Nurses' autonomy in end-of-life situations in intensive care units.

BACKGROUND: The intensive care unit environment focuses on interventions and support therapies that prolong life. The exercise by nurses of their autonomy impacts on perception of the role they assume in the multidisciplinary team and on their function in the intensive care unit context. There is much international research relating to nurses' involvement in end-of-life situations; however, there is a paucity of research in this area in Brazil. In the Brazilian medical scenario, life support limitation generated a certain reluctance of a legal nature, which has now become unjustifiable with the publication of a resolution by the Federal Medical Council. In Brazil, the lack of medical commitments to end-of-life care is evident. OBJECTIVE: To understand the process by which nurses exercise autonomy in making end-of-life decisions in intensive care units. RESEARCH DESIGN: Symbolic Interactionism and Corbin and Strauss theory methodology were used for this study. PARTICIPANTS AND RESEARCH CONTEXT: Data were collected through single audio-recorded qualitative interviews with 14 critical care nurses. The comparative analysis of the data has permitted the understanding of the meaning of nurse's experience in exercising autonomy relating to end-of-life decision-making. ETHICAL CONSIDERATIONS: Institutional ethics approval was obtained for data collection. Participants gave informed consent. All data were anonymized. FINDINGS: The results revealed that nurses experience the need to exercise autonomy in intensive care units on a daily basis. Their experience expressed by the process of increase opportunities to exercise autonomy is conditioned by the pressure of the intensive care unit environment, in which nurses can grow, feel empowered, and exercise their autonomy or else can continuously depend on the decisions made by other professionals. CONCLUSION: Nurses exercise their autonomy through care. They work to create new spaces at the same time that they acquire new knowledge and make decisions. Because of the complexity of the end-of-life situation, nurses must adopt a proactive attitude that inserts them into the decision-making process.

[Factors influencing Intensive Care Units nurses in end-of-life decisions]. / Fatores que influenciam os enfermeiros de Unidades de Terapia Intensiva nas decisões de final de vida.

OBJECTIVE: To identify the factors that influence the Intensive Care Unit nurse in the decision-making process in end-of-life situations. METHOD: Ethnographic case study, which used the theoretical framework of medical anthropology. Data were collected through semi-structured interviews with 10 nurses. RESULTS: The inductive thematic analysis enabled us to identify four themes:The cultural context of the Intensive Care Unit: decision-making in situations of end-of-life; Beliefs and subjectivity of care in end-of-life situations; Professional experience and context characteristics of end-of-life care situations; and Humanization practices in end-of-life situations: the patient and family centered care. CONCLUSION: Professional maturity, the ability to transmit information and the ability to negotiate are directly related to the inclusion of nurses in the decision-making process.

[Nursing concepts and theories]. / Conceitos e Teorias na Enfermagem.

The theory framework of nursing science is built in a dynamic process that arises from practice and is reproduced through research, mainly by analysis and development of concepts and theories. This study presents a theory reflection on nursing knowledge construction and points out subsidies for future studies in the area. The interrelation among theory, research, and clinical practice is required for continuous development of nursing as a profession and science. Ideally, the practice must be based on theory that is validated by research. Therefore, theory, research, and practice affect each other reciprocally and continuously.

[The use of the Family Management Style Framework to evaluate the family management of liver transplantation in adolescence]. / A utilização do Family Management Style Framework para avaliação do manejo familiar do transplante hepático na adolescência*

OBJECTIVE: To understand the family management experience of liver transplantation during adolescence based on the Family Management Style Framework(FMSF). METHOD: This is a case study that used the FMSF as theoretical framework and the hybrid model of thematic analysis as methodological reference. The case presented is from an adolescent's family that lives in Salvador, Bahia. The data were collected through interviews with the mother and the patient charts analysis. RESULTS: The results shows that the family defines the transplantation as threatening and there are divergence between mother and daughter related to the teen's capabilities perception. Facing those discrepancies, the family assumes a protective posture by believing that the teen cannot take care of herself alone. The perceived consequences reflect how much the uncertainty permeates the family environment. CONCLUSION: It is concluded that the use of a model to evaluate the management can help professionals to direct and plan specific interventions.

The practice of nurses caring for families of pediatric inpatients in light of Jean Watson.

