Impact of Shared Decision-Making on Family Satisfaction With Intensive Care Services: 'Share With Care' has a New Meaning in ICU.

Background: Physician's clinical inputs and informed bystander opinions are essential for successful intensive care unit (ICU) patient outcomes. There is insufficient data regarding the impact of shared decision-making on treatment outcomes and family satisfaction in Indian ICU settings. We aimed to determine the effect of shared decision-making factors on family satisfaction with ICU services. Patients and Methods: Family bystanders of 336 ICU patients with a stay >72 hours were conveniently surveyed across 13 months prospectively using Family Satisfaction in the Intensive Care Unit 24 Revised (FS-ICU 24R) questionnaire. We analyzed the responses to determine shared decision-making factors impacting family satisfaction. Results: Univariate analysis of ten variables of FS-ICU 24R questionnaire decision-making subscale revealed that consistency of information (OR 8.71, P < 0.001), honesty of information (OR 7.04, P < 0.001), and frequency of communication with doctors (OR 6.25, P < 0.001) were associated with highest odds of family involvement and satisfaction. Multivariable logistic regression showed that consistency of information (adjusted OR 3.85, P < 0.001) and frequent doctor communication (adjusted OR 2.22, P = 0.02) were independent predictors associated with family satisfaction. The number of decision-makers (P = 0.463) or family's prior ICU experience (P = 0.430) was not associated with family satisfaction. Conclusion: A consistent and honest effort to cater to the family's information needs and frequent physician-bystander interaction is essential for family's satisfaction with ICU services. This even outweighs other decision-making factors such as number of decision-makers and their prior ICU experience. Incorporating shared decision-making in counseling should be a continuing practice.Trial registry name: Clinical Trials Registry - India.Registration number: CTRI/2022/09/045571.

Survey of families' psychosocial needs in the context of pediatric cancer: a first step toward the participatory development of a group intervention.

BACKGROUND: Pediatric cancer is associated with stressors that increase the risk for distress across family members. Psychosocial support varies and may not meet family needs and preferences. This study investigated family members' points of view regarding psychosocial service needs, as a first step of a large participative research project aiming to develop interventions grounded in key stakeholders' perspectives. METHODS: This study documented the perceptions of 370 parents, 11 siblings, and 60 individuals who themselves had received a cancer diagnosis as a child and employed a mixed-methods design through an online survey. RESULTS: Respondents indicated their key concerns were coping with intense emotions, accepting their feelings toward the diagnosis, and managing the psychological burden that accompanies cancer, its treatment, and associated life changes. CONCLUSION: The results suggest that an intervention program should address emotion management as well as interventions focusing on the entire family system.

Determining the needs of relatives of patients with a COVID-19 diagnosis in the intensive care unit.

BACKGROUND: The precautions taken in the intensive care unit (ICU) during the COVID-19 pandemic have caused a change in the needs of relatives of patients. OBJECTIVE: This research was conducted to determine the needs of relatives of ICU patients diagnosed with COVID-19. METHODS: The sample of this cross-sectional study consisted of 68 relatives of patients treated with COVID-19 in the ICU. Data were collected with a "Patient Relatives Information Form", a "Factors Affecting the Needs of the Relatives of Patients in the Intensive Care Unit Form", and the Critical Care Family Needs Inventory (CCFNI). A multivariate and univariate general linear model was used to determine the factors affecting the CCFNI total and subscale scores. Higher CCFNI scores are indicative of higher family need. RESULTS: The assurance (3.5 ± 0.4), information (3.4 ± 0.5), proximity (3.0 ± 0.6), comfort (2.8 ± 0.6), and support (2.7 ± 0.5) dimensions were important needs of relatives of patients hospitalised in the ICU. There was a weak negative correlation between participants' ages and CCFNI scores (p = 0.041). According to the univariate general linear model, significant difference was found between the total CCFNI scores (p = 0.032; 95% confidence interval [CI]: 2.68-3.03), based on multivariate general linear model proximity scores (p = 0.000; 95% CI: 2.49-2.91), and support scores (p = 0.029; 95% CI: 2.26-2.68) and the effect of ICU visit restrictions on relatives' anxiety. Additionally, based on the multivariate general linear model, significant difference was found between the assurance scores and the presence of people who provided support to avoid disruption of responsibilities at home (p = 0.025; 95% CI: 3.30-3.54) and between the proximity scores and the expectations of intensive care nurses (p = 0.028; 95% CI: 2.83-3.59). CONCLUSION: This study showed that relatives of ICU patients had high levels of needs. Relatives had high needs for assurance and information, whereas their needs for comfort and support were low. As the age of patients' relatives increased, their levels of needs decreased. Relatives of the patients who received support to help with their obligations at home had increased assurance needs, and those who had anxiety about the ICU visit restrictions had increased proximity and support needs.

