The processes and outcomes related to 'family-centred care' in neuromotor and functional rehabilitation contexts for children with cerebral palsy: A scoping review.

OBJECTIVE: The aim of this study is to identify the main processes and outcomes related to family-centred care (FCC) in neuromotor and functional rehabilitation of preschool children with cerebral palsy (CP). BACKGROUND: FCC is considered a reference for best practices in child rehabilitation. CP is the most common cause of physical disability in childhood with repercussions on functionality. There is a gap in knowledge of the practical principles of FCC, and it is necessary to develop a reference model for the practice of child rehabilitation professionals. METHODS: In this scoping review, the main databases selected were as follows: LILACS; Pubmed; Embase; The Cochrane Library; CINAHL (EBSCO); Scopus; Web of Science; PEDro (Physiotherapy Evidence Database); Open Gray and other banks of thesis. The terms combined in the search strategy were as follows: 'Family-centered', 'Family-centred' and 'CP'. Inclusion criteria are as follows: studies on preschool-aged children with CP, undergoing family-centred functional therapeutic interventions (FCFTI) with outcomes on bodily structures and functions and/or activities and/or participation. RESULTS: The main participatory care methods identified were home intervention, environmental enrichment, collaborative realistic goal setting, planning of home-based activities and routine, child assessment feedback, family education/training, family coaching, encouraging discussion, observation of therapist and supervised practice. The main relational care qualities identified were as follows: respect, active listening, treat parents as equals, clear language, respect parents' ability to collaborate, demonstrate genuine care for the family, appreciate parents' knowledge and skills, demonstrate competence, experience and commitment. The main outcomes identified in children were improvement in motor and cognitive function and the child's functional ability. The main parentaloutcomes identified were empowerment, feeling of competence, self-confidence, motivation and engagement. CONCLUSION: The main differences in FCFTI programs refer to the parental education/guidance component and the amount of intervention carried out by parents. It is possible that the elements chosen by the therapist in a FCFTI depend on characteristics of the child and caregivers.

Conceptualizations of health, ability to act upon those definitions and desire for supports among families from historically marginalized communities.

Respect for parents' values and clinician-parent collaboration is less common among families from historically marginalized communities. We investigated how parents from marginalized communities operationalize health and their preferences for paediatric primary care. We recruited families who spoke English, Haitian Creole or Spanish with at least one child younger than 6 years old. Staff queried families' values and life experiences, perspectives on health and healthcare, social supports and resources. Fourteen interviews with the parents of 26 children were thematically analysed. Interviews revealed the following four themes: (1) parents' definitions of 'health' extend beyond physical health; (2) families' ability to actuate health definitions is complicated by poverty's impact on agency; (3) parents engage in ongoing problem recognition and identify solutions, but enacting solutions can be derailed by barriers and (4) parents want support from professionals and peers who acknowledged the hard work of parenting. Eliciting parents' multidimensional conceptualizations of health can support families' goal achievement and concern identification in the context of isolation, limited agency and few resources. Efforts to improve family centred care and reduce disparities in paediatric primary care must be responsive to the strengths, challenges, resources and priorities of marginalized families.

Parent and staff perceptions of patient and family-centred care in a Brazilian paediatric's hospital: Quantitative study.

BACKGROUND: Patient and family-centred care (PFCC) is a healthcare model has been acknowledged as the central pillar in the paediatric health care that recognizes the family's role and experience in the health care delivery. AIMS: This study investigated and compared the perception of PFCC from the perspective of staff and parents of hospitalized children and adolescents. METHODS: A quantitative and comparative cross-sectional survey was used in a convenience sample of 105 staff and 116 parents, who completed the Brazilian versions of the Perceptions of Family Centred Care-Parent and Staff questionnaires, with additional questions on their characteristics. Descriptive and analytical statistics were used, as well as the Kruskal-Wallis and Mann-Whitney tests and Spearman's correlation coefficient. RESULTS: Both parents and staff responses were positive and parents had significantly higher scores for 19 of the 20 items (p < 0.001). The item related to parental participation did not show any significant difference between the groups. CONCLUSION: The positive perception of PFCC for both groups is consistent with recommendations for expanded care that includes patient and family in healthcare settings. Parents' perception was more positive than staff perceptions of their delivery of family-centred care in hospital. The lowest score for the parent support subscale in both groups requires investigation.

Social support network of family members of abused children and adolescents: Perspectives and possibilities.

AIMS AND OBJECTIVES: To analyse the network of care and social support from the perspectives of family members of children and adolescents who have been abused. BACKGROUND: The theoretical-methodological background of the ecological model for understanding violence and the Paradigm of Complexity provide a broad perspective of violence. The paradigm considers all aspects that constitute a phenomenon as well as particular features. DESIGN: Qualitative research based on the Paradigm of Complexity, developed by Edgar Morin, the primary philosopher. We have adhered to the COREQ Checklist guidelines for qualitative research. METHODS: Data were collected through Minimal Maps of Personal Social Networks, and semi-structured interviews were held with 15 families who were assisted by a nongovernmental organisation in a Brazilian city. The notions of comprehension and contextualisation guided the data analysis. RESULTS: Two categories emerged from the data analyses: "Social isolation" and "Affective relationships needs." The maps revealed a weakened and limited network with low-density, homogeneous bonds and few significant bonds. Therefore, the network provided predominantly instrumental and material social support with few important effective relationships. The participants disclosed some strategies to empower their lives. CONCLUSIONS: We conclude that it is urgent to develop strategies in a broad manner to promote family empowerment, especially on education and employment dimension, and to construct supportive and respectful relationships between services and families as well. RELEVANCE TO CLINICAL PRACTICE: The present study contributes to international clinical nursing, especially in low- and middle-income countries, by discussing (a) looking at and caring for family members of children and adolescents who have been abused in a contextualised manner; (b) family empowerment, which enables them to have access to healthier environments and to educational/employment opportunities; and (c) broad comprehension of health care among the family members, which provides perspectives not only for looking at violence but also for strengthening supportive social relationships.

Families on adult intensive care units: Are they really satisfied? A literature review.

OBJECTIVES: Family satisfaction in intensive care units (ICU) is of increasing relevance for family-centred cared. The objective of this review was to explore the characteristics of studies that have used questionnaires to measure the satisfaction of family members of ICU patients. REVIEW METHODS: A literature review was performed for studies evaluating family satisfaction in the ICU, independent of design. The following data were obtained for each selected article: publication year, country of origin, design, number of family members, instrument for family satisfaction, instrument score range, response rate, moment at which satisfaction was evaluated, and average level of reported satisfaction. DATA SOURCES: The following databases were systematically searched: PubMed, CINAHL, ProQuest Nursing, ProQuest Social Science, ProQuest Psychology, Science Direct, PsycINFO, LILACS, and Scielo. RESULTS: Thirty-seven articles met inclusion criteria, showing high levels of family satisfaction. Among these, nine different questionnaires were identified. In 31.6% of the studies, family satisfaction was evaluated during the ICU stay, whereas 36.9% did not report the evaluation moment. The mean response rate was 65.5%, and response rates greater than 70% were found only in 28.2% of the studies. CONCLUSIONS: High satisfaction levels among family members of ICU patients must be contextualised in light of questionnaire heterogeneity, low response rates, and variability in the moment at which family satisfaction is evaluated. The creation of methodological standards for evaluating and reporting family satisfaction could facilitate comparing results between investigations in this field.