Objective To know the facilities and the difficulties of nurses in caring practice of hospitalized children's families in the light of Jean Watson's Theory of Human Caring. Method It was used the descriptive qualitative approach. The data collection was conducted in three stages: presentation of theoretical content; engagement with families in the light of Watson's theory; and semi-structured interview with 12 pediatric nurses. The interviews were analysed using inductive thematic analysis, being possible to form three themes: Recognizing a framework for care; Considering the institutional context; and Challenges in family's relationship. Results The theory favored reflections about self, about the institutions and about nurses' relationship with the family of the child, normalized by a consciousness toward caring attitudes. Conclusion In this process, it is imperative that nurses recognize the philosophical-theoretical foundations of care to attend the child's family in hospital.

The 15-minute family interview: a family health strategy tool.

The 15-minute family interview is a condensed form of the Calgary Family Assessment and Intervention Models (CFAM and CFIM) that aims to contribute to the establishment of a therapeutic relationship between nurses and family and to implement interventions to promote health and suffering relief, even during brief interactions. This study investigated the experience of nurses from the Family Health Strategy (FHS) who used the 15-minute interview on postpartum home. The qualitative research was conducted in three stages: participants' training program, utilization of the 15-minute family interview by participants, and interviews with nurses. The data were collected through semistructured interviews with eight nurses. The thematic analysis revealed two main themes: dealing with the challenge of a new practice and evaluating the assignment. This work shows that this tool can be used to deepen relationships between nurses and families in the Family Health Strategy.

[Dignified death for children: perceptions of nurses from an oncology unit]. / Morte digna da criança: percepção de enfermeiros de uma unidade de oncologia.

The objective of this study was to identify the meaning of dignified death and the interventions employed by nurses in pediatric oncology to promote dignified death for children. We used Symbolic Interaction Theory as the theoretical framework and narrative research methods. The data were collected from eight nurses in the pediatric oncology unit of a public hospital in Sao Paulo through semi-structured interviews. The data analysis revealed five categories: feeling no autonomy in decision-making, caring for the family, offering physical comfort, valuing humanized care and learning to deal with death and dying. This study helps to extend the understanding of this process of care and postulates a theoretical framework that integrates the knowledge and actions that constitute care that transcends clinical and biological needs.

Family management style framework and its use with families who have a child undergoing palliative care at home.

Palliative care settings in many countries acknowledge families as their prime focus of care, but in Brazil, to date, researchers have devoted scant attention to that practice setting. In this article, we report the findings of a study that explored how families define and manage their lives when they have a child or adolescent undergoing palliative care at home. Data included individual semistructured interviews with 14 family members of 11 different families. Interviews were transcribed and the coding procedure featured qualitative content analysis methods. The deductive coding was based on the major components of the Family Management Style Framework and the eight dimensions comprising these components. The analysis provides insight into families' daily practices and problems inherent in managing their everyday lives that are encountered when they have a child in palliative care. The article features discussion of implications for the palliative care related development of family nursing practice.

Dignified death: concept development involving nurses and doctors in pediatric intensive care units.

The aim of this study was to develop the concept of the dignified death of children in Brazilian pediatric intensive care units (PICUs). The Hybrid Model for Concept Development was used to develop a conceptual structure of dignified death in PICUs in an attempt to define the concept. The fieldwork study was carried out by means of in-depth interviews with nine nurses and seven physicians working in PICUs. Not unexpectedly, the concept of dignified death was found to be a complex phenomenon involving aspects related to decisions made by the multidisciplinary team as well as those related to care of the child and the family. Knowledge of the concept's dimensions can promote reflection on the part of healthcare professionals regarding the values and beliefs underlying their conduct in end-of-life situations. Our hope is that this study may contribute to theoretic and methodological development in the area of end-of-life care.

[Approaching the family in the Family Health Strategy: an integrative literature review]. / A abordagem à família na Estratégia Saúde da Família: uma revisão integrativa da literatura.

Today there is consensus regarding the idea that there is mutual influence between the health-disease conditions of family members and family union. Establishing health practice centered on family care is a way to revert the hegemonic disease-centered model, which divides individuals and separate them from their context and socio-cultural values. The Family Health Strategy (FHS) was implemented to reorganize the Brazilian public health system (Sistema Único de Saúde), an each of its teams becomes acquainted with the true situation of the families for which they are responsible. In this sense, an integrative literature was performed to identify the concept of family and the factors associated with the family approach in the FHS. The review identified aspects that contribute to maintaining the fragmented approach in the FHS, as well as aspects that could help overcome towards a model using a family-centered approached.

[Religious beliefs, illness and death: family's perspectives in illness experience]. / Crenças religiosas, doença e morte: perspectiva da família na experiência de doença.

