Impact of family-centered care in families with children with intellectual disability: A systematic review.

Background: Family-Centered Care (FCC) is an approach to healthcare planning, delivery and evaluation, based on beneficial partnerships between health professionals, patients and families. FCC may be particularly relevant for families with children with intellectual disability (ID), given their needs of continuum care. Objective: To identify which components of the FCC are practiced and which health outcomes are considered effective in families with children with ID. Method: A systematic review guided by the PRISMA STATEMENT 2020 approach and the STROBE reporting guidelines was performed on specific databases through the EBSCOhost Web platform: MEDLINE with Full Text, CINAHL PLUS with Full Text, Academic Search Complete and Psychology and Behavioral Sciences Collection. Peer-reviewed articles published in English or Portuguese languages from 2018 to September 2023 were retrieved. Methodological quality was established using the Quality Assessment Tool for Observational, Cohort and Cross-Sectional Studies - NHLBI, NIH. Results: Ten studies met the eligibility criteria and were synthetized. The results revealed nine components, reflecting the way FCC was developed: shared decision-making; family education; respect for culture; family engagement; recognition of the family's needs, characteristics and interests; specialized care support; social and emotional support; family functionality; and family seen as a unit. The health outcomes demonstrate effective gains in improving children's health through family satisfaction with health services. Also achieved psychological and social benefits, with improved family well-being and quality of life, favoring family empowerment. Conclusions: The evidence suggests that FCC components involves an effective partnership between the family and health professionals as the main key in developing care plans, as well as the experience that the family unit brings to the delivery of care. FCC approach include all family members as decision-makers, providing emotional, physical and instrumental levels of support. Health outcomes emerged in three strands; for children with ID, families and health services.

Translation and Psychometric Validation of the German Version of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ): A Cross-Sectional Study.

Supporting families experiencing critical illness through family interventions is essential to ease illness burden, enable family management, and reduce their risk for adverse health. Thus far, there is no validated German instrument to measure the perceived support families receive from nurses. We translated the 14-item Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) and tested its psychometric properties with 77 family members of intensive care patients. Compared with the original instrument, the construct validity of the German ICE-FPSQ (FPSQ-G) showed unstable results with a partially divergent structure, most likely caused by the limited sample size. The first two principal components explained 61% of the overall variance and a good internal consistency with a Cronbach's alpha of .92. The FPSQ-G is a promising instrument to measure family members' perceptions of the support they received from nurses in the acute critical care setting but requires further validation.

Student nurse perceptions of family nursing practices in South Africa: A descriptive survey.

Background: Family nursing practices (FNPs) are gaining momentum in global literature, but the available research has targeted qualified nursing professionals. There are limited studies exploring this phenomenon in undergraduate student nurses in South Africa. Aim: The study aimed at exploring the undergraduate student nurse perceptions of FNPs. Setting: The study was conducted at a selected university in KwaZulu-Natal, South Africa. Methods: A descriptive survey design was used to purposively select undergraduate nursing students. The Family Nursing Practice Scale (FNPS) was used to collect data online. Descriptive and inferential statistics were used to analyse quantitative data. Open ended questions were analysed using content analysis. Results: Out of 154 participants, 77 responded to the questionnaire, translating to a response rate of 50%. Compared with other studies in literature, student nurses rated their overall FNP as being low (M = 3.43, s.d. = 0.99). A further descriptive analysis revealed better FNPs (2.97) for 3rd year compared to 2nd year (3.90) nursing students with significance differences in the means (p < 0.0001). While family conflict, maintaining confidentiality, ill prepared and absent family were challenges experienced in FNP, advantages included obtaining detailed information, ability to plan individualised care and enhanced student nurse-family relationship. Conclusion: A lower critical practice appraisal and lower perceptions of interaction and reciprocity in the nurse-family relationship were identified. There is need for an inclusive curriculum that promotes and advocates for family nursing within the undergraduate programme. Contribution: This study highlights the importance of teaching family nursing to undergraduate student nurses.

Parents' perceptions of factors influencing sleep in pediatric intensive care units: A qualitative study.