Meta-Analyses of the Relationships between Family Systems Practices, Parents' Psychological Health, and Parenting Quality.

(1) Background: Family systems theories include assertations that both personal and environmental factors are determinants of parents' psychological health, well-being, and parenting quality. Applied family systems theories focus on determinants that can be operationalized as intervention practices. The analyses described in this paper focused on the direct and indirect effects of four family systems practices (family needs, resources, supports, and strengths), parents' psychological health (depression, well-being, etc.), and parenting quality (parenting beliefs, involvement, and practices) in families of children with identified disabilities, medical conditions, or at-risk conditions for poor outcomes; (2) Methods: Data from previously completed meta-analyses of the relationships between family systems practices and parents' psychological health outcomes and parenting quality outcomes were reanalyzed. Next, a meta-analysis of the relationships between parents' psychological health and parenting quality was completed to identify which predictors were related to which parenting quality outcomes. Both main effects and mediated effects were examined; (3) Results: The four family systems practices were each related to six different psychological health measures and three parenting quality measures. The six different parental psychological health measures were also related to the three parenting quality measures. The relationships between family systems practices and parenting quality were partially mediated by parents' psychological health; (4) Conclusions: The effects of family systems practices and parents' psychological health on parenting quality were primarily direct and independent. The relationships between family systems practices and parenting quality were partially mediated by parents' psychological health. Future research should focus on the identification of other mediator variables found to be important for explaining the indirect effects of family systems practices measures on parenting beliefs, behavior, and practices.

Family members' perception of their needs in critical care units at a tertiary hospital in Malawi: A qualitative study.

BACKGROUND: Family members experience an emotional crisis when their loved one is critically ill and admitted to a critical care unit (CCU). An extensive literature has explored optimal ways to interact with families in the critical care setting, including intervention studies. What is less explored are perceptions of family members in low-income settings including Malawi. In such settings, perceptions may differ as a consequence of different cultural practices and resource limitations (personnel and technology). Therefore, this study explored family members' perceptions of their needs in CCUs at a tertiary hospital in Malawi. STUDY DESIGNS AND METHODS: The study used a qualitative descriptive design. Data were gathered through interviews with 12 participants who were purposively selected from immediate family members of patients hospitalized for 48 h or more in adult intensive care unit (ICU) and high dependency unit (HDU). The interviews were audio recorded and transcribed verbatim. Data analysis followed the steps of content analysis. FINDINGS: The following four themes were identified: perceived information, physical, and psychosocial needs, and coping mechanisms of the family members. The family members needed information about their patient's progress frequently and viewed this as a priority compared to other needs such as comfort and food. CONCLUSION: This study suggests that there should be a collaborative relationship between the CCU team and family members in order to meet their needs. Findings affirm the need for health professionals to develop guidelines or standards that promote frequent discussions with CCU family members as a means to provide support and lessen anxiety.

Family Needs Assessment of Patients with Cerebral Palsy Attending Two Hospitals in Accra, Ghana.