The objectives of this study were to identify predominant themes in religion, illness and death in the life histories of families and examine the relationship between religion creeds, illness and death in the discourse of families that have an ill person. The theoretical framework used in this study was Symbolic Interactionism and the method was Oral History. Participants were seventeen families with nine different religions, who had experienced the death of a relative. Data analysis showed that following a religion is a relevant part of the lives of many families and cannot be neglected in the illness context. Results point to the importance of understanding the meaning that religion has to the families in the health-disease process, so nurses can work on the promotion of health.

[The experience of suffering: stories told by hospitalized children]. / A experiência de sofrimento: histórias narradas pela criança hospitalizada.

The objective of this study was to learn about the experience of suffering in hospitalized school-aged children. The methodological strategy used was narrative inquiry, and the Model of Suffering as the theoretical framework. Participants were 14 children. Data collection was performed using semi-structured interviews, guided by the following question: Tell me your story about getting sick and coming to the hospital. Results show that hospital events comprise the child's experience of suffering, represented by five categories: knowing the suffering caused by the disease; enduring to survive the experience of being ill, relaxing from enduring to free their emotions, living the suffering, and floating between enduring and suffering. The suffering or enduring of the child is determined by the context of the experience and by the support or interactions that surrounds them. In conclusion, nurses have the duty to offer children opportunities to express themselves and make the suffering bearable.

The relationship between religion, illness and death in life histories of family members of children with life-threatening diseases.

This qualitative study aimed to get to know the relationship between the experiences of families of children with a life-threatening disease and their religion, illness and life histories. The methodological framework was based on Oral History. The data were collected through interviews and the participants were nine families from six different religions who had lived the experience of having a child with a life-threatening disease. The interviews, held with one or two family members, were transcribed, textualized and, through their analysis, the Vital Tone was elaborated, representing the moral synthesis of each narrative. Three dimensions of spirituality were related to illness and death in their life histories: a Higher Being with a healing power; Development and Maintenance of a Connection with God and Faith Encouraging Optimism. The narratives demonstrated the family's search to attribute meanings to their experiences, based on their religious beliefs.

Not being able to live like before: the family dynamics during the experience of pediatric liver transplantation.

This study aims to understand families' dynamics during the experience of pediatric liver transplantation, and to identify families' demands and resources. Symbolic interactionism was used as the theoretical framework and grounded theory as the methodological reference. Data were collected through semi-structured interviews with eight families at a public hospital in Sao Paulo, SP, Brazil. Two phenomena were identified: having life controlled by the transplantation represents the vulnerability of families experiencing uncertainty and fear during their children's disease experience; and struggling to reacquire autonomy refers to families' reaction when exposed to the first phenomenon, which consists of continuous adaptation to overcome suffering caused by the situation. The relationship of these two phenomena allowed for the identification of the central category: not being able to live like before. Based on this analysis, a theoretical model could be proposed to explain the experience.

[Dignified death for children: concept analysis]. / Morte digna da criança: análise de conceito.

The purpose of this study was to describe the background, attributes and consequences of the concept of dignified death for children. The concept analysis strategy was used to evaluate the 40 articles found in journals in the medical and nursing areas, which studied or focused on the dignified death of children. The attributes of the dignified death concept include: quality of life, child- and family-centered care, specific knowledge about palliative care, shared decisions, relieving the child's suffering, clear communication, helpful relations and a welcoming environment. Few articles bring the definition of a dignified death for children, and, when they do, such definition is vague and often ambiguous among the many authors. This aspect indicates that the concept is not defined consistently, demanding studies about its manifestation in the clinical practice, contributing with the care at the end of life in Pediatrics.

[The use of the Calgary Model for assessment of families of the aged in clinical practice]. / Aplicação do Modelo Calgary para avaliação de famílias de isodos na prática clínica.

This qualitative study has as objective to present the experience to assessment of the families of dependent aged under the systemic approach. The Calgary Model was used as theoretical framework and as methodological strategy the case study. The data had been collected with five families of dependent older person, from September of December of 2005, by means of the instrument elaborated previously. The application of this model allowed doing the familiar analysis raising the main aspects of its structure, development and functioning. We believe that the nurse must search endorsement in the scientific literature and adopts pertinent instruments to contribute for the development of its abilities to do the familiar approach.

Managing cancer and its intercurrences: the family deciding to seek emergency care for the child.

This study aimed to understand how the family of a child with cancer manages the illness and its intercurrences at home, and how it makes the decision of taking the child to an emergency care service. Oral History was used as the