PURPOSE: The purpose of this study is to explore factors influencing sleep in pediatric intensive care units as perceived by parents of critically ill children. DESIGN AND METHODS: This descriptive qualitative study used individual semistructured interviews. Parents were recruited through purposive sampling from two pediatric intensive care units at two locations in one university hospital in Norway. Ten parents were interviewed. The interviews were analyzed using a six-phase reflexive thematic analysis. FINDINGS: The analysis produced 17 subthemes under four main themes: environmental factors in the pediatric intensive care unit disturb children's sleep, children need trust and safety to sleep, nurses' cooperation with parents influences children's sleep, and nurses' structuring of their practices is fundamental to sleep promotion. CONCLUSION: The parents found that the environment disturbed their children's sleep, and environmental factors were easier to control in single rooms than in multibed rooms. Children slept better when they felt safe and trusted the nurses, and parents desired more cooperation in promoting sleep for their children, which may be an essential and overlooked part of sleep promotion. Nurses varied considerably in how they prioritized sleep and structured their practices to promote sleep. PRACTICE IMPLICATIONS: Nurses should take parents' experiences into account to better promote sleep for patients. By limiting environmental disturbances, building relationships with children to make them feel safe, including parents in sleep promotion, and prioritizing sleep in their practices, nurses could improve sleep quality and limit the consequences of sleep disturbance.

Nurse-mother communication and support: Perceptions of mothers in neonatal units.

Introduction: Having a hospitalized neonate is a stressful experience for parents, especially mothers. Thus, in recent years, a paradigm shift occurred in the neonatal units, focusing on the needs of parents and supporting them in addition to caring for neonates. The aim of this study was to evaluate the nurse-mother communication and support in neonatal units in Bushehr, Iran. Method: This descriptive cross-sectional study was performed in neonatal units of 6 hospitals in Bushehr, Iran, in 2022. Using the census method, all eligible mothers who met the inclusion criteria were included in this study. Data collection tools included demographic information form, nurse-parent support tool and nurse-parent communication questionnaire. The collected data were analyzed by SPSS version 24 using descriptive statistics, independent t-test, one-way ANOVA and Pearson correlation test. Results: The total mean score of nurse-parent support tool was 3.72 ± 0.72 and the total mean score of nurse-parent communication questionnaire was 59/27 ± 12/82. Caregiving support had the highest mean score (4.07 ± 73 0.73) and emotional support had the lowest (3.42 ± 91 0.91). Also, a statistically significant difference was seen between the admitted unit variable and the mean score of nurse-mother communication and support. Additionally, there was a statistically significant difference between the mechanical ventilation status of the neonate and the mean score of nurse-mother support. A significant positive correlation was seen between the neonatal gestational age and the mean score of nurse-mother communication. Conclusions: The total mean score of nurse-parent support and communication was moderate. Therefore, nursing support and communication need to be improved. Planning is needed to enhance the role of neonatal nurses and strengthen their support and communication skills in line with the family-centered care approach.

Competencia emocional y características sociodemográficas y profesionales de las enfermeras / Competência emocionais e características sociodemográficas e profissionais de enfermeiros / Emotional competence and sociodemographic and professional characteristics of nurses

Introducción: En los profesionales de la salud, las habilidades que les permitan lidiar con las emociones propias y ajenas garantizan la calidad de la atención brindada y una relación terapéutica eficaz. Por lo tanto, son fundamentales para los enfermeros, es decir, para aquellos que actúan en las unidades de salud de la familia. Objetivo: Analizar la relación entre la competencia emocional de las enfermeras que trabajan en unidades de salud de la familia en un grupo de centros de salud en el norte de Portugal y sus características sociodemográficas y profesionales. Método: Metodología cuantitativa, de tipo transversal descriptivo-correlacional. Datos recogidos a través de un cuestionario electrónico que constaba de dos partes: características sociodemográficas y profesionales de los participantes y cuestionario de competencia emocional. 66 enfermeras compusieron la muestra. Resultados: Las enfermeras del estudio mostraron altos niveles de competencia emocional (media = 205,1, desviación estándar = 20,9). No hubo diferencias estadísticamente significativas entre las características sociodemográficas y profesionales y la competencia emocional.Conclusiones: Aunque no está clara la relación entre la competencia emocional y las características sociodemográficas y profesionales, es cierta la importancia de la inteligencia emocional en la práctica asistencial. (AU)

