Psychometric evaluation of the family-centered care scale for pediatric acute care nursing.

BACKGROUND: Caring for families is fundamental to pediatric nursing. However, existing measures do not capture parents' experiences with family-centered nursing care. OBJECTIVE: The aim of this study was to describe the development and initial psychometric testing of the Family-Centered Care Scale, a seven-item instrument designed to measure a parent's experience of nursing care that embodies core principles of family-centered care. METHODS: In Phase 1, 18 items describing what nurses do to engage parents of hospitalized children were derived from the literature describing mutuality. After establishing face validity, pretesting, and revision for clarity, the scale was administered to a convenience sample of 91 parents of hospitalized patients. In Phase 2, two items on parents' perceptions of being well-cared-for were added. The 20-item scale was administered to 564 parents of children recruited from all inpatient units in a children's hospital. In Phase 3, the scale was shortened to seven items and retested for validity among 454 additional parents. RESULTS: Internal consistency reliability was high across all versions and testing phases. Confirmatory factor analysis with data from a subsequent sample supported the final factor structure, regardless of patient type and race. There was a linear association between the scale consistency scores and overall quality of care ratings, supporting predictive validity of the scale. DISCUSSION: The Family-Centered Care Scale showed initial evidence of reliability and validity among parents with hospitalized children.

Caregivers' understanding of dementia predicts patients' comfort at death: a prospective observational study.

BACKGROUND: Patients with dementia frequently do not receive adequate palliative care which may relate to poor understanding of the natural course of dementia. We hypothesized that understanding that dementia is a progressive and terminal disease is fundamental to a focus on comfort in dementia, and examined how family and professional caregivers' understanding of the nature of the disease was associated with patients' comfort during the dying process. METHODS: We enrolled 372 nursing home patients from 28 facilities in The Netherlands in a prospective observational study (2007 to 2010). We studied both the families and the physicians (73) of 161 patients. Understanding referred to families' comprehension of complications, prognosis, having been counseled on these, and perception of dementia as "a disease you can die from" (5-point agreement scale) at baseline. Physicians reported on this perception, prognosis and having counseled on this. Staff-assessed comfort with the End-of-Life in Dementia - Comfort Assessment in Dying (EOLD-CAD) scale. Associations between understanding and comfort were assessed with generalized estimating equations, structural equation modeling, and mediator analyses. RESULTS: A family's perception of dementia as "a disease you can die from" predicted higher patient comfort during the dying process (adjusted coefficient -0.8, 95% confidence interval (CI): -1.5; -0.06 point increment disagreement). Family and physician combined perceptions (-0.9, CI: -1.5; -0.2; 9-point scale) were also predictive, including in less advanced dementia. Forty-three percent of the families perceived dementia as a disease you can die from (agreed completely, partly); 94% of physicians did. The association between combined perception and higher comfort was mediated by the families' reporting of a good relationship with the patient and physicians' perception that good care was provided in the last week. CONCLUSIONS: Awareness of the terminal nature of dementia may improve patient comfort at the end of life. Educating families on the nature of dementia may be an important part of advance care planning.

"I can just be me": advanced practice nursing with families experiencing grief.

Nurses have a key role to play in therapeutic interventions for bereaved and grieving families. In this article, hermeneutic inquiry is used to uncover what families found helpful or useful with respect to therapeutic conversations with advanced practice registered nurses. The findings show that nursing expertise is important in family nursing practice. Expertise in the relationship allowed the family to find healing and hope by addressing core constraining beliefs. Clinical judgment, or sense, was significant in guiding the therapeutic conversation. Lastly, how problems are framed and how families are positioned have implications for outcomes and therapeutic change.

Talking via the child: discursively created interaction between parents and health care professionals in a pediatric oncology ward.