BACKGROUND: The family represents the most essential and supportive environment for children with cerebral palsy (CP). To improve children's outcomes, it is crucial to consider the needs of families in order to offer family-centered care, which tailors services to these needs. OBJECTIVE: We conducted a needs assessment to identify the family needs of patients with CP attending two hospitals in Accra. METHODS: The study was a cross-sectional study involving primary caregivers of children with CP attending neurodevelopmental clinics. Structured questionnaires were used to collect data spanning an 8-month period. The data were summarized, and statistical inference was made. RESULTS: Service needs identified were childcare, counseling, support groups, financial assistance, and recreational facilities. Information needs included adult education, job training/employment opportunities, education, health and social programs, knowledge about child development, and management of behavioral and feeding/nutrition problems. Reducing extensive travel time was desirable to improve access to healthcare. With the increasing severity of symptoms came the need for improved accessibility in the home to reduce the child's hardship, as well as assistive devices, recreational facilities, and respite for the caregiver(s). CONCLUSION: Families of children with CP have information, service, and access needs related to their disease severity and family context.

Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness.

Background. Many patients with severe brain damage may survive and remain in a prolonged disorder of consciousness (PDoC), impacting the quality of life (QoL) and needs of their family caregivers. However, the current literature on the factors influencing these needs is contradictory. We aim to describe the needs, QoL, and emotional distress of caregivers of patients with PDoC. Methods. Questionnaires investigating the importance and satisfaction of six categories of needs (i.e., health information, emotional, instrumental, and professional supports, community support network, and involvement in care), QoL, and emotional distress were completed by the main caregivers of PDoC patients. Results. We analyzed 177 questionnaires. Seventy-nine percent of the needs were considered as important or very important, and 44% were partially met or unmet. The needs for health information and professional support were the most important, while the needs for involvement in care and for health information were the most satisfied. Mean QoL was low and emotional distress high. Variables such as care setting and time since brain injury affected the level of QoL and distress. Conclusion. The needs for health information and professional support should receive particular attention. Given their low QoL and high distress, adequate support structures should be provided to caregivers of PDoC patients.

Chronic illness and critical care-A qualitative exploration of family experience and need.

BACKGROUND: People with chronic illnesses such as cancer and cardiovascular disease are living longer and often require the support of critical care services. Current health care provision means patients may be discharged home once clinically stable despite still having high care demands including social, emotional, or physical needs. Families are often required to assume caregiving roles. Research into family burden using quantitative methods has increased awareness, however, little qualitative work exists and the development of support interventions for families is required. AIMS: To explore the experience and needs of family members of people with an existing chronic illness who are admitted to the Critical Care Unit (CCU), and to identify the desired components of a family support intervention in the form of a resource toolkit. STUDY DESIGN: A qualitative exploration of family experience and need, and content development for a resource toolkit using focus group methodology. Two focus groups and one face-to-face interview were conducted involving nine adult (≥18 years) family members of adult patients with chronic illness admitted to critical care in the preceding 9 months across two specialist hospitals in the UK. These were digitally recorded, transcribed, and thematically analysed. RESULTS: Four themes were identified: importance of communication, need for support, trauma of chronic illness, and having to provide "Do-it-Yourself" care. The immense responsibility of families to provide care throughout the illness trajectory is highlighted. Understandable information is essential for a family support toolkit. CONCLUSION: Family members often view a critical care episode broadly from diagnosis through to recovery/rehabilitation. Basic communication training skills within critical care should be ensured, alongside coordination of simple solutions. The potential traumatic impact on families should be highlighted early within the pathway, and positive aspects used to harness essential family support. A simple and coordinated approach to a toolkit is preferred. RELEVANCE TO CLINICAL PRACTICE: This study highlights that a critical care experience may impact broadly beyond CCU, and the importance of informing patients and families of this potential experience, prior to or on admission, to aid preparation. Further highlighted is the need for contemporaneous and accurate information from clinicians involved in care. Families report a better experience when there is good collaboration across critical care services and admitting clinical teams. Early involvement of families in overall discharge planning is essential to allow patients and families to adjust and plan for recovery.