Introdução: Em profissionais de saúde, competências que permitam lidar com as próprias emoções e com as dos outros garantem a qualidade dos cuidados prestados e uma relação terapêutica eficaz. Daí serem fundamentais para enfermeiros, nomeadamente para os que executem funções em unidades de saúde familiares. Objetivo: Analisar a relação entre a competência emocional dos enfermeiros das unidades de saúde familiar de um agrupamento de centros de saúde do norte de Portugal e as suas características sociodemográficas e profissionais. Método: Metodologia quantitativa, do tipo transversal descritivo-correlacional. Dados recolhidos através de um questionário eletrónico que consistia em duas partes: características sociodemográficas e profissionais dos participantes e questionário de competência emocional. 66 enfermeiros compuseram a amostra. Resultados: Os enfermeiros do estudo apresentaram elevados níveis de competência emocional (média = 205,1, desvio padrão = 20,9). Não se evidenciaram diferenças estatisticamente significativas entre as características sociodemográficas e profissionais e a competência emocional. Conclusões: Apesar de não ser clara a relação entre a competência emocional e as características sociodemográficas e profissionais, é certa a importância da inteligência emocional na prática de cuidados. (AU)

Introduction: In health professionals, skills that allow them to deal with their own emotions and those of others guarantee the quality of care provided and an effective therapeutic relationship. Hence, they are fundamental for nurses, namely for those who work in family health units. Objective: To analyze the relationship between the emotional competence of nurses working in family health units in a group of health centers in the north of Portugal and their sociodemographic and professional characteristics.Method: Quantitative methodology, of the transversal descriptive-correlational type. Data collected through an electronic questionnaire that consisted of two parts: sociodemographic and professional characteristics of the participants and emotional competence questionnaire. 66 nurses composed the sample.Results: The nurses in the study showed high levels of emotional competence (mean = 205.1, standard deviation = 20.9). There were no statistically significant differences between sociodemographic and professional characteristics and emotional competence. Conclusions: Although the relationship between emotional competence and sociodemographic and professional characteristics is unclear, the importance of emotional intelligence in care practice is certain. (AU)

Psychometric Testing of the Experience of Integrating Chronic Illness into Family Life Questionnaire.

Family members' experience of integrating chronic illnesses or chronic conditions into family life is valuable information for health care professionals, such as nurses, to understand, improve, and adjust the care provided to families of chronically ill patients. Furthermore, the assessment of the experience of integrating chronic illness into family life can support family nursing interventions and reduce suffering. This study aimed to adapt and psychometrically test a new Likert-type questionnaire on the experience of integrating pediatric chronic illness into family life (EICI-FLQ) in two European samples. A sample of 164 primary caregivers of children/adolescents with chronic illnesses/conditions in Iceland and another sample of 237 primary caregivers with children/adolescents with chronic illnesses/conditions in Portugal completed the online questionnaire. Exploratory factor analysis of the Icelandic sample yielded support for a one-factor solution with acceptable internal reliability (Cronbach's α = .866). Confirmatory factor analysis of the one-factor structure in the Portuguese sample indicated good model fit and similar internal reliability (Cronbach's α = .838). This instrument has good psychometric characteristics and is a promising tool for measuring the experience of integrating pediatric chronic illness into family life in clinical and research settings.

Family-Oriented Therapeutic Conversations: A Systematic Scoping Review.

There is increasing evidence that highlights the benefits of Family-oriented Therapeutic Conversations (FAM-TC) for the patient and the family; however, studies show variability regarding the content and the way these interventions are offered. This may hamper its further development in clinical practice. This review systematically maps the available literature on nurse-led FAM-TC and offers a solid synthesis of the characteristic, effectiveness, and feasibility of these interventions. A systematic search in PubMed, CINAHL, Cochrane, Web of Science, PsycINFO, Trip (Turning Research Into Practice), BASE (Bielefeld Academic Search Engine), OATD (Open Access Theses and Dissertations), and ProQuest databases identified 37 studies. The interventions varied in interventionist nurses' profile, the intervention content, or the duration of the sessions offered. Most of the interventions showed beneficial effects on perceived family support and family functioning. This review offers suggestions for future studies, such as the inclusion of specific theoretical frameworks for intervention design, targeting both the patient and the family and offered by nurses with family nursing competency.