The aim of this study was to describe discursively constructed interactions between parents and health care professionals (HCPs) in a pediatric oncology ward. Field notes from 70 focused participant observations and 16 informal interviews with 25 HCPs interacting with 25 parents of children with cancer were analyzed using discursive psychology. Six dominant interpretative repertoires (flexible parts of discourses used in everyday interaction) were found. Repertoires used by the HCPs were child, parent, or family oriented, mirroring the primary focus of the interaction. Parents used a spokesperson repertoire to use their own expertise to talk on behalf of the child; an observer repertoire, in which they kept in the background and interfered only when needed; or a family member repertoire to position themselves on a level equal to the ill child. The results are discussed in relation to philosophies influencing pediatric nursing, such as family-centered nursing and child-centered nursing.

Neonatal family care for 24 hours per day: effects on maternal confidence and breast-feeding.

In family care (FC) program for neonatal intensive care units (NICUs), parents are encouraged to reside together with their infant for 24 hours a day to actively be involved in the care. The aim of this study was to assess the impact of FC on maternal confidence and breast-feeding. Maternal confidence and rate of breast-feeding were assessed in 31 mothers offered FC that included special family rooms in the NICU, and in 30 mothers from a comparable NICU providing traditional care without such facilities. One week prior to hospital discharge, mothers in the FC group felt better informed regarding nursing issues and had more confidence in interpretation of the infants regarding feeding issues and in caregiving without staff attendance (P < .05). They also reported a higher level of empowerment (P < .05). Three months after discharge, the mothers in the FC group had a higher self-reported skill level for interpretation of the infant's signals and knowledge about breast-feeding (P < .05). Despite similar rate of breast-feeding at discharge, more infants in the FC group were breastfed 3 months after discharge (P < .05). An FC program in the NICU promoted better maternal confidence during the hospital stay and 3 months after discharge compared with traditional care.

Nurses' perceptions of patient participation in hemodialysis treatment.

The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three discursive practices are found: (1) the nurses' power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin. The first and the predominant discursive practice can be explained with an ideology of paternalism, in which the nurses used biomedical explanations and the ethical principle of benefice to justify their actions. The second can be explained with an ideology of participation, in which the nurses used ethical narratives as a way to let the patients participate in the treatment. The third seemed to involve autonomous decision-making and the ethical principle of autonomy for the next of kin in the difficult end-of-life decisions.

Ser mãe de criança com câncer: uma investigação fenomenológica / Being the mother of a child with cancer: a phenomenological investigation / Ser madre de niños con cáncer: una investigación fenomenológica

Estudo descritivo exploratório do tipo fenomenológico, que objetivou compreender o significado de ter um filho com câncer na percepção de mães que acompanham crianças hospitalizadas. A coleta de dados ocorreu de janeiro a março de 2008, por meio de entrevistas individuais não estruturadas, norteadas pela questão: Para você, o que significa ter um filho com câncer? Participaram da pesquisa oito mães que acompanhavam seus filhos internados em hospital de Goiânia-GO. O adoecer da criança por câncer se desvelou nas categorias O impacto do diagnóstico e o medo do desconhecido; e Ser mãe de um filho com câncer: mudanças que permeiam seu existir. Adentrar a vida da família e olhar com os olhos de quem vive a experiência permite aos profissionais de saúde compreender o verdadeiro impacto da doença na dinâmica familiar e os sensibiliza a valorizar as vivências humanas.

This exploratory, descriptive, phenomenological study sought to understand what it means to have a child with cancer in the perception of mothers accompanying hospitalized children. Data was collected from January to March 2008 through unstructured, individual interviews guided by the following question: What does it mean to you to have a child with cancer? Study participants were eight mothers who accompanied their children hospitalized in Goiânia-GO. The child’s being ill with cancer was revealed in terms of the categories The impact of the diagnosis and fear of the unknown; and Being a mother of a child with cancer: changes that permeate their existence. Entering into family life and looking through the eyes of those who live the experience enables health professionals to understand the true impact of disease on the family dynamics, and sensitizes them to value lived experiences.