Maternal perspectives: The needs of Saudi families of children with Down's syndrome.

Down syndrome (DS) is a chromosomal condition that is affecting an increasing number of infants born in Saudi Arabia. This study investigates the needs of families with children with DS in Saudi Arabia from mothers' perspectives and in a cultural and religious context. An exploratory qualitative research design was used, and semi-structured interviews were conducted with 14 mothers of children with DS. Interview data were thematically analyzed. The most important need was found to be financial or tangible support. An increase in benefits or monthly financial allowances and social security insurance would address these concerns. Societal support is also needed; mothers want DS to be perceived differently and require more support, including better rehabilitation and education services. Informational support is needed to improve the conditions of children with DS. Recommendations for improving the quality of life of children with DS are discussed.

The Bangladeshi Rights and Protection of Persons With Disability Act of 2013: A Policy Analysis.

The government of Bangladesh enacted the Rights and Protection of Persons with Disability Act of 2013 (the Act) in line with the United Nations Convention on the Rights of Persons with Disabilities. This article sheds light on the Act with particular emphasis on (a) support offered to children with disabilities (CWDs) and their families to address their needs; and (b) the extent to which the Act is in line with the international disability policy analysis framework. We compared the Act with the 18 core concepts of disability policy developed by Turnbull et al. (2001). The results affirm the government's effort toward Sustainable Development Goals in providing support to CWDs and their families. They indicate a high degree of congruency of the Act with the core concepts. The findings also highlight the need to embrace the concepts of autonomy, confidentiality, and family-centeredness in great detail in any policy initiatives pertaining to CWDs. Furthermore, the finding shows that collaboration and coordination among ministries are imperative to achieve the goal of policies related to disability. In addition, the results highlight the need for more budgetary allocation and robust monitoring systems to track the progress of policy initiatives. As policy implementation is affected by changes in global contexts such as the coronavirus disease 2019 pandemic, policymakers in Bangladesh and other low- and middle-income countries should ensure that emergency responses are disability-inclusive and appropriate for CWDs. To ensure a disability-inclusive response, it is critical to engage individuals with disabilities and their families in meaningful consultations to identify their needs.

A Novel Hospital-to-Home System for Children With Medical Complexities: Usability Testing Study.

BACKGROUND: Children with medical complexity (CMC) are a group of young people who have severe complex chronic conditions, substantial family-identified service needs, functional limitations, and high health care resource use. Technology-enabled hospital-to-home interventions designed to deliver comprehensive care in the home setting are needed to ease CMC family stress, provide proactive and comprehensive care to this fragile population, and avoid hospital admissions, where possible. OBJECTIVE: In this usability testing study, we aimed to assess areas of strength and opportunity within the DigiComp Kids system, a hospital-to-home intervention for CMC and their families and care providers. METHODS: Hospital-based clinicians, family members of medically complex children, and home-based clinicians participated in DigiComp Kids usability testing. Participants were recorded and tasked to think aloud while completing usability testing tasks. Participants were scored on the metrics of effectiveness, efficiency, and satisfaction, and the total usability score was calculated using the Single Usability Metric. Participants also provided insights into user experiences during the postusability testing interviews. RESULTS: A total of 15 participants (5 hospital-based clinicians, 6 family members, and 4 home-based clinicians) participated in DigiComp Kids usability testing. The participants were able to complete all assigned tasks independently. Error-free rates for tasks ranged from 58% to 100%; the average satisfaction rating across groups was ≥80%, as measured by the Single Ease Question. Task times of participants were variable compared with the task times of an expert DigiComp Kids user. Single Usability Metric scores ranged from 80.5% to 89.5%. In qualitative interviews, participants stressed the need to find the right fit between user needs and the effort required to use the system. Interviews also revealed that the value of the DigiComp Kids system was in its ability to create a digital bridge between hospital and home, enabling participants to foster and maintain connections across boundaries. CONCLUSIONS: Usability testing revealed strong scores across the groups. Insights gained include the importance of tailoring the implementation of the system to match individual user needs, streamlining key system features, and consideration of the meaning attached to system use by participants to allow for insight into system adoption and sustainment.

Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs.

BACKGROUND: Spinal muscular atrophy (SMA) is a rare degenerative neuromuscular disease, mostly occurring in infants and children, leading to muscle wasting and weakness, and premature death. Due to new developments of multiple disease-modifying treatments within the last years, the interest of research in patients affected by SMA increased steadily. However, the psychosocial situation of parents as informal caregivers is still rarely addressed. OBJECTIVES: This review aims to highlight quantitative and qualitative data about the psychosocial situation, caregiver burden, and needs of parents as informal caregivers for children and adolescents with SMA. METHODS: A systematic literature review was performed including quantitative and qualitative original studies focusing on different psychosocial aspects and outcomes for parents of children and adolescents < 21 years of age with SMA type I-IV (PROSPERO; registration number CRD42020219020). We searched the following databases in November 2020 with a research update in August 2021: MEDLINE, CINAHL, PsycINFO and Web of Science. RESULTS: In total, 24 articles from 23 studies were selected for inclusion (15 quantitative studies, 7 articles from 6 qualitative studies, 2 mixed methods studies). The synthesis of included studies shows multiple sources of psychosocial burden for parents of children and adolescents affected by SMA: Most studies found reduced levels of quality of life, moderate to high levels of caregiver burden and distress, as well as physical and mental health symptoms. Further, findings indicate several unmet family needs regarding information, care coordination, treatment decisions, financial support, and adequate supportive care services. CONCLUSION: Parents of children and adolescents with SMA face multiple sources of psychosocial stressors, caregiver burden and various unmet family needs. To unburden families, the needs of parents as caregivers should be included in integrated care paths for SMA to improve their psychosocial situation and thus their ability to care for their children and to treat or prevent physical and mental health problems due to overburdening. Future research should focus not only on quality of life and on caregiving-related burden but should also examine the clinical relevance of reported symptoms to support the implementation of adequate support services for families affected by SMA.

Family quality of life and autism spectrum disorder: Comparative diagnosis of needs and impact on family life.

BACKGROUND: Families of children with autism spectrum disorders (ASD) face ongoing challenges that can affect their family life. Helping those families cope with the impact of ASD and promote more positive family and child outcomes requires research to better understand the differential aspects of quality of life for those families. AIM: This article examined the quality of life of 77 families (n = 45 families with children with ASD aged 0-12 years old, and n = 32 families with other developmental disabilities). METHODS AND PROCEDURE: The Family Quality of Life Scale (FQOL) was applied. OUTCOMES AND RESULTS: The relationships between importance and satisfaction were analyzed, contrasting differences between families, and studying the influence of age. Results show the presence of common needs, as the higher ratings in importance versus satisfaction evidenced, but also specific and more evident needs in families of children with ASD, motivated by the differential characteristics of the disorder and their environment. Age was relevant to focus support on priority areas. CONCLUSION: The need to adapt to family individualities to promote their quality of life was concluded. IMPLICATIONS: Those findings reinforce the importance of bringing together theoretical knowledge and evaluation of professional practice as a framework for converting the latter into good practices and quality actions.

Validity, internal consistency, and responsiveness of the Turkish version of The Family Needs Questionnaire-Revised.

