Hospital care of children in four countries

Background. While perceptions of parents and staff about care of hospitalized children have been explored in developed countries, little research has examined these in developing countries. Assumptions about family-centred care are often based on Western values, with little evidence of how cultural constructs affect care delivery in developing nations. Aim. This paper reports a study to provide evidence from which culturally-appropriate hospital care for children can be delivered. Methods. Using a rigorously devised and trialed questionnaire, attitudes of staff and parents about the way children are cared for in children's hospitals in four countries were examined and subjected to a four way analysis: parents and staff within and between developed and developing countries. Results. There were no questions where all parents and staff in both developed and developing country groups were in complete agreement. However, there was some indication that, while culture plays a major role in paediatric care delivery, basic concepts of family-centred care are similar. Conclusions. The findings are limited by the sampling strategy. Nevertheless, while differences were found between parents' and staff's expectations of the delivery of care to children in hospitals, similarities existed and the influence of culture cannot be ignored. Education programmes for staff and parents should reflect these influences to ensure the optimum delivery of family-centred care, regardless of where the hospital is situated.

Family violence: Walking the tight rope between maternal alienation and child safety

Mothers are often alienated from their children when child abuse is suspected or confirmed, whether she is the primary abuser of the child or not. An abusive or violent partner often initiates the process of maternal alienation from children as a control mechanism. When the co-occurrence of maternal and child abuse is not recognised, nurses and health professionals risk further alienating a mother from her children, which can have detrimental effects in both the short and long term. Evidence shows that when mothers are supported and have the necessary resources there is a reduction in the violence and abuse she and her children experience; this occurs even in situations where the mother is the primary abuser of her children. The family-centred care philosophy, which is widely accepted as the best approach to nursing care for children and their families, creates tension for nurses caring for children who are the victims of abuse as this care generally occurs away from the context of the family. This fragmented approach to caring for abused children can inadvertently undermine the mother-child relationship and further contribute to maternal alienation. This paper discusses the complexity of family violence for nurses negotiating the 'tight rope' between the prime concern for the safety of children and further contributing to maternal alienation, within a New Zealand context. The premise that restoration of the mother-child relationship is paramount for the long-term wellbeing of both the children and the mother provides the basis for discussing implications for nursing practice.

Occupational therapists' attitudes toward family -centered care

The purpose of this study was to examine pediatric occupational therapists attitudes towards family-centered care. Specific attributes identified by the literature (professional characteristics, educational experiences and organizational culture) were investigated to determine their influence on these attitudes. Study participants were 250 pediatric occupational therapists who were randomly selected from the American Occupational Therapy Association special interest sections. ^ Participants received a mail packet with three instruments to complete and mail back within 2 weeks. The instruments were (a) the Professional Attitude Scale, (b) the Professional Characteristics Questionnaire, and (c) the Family-Centered Program Rating Scale. There was a 50% return rate. Data analysis was conducted in SPSS using descriptive statistics, correlations and regression analysis. ^ The analysis showed that pediatric occupational therapists working in various practice settings demonstrate favorable attitudes toward family-centered care as measured by the Professional Attitude Scale. There was no correlation between professional characteristics and educational experiences to therapists' attitudes. A moderate correlation (r = .368, p < .05) was found between the occupational therapists attitudes and the organizational culture of their workplaces. A factor analysis was conducted on the organizational culture instrument (FamPRS) as this sample was exclusively pediatric occupational therapists and the original sample was interdisciplinary professionals. Two factors were extracted using a principal components extraction and varimax rotation, in addition to examination of the scree plot. These two factors accounted for 50% of the total variance of the scores on the instrument. Factor 1, called empowerment accounted for 45.6% of the variance, and Factor 2, responsiveness accounted for 4.3% of the variance of the entire instrument. Stepwise regression analysis demonstrated that these two factors accounted for 16% of the variance toward attitudes clinicians hold toward family-centered care. These factors support the tenets of family-centered care; empowering parents to be leaders in their child's health care and helping organizations become more responsive to family needs. ^ These study findings suggest that organizational culture has some influence on occupational therapists attitudes toward family-centered care (R 2 = .16). These findings suggest educators should consider families as valuable resources when considering program planning in family-centered care at preservice and workplace settings. ^

Patient-centred care in Maternity Services : a critical appraisal and synthesis of the literature

CDL thanks the School of Health Sciences (HESAV) at the University of Applied Sciences Western Switzerland for their support.