Estudio descriptivo, exploratorio del tipo fenomenológico, que tuvo como objetivo comprender el significado de tener un hijo con cáncer, según la percepción de madres que acompañan niños hospitalizados. Los datos fueron recolectados de enero hasta marzo de 2008, por medio de entrevistas individuales no estructuradas, guiadas por la siguiente pregunta: Para usted, lo que significa tener un hijo con cáncer? Ocho madres participaron en esta investigación. Para las madres, el enfermar del niño por cáncer se desveló en las categorías El impacto del diagnóstico y el miedo del desconocido; y Ser-madre de un niño con cáncer: câmbios que impregnan su existencia. Entrar en la vida familiar y mirar a través de los ojos de aquellos que viven la experiencia permite a los profesionales de la salud entender el verdadero impacto de la enfermedad en la dinámica familiar y los sensibiliza a valorar la experiencia humana.

A comparison of parent satisfaction in an open-bay and single-family room neonatal intensive care unit.

OBJECTIVE: The purpose of this research was to test the hypothesis that parental satisfaction with neonatal intensive care is greater in a single-family room facility as compared with a conventional open-bay neonatal intensive care unit (NICU). METHODS: This investigation was a prospective cohort study comparing satisfaction survey results for parents who responded to a commercially available parent NICU satisfaction survey following the provision of NICU care in open-bay and single-family room facilities. A subset of 16 items indicative of family-centered care was also computed and compared for these two NICU facilities. RESULTS: Parents whose babies received care in the single-family room facility expressed significantly improved survey responses in regard to the NICU environment, overall assessment of care, and total survey score than did parents of neonates in the open-bay facility. With the exception of the section on nursing in which scores in both facilities were high, nonsignificant improvement in median scores for the sections on delivery, physicians, discharge planning, and personal issues were noted. The total median item score for family-centered care was significantly greater in the single-family room than the open-bay facility. CONCLUSIONS: Parental satisfaction with care in the single-family room NICU was improved in comparison with the traditional open-bay NICU. The single-family room environment appears more conducive to the provision of family-centered care. Improved parental satisfaction with care and the potential for enhanced family-centered care need to be considered in decisions made regarding the configuration of NICU facilities in the future.

Empowerment das famílias de crianças dependentes de tecnologia: desafios conceituais e a educação crítico-reflexiva freireana / Empoderamiento de las famílias de niños dependientes de tecnología: desafios conceptuales y la educación crítico-reflexiva freireana / Empowerment of families with technology-dependent children: conceptual challenges and freirean critical-reflexive education

As famílias que cuidam de crianças com dependência tecnológica são submetidas a alguns impactos. Estes se revelam através da desorganização familiar em várias dimensões. A complexidade do processo de cuidar destas famílias demanda, então, uma nova abordagem para promoção da saúde familiar por parte dos profissionais de saúde, em particular da enfermeira. O papel do trabalho de grupo na perspectiva educacional como um espaço de troca de experiências entre semelhantes tem sido reconhecido como importante intervenção no processo de facilitação à adaptação em situações de doença crônica. É também aliado no desenvolvimento de políticas que defendem o envolvimento dos usuários e famílias em seu próprio cuidado. Este artigo objetivou discutir a articulação do método freireano no trabalho de grupo com o processo de empowerment (empoderamento) das famílias dessas crianças.

Families caring for technology-dependent children suffer impacts revealed in family disorganization in several dimensions. The complexity of the care given by these families requires a new family health promotion approach by health personnel, especially nurses. The role of group work, as a means of exchanging experiences among peers for educational purposes, has been recognized as an important intervention in facilitating adaptation in situations involving chronic disease. It is also an ally in the development of policies to foster user and family involvement in their own care. This paper discusses interrelations between the Paulo Freire method in group work and the process of family empowerment.