OBJECTIVE: The aim of this study is to conduct validity (language, content and confirmatory factor), internal consistency and responsiveness properties for Turkish version of the Family Needs Questionnaire-Revised (FNQ-R). METHODS: It was carried out with 185 family members who met study inclusion criteria and provided care for the patients with TBI. Sociodemographic characteristics form and the FNQ-R were used as data collection tools. Validity was assessed by language validity, content validity and confirmatory factor analysis. Internal consistency and item-total correlation were used for reliability analysis. Responsiveness analyses were evaluated with infit and outfit statistics, person-item maps and point biserial correlation. RESULTS: The language validity of FNQ-R was provided by translation-back translation. The content validity index values were above 0.80. Fit indices were at an acceptable level in confirmatory factor analysis. Cronbach alpha of subscales was found to be between 0.69 and 0.85 and Spearman-Brown split-half reliability was between 0.68 and 0.85. A positive and significant relationship was found between the subscales. The item fit statistics were at the acceptable level. CONCLUSION: It has been determined that the FNQ-R is a valid and reliable measurement tool to identify the needs of the family members who provide care to patient with traumatic brain injury and can be used for Turkish population.

Transitions to virtual early childhood home visitation during COVID-19.

COVID-19 has disrupted many of the preventive service sectors designed to promote infant mental health. The purpose of this study is to examine provider and supervisor transition strategies as well as maternal-child outcomes during the transition from in-person to virtual early childhood home visitation services in Los Angeles County. Los Angeles County is one of the largest home visitation sectors in the U.S. and disproportionately impacted by the COVID-19 pandemic. Transitioning from in-person to virtual home visitation was an important step in ensuring the continuity of infant mental health services. Home visitors reported relative ease in transitioning to virtual services themselves but noted that families encountered greater difficulty. The most helpful strategies to support this transition included training, ongoing reflective supervision, and provision of technology. Family level analysis revealed that positive screening rates for anxiety and depression decreased during the pandemic as did referrals for most support services. These findings likely highlight challenges in delivering virtual home visitation. Understanding how transitions in a key infant serving sector were managed serves an important role in forecasting for the future and preparing for future public heath emergencies.

El COVID-19 ha interrumpido muchos de los sectores de servicios preventivos diseñados para promover la salud mental infantil. El propósito de este estudio es examinar las estrategias de transición del proveedor y del supervisor, así como también los resultados materno-infantiles durante la transición de los servicios de visitas en la temprana niñez a casa, presenciales a virtuales, en el Condado Los Ángeles. El Condado Los Ángeles es uno de los más grandes sectores de visitas a casa en los Estados Unidos y desproporcionalmente afectado por la pandemia del COVID-19. La transición de las visitas a casa presenciales a virtuales fue un importante paso para asegurar la continuidad de los servicios de salud mental infantil. Los visitadores a casa reportaron una facilidad relativa en el proceso de transición a los servicios virtuales para sí mismos, pero notaron que las familias encontraron mayor dificultad. Entre las estrategias que más ayudaron a apoyar esta transición se incluyen el entrenamiento, la continuada supervisión con reflexión y el suministro de tecnología. Los análisis del nivel familiar revelaron que los positivos puntajes de detección de la ansiedad y depresión disminuyeron durante la pandemia como también sucedió con las referencias a la mayoría de los servicios de apoyo. Estos resultados subrayan probablemente los retos de ofrecer las visitas virtuales a casa. Comprender cómo las transiciones en un sector clave de servicios a infantes se manejaron sirve como un importante papel para pronosticar el futuro y prepararse para las futuras emergencias en el campo de la salud pública.