Measurement of parent satisfaction in french-speaking PICUs: a need for translation and cultural adaptation of the empathic questionnaire

Background and aims: Family-centred care is an expected standard in PICU and parent reported outcomes are rarely measured. The Dutch validated EMPATHIC questionnaire provides accurate measures of parental perceptions of family-centred care in PICU. A French version would provide an important resource for quality control and benchmarking with other PICUs. The study aimed to translate and to assess the French cultural adaptation of the EMPATHIC questionnaire. Methods: In September 2012, following approval from the developer, translation and cultural adaptation were performed using a structured method (Wild et al. 2005). This included forward-backward translation and reconciliation by an official translator, harmonization assessed by the research team, and cognitive debriefing with the target users' population. In this last step, a convenience sample of parents with PICU experience assessed the comprehensibility and cultural relevance of the 65-item French EMPATHIC questionnaire. The PICUs in Lausanne, Switzerland and Lille, France participated. Results: Seventeen parents, including 13 French native and 4 French as second language speakers, tested the cognitive equivalence and cultural relevance of the French EMPATHIC questionnaire. The mean agreement for comprehensibility of all 65 items reached 90.2%. Three items fell below the cut-off 80% agreement and were revised for inclusion in the final French version. Conclusions: The translation and the cultural adaptation permitted to highlight a few cultural differences that did not interfere with the main construct of the EMPATHIC questionnaire. Reliability and validity testing with a new sample of parents is needed to strengthen the psychometric properties of the French EMPATHIC questionnaire.

Examining the Influence of the Patient Declaration of Values on Hospital Policies and Practices

The purpose of this study was to explore how a leading Ontario hospital operationalizes their Patient Declaration of Values (PDoV) in policy and in practice. This was a single case study, which took place in a leading patient-centred Ontario hospital. The study included 18 individual interviews with employees and patient experience advisors, as well as, document analysis of strategic planning reports (n=10). Five themes emerged: (1) setting the stage, (2) inspiring change, (3) organizational structures, (4) organizational and environmental barriers, and (5) reflection and improvement. This study has highlighted the role of the PDoV within a leading Ontario hospital. It lends itself to providing a process with core strategies for creating change in an acute health care organization; to embed a culture of patient and family centred care.

Coconstruction des composantes d'un programme d'intervention en soutien à la résilience de familles dont un adolescent est atteint d'un traumatisme craniocérébral

La vie de famille avec un adolescent comporte son lot de défis. Les émotions de l’adolescent qui se présentent parfois comme des montagnes russes peuvent rendre les relations tendues et difficiles au sein de la cellule familiale, voire même au-delà de celle-ci. Par son caractère inattendu, l’avènement d’un traumatisme craniocérébral (TCC) chez l’adolescent vient fragiliser encore davantage la dynamique familiale. En outre, la myriade d’impacts engendrés par le TCC contraint la famille à modifier son projet de vie en s’investissant ensemble pour le reconstruire. La résilience devant une situation de traumatisme ne se manifeste pas de la même façon pour toutes les familles qui y sont confrontées. Certaines d’entre elles réussissent à se transformer positivement, tandis que d’autres n’y parviennent pas ou manifestent plus de difficultés. Il convient alors d’actualiser des approches de soins interdisciplinaires centrées sur la famille qui favoriseraient la reconnaissance des éléments pouvant soutenir son processus de résilience à travers cette épreuve et, enfin, aider à transformer son projet de vie. Avec comme perspective disciplinaire le modèle humaniste des soins infirmiers (Cara, 2012; Cara & Girard, 2013; Girard & Cara, 2011), cette étude qualitative et inductive (LoBiondo-Wood, Haber, Cameron, & Singh, 2009), soutenue par une approche collaborative de recherche (Desgagné, 1997), a permis la coconstruction des composantes d’un programme d’intervention en soutien à la résilience familiale, avec des familles dont un adolescent est atteint d’un TCC modéré ou sévère et des professionnels de la réadaptation. Le modèle de développement et de validation d’interventions complexes (Van Meijel, Gamel, Van Swieten-Duijfjes, & Grypdonck, 2004) a structuré la collecte des données en trois volets. Le premier volet consistait à identifier les composantes du programme d’intervention selon les familles (n=6) et les professionnels de la réadaptation (n=5). La priorisation et la validation des composantes du programme d’intervention, soit respectivement le deuxième et troisième volets, se sont réalisées auprès de ces mêmes familles (n=6 au volet 2 et n=4 au volet 3) et professionnels de la réadaptation (n=5 aux volets 2 et 3). Le processus d’analyse des données (Miles & Huberman, 2003) a repéré cinq thèmes intégrateurs, considérés comme les composantes du programme d’intervention en soutien à la résilience familiale à la suite du TCC modéré ou sévère d’un adolescent. Ce sont : 1) les caractéristiques de la famille et ses influences; 2) les stratégies familiales positives; 3) le soutien familial et social; 4) la prise en charge de l’aspect occupationnel et; 5) l’apport de la communauté et des professionnels de la santé. Les résultats issus de ce processus de coconstruction ont produit une matrice solide, suffisamment flexible pour pouvoir s’adapter aux différents contextes dans lesquels évoluent les familles et les professionnels de la réadaptation. Cette étude offre en outre des avenues intéressantes tant pour les praticiens que pour les gestionnaires et les chercheurs en sciences infirmières et dans d’autres disciplines quant à la mise en place de stratégies concrètes visant à soutenir le processus de résilience des familles dans des situations particulièrement difficiles de leur vie.

