Importance Of Family-centred Care Research Articles

A normal day in the life of a neonatal nurse practitioner: experience report

This experience report provides an expert opinion on the daily routine and responsibilities of a neonatal nurse practitioner within the framework of the nurse practitioner role in the Netherlands. The aim is to enhance understanding of the unique contributions made by nurse practitioners in delivering high-quality care to newborns and their families in the Dutch healthcare system, by showcasing the diverse clinical, educational, and research activities involved. Therefore, it highlights the specific scope of practice for nurse practitioners in neonatology, the collaborative approach between healthcare professionals and parents, and the importance of family-centered care, offering valuable insights into the multifaceted nature on the role of the practitioner nurse, emphasizing the adherence to national guidelines and protocols.

Development and Validity of the Japanese Version of the Questionnaire on Factors That Influence Family Engagement in Acute Care Settings

There exists an international consensus on the importance of family-centered care (FCC) in intensive care settings and the evaluation of collaboration between nurses and families; however, FCC is currently practiced blindly in Japan. In this study, we developed a Japanese version of the questionnaire, Factors that Influence Family Engagement (QFIFE-J) and examined its reliability and validity. A web-based survey was conducted with 250 nurses working in the intensive care unit (ICU). Exploratory and validatory factor analyses were used to ascertain factor validity. Criterion-related validity was tested using correlation analysis with the ICU Nurses' Family Assistance Practice Scale. Internal consistency and reproducibility were verified for reliability. Following exploratory and confirmatory factor analyses, a 15-item measure emerged comprising four factors: "ICU environment", "nurses' attitudes", "nurses' workflow", and "patient acuity". Confirmatory factor analyses showed a generally good fit. Cronbach's α for the overall scale was 0.78, indicating acceptable internal consistency. The intraclass coefficient for test-retest reliability was 0.80. It was found that the QFIFE-J was reliable and valid and may help determine the factors that promote or inhibit FCC. Additionally, this study has also clarified the current status and family support related issues in ICUs in Japan.

748 Burn Center Family Needs Study Brings Changes to The Unit Practice

IntroductionPediatric burn patient family needs have many similarities to adult burn patients. However, based on our abstract Family Needs of Adult & Pediatric Burn Patients study from 2013 to 2018, there is a difference. We found our desire to preserve the pediatric burn patient family members as the "safe, comforting person" prevented them from learning all the necessary skills to be the successful caregivers once the child was discharged.MethodsAn integrative review is conducted using a literature search from EBSCOhost, CINAHL, Scopus, Medline, and PubMed. We found very little information addressing this specific concern for our pediatric burn population. However, there is a lot of literature discussing how to involve pediatric family members with other childhood diseases and the benefits of making pediatric family members a part of the treatment team. We shared our literature findings along with the results of responses we got from our Family Needs of Adult & Pediatric Burn Patients study with our Shared Decision-Making (SDM) Council and implemented our new practice.ResultsAn informal interview results showed much improved pediatric burn family member satisfaction. By the time the family takes the burn child home, they demonstrate proficient dressing change skills along with the knowledge of how to manage their pain, itch, nutritional needs, and how to contact their care team as needed.ConclusionsWhile most of us know the importance of family centered care, putting this concept into practice need more structured approaches and administrative support. Unit based SDM Council and Journal Club can help to keep our nursing staff, especially the new hires to embrace this practice.

Working with Families Using a Family-Centered Approach for Improved Development Outcomes in High-Risk Children

Introduction: Around the world, almost half of all deaths in children under five occur in the newborn period. Ninety-nine percent of newborn deaths are in low- and middle-income countries and prematurity, intrapartumrelated neonatal deaths (‘birth asphyxia’), sepsis and meningitis account for 75% of these1. Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in “language, mobility, learning, self-help, and independent living”2. Aim of Study: To analyze the impact of family centered-approach on child’s development outcomes. To quantify and validate the advantages of family-centered- approach for parents and children. Method: A low-cost, family-centered intervention programme to promote child and family wellbeing is provided at an Early Intervention Centre in Latika Roy Foundation, Dehradun, India. It follows a familycentered approach of empowering families through respect, collaboration, information, training and support. The effectiveness of this methodology is evaluated in this study. Discussion: This study evaluates the effectiveness of this family-centred interventions programme, provided by early intervention Centre, for improving development outcomes of high-risk infants. This study explores, for the first time in a resource limited country, the relationship between the reduction of family stress achieved through a family empowerment programme and improvement in development outcomes of high-risk children. Families of High-risk infants enrolled at the Centre during January 2015 through July 2017, who were in NICU for 5 or >5 days are partners in the study. Conclusion: The importance of family-centred care cannot be over-emphasized. Early intervention services and support to families can significantly improve quality of life of high-risk children. Intervention studies for children with disability state that the best way of improving children’s outcomes is by empowering parents through a structured learning programme. Given the scope and potential of such programs, this study quantifies and validates the advantages of the family-centred approach.