Le COVID-19 a perturbé bien des secteurs de service de prévention conçus pour promouvoir la santé mentale du nourrisson. Le but de cette étude est d'examiner les stratégies de transition du prestataire et du superviseur durant la transition de services de visite à domicile de la petite enfance en personne à virtuels dans le Comté de Los Angeles aux Etats-Unis. Le Comté de la ville de Los Angeles est l'un des plus grands secteurs de visites à domicile aux Etats-Unis et disproportionnellement impacté par la pandémie du COVID-19. La transition d'une visite à domicile en personne à une visite virtuelle a été un pas important pour s'assurer de la continuité des services de santé mentale du nourrisson. Les visiteurs à domicile ont fait état d'une facilité relative dans la transition aux services virtuels en eux-mêmes mais ont noté que les familles faisaient face à une difficulté plus grande. Les stratégies les plus utiles pour soutenir cette transition ont inclus la formation, la réflexion continue de la supervision et l'aide de la technologie. Les analyses au niveau familial ont révélé que des taux de dépistage positifs pour l'anxiété et la dépression ont baissé durant la pandémie comme l'ont fait les références pour la plupart des services de soutien. Ces résultats mettent en lumière les défis rencontrés par la visite virtuelle à domicile. Comprendre comment, dans un secteur clé de service au nourrisson, les transitions sont gérées sert un rôle important pour prévoir le futur et se préparer à des urgences de santé publique dans le futur.

A comparative study of the perceptions of family members patients hospitalized in intensive and cardiac care units (CCU and ICU) in regard to the importance of family needs in Golestan University of Medical Sciences 2020.

INTRODUCTION: Intensive care units (ICUs) cause double stress and tension in hospitalized patients' family members. Improving care quality in these wards requires estimating the importance of the families' needs by the nurses. Therefore, the present research was designed to determine and compare the perceptions of family members of the patients hospitalized in the ICUs and cardiac care units (CCUs) about the importance of family needs and their relationship with some factors in the Golestan University of Medical Sciences, 2020. METHODS: This was a descriptive-analytical study. Eighty-eight companions of the patients admitted in the ICU and 88 companions of the patients admitted in the CCU were studied by stratified sampling, proportional, and then, available allocation. To analyze the data, Mann-Whitney, Kruskal-Wallis, and multivariate analysis of variance in the SPSS 18 statistical software were used (the significance level was 0.05). RESULTS: The results revealed that in both the ICUs, the variable "the family relationship of hospitalized patients' companions" and their needs was found to be significantly different in general. This difference in all dimensions was related to the relationship between the spouse and the patient. Generally, there was no significant difference between the gender of the patient's companion and the importance of family needs in the CCU ward, but this difference was significant in general and in all dimensions in the ICU ward so that the importance of all the needs was more in the female companions. CONCLUSION: This study proved that the need in the "confidence" dimension is the most important need of the family of patients admitted to the two wards (CCU) and (ICU).

Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study.

PICU hospitalization is particularly stressful for families. When it is prolonged and the prognostic is uncertain, it can significantly and negatively affect the whole family. To date, little is known on how families with a chronic critically ill (CCI) child are affected. This national study explored the specific PICU-related sources of stress, family functioning and needs of families of CCI patients during a PICU hospitalization. This descriptive qualitative study was conducted in the eight pediatric intensive care units in Switzerland. Thirty-one families with a child meeting the CCI criteria participated in semi-structured interviews. Interviews, including mothers only (n = 12), fathers only (n = 8), or mother and father dyads (n = 11), were conducted in German, French, or English by two trained researchers/clinical nurses specialists. Interviews were recorded, transcribed verbatim, and analyzed using deductive and inductive content analyses. Five overarching themes emerged: (1) high emotional intensity, (2) PICU-related sources of stress, (3) evolving family needs, (4) multi-faceted family functioning, and (5) implemented coping strategies. Our study highlighted the importance of caring for families with CCI children. Parents reported high negative emotional responses that affect their family functioning. Families experience was highly dependent on how HCPs were able to meet the parental needs, provide emotional support, reinforce parental empowerment, and allow high quality of care coordination.

Psychometric evaluation of "Family Inventory of Needs" in parents of cancer children.

