Family-centered Care Practices Research Articles

The story of Emily

This case study describes Bluewater Health’s quest to weave the philosophy and practice of patient and family-centered care from the boardroom to the bedside by introducing Emily. Emily’s image is a composite of photographs of staff, physicians, volunteers, patients and families exemplifying that each has a role in Emily’s care. Emily represents every patient and family of the past, present, and future. Emily’s journey started with the launch of Bluewater Health‘s 2013-2015 strategic plan and moved throughout the organization as patient councils were established and the organization embedded three foundational patient and family-centered RNAO Best Practice Guidelines into daily practice with the support of over 100 best practice champions. The successful implementation of RNAO’s best practice guidelines earned Bluewater Health designation as a Best Practice Spotlight Organization. The organization took a risk in introducing the notion of Emily knowing that Emily could become a cliche. No one was prepared for what has come to be known as “the Emily effect.” Emily’s effect is now being realized in increased patient satisfaction and improved employee engagement scores helping to deliver on our Mission, We create exemplary healthcare experiences for patients and families every time. Bluewater Health is a fully accredited, 326-bed community hospital that cares for the residents of Sarnia-Lambton, Ontario.

Creating Value with the Patient- and Family-Centered Care Methodology and Practice: What Trainees Need to Know, Why, and Strategies for Medical Education.

Implementing the six-step Patient- and Family-Centered Care Methodology and Practice would improve experiences and outcomes while decreasing costs.

Creating Value with the Patient- and Family-Centered Care Methodology and Practice: What Trainees Need to Know, Why, and Strategies for Medical Education

Creating Value with the Patient- and Family-Centered Care Methodology and Practice: What Trainees Need to Know, Why, and Strategies for Medical Education

Care of the Family of an Infant With a Congenital Heart Defect During the NICU Hospitalization.

The family of an infant born with a congenital heart defect is challenged by both the short- and long-term implications of the diagnosis and the neonatal intensive care unit (NICU) hospitalization. Nurses are in a key position to support these families as they deal with the psychological, emotional, and financial impact of the NICU experience. Understanding how families perceive the NICU environment and their grief in losing the desired healthy baby provides the NICU nurse with the knowledge to engage in self-reflection on her or his interpersonal style and caregiving attitudes. Utilizing the concepts and principles of family-centered care and relationship-based practice, nurses can work together with the families to determine how to best meet the families' needs and to find the resources to support them. Families and colleagues appreciate nurses who demonstrate expertise in this approach to family-centered care. This appreciation leads to greater job satisfaction and decreased job-related stress.

Patient- and Family-Centered Care: A Systematic Approach to Better Ethics and Care.

The Patient- and Family-Centered Care Methodology and Practice follows six steps to improve clinical results and accountability and to reduce costs.

The Parents', Hospitalized Child's, and Health Care Providers' Perceptions and Experiences of Family-Centered Care Within a Pediatric Critical Care Setting: A Synthesis of Quantitative Research.

Family-centered care (FCC) purports that unlimited presence and involvement of the family in the care of the hospitalized child will optimize the best outcome for the child, family, and institution. A systematic appraisal was conducted of peer-reviewed, English-language, primary quantitative research conducted within a pediatric critical care setting reported from 1998 to 2014. The aim of this review was to explore the parents', hospitalized child's, and health care providers' perception of FCC within pediatric critical care. Fifty-nine articles met the criteria that generated themes of stress, communication, and parents' and children's needs. This review highlighted that communication tailored to meet the parents' and child's needs is the key to facilitating FCC and positive health outcomes. Health care providers need to be available to provide clinical expertise and support throughout the health care journey. Future initiatives, education, and research are needed to evaluate the benefits of parent- and child-led FCC practice.