Mental Health Trainee Facilitation of Sibling Support Groups: Understanding its Influence on Views and Skills of Family-Centered Care.

Prior research suggests family-centered interventions are among the least taught yet most needed skills for practicing psychiatry. In this study, we evaluated whether having mental health trainees lead a sibling support group could serve as a method to promote family-centered care among trainees. All trainees in psychiatry, psychology, and social work were invited to participate as sibling support group facilitators. Both facilitator and non-facilitator trainees were then surveyed using a questionnaire inquiring about exposure to family-centered care, comfort level in providing family-centered care, attitudes regarding the importance of family-centered care, and desire to provide family-centered care in the future. A second survey was administered to the facilitator trainees to assess their perceptions of the sibling group leader experience. Facilitator trainees reported increased engagement in family-centered activities during training (p < 0.05), expressed greater confidence in their family-centered care skills (p < 0.05), and reported stronger intentions to practice in a family-centered way (p < 0.05). Facilitator trainees were overwhelmingly positive about their experience with the sibling support program and reported it strengthened their commitment to addressing the needs of siblings as a part of family-centered care. Facilitating a sibling support group may be an effective way for mental health trainees to gain skills and confidence in delivering family-centered care. Mental health training programs aiming to imbue trainees with the importance of family-centered care may consider creating opportunities for trainees to facilitate sibling support groups.

Gezinsgericht werken in de gesloten residentiële jeugdhulp

The importance of family-centered care in residential youth care is widely recognized in research, as well as in practice and policies. Involving parents in residential treatment is frequently associated with positive outcomes. However, applying a family-centered vision in the practice of residential youth care remains challenging. A program for family-centered care is developed by the Academic Workplace for Risk Youth (AWRJ). The program emphasizes the importance of involving parents from the start of the placement. Parents should be informed about family activities in the institution. Professionals treat parents as 'experts' concerning their child and involve them in decisions. Furthermore, parents are asked about their needs and supported for participation. Another important part of the program is the possibility to start systemic therapy during placement and continuing the therapy when the youth returns home. This article also discusses how to overcome barriers in involving parents and how this program can be implemented successfully.

A multivariable analysis of childhood psychosocial behaviour and household functionality.

Social determinants of health play a vital role in population health. Awareness of household social factors and their impact on health can help health professionals to provide effective strategies in health promotion, especially for children and adolescents showing signs of psychosocial dysfunction. The objective of this study was to explore the association between parents' perceptions of the psychosocial behaviour of their children and the functionality of their household. This cohort study analysed data from the Coordinated Health Care for Complex Kids programme. The sample included 293 parents of children aged 4-17years with chronic conditions, and from urban, low-income families. Psychosocial behaviour of the child was measured using the Pediatric Symptom Checklist (PSC-17), which included subscales for internal, external, and attention symptoms. Household functionality was measured using the Confusion, Hubbub, and Order Scale. Responses to both assessments were scored in a standard manner. There was a significant association between parents' perceptions of the psychosocial behaviour of their children and the functionality of the home environment. The mean Confusion, Hubbub, and Order Scale scores in the home environment improved from baseline to the first reassessment (the period between the two assessments ranged from 4 to 8months). Additionally, positive PSC-17 screening results of the children decreased by 11% in the first reassessment. The odds of having a positive PSC-17 screening result also decreased in the first reassessment after receiving interventions. The association between psychosocial dysfunction and household functionality indicates the importance of family-centred care and taking the home environment into consideration when administering health services to low-income children with chronic conditions. This study brings attention to the more hidden factors that influence child mental health, which must be addressed to improve care delivery and child health outcomes.

Cultural understanding, experiences, barriers, and facilitators of healthcare providers when providing preconception counseling to adolescent Latinas with diabetes.