NADA Acupuncture in Specialized Palliative Care: Patients' and Family Caregivers' Experiences.

CONTEXT: Over the last 30 years, non-pharmacological treatment with ear acupuncture, including National Acupuncture Detoxification Association (NADA) acupuncture, has become popular in Western society to relieve cancer-related symptoms. OBJECTIVES: This study aim is to explore whether NADA acupuncture plays a role in relieving suffering experienced by patients hospitalized in a specialized palliative care ward and their family caregivers and whether it contributes to their coping skills. METHODS: A qualitative study with a hermeneutic approach utilizing inductive thematic content analysis. Purposeful sampling took place in a specialized palliative care ward in Denmark and all data were collected through semi-structured interviews with patients and family caregivers as either individual or family interviews. RESULTS: A total of 10 patients and 15 family caregivers participated in interviews. Four themes emerged: (1) communication about treatment with NADA acupuncture, (2) relief of suffering generates extra energy and inner strength, (3) sharing the experience with the family is beneficial, and (4) physical and psychological effects after receiving NADA acupuncture. CONCLUSION: Patients in palliative care and their family caregivers experienced relief of suffering after receiving NADA acupuncture, as well as improved well-being, and extra energy and inner strength to cope with their life situation. The ability to share NADA acupuncture gave family caregivers the feeling of being cared for and contributed to feelings of fellowship and togetherness within the family, strengthening their ability to communicate and cope.

Interventions to improve nurse-family communication in the emergency department: A scoping review.

AIM: To determine and describe what interventions exist to improve nurse-family communication during the waiting period of an emergency department visit. BACKGROUND: Communication between nurses and families is an area needing improvement. Good communication can improve patient outcomes, satisfaction with care and decrease patient and family anxiety. DESIGN: Scoping Review. METHODS: A scoping review was conducted following the Joanna Briggs Institution methodology: (1) identify the research question, (2) define the inclusion criteria, (3) use a search strategy to identify relevant studies using a three-step approach, (4) select studies using a team approach, (5) data extraction, (6) data analysis, and (7) presentation of results. DATA SOURCES: Medline, CINAHL, EMBASE, PsychInfo and grey literature were searched on 3 August 2022. RESULTS: The search yielded 1771 articles from the databases, of which 20 were included. An additional seven articles were included from the grey literature. Paediatric and adult interventions were found targeting staff and family of which the general recommendations were summarised into communication models. CONCLUSION: Future research should focus on evaluating the effectiveness of interventions using a standardised scale, understanding the specific needs of families, and exploring the communication models developed in this review. IMPLICATIONS FOR CLINICAL PRACTICE: Communication models for triage nurses and all emergency department nurses were developed. These may guide nurses to improve their communication which will contribute to improving family satisfaction. REPORTING METHOD: PRISMA-ScR. TRIAL AND PROTOCOL REGISTRATION: Protocol has been registered with the Open Science Framework, registration number 10.17605/OSF.IO/ETSYB. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Family Nursing Care during the Transition to Parenthood: A Scoping Review.

BACKGROUND: Family-centered care places the family at the core of care, with family nurses playing a pivotal role in supporting and guiding members through pregnancy and the transition to parenthood and acknowledging the significant adjustments during these phases. AIM: To map the evidence concerning family nurses' care for families during the transition to parenthood. METHOD: The scoping review followed the Joanna Briggs Institute (JBI) methodology, focusing on family-centered care during pregnancy adaptation and the initial months of parenthood. Using a PCC (population, concept, and context) strategy, the research covered various databases: Scopus; Web of Science; and CINAHL Complete, MedLine Complete, and MedicLatina by EBSCOhost. RESULTS: A Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews (PRISMA-ScR) flow diagram was used to present the results. Eighteen articles were included, mainly from the Middle East and Europe, including cross-sectional studies and reviews. Key findings addressed the transitioning process to parenthood, the impact of family characteristics, and the role of family nurses in enhancing these processes. CONCLUSION: Home care is considered vital during this transition. Family nursing should concentrate on both individuals and the parental subsystem, addressing social determinants equitably. Through these efforts, they empower families to establish an optimal environment for children's development.