La familias que cuidan de niños con dependencia tecnológica son sometidas a algunos impactos. Estos se revelan mediante la desorganización familiar en varias dimensiones. La complejidad del proceso de cuidar de estas familias demanda, entonces, un nuevo abordaje para la promoción de la salud familiar por parte de los profesionales de salud, en particular de la enfermera. El rol del trabajo de grupo en la perspectiva educacional como un espacio de cambio de experiencias entre semejantes ha sido reconocido como importante intervención en el proceso de facilitación a la adaptación en situaciones de enfermedad crónica. Es también aliado en el desarrollo de políticas que defienden el envolvimiento de los usuarios y familias en su propio cuidado. En este artículo, el objetivo es debatir la articulación del método freireano en el trabajo de grupo con el proceso de empoderamiento de las familias de eses niños.

Home care nurses' provision of support to families of the elderly at the end of life.

In this article we describe our study of assistance for family decisions and caregiving by Japanese home care nurses to families of elderly relatives at the end of life. The participants were 31 nurses who had been evaluated as providing good end-of-life care. We carried out semistructured interviews concerning the practice of family support in two cases (cancer and noncancer). We conducted a qualitative analysis using the constant comparative approach and derived several categories inductively. Home care nurses are responsible for (a) estimating the possibility of dying at home, (b) visualizing what is coming and what can be done, (c) proposing where and how the family can say goodbye, (d) building family consensus, (e) coordinating resources, and (f) offering psychological support for end-of-life care. End-of-life family care by home care nurses is a process in which multiple components of care are provided with changing content as death approaches.

Avaliação familiar: do modelo calgary de avaliação dafamília aos focos da prática de enfermagem / Family assessment: from calgary family assessment model to thefocus of nursing practice / Evaluación de la familia: del modelo de calgary de evaluación de lafamilia a los focos de la práctica de enfermería

A enfermagem de família constitui-se como uma área específica no contexto geral da enfermagem que dá ênfase às interações dos elementos da família, numa perspectiva sistémica dos cuidados. A intervenção de enfermagem requer a utilização de modelos que permitam a concepção de cuidados orientados para a coleta de dados e parao planejamento das intervenções. Nesta perspectiva, o Modelo de Calgary de Avaliação da Família (MCAF)permite compreender a família na sua multidimensionalidade. O estudo teve como objectivo identificar as áreasde atenção de enfermagem no âmbito da saúde familiar. Utilizando a metodologia de investigação-ação, aamostra foi constituída pelos enfermeiros de um centro de saúde da Zona Norte de Portugal, utilizando-se atécnica de debates em grupos. Dos resultados emergiu a reconstrução do Modelo de Cuidados através da articulação dos focos da prática descritos na Classificação Internacional para a Prática de Enfermagem com os conceitos do MCAF. Neste modelo, em conjunto foram especificadas categorias avaliativas que permitiram definir as áreas de atenção no contexto da Enfermagem de Família. Os dados nos permitem inferir que os aspectos que influenciam os estados de saúde que determinam os cuidados de enfermagem referem o conhecimento de enfermagem.

Family nursing is a specific area in the general context of nursing, emphasizing the interactions of the elements ofthe family, in a systemic perspective of care. Nursing intervention requires the use of models enabling the designof care geared to the collection of data and the planning of interventions. Therefore the Calgary FamilyAssessment Model (CFAM) is useful to understand the family in its multidimensionality. The study aimed toidentify areas of nursing care in the family health context. Using the methodology of action research, the samplewas formed by nurses of a Health Centre in Northern Portugal, using the technique of group discussion. From theresults emerged a reconstruction of the Care Model through the combination of the focus of the practic edescribed in the International Classification for Nursing Practice with the concepts of CFAM. In this model co-builte valuative categories have been specified to define the areas of attention in the context of Family Nursing. Webelieve to be a first step in the definition of the knowledge in this specific area, as the aspects that influence health states, which determine the health nursing care, concern the knowledge of nursing.