Background:Latinas are at a higher risk than Caucasians for both type 1 and type 2 diabetes (DM), as well as DM-associated reproductive health (RH) complications. Healthcare providers (HCPs) should deliver culturally-sensitive care to enhance the care relationship between Latinos and HCPs and to improve patient outcomes. This study explored an expert panel’s cultural understanding, experiences, barriers, and facilitators regarding RH and preconception counseling (PC) for adolescent Latinas with DM and their families.Methods:This study used open-ended questions with a focus group of 8 HCPs from the mid-Atlantic, Southwest, and Northwest regions of the United States in a teleconference format. Two researchers transcribed and reviewed the transcript for accuracy. Using content analysis, four members of the team identified themes. All researchers discussed themes and a 100% consensus was reached. For confirmation, a coding protocol was created based on the emerging themes.Results:Five themes related to cultural understanding and experiences were identified: 1) issues of identity; 2) acculturation; 3) stigma; 4) ambivalence toward birth control, RH education, and PC; and 5) cultural sensitivity vs. best practice. Four barriers were identified: 1) language; 2) religion; 3) access to healthcare, and 4) discomfort with discussion. Ten facilitators were identified: 1) the importance of support and support networks; 2) promoting trust among HCPs, daughters, and families; 3) assessing emotional development; 4) empowerment; 5) emphasizing safety; 6) communicating in patients’ preferred language; 7) discussing RH-related topics and PC using cultural sensitivity; 8) importance of being ready/temporality/planning for the future; 9) the importance of family-centered care; and 10) variation in educational tailoring and dissemination/ care delivery.Conclusions:Findings support the need for culturally sensitive and developmentally appropriate PC programs to empower adolescent Latinas with DM.

Autism and primary care dentistry: parents’ experiences of taking children with autism or working diagnosis of autism for dental examinations

Accessing and receiving preventative dental treatment can be difficult for children with autism due to sensory processing disorders and/or challenging behaviours coupled with a reported reluctance by dentists to treat these children. To gather dental experiences of UK parents of children with autism or working diagnosis of autism and explore how they feel primary care dental services can be improved. A total of 17 parents of children with a diagnosis or working diagnosis of autism took part in semi-structured interviews. Data were analysed thematically. Key themes identified were flexibility of the dental team and environment, confidence of the parents to advocate for their children's needs, continuity of services and clear referral pathways to specialist services. Cross-cutting all themes was the value of clear communication. The experiences provide greater understanding of issues such as hyper-empathy, the dental chair, challenges of the waiting room, perceived medical authority, and the importance of continuation of care. In line with previous research about the importance of family-centred care, a strong relationship between parents and the whole dental team is essential for children with autism to access dental examinations and have satisfactory experience of care.

Health-Related Quality of Life in Children with HIV Infection—A Cross-Sectional Study from South India

Assessment of health-related quality of life (HRQoL) in children with HIV is crucial to improve the psychosocial well-being of this vulnerable population. The objective of this study was to assess the HRQoL of children with HIV infection aged between 5 and 18 years. The study was conducted in 144 children with HIV attending an antiretroviral therapy (ART) center in Karnataka to assess the HRQoL, using the PedsQL questionnaire. Total 144 children were included in the study, who had HRQoL with good physical (75.99 ± 13.46), psychosocial (71.01 ± 12.83), and total (72.43 ± 12.73) scores according to the child's perspective. Number of boys and children raised in foster homes were 51.3% (74) and 56% (81), respectively. Even though all children had complete adherence and had a good immunologic and clinical profile, we found that their HRQoL did not vary with stage of infection, duration of treatment, or immunologic status. Our findings underscore the importance of family-centered care for children living with HIV and advocate enhancing psychosocial and mental development to improve the HRQoL of children.

The Effect of Educational Intervention on Nurses' Attitudes Toward the Importance of Family-Centered Care in Pediatric Wards in Iran.

Introduction:Family-centered care sustains the unity of the child’s and the family’s health. The aim of this study was to determine nurses’ attitudes toward parents’ participation in the care of their hospitalized children in Iran in 2015.Methods:In this experimental study, 200 pediatric nurses from hospitals affiliated with the Shaheed Beheshti University of Medical Sciences in Tehran were selected using the multi-stage, random-sampling method. Data were gathered using a questionnaire that covered demographic information and nurses’ attitudes. The questionnaire consisted of 31 items and was completed by the nurses in three stages: 1) before intervention (pre-test), 2) immediately after intervention (post-test), and 3) three months after intervention (follow-up). The data were analyzed via SPSS software and using descriptive and analytical methods. Descriptive statistics, the Spearman Correlation Coefficient, and Repeated Measure Analysis (the Bonferroni method) were used to assess the data.Results:The results indicated that there was a significant increase in the mean score of attitude after intervention [M (pre) = 3.35%, M (post) = 3.97%, p < 0.001)]. Most of subjects had neutral attitudes toward family participation in their children’s care. There were no significant relationship between the nurses’ socio-demographic characteristics and their attitudes.Conclusion:The nurses’ attitudes toward the family’s participation in the care of their hospitalized children were moderate. The nurses’ attitudes should be improved by taking part in continuous training programs.