Caregiver experiences of caring for family members with urostomy: a qualitative study.

OBJECTIVE: In China, bladder tumors rank first for morbidity and mortality among urological and reproductive system tumors. Total radical cystectomy plus urinary flow conversion is the gold standard for the treatment of muscle-layer invasive bladder cancer. With an increasing number of radical cystectomies each year, the number of patients living with urostomy is growing. After discharge, primary care of urostomy patients is given at home, and high demands are placed on home caregivers due to issues of privacy and the complexity of replacing the urostomy device. This research explored the challenges faced by the family caregivers of urostomy patients. METHODS: We used descriptive qualitative research methods to conduct interviews with twenty-five family caregivers of patients with urostomy. Survey subjects were from five general hospitals. All interviews were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Three critical challenges were identified-confusion, family crisis, and struggle psychology. Within these three themes, six sub-themes were constructed by coders. They were knowledge and skill deficiency, strong insecurities and uncertainties, role conflict, economic burden, emotional overwhelmed and calm acceptance. CONCLUSION: Family caregivers play a critical role in patient care, and especially in urostomy care. Caregiving is associated with significant challenges that hinder the family caregiver's ability to effectively care for the patient, further diminishing the caregiver's quality of life. Therefore, healthcare professionals should consider the challenges faced by family caregivers and take measures to obviate them through education, preparation, and support.

Healthcare professionals perspective of the facilitators and barriers to family engagement during patient-and-family-centered-care interdisciplinary rounds in intensive care unit: A qualitative exploratory study.

OBJECTIVES: Family engagement in care for critically ill patients remains an inconsistent practice and an understudied area of nursing science. Rounds for this study is an interdisciplinary activity conducted at the bedside in partnership with patients, their families, and the health care professionals involved in providing the care. We sought to explore and describe the facilitators and barriers to family engagement during patient and family-centered interdisciplinary rounds in the intensive care unit. RESEARCH METHODOLOGY/DESIGN: This qualitative exploratory study is part of a multisite experimental study (#Pro2020001614; NCT05449990). We analyzed the narrative data from the qualitative questions added in the survey from 52 healthcare professionals involved in a multisite experimental study using Braun and Clarke's (2006) constructionist, contextualist approach to thematic analysis. SETTING: The study was conducted in the intensive care unit of two medical centers. MAIN OUTCOME MEASURES: The findings presented are themes illuminated from thematic analysis namely communication gaps, family's lack of resources, familial and healthcare providers' characteristics, lack of leadership, interprofessional support, policy, and guidelines. FINDINGS: Family engagement in critical care during interdisciplinary rounds occurred within the intersectionality among families, healthcare professionals' practice, and organizational factors. The facilitators for family engagement include supported, championed, and advocated-for family adaptation, teams, and professional practice, and organizational receptivity, and support. Communication and leadership are the precursors to family engagement. CONCLUSIONS: The findings added new knowledge for exploring the nature and scope of family engagement in critical care. Family engagement must be incorporated into the organizational vision and mission, and healthcare delivery systems. IMPLICATIONS FOR CLINICAL PRACTICE: There is a need to further investigate the resources, organizational support mechanisms, and systems that affect patients, families, and healthcare professionals, and the establishment of policies that will aid in reducing barriers to family engagement in the intensive care unit.

Family Self-Care in Chronic Disease Management: An Evolving Care Pattern?

Introduction: Self-care emerges in the family context, despite being seen as an individual determinant of health. The family, understood as a system and social unit, converges to a pattern of self-care and not to a sum of it, assuming relevance at certain moments of the life cycle, particularly in the management of chronic disease. Purpose: To perform the transposition of individual self-care to the family self-care, considering the current family's needs and characteristics, by adopting family self-care as the core concept of a care pattern as a determinant of family health. Conclusion: The family unit is the most influential factor in the health status of individuals, and it will be through family self-care behaviors that families can be healthier by managing their diseases more effectively. They seek to achieve family health, maintaining health through health promotion and disease management practices, always mediated by family self-care behaviors.