PURPOSE: Early childhood cancer creates various challenges in parents' lives and influences new needs, the identification of which requires a valid and reliable tool. The aim of this study was to translate and validate the Family Inventory of Needs (FIN) with the parents of children with cancer. METHOD: In this methodological research, 210 parents of children with cancer visiting pediatric oncology referral centers in Iran were selected through convenience sampling, based on the study inclusion criteria. The Farsi version of FIN was developed through translation and back-translation. Face validity as well as construct validity using the confirmatory factor analysis (CFA) were performed. The correlation between the score of FIN and the score of Caring Ability of Family Caregivers of Patients with Cancer-mothers' version (CAFCPC-mother's version) was also calculated in order to evaluate the convergent validity. Furthermore, the stability and internal consistency reliability were investigated using software packages LISREL and SPSS. RESULTS: The results of CFA showed that the single-factor structure of the tool with 20 items has an appropriate fit with the data and is therefore approved. Pearson coefficient (r) of the correlation between the mean scores of the NFI and the CAFCPC-mothers' version was calculated to be 0.17 (p < 0.01). The Cronbach's alpha of the tool was calculated as 0.90, and the test-retest correlation coefficient as ICC = 0.91. CONCLUSION: The Farsi version of the FIN has appropriate psychometric properties among the population of Iranian parents of children with cancer. It may therefore be a suitable tool for measuring the emotional, physical, and psychological support provided for the parents of children with cancer.

User-centered practices in the eyes of informal caregivers of in-patients with severe acquired brain injury: needs, caring experience, and satisfaction.

OBJECTIVE: This study examines the perceived needs, experience, and satisfaction of informal caregivers (ICGs) in in-hospital settings, related to their involvement in the design and delivery of services together with hospital staff, namely co-production. DESIGN: To obtain a picture of current ICG-staff relationship, a multicenter observational study was carried out. Participants were 75 ICGs recruited in five dedicated in-patient neurorehabilitation wards. Participants answered a self-report questionnaire tapping perceived information/communication needs, emotional/social needs, and their satisfaction; family-centered practices implemented by the staff (namely involving practices and cooperative communication); and ICGs' satisfaction with the service. RESULTS: Need satisfaction related positively to staff practices aimed at involving IGCs in treatment and training, but not in decision-making. Involving practices concerning treatment also related positively to ICGs' information/communication needs. In addition, the more the staff involved ICGs in decision-making and promoted cooperative communication regarding treatment, the more ICGs felt that their collaboration in the healthcare process was valuable. Finally, all involvement practices and cooperative communication were positively related to ICGs' overall satisfaction with the service. CONCLUSION: The results of the study help to identify gaps in meeting ICGs' needs and to promote strategies to implement family participation toward co-production in in-hospital settings.

Restrictive Reciprocal Obligations: Perceptions of Parental Role in Career Choices of Sub-Saharan African Migrant Youths.

This study employed interpretivist, grounded theory method and utilized semi-structured interviews to explore how 31 African migrant high school and university students from eight sub-Saharan African representative countries and currently residing in Townsville, Australia, perceived the roles of their parents in their career development. The study findings revealed that the support (financial, social and emotional) and encouragement (sacrificial love, role modeling and guidance) received from parents underpinned the youths' perceptions of their parents as influential in their career trajectories. Though participants acknowledged their indebtedness to parents and the system that nurtured them, they faced a dilemma conforming to parental preference or personal conviction, which presented "a fork in the career decision-making road." Study findings indicate that participants' reactions and strategies for negotiating parental approval differ based on entry status and gender. Most participants, particularly those with professional entry status, conformed to their parents' career choice for fear of failure, while a few who followed their personal interests negotiated parental approval through dialogue and educating parents. Male participants with humanitarian entry status opposed their parents' career preferences and followed their own personal interests. Taken together, all participants had strong desire to obtain parental approval and whether sought early or later, the main focus for all participants was prioritizing family needs and obligations. The practical implications of these findings for all stakeholders are discussed.