A short form of the neonatal intensive care unit family needs inventory

ObjectiveThe identification of parental needs in Neonatal Intensive Care Units is essential to design and implement family-centered care. This article aims to validate the Neonatal Intensive Care Units Family Needs Inventory for the Portuguese population, and to propose a Short Form. MethodsA linguistic adaptation of the Neonatal Intensive Care Units Family Needs Inventory, a self-report scale with 56-items, was performed. The instrument was administered to 211 parents of infants hospitalized in all level III Neonatal Intensive Care Units in the North of Portugal, 15–22 days after admission (July of 2013–June of 2014). The number of items needed to achieve reliability close to 0.8 was calculated using by the Spearman–Brown formula. The global goodness of fit of the scale was evaluated using the comparative fit index. Construct validity was assessed through association of each dimension score with socio-demographic and obstetric characteristics. ResultsExploratory factor analysis revealed two dimensions, one focused on parents’ needs and another on the infant's needs. To compose the Short Form Inventory, items with ceiling effect were eliminated and 22 items were submitted to confirmatory analysis, which supported the existence of two dimensions (CFI=0.925). The Short Form showed a high degree of reliability (alpha≥0.76). Less educated and older parents more frequently attributed a significantly higher importance to parent-centered needs, while parents of multiples revealed a tendency to value infant-centered needs. ConclusionsThe Short Form of the Neonatal Intensive Care Units Family Needs Inventory is a brief, simple, and valid instrument with a high degree of reliability. Further studies are needed to explore associations with practices of family-centered care.

Family-centered care practices in a multidisciplinary sample of pediatric professionals providing autism spectrum disorder services in the United States

Family-centered care (FCC) has not been studied extensively in the field of autism spectrum disorders (ASD), but has been highlighted as a critical component of practice with youth with ASD. The aim of this study was to examine predictors (e.g., the theory of planned behavior, [TPB]) of providing family-centered care (FCC) services to youth with ASD in pediatric professionals from a range of disciplines. A multidisciplinary (e.g., medicine, psychology, education, etc.) sample of professionals (N=709) who endorsed providing services to youth with ASD in the United States was recruited from online provider listings, listservs, etc. Hierarchical multiple regressions examined the relationship of demographic and TPB predictors to professionals' self-reported FCC practices. Professionals reported a high degree of using FCC in their practice with youth with ASD. Attitudes and perceived behavioral control predicted self-reported FCC practices, while subjective norms did not. Experienced practitioners reported using FCC practices in spite of not having necessarily received FCC training. Discipline differences were evident in rates of reported FCC. The Theory of Planned Behavior is helpful in understanding FCC practices and attention should be given to training professionals in FCC as they work with youth with ASD. Implications and future directions are discussed.

Effects of family-centered care on the satisfaction of parents of children hospitalized in pediatric wards in a pediatric ward in Chaloos in 2012.

Background:Family-centered care (FCC) involves holistic care and requires cooperation with the family in planning, intervention, and the evolution of the care that is being provided. Many previous studies have provided results that indicate the importance of the family’s involvement in pediatric care, but there is still resistance in doing so within the organizational culture of the hospitals in Iran. The aim of this study was to determine the effects of FCC on the satisfaction of parents of children hospitalized in 2012 in the pediatric ward at Razi Hospital in Chaloos, Iran.Methods:This Quasi-experimental study was conducted in 2012 in the pediatric ward at Razi Hospital in Chaloos, Iran. Seventy hospitalized children between the ages of 1 and 3 who suffered from diarrhea, vomiting, or pneumonia were selected through convenience sampling. They were divided randomly into two equal groups, a control group (routine care) and an experimental group (family-centered care). SPSS Statistics 14 software was used to analyze the data, and p<0.05 was considered to be significant.Results:In the FCC group, the mean score of satisfaction among the parents of the children was 20 out of 90 before the intervention, but, after the FCC method was used, it increased to 83.2 out of 90. In addition, a significant difference was found between the scores of satisfaction for the control and experimental groups (p<0.001), and all parents of children in the experimental group expressed high satisfaction.Conclusion:Our findings showed that the practice of FCC in caring for the sick children can increase the satisfaction of their parents significantly. The role of the family’s involvement is critical in every component of the intervention efforts, as shown by the constructs of participatory support, educational support, and psychological support. Thus, a notable implication here is that FCC may lead to increased quality of care and should be included in the educational programs of the nursing staff in pediatric ward

G236 Bridging the gap; from family centred care to family – enabled care?