La familia del paciente en Unidad de Cuidado Intensivo (UCI)

Introducción: Ingresar a la UCI no es una experiencia exclusiva del paciente; implica e involucra directamente a la familia, en aspectos generadores de estrés, estrategias de afrontamiento, temores, actitudes y expectativas, la participación de la familia en el cuidado y el rol del psicólogo. Objetivo: Revisar de los antecedentes teóricos y empíricos sobre la experiencia de la familia en UCI. Metodología: Se revisaron 62 artículos indexados en bases de datos. Resultados: la UCI es algo desconocido tanto para el paciente como para la familia, por esto este entorno acentúa la aparición de síntomas ansiosos, depresivos y en algunos casos estrés post traumático. La muerte es uno de los principales temores que debe enfrentar la familia. Con el propósito de ajustarse a las demandas de la UCI, los familiares exhiben estrategias de afrontamiento enfocadas principalmente en la comunicación, el soporte espiritual y religioso y la toma de decisiones. El cuidado centrado en la familia permite una mejor comunicación, relación con el paciente y personal médico. El papel del psicólogo es poco explorado en el espacio de la UCI, pero este puede promover estrategias de prevención y de rehabilitación en el paciente y su grupo familiar. Discusión: es importante tener en cuenta que la muerte en UCI es una posibilidad, algunos síntomas como ansiedad, depresión pueden aparecer y mantenerse en el tiempo, centrar el cuidado en la familia permite tomar las decisiones basados en el diagnóstico y pronóstico y promueve expectativas realistas. Conclusiones: temores, expectativas, actitudes, estrategias de afrontamiento, factores generadores de estrés permiten explicar y comprender la experiencia de la familia del paciente en UCI.

Integrating a sense of coherence into the neonatal environment

Background: Family centred care (FCC) is currently a valued philosophy within neonatal care; an approach that places the parents at the heart of all decision-making and engagement in the care of their infant. However, to date, there is a lack of clarity regarding the definition of FCC and limited evidence of FCCs effectiveness in relation to parental, infant or staff outcomes. Discussion: In this paper we present a new perspective to neonatal care based on Aaron Antonovksy's Sense of Coherence (SOC) theory of well-being and positive health. Whilst the SOC was originally conceptualised as a psychological-based construct, the SOCs three underpinning concepts of comprehensibility, manageability and meaningfulness provide a theoretical lens through which to consider and reflect upon meaningful care provision in this particular care environment. By drawing on available FCC research, we consider how the SOC concepts considered from both a parental and professional perspective need to be addressed. The debate offered in this paper is not presented to reduce the importance or significance of FCC within neonatal care, but, rather, how consideration of the SOC offers the basis through which meaningful and effective FCC may be delivered. Practice based implications contextualised within the SOC constructs are also detailed. Summary: Consideration of the SOC constructs from both a parental and professional perspective need to be addressed in FCC provision. Service delivery and care practices need to be comprehensible, meaningful and manageable in order to achieve and promote positive well-being and health for all concerned.