The Challenges and Strategies to Improve Family-centered Round: A Literature Review

The importance of family-centered care and the role of families in decision making are becoming more recognized today. Several studies have supported the implementation of family-centered care and its role in enhancing quality of care. Family-centered rounds are one of family centered model of care that brings together multidisciplinary team as well as family to discuss the patient’s condition and care management, coordinate the patient’s care management, and make decisions on care plan for the patient (Sisterhen et al., 2007, Aronson et al., 2009). As part of innovations to enhance family-centered care, family-centered rounds have been adopted and implemented in many hospitals. This model of rounds is popular and widely applied in the neonatal and pediatric intensive care unit (Aronson et al., 2009, Kleiber et al., 2006, Mittal et al., 2010). However, other units have also begun to implement it (Schiller and Anderson, 2003, Mangram et al., 2005). The benefits of family-centered rounds have been presented in several studies. They reported that family-centered rounds have been improved communication between staff and family members (Mittal et al., 2010, Jacobowski et al., 2010, Rosen et al., 2009, Vazirani et al., 2005), understanding of the patient’s care plan (Rosen et al., 2009), staff and family satisfaction (Rappaport et al., 2010, Rosen et al., 2009); and decreased need for care plan clarification (Rosen et al., 2009).

Visioning services for children affected by HIV and AIDS through a family lens

The HIV epidemic continues to place a great burden on children, from loss of parents and income to severe disruptions of their homes and families. Underpinned by the understanding that a healthy family constitutes the foundation for a child's wellbeing, the importance of family-centred care and services for children is increasingly recognized. It is not enough to merely provide antiretrovirals: it is of pivotal importance that treatment and care for children are integrated into the broader context of family-support schemes. However, despite growing evidence of the benefits of family-centred services, reforms in favour of family oriented HIV interventions have been slow to emerge. Treatment, prevention and care interventions often target individuals, and not families and communities.For the first time, this supplement to the Journal of the International AIDS Society brings together in one place the rationale for family-centred services for children affected by HIV and AIDS and some of the available evidence for the effectiveness of doing so. We hope this constitutes a beginning of what could be a groundswell of interest in family-centred services for children affected by HIV and AIDS.

Parental involvement in their school-aged childrenʼs post operative pain management in the hospital setting: a systematic review

Parental involvement in their school-aged childrenʼs post operative pain management in the hospital setting: a systematic review

Parent participation in paediatric rehabilitation treatment centres in the Netherlands: a parents’ viewpoint

The importance of family-centred care and services has been increasingly emphasized in paediatric rehabilitation. One aspect of family-centred care is parent involvement in their child's treatment. The aims of this study were (1) to describe how, and to what extent parents are involved in the paediatric rehabilitation treatment process in the Netherlands; (2) to determine the level of parents' satisfaction about the services they and their child have received; and (3) to describe what ideas parents have to enhance their involvement in the treatment process. A total of 679 parents of children aged 1-20 years who participated in our longitudinal study on family centred care in the Netherlands. The children had various diagnoses and were treated in nine out of 23 Dutch paediatric rehabilitation centres. A random sample of 75 parents was interviewed within 4 weeks after completion of the Measure of Processes of Care and the Client Satisfaction Questionnaire. A Quality of Care cycle with six stages was used to structure the evaluation. The data showed that parents are involved in all stages of their child's rehabilitation process in various ways. The average level of parent satisfaction about the services received was high. According to the interviewed parents, the communication between professionals and parents, parents' involvement in goal setting, and parents' involvement in treatment could be improved upon. Parents are to a large extent involved in all stages of the treatment process in Dutch paediatric rehabilitation settings. Although parents valued the services received, they suggested various ways to enhance parent participation.

Importance of Family-Centred Care to Palliative Medicine

The family is inevitably involved in care-provision when one of its number suffers from a progressive and life-threatening illness such as advanced cancer. Distress reverberates throughout the family, with moderate rates of psycho-social morbidity, including up to one third ofpartners and one quarter of adult children (1-3). There has been growing awareness over recent years of the importance of a family-centred model of care to fully meet the needs of patients and families involved with palliative care services and, moreover, maintain continuity of support into bereavement (4). To achieve this, we need both conceptual and pragmatic methods of classifying families to guide our efforts at intervention. Historically, one approach has been to conceptualize families in terms of the phase of illness they must negotiate (5); another stressed the family's needs or the associated burdens it experienced (6); a third focused on the family's developmental stage (7). Yet none of these approaches proved predictive of psycho-social outcome over time. It was not until attention turned to family functioning that a clinically useful method of predicting psychosocial outcome emerged (8,9). Through these longitudinal studies of families during palliative care and bereavement, we were able to classify families using the following dimensions of their functioning: (i) cohesiveness, the family's sense of togetherness; (ii) expressiveness, their sharing of both thoughts and feelings; and (iii) conflict resolution. These dimensions form a simple screening instrument, the 12 item Family Relationships Index (10).