Aims The concept of family centred care (FCC) has informed the provision of care to hospitalised children since the late 1980s. However, there is a well acknowledged gap between the principles and practice of FCC. Differences between the expectations of care providers have been demonstrated as has nurses’ reticence to share decision-making and cede control to family members. Family members, in turn, have pointed to the lack of support received from nurses. This paper presents findings from a study which sought to explore the potential for care contracts to support family – enabled hospital care for children. Methods A 10 month, focused ethnographic study was carried out in 2 medical and 2 surgical wards in one Children’s Hospital in the North of England. Data, focusing upon activities of daily living and the administration of oral medication, were generated via observation, interviews and focus group discussion with 144 family members (children aged up to 15 and their parent/s) and 65 nurses and Health Care Assistants. All data were subjected to thematic analysis. Results Although parents generally considered it their ‘duty’ to provide basic care for their children while in hospital, they did not necessarily know what they were ‘allowed’ to do or how they might achieve this. This role confusion was particularly significant during acute, short stay hospitalisations. Nurses recognised the vital role that parents’ play in care provision and considered it their responsibility to control and direct negotiations with family members. Both parents and nurses valued informal aspects of care negotiation and neither considered formal contracts to be the way forward. Conclusions There remains clear evidence of a gap between the principles and practice of FCC, particularly during one-off and short stay hospitalisations, which account for a significant proportion of all admissions. This paper will conclude by suggesting approaches that may enable parents’ participation in their child’s care that could also be, on the basis of our findings, acceptable to nurses.

The family-centered care practices in newborn unit nursing perspective

Objective: To understand the practices of family-centered care (FCC) in the newly born hospitalized care that have been incorporated by nurses. Methods: A descriptive study of qualitative approach, developed in the Intermediate Care Unit and Neonatal Intensive Care Unit of a public hospital in Belo Horizonte. Data collection was conducted through semi-structured interviews with 14 nurses, and the data were subjected to content analysis. Results: Three topics were originated: nurses' understanding about practices that contribute to a care guided by the FCC; FCC practices: benefits for staff of nurses and Family indicate the child's well-being and the kangaroo mother care; Difficulties in understanding of the targeted care practices by FCC. Conclusion: The applicability of the FCC is wrongly understood, and portrays the unpreparedness of professionals to deal with the family as co-responsible in the healthcare process of hospitalized children disease.

Trends in care practices reflecting parental involvement in neonatal care

BackgroundEveryday care practices can facilitate or hinder parents' participation and involvement in neonatal care. AimsTo evaluate trends in family-centered care practices in the Neonatal Intensive Care unit in Turku University Hospital. Study design and subjectsIn this retrospective study, the patient charts of very preterm infants were reviewed in 4 cohorts: 2001 to 2002 (n=72), 2006 to 2007 (n=69), 2009 to 2010 (n=76), and 2011 to 2012 (n=78). Outcome measuresCare practices with parental involvement were evaluated: 1) thermoregulation; 2) nutrition and feeding; 3) the beginning and number of skin-to-skin care episodes. As safety measures, the length of stay and weight gain were recorded at discharge. ResultsThe significant trends included: a decrease in gestational age at the end of incubator care (mean 33.4 [standard deviation (SD) 1.36] to 31.6 [SD 1.1], p<0.001) and at the beginning of breast-feeding (35.3 [SD 1.34] to 33.1 [SD 1.89], p<0.001), bottle feeding (from 34.1 [SD 1.04] to 33.3 [SD 1.51], p=0.003) and skin-to-skin care (from 32.8 [SD 1.99] to 29.9 [SD 2.34], p<0.001). The changes were most remarkable in the infants below 28weeks. In addition, weight gain increased from 110g to 159gperweek (p<0.001). ConclusionsThe hospital care practices of very preterm infants developed during the study period support parental involvement. During the same time period, the weight gain of very preterm infants improved, significantly. These practices can serve as indicators of progressive trends in family centered care.

PO-0881 The Effect Of Family Centred Care On The Anxiety Levels Of Children With Cancer And Parents

Introduction This research was carried out in order to determine the effect of family centred care on the anxiety levels of children with cancer and parents. Methods The study was carried out in the child oncology clinic of a university hospital between March 2011 and April 2013. The study sample consisted of 33 children, their mothers, and 12 fathers as the study group and 31 children, their mothers, and 10 fathers as the control group. Furthermore, the study consisted 11 nurses and 4 physicians who are employed in the clinic. The data were collected using a Descriptive Questionnaire for Parents and Children, the Family-Centred Care Questionnaire, State-Trait Anxiety Inventory. The scales were administered to the study and control groups 3 times, once at the first meeting and then in monthly intervals. All data was analysed using SPSS. Results No difference was found during the first measurement between the mean state-trait anxiety scores of the children and parents in the study and control groups. Following the family-centred care training given to the health professionals, the mean state-trait anxiety scores of the children and parents in the study group showed a significant decrease in the last measurements as compared to the control group (p Conclusion The study revealed that the family-centred care was effective in reducing the anxiety levels of children with cancer and parents. Thus, we recommend that the practice of family-centred care be proliferated.

Assessing clinicians' knowledge and confidence to perform kangaroo care and positive touch in a tertiary neonatal unit in England using the Neonatal Unit Clinician Assessment Tool (NUCAT)

Family centred care (FCC) is a guiding principle of the UNICEF Baby-Friendly Hospital Initiative (BFHI) and supports the practice of kangaroo care (KC) and positive touch (PT). We describe how clinicians in a tertiary hospital neonatal unit undertook a training needs analysis using the Neonatal Unit Clinician Assessment Tool (NUCAT), an on line knowledge test with ratings of confidence and knowledge in the practice of KC and PT. Fifty one medical and nursing staff completed NUCAT. Clinicians who spent 75% or more of their working week providing clinical care on the neonatal unit knew more about PT. Clinicians who received training in FCC practices had significantly more confidence in their knowledge and practice of KC and PT. Confidence in knowledge and practice in KC was significantly reduced when clinicians received their knowledge scores. There was no effect of feedback on confidence for PT. Interviews with six neonatal nurses identified a lack of formal training and evidence-based guidelines as impeding confidence of clinicians to implement both KC and PT.

Mothers’ perceptions of family centred care in neonatal intensive care units

ObjectiveTo explore mothers’ perceptions of family centred care (FCC) in neonatal intensive care units (NICUs) in England. DesignThe qualitative experiences of 12 mothers from three NICUs in the UK were elicited using individual interviews. A thematic network analysis was conducted on the transcribed interviews Main outcome measuresA central global theme supported by a number of organizing themes were developed reflecting the views of the mothers and their experiences of FCC. ResultsA global theme of “Finding My Place” was identified, supported by six organizing themes: Mothering in Limbo; Deference to the Experts; Anxious Surveillance; Muted Relations, Power Struggles and Consistently Inconsistent. Mothers experienced a state of liminality and were acutely sensitive to power struggles, awkward relationships and inconsistencies in care. To try to maintain their equilibrium and protect their baby they formed deferential relationships with health professionals and remained in a state of anxious surveillance. ConclusionsThis study illustrates that despite the rhetoric around the practice of FCC in NICUs, there was little in the mother's narratives to support this. It is of the utmost importance to minimize the consequences of the liminal experience, to improve staff–mother interactions and to facilitate mothers’ opportunities to be primary caregivers.

Adult-trained perioperative nurses' practice of family-centered care

The aim of this study was to explore adult-trained perioperative nurses' practice of family-centered care (FCC). A qualitative research design with a hermeneutic phenomenological approach was used. In-depth interviews were conducted with six adult-trained perioperative nurses. Data analysis was guided by Colaizzi's seven-step framework, resulting in a composite description of perioperative nurses' practice of FCC. While participants supported the principle of family involvement in care, they found its implementation in practice difficult and stressful. They reported that families often appeared inadequately prepared for the surgical experience, and subsequent poor experiences for families caused feelings of upset and inadequacy for nurses. While some of these findings are similar to those in previous studies of paediatric nurses' practice of FCC, this is the first known study to examine adult-trained perioperative nurses' practice of FCC. Participants articulated an awareness of what constitutes effective FCC and showed the motivation to accomplish the task of improving family-centered practice in their practice area.

