - Symptoms of depression in parents after discharge from NICU associated with family-centred care

In 2018 to 2020, a multicentre cohort study was conducted in 23 NICUs across 15 countries. The aim of this study was to examine the potential association of family-centred care as perceived by parents during a NICU stay with parents’ depressive symptoms at discharge and at 4 months corrected for infant age. Parents ( n = 635 mothers, n = 466, fathers) of infants ( n = 739) born before 35 weeks of gestation and admitted to the participating NICUs were enrolled to the study during the first weeks of their infants’ hospitalisations. Parents’ perception of family-centred care in the NICU was assessed using the Digi-FCC (parent-version) tool with daily text messages and a questionnaire at discharge. Parent’s perception of depressive symptoms was also assessed using the Edinburgh Depression Scale: first at discharge and secondly when infants reached 4-months of corrected age. After controlling for gestational age, multiple birth, parent education and relationship status: an association was found between mothers’ and fathers’ perception of family-centred care, and their depressive symptoms at and after discharge. Parent perceptions of family-centred care was influenced by their ability to participate and make decisions about infant care, by the emotional support provided by staff members, and by other factors such as parental amenities and unlimited access for parents and significant others. Our study shows that family-centred NICU care associates with parents’ depressive symptoms after a NICU stay. Depression is common in parents of preterm infants. The provision of family-centred care may protect the mental well-being of parents of preterm infants.

Contextual factors influencing parents' assessments of family-centred care in the paediatric emergency department: Aqualitative study.

To identify the contextual factors influencing parents' assessments of the family-centredness of care received during a paediatric emergency department visit. A qualitative cross-sectional case study. We interviewed parents who were at their child's bedside during an emergency department encounter. We independently coded the first 3 transcripts and met to discuss the coding structure and to refine existing codes, add new codes and develop tentative categories. We repeated this process for every 3-5 transcripts until thematic saturation was reached. We conducted 16 interviews and identified 2 themes: (1) Not all parents expected physicians to provide family-centred care in the emergency department and (2) feeling overwhelmed and powerless influenced parents' perceptions of family-centred care. Poor family-centred care worsened parents' sense of powerlessness and reinforced parents' low expectations from physicians. Similarly, low expectations and powerlessness exacerbated poor family-centred care. Interventions are needed to break this cycle and improve family-centredness of care.

Nurses' Perception of Preterm Infants' Pain and the Factors of Their Pain Assessment and Management.

In the neonatal intensive care unit, preterm infants undergo many painful procedures. Although these can impair their neurodevelopment if not properly managed, only half of the painful procedures are optimally handled. This cross-sectional study aimed to evaluate nurses' perceptions of preterm infants' pain, to evaluate nurses' pain assessment and management practices, as well as to identify the individual and contextual factors that influence nurses' assessments and interventions for pain management. Secondary analyses, including a mixed-model analysis, were performed with data from a larger study (n = 202 nurses). Nurses were found to have attitudes and perceptions in favor of preterm infants' pain management, although they reported using few standardized instruments to assess pain. Nurses stated that they widely used sucrose, non-nutritive sucking, and positioning as pain management interventions, while skin-to-skin contact was rarely practiced. Nurses' attitudes and perceptions influenced their pain assessment practices, which predicted their implementation of interventions. Several contextual (country, level of care, and work shift) and individual factors (age, level of education, had a preterm infant, perceptions of family-centered care, and skin-to-skin contact) also predicted nurses' pain assessment and management practices.