Effectiveness of an Integrative Empowerment Intervention for Families on Caring and Prevention of Relapse in Schizophrenia Patients.

Introduction: Patients with schizophrenia require extended treatment and recovery, leaving their families and support systems feeling helpless. Integrative empowerment is a strategy that utilizes outside-in and inside-out empowerment to increase the ability of families to care for their loved ones and prevent relapse. Objective: This study aimed to investigate the impact of integrative empowerment intervention on enhancing the family's ability to care for and prevent relapse in patients with schizophrenia. Methods: The study employed a quasi-experimental with a pre-test and post-test control group design. The research sample was comprised of 70 individuals from nuclear families residing in Semarang, all of whom were responsible for the care of individuals with schizophrenia. The participants were divided into two groups: the treatment group, consisting of 35 individuals, and the control group, also comprising 35 individuals. Participant selection was carried out using purposive sampling. Module and booklet were produced as an intervention tools. The integrative empowerment intervention program spanned a period of 5 weeks, involving one session per week, each lasting approximately 60-90 min. Data analysis was conducted through the utilization of the Wilcoxon and Mann-Whitney tests. The significance level for the study was set at p<.05. Results: There was a significant change in the family's ability to care for patients with schizophrenia before and after the integrative empowerment intervention (p<.001), while there was no change in the control group's ability to care for patients with schizophrenia (p>.05). Integrative empowerment had a significant impact on increasing the family's ability to care for and prevent relapse in patients with schizophrenia (p<.001). Conclusions: Nurses can help families strengthen their positive caregiving experiences through the home visit program by utilizing integrative empowerment. This study's findings highlight the importance of integrative empowerment in enhancing the family's ability to care for and prevent relapse in patients with schizophrenia.

Exploring critically ill patients' and their relatives' experiences of intensive care unit during COVID-19: A qualitative study.

BACKGROUND: Admission to an intensive care unit has physiological and psychological consequences for patients and families, including the family's fear that the patient might die. The COVID-19 pandemic underlined this and furthermore involved visiting restrictions separating patients and families. AIM: To explore how patients with confirmed COVID-19 and their relatives experienced an intensive care unit stay and its significance for family dynamics. STUDY DESIGN: A qualitative study was performed during the spring of 2020. Five dyadic interviews were conducted with COVID-19 patients admitted to an intensive care unit and their relatives. The analysis was inspired by Hochman's dyadic analysis. FINDINGS: The analysis revealed three themes: (1) From ill to critically ill: The trauma of separation and fear of losing loved ones; (2) The relatives' significant role in creating a shared coherent understanding of the admission in ICU due to COVID-19; (3) The nurses' roles as a go-between in maintenance of the family dynamic. CONCLUSION: Separation challenged family function and destabilized family dynamics. Nurses provided emotional support, information about and contact with the patient and relatives. The patients' distorted perception of reality and lack of memory were reconstructed in new family narratives, which offered relief and stabilization of family dynamics. The nurses entered into a triad with the patient and relatives, which also contributed to maintaining a relational dynamic in the family. RELEVANCE TO CLINICAL PRACTICE: Maintaining communication between health professionals, relatives and patients, and usage of virtual visits during intensive care unit stay can support the family relationship. Nurse therapeutic conversations might help families' in redefining their family dynamics after ICU admission.

Construction and Validation of a Simulation Scenario for Teaching Family-Focused Care in Pediatric Oncology.

Clinical simulation can be a promising teaching strategy to help nurses develop behaviors that improve family care actions, promoting safe and high-quality care. The objective of this study was to build, validate, and test a simulation scenario in pediatric oncology family-focused care (FFC) following an initial diagnosis of cancer. It is a six-step methodological study based on the philosophy of Family-Centered Care (FCC), with a user-centered design. The evaluators established a Content Validity Index (CVI) > 0.8 for validation. Pilot testing included the Simulation Design Scale. The data were analyzed by descriptive statistics. A total of 35 experts participated in this study. All 19 items in the scenario were validated and considered relevant, in a single round, with the item-level CVI ranging between 0.8 and 1 and a scale-level CVI of 0.92. The high-fidelity developed and validated clinical simulation scenario is a consistent tool for the education of advanced practice nurses.