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Background: In China there is increasing emphasis on implementing family-centered care (FCC) practices in pediatric critical care settings. Aims: The aim of this quality improvement project is to describe and discuss the implementation strategies of FCC applied in a Infusion Unit in a Children’s Hospital in China. Methods: All nurses (n=45) of the Infusion Unit received special training related to the background and philosophy of FCC. The training components were related to communication with parents, understanding and meeting their needs, and health education. Results: All Registered Nurses start to assess the child’s situation upon arrival at the Infusion Unit. The assessment is evaluating the age, diagnosis, vein situation, and psychological preparation for venous infusion. The nurses assure timely communication with the parents, assess their needs, inform about the medical treatment, and provide health education for specific procedures such as PICC nursing and medical instructions. The collaborative relationship between children and nurses was well established. The parent’s satisfaction was increased to 95% compared the data(65%) as before. No nursing complaints occurred from the parental perspective after implementing FCC. Conclusion: The FCC nursing model was received well by the parents. It advocates the parents’ collaboration and participation in medical procedures and increases their compliance to the child’s care. Concurrently, this FCC nursing model also accumulated the nursing knowledge and enhanced the nursing quality by creating a harmonious relationship with the child and parents.

Improving family-centered care practices in the NICU.

Family presence and participation in care in the NICU is fundamental to the recovery and well-being of the sick neonate and family. However, some NICU visitation policies are not supportive of families. A new visitor-management program was initiated at a local hospital. The program included open visitation for parents and others chosen by parents to be a support during their hospital stay. This quality-improvement project evaluated if there was any improvement in parents' perceptions and experiences of family-centered care after the implementation of the new visitor-management program. The NICU parent survey data revealed a modest positive difference in parent responses after the implementation of the program.

Family‐centred care in the paediatric intensive care unit: an integrative review of the literature

To review extant research on family-centred care in a paediatric intensive care environment and identify gaps in the literature. Family-centred care is currently a core concept in paediatric nursing, focusing on the premise that families are central to a child's well-being, and as such, should be included as equal members of the child's healthcare team. Due to the nature of critical care, family-centred care may be challenging to implement and maintain. An integrative literature review. The review was conducted using the Cumulative Index to Nursing and Allied Health Literature, PubMed, OVID MEDLINE and Google Scholar databases, from 1990 to present. The search focused on the following terms: 'p(a)ediatric critical care', 'paediatric intensive care unit', 'family cent(e)red care', 'parental needs', 'family presence' and 'family/nurse roles'. Additionally, the search was limited to studies conducted in a developed country and published in English. Eighteen studies were included in the review. The results demonstrated that implementing family-centred care into a paediatric intensive care environment posed several challenges. The discrepancy between nurses' and parents' perception of their roles, the reluctance of medical staff to share potentially negative or rapidly changing information, restrictive family presence and poor understanding of family needs emerged as the key difficulties. No studies evaluated strategies to improve family-centred care practice. Family-centred care presents many challenges in a paediatric intensive care environment; however, nurses are uniquely positioned to foster relationships with families, encourage accurate and honest information sharing and advocate for families to be present when they choose. This review outlines the extant research to enhance awareness of the unique state of family-centred care in paediatric intensive care and makes recommendations for future research.

A Survey of Nurses’ Practices and Perceptions of Family-Centered Care in Ireland

Family-centered care (FCC) is a philosophy of care that recognizes the family's central role in the child's life and in the delivery of care. We used a survey design to investigate the practices and perceptions of nurses toward FCC in Ireland. Data were obtained from 250 nurses in seven hospitals using the Family-Centered Care Questionnaire-Revised (FCCQ-R). Findings indicated that nurses' practices were significantly different from their perceptions of FCC. Nurses with dual registration (children and adult) had significantly lower mean scores on the total current (practice) scale than the other registration subgroups. Nurses with a baccalaureate or a higher academic qualification had higher mean scores than nurses who held a certificate-level qualification on the total necessary (perception) scale, which assessed the activities perceived to be necessary for FCC. Findings showed that nurses support FCC but perceive the design of the health care system and parent-professional collaboration as barriers to FCC practice.