Psychometric Properties of an Instrument to Measure the Quality of Family-Centered Care in NICUs

ObjectiveTo examine the psychometric properties of the Digi Family-Centered Care–Parent Version (DigiFCC-P), which was developed to measure parents’ perceptions of family-centered care (FCC) in NICUs. DesignCross-sectional psychometric study. SettingTwenty-three NICUs in 15 countries in Europe, Canada, and Australia. ParticipantsMothers (n = 565) and fathers (n = 406) of preterm infants hospitalized in NICUs. MethodsParticipants reported their perceptions of the quality of FCC during their infants’ hospitalizations by answering one DigiFCC-P question delivered to their mobile phones every evening. Nine questions rotated in random order. Participants responded on a 7-point Likert scale. We evaluated the instrument’s internal consistency, construct and concurrent validity, and sensitivity. ResultsThe internal consistency of the DigiFCC-P was satisfactory; the Cronbach’s alpha coefficient was .74 (95% confidence interval [.71, .77]), and all the corrected item–total correlations were greater than .30. We identified that the items formed two factors, support from staff and the parent’s active participation, and observed no strong item cross-loadings on the two factors. We discovered some items with weak interitem correlations, and the two factors explained 35.2% of the variance. Scores on the DigiFCC-P and Family-Centered Care Questionnaire were significantly correlated (r = .59, p < .001) and supported the convergent validity of the instrument. In addition, changes were discovered in the participants’ ratings over time, which indicated that the instrument was sensitive to detect changes in their evaluations. ConclusionThe psychometric testing of the DigiFCC-P provided initial support for the convergent validity and reliability of the instrument. The instrument was also sensitive in detecting changes in the evaluations of FCC over time. However, there is a need for further development of the content validity of the instrument.

Symptoms of depression in parents after discharge from NICU associated with family-centred care.

AimsThe aim of this study was to examine the potential association of family‐centred care as perceived by parents during a NICU stay with parents’ depressive symptoms at discharge and at 4 months corrected for infant age.DesignA longitudinal, multicentre cohort study was conducted from 2018 to 2020 in 23 NICUs across 15 countries.MethodsParents (n = 635 mothers, n = 466, fathers) of infants (n = 739) born before 35 weeks of gestation and admitted to the participating NICUs were enrolled to the study during the first weeks of their infants’ hospitalizations. They responded to Digi‐FCC daily text messages inquiring about their perception of family‐centred care provided by NICU staff. In addition, they completed a questionnaire assessing their overall perception of family‐centred care at discharge. Parents’ depressive symptoms were measured by the Edinburgh Postnatal Depression Scale at discharge and again after discharge when their infants were at 4 months corrected for age.ResultsThe mothers’ and the fathers’ perceptions of family‐centred care were associated with their depressive symptoms at discharge and at 4 months corrected age, controlling for gestational age, multiple birth, parent education and relationship status. Parents’ participation in infant care, care‐related decisions and emotional support provided to parents by staff explained the variation in the parents’ perceptions of family‐centred care. The factors facilitating the implementation of family‐centred care included unlimited access to the unit for the parents and for their significant others, as well as amenities for parents.ConclusionsOur study shows that family‐centred NICU care associates with parents’ depressive symptoms after a NICU stay.ImpactDepression is common in parents of preterm infants. The provision of family‐centred care may protect the mental well‐being of parents of preterm infants.

Perceptions of family-centred care among caregivers of children with cerebral palsy in South India: An exploratory study.

Parental views and expectations about family-centred care (FCC) need to be understood for its successful implementation. Knowledge of caregiver's perceptions and needs, within their social and cultural context, forms the basis for effective health care partnerships with families. The purpose of this study was to explore perceptions about FCC among caregivers of children with cerebral palsy (CP) in South India. Fourteen caregivers of children with CP (aged 4-12 years) living in rural areas of the coastal region of Karnataka, India, participated in this qualitative study. Face-to-face semi-structured interviews were recorded and transcribed for analysis using the framework and hybrid approaches. Thematic mapping of the categories and themes was done to explore relationships about perceptions of FCC. Caregiver's life emerged inductively as a new theme highlighting caregiver's own physical and mental health, family roles and well-being, integrating the onus of care with household responsibilities, limited participation in personal activities and social isolation. The qualitative findings revealed the ubiquity of respectful and trusting relationships with health professionals while expressing paucity of coordinated comprehensive care, sporadic partnerships and opportunities for shared decision-making; desire for receiving specific information related to child's progress and prognosis; and general information on community resources and the need of empowerment and support groups. Our study has practical implications for the implementation of FCC within the South Indian context, by recognizing unique caregiver needs and expectations in sync with cultural perspectives towards childhood disability such as societal stigma, values and traditional beliefs; attitudes towards medical professionals; and life stressors and gender responsibilities.