La enfermería de familia se constituye como un área específica en el contexto general de la enfermería que poneénfasis a las interacciones de los elementos de la familia, en una perspectiva sistémica de los cuidados. La intervención de enfermería requiere la utilización de modelos que permitan la concepción de cuidados orientados para la recogida de datos y para la planificación de las intervenciones. En esta perspectiva, el Modelo de Calgary de Evaluación de la Familia (MCEF) permite comprender la familia en su multidimensionalidades. El estudio tuvo como objetivo identificar las áreas de atención de enfermería en el ámbito de la salud familiar. Utilizando lametodología de investigación acción, la muestra fue constituida por los enfermeros de un centro de salud de laZona Norte de Portugal, utilizándose la técnica de debates en grupo. De los resultados emergió la reconstruccióndel Modelo de Cuidados a través de la articulación de los focos de la práctica descriptos en la Clasificación Internacional para la Práctica de Enfermería con los conceptos de MCEF. En este modelo en conjunto fuerones pecificadas categorías evaluativas que permitirán definir las áreas de atención en el contexto de la Enfermeríade Familia. Los datos nos permiten inferir que los aspectos que influencian los estados de salud que determinanlos cuidados de enfermería refieren el conocimiento de enfermería.

Correlating family nurse practitioners' perspectives of adult ADD/ADHD with employed pharmacotherapy: a pilot study.

PURPOSE: This study explores how family nurse practitioners (FNPs) in the state of Washington view adulthood attention deficit disorder/attention deficit hyperactivity disorder (ADD/ADHD) and how these views affect the pharmacotherapy FNPs employ. DATA SOURCES: A confidential survey containing 30 questions was mailed to self-selected FNPs who practice in the state of Washington (N= 126). Descriptive and Kendall's rank correlations coefficient statistical methods were used for data analysis. CONCLUSIONS: The majority of respondents do not hold negative views toward adults with ADD/ADHD and are aware that their personal views may affect how they treat the disorder. Most of the respondents agreed that given the likelihood of co-morbidity of adult ADD/ADHD, it can be a challenge to diagnose the disorder. The predominant prescribed medications for adult ADD/ADHD are consistent with current pediatric guidelines, with the exception of buproprion, which was identified by 40% of the respondents as either their primary or secondary drug of choice for treating adult ADD/ADHD. IMPLICATIONS FOR PRACTICE: Research effort needs to focus on the efficacy of buproprion for treating ADD/ADHD in adults. Moreover, exploration of the effectiveness of current pediatric guidelines to treat ADD/ADHD in adults must be assessed.

The experiences of mental health professionals using structured family-centered interventions to support children of cancer patients.

BACKGROUND: Increasing interest has been focused on providing psychosocial support and preventive care for the children of adult cancer patients. OBJECTIVE: The primary purpose of this study was to describe clinicians' experiences using structured family-centered interventions to address the needs of children whose parent has cancer. METHODS: Using a narrative method, qualitative data were collected from interviews with 7 experienced clinicians who had used structured family-centered interventions in families with a parent with cancer. RESULTS: Narrative analysis revealed 4 primary thematic categories: interteam collaboration, focus on the children, death, and perceived impact of interventions. CONCLUSIONS: It is important to identify the needs of children and provide appropriate support to the entire family of adult cancer patients. To effectively support a family with divergent needs requires good interteam collaboration and networking with local services that are available for children. It is important to acknowledge and address the needs of children of cancer patients. In so doing, parents benefit and are empowered in their parenting role. Families can be helped to address their concerns, particularly death issues, through effective interteam collaboration. CLINICAL IMPLICATIONS: Evidence gained from the experiences of health professionals in clinical practice is important and forms a basis for focusing next on producing research-based evidence regarding the effects of interventions. The benefits of the interventions we describe must be clearly demonstrated by comparison with usual treatment practices before applying them widely in clinical practice.