The Relationship Between Parents' Perceptions of Family-Centered Care and Their Health Care Satisfaction

Aim: This study was conducted to determine the relationship between the perceptions of parents whose children are hospitalized about family-centered care provided in the hospital and their health care satisfaction and the factors affecting them. Methods: This descriptive study was conducted with parents (n=169) of children who were hospitalized in a university hospital in Turkey between May and July 2019. Data were collected with "Child and Family Information Form", "Family-Centered Care Scale" and "PedsQL Health Care Satisfaction Scale". Data were analyzed with descriptive statistics, Mann Whitney U, and Spearman correlation tests. Results: The mean age of the children was 6.86±5.63, 51.5% were male, 56.2% were hospitalized before and 88.2% of parents received information about the care and treatment of their children. There was a positive correlation between the parents’ Family-Centered Care Scale and PedsQL Health Care Satisfaction Scale scores and between the age of the children and age of the mother and the PedsQL Health Care Satisfaction Scale scores, the number of children and Family-Centered Care Scale scores of parents. A statistically significant difference was found between the child's previous hospitalization and median scores of the Family-Centered Care Scale, and between whether parents receive information about the care and treatment of their children and the median scores of the PedsQL Health Care Satisfaction Scale. Conclusion: In this study, as the family-centered care that parents expect was met, their health care satisfaction increased. As the age of children and mothers increased, parents' health care satisfaction increased. Health care satisfaction of parents who received information about treatment and care was found higher. Keywords: family-centered care, patient satisfaction, child, parents

Parent and interdisciplinary professional perceptions of family-centered care in Thai NICU: A qualitative study.

Family-centered care (FCC) has been successfully incorporated into daily practice in many neonatal intensive care units (NICUs) worldwide. However, the implementation of FCC in lower-resourced settings, such as Thailand, can be challenging and needs to be further explored. To identify parents' and interdisciplinary professionals' perceptions of FCC and to describe the opportunities to improve FCC in a Thai NICU. An exploratory qualitative approach was used. The data were collected through face-to-face, semi-structured, individual interviews based on an interview guide. This study was conducted before the outbreak of coronavirus disease 2019 (February 2020) in a hospital in southern Thailand. Inductive thematic analysis was used to analyse interview data. Participants were parents (n=9) and interdisciplinary professionals (n=8). The results revealed four key themes: (a) Recognizing and responding to individual families' different readiness and their rights and values, (b) working in a parent-interdisciplinary partnership to provide care, (c) lacking resources and motivation and (d) understanding of care requirements and providing help/sympathy. The interdisciplinary professionals accepted that FCC is necessary for clinical practice, but there are some challenges in the Thai NICUs context because of the system of health care delivery. The findings highlighted that interdisciplinary professionals often viewed parents' involvement as an obstacle to providing neonatal care. Further research is recommended to investigate how FCC is operationalized by interdisciplinary professionals and how hospital administrators can be supported to implement the FCC approach into clinical practice in Thai NICUs.

Parents' experience of family-centred care in the post-anaesthetic care unit during non-clinical delays: A qualitative study.

The qualitative exploratory descriptive study explored parents' experience of family-centred care during delayed transfer from a paediatric post-anaesthetic care unit to an inpatient ward. Data were collected in a tertiary children's hospital in Melbourne, Australia, using in-depth, semi-structured interviews. Participants (n = 15) were parents of children (n = 10, aged 6 months to 16years) delayed in a Stage 1 post-anaesthetic care unit for longer than 30min. Elements of the family-centred care framework guided thematic analysis, the core concepts of which are respect and dignity, information sharing, participation and collaboration. Respect and dignity was most often identified, expressed in three subthemes: (1) the caring behaviour of staff, (2) being present with their child and (3) a journey shared with other families. Information sharing was also common, illustrated through (1) being told information and (2) being heard. Participation, the third element of the framework, was infrequently identified by participants; however, parents of children under 6years of age alluded to contributing to their child's care. The final element, collaboration, was not identified in the study data. Only two of four elements of the family-centred care framework were common in parents' experiences: respect and dignity, and information sharing. 'Being with' their child emerged as a central concern for parents' perceptions of family-centred care.

Stakeholders’ perceptions of family-centred care in the intensive care unit: An associative group analysis

AimTo explore different stakeholders’ including nurses, health care professionals and family member’s perceptions of ideal family-centred care in an intensive care unit. Research design and methodsWe used a mixed method approach to identify perceptions of family-centred care with 60 stakeholders of equal numbers who voluntarily participated in the study. Data were collected over one month using an associative group analysis method. The responses were ranked, scored, thematically themed and weighted. SettingA 23 bed adult intensive care unit in an urban private hospital in South Africa. FindingsAccording to the stakeholders’ responses, ideal family-centred care should be built around communication based on expectations and engagement. In addition, the physical environment should allow for overall comfort and spiritual care must be incorporated. ConclusionStakeholders had similar perceptions on the main themes however; nuances of different perspectives were identified showing some of the complexities related to family-centred care. Spiritual care was highlighted by the family members, revealing the need to broaden the care perspectives of healthcare providers.

Nurses' Perceptions and Attitudes toward Family-Centered Care in Acute Pediatric Care Settings in Jordan

PurposePerceptions and attitudes toward working with parents may influence nurses' family-centered clinical care practices. There is a paucity of research measuring family-centered care among nurses working with children and their parents in Jordan. The purpose of this study was to explore nurses' perceptions of family-centered care by examining nurses' attitudes toward working with children and their parents, as well as toward family-centeredness. Also investigated was the extent to which the selected demographic characteristics of nurses explain the discrepancies between their child- and parent-focused attitudes. Design and methodsUsing a cross-sectional descriptive study, 246 nurses completed the ‘Working with families’ questionnaire. A paired t-test used to compare the working with children versus working with parents' attitude scores, and independent t-test and ANOVA to explore the influence of nurses' demographic characteristics attitude scores. ResultsThe nurses scored higher for working with children than with parents, suggesting more positive attitudes toward the former than the latter (p < 0.001). The family-centeredness scores varied with nurses' years of clinical experience (p < 0.001) and years of employment (p < 0.005). ConclusionsThe applicability of the family-centered care model in Jordan's hospitals is challenged by the fact that pediatric nurses register more positive attitudes for working with children than with parents. Practice implicationsNurses' attitude toward working with children's families requires more evaluation prior to implementing family-centered care in practice. Further research is needed to explore factors contributing to discrepancies between child- and parent-focused attitudes among nurses.

Service Providers’ Perception of Providing Family-Centered Care for Children with Developmental Disabilities: A Meta-Analysis

ABSTRACT Understanding service providers ‘ perceptions of family-centred care (FCC) is essential to improve the processes and outcomes of children’s services in early intervention. A systematic review and meta-analysis of the research on the Measure of Processes of Care-Service Provider (MPOC-SP) were performed to determine the extent service-providers of children with developmental disabilities perceive while they provided FCC. A comprehensive literature search was conducted on three databases. A total of 446 studies were retrieved, and 14 met the criteria of the current research. Meta-analysis for 2,094 service-providers of children with developmental disabilities that were included in 14 studies was conducted based on the four scales of the MPOC-SP. The aggregated means of the four factors of the MPOC-SP, showing interpersonal sensitivity, providing general information, communicating specific information, and treating people respectfully, is from 4.26 to 5.77. The result shows that treating people respectfully has the highest score while providing general information has the lowest one. Service providers are encouraged to focus on children’s and their families’ needs for general information. Further research on better understanding inter-professional service providers’ perspectives of providing family-centred care and engaging professionals in intervention processes are recommended.

Family-Centered Care: How Close Do We Get When Talking to Parents of Children Undergoing Diagnosis for Autism Spectrum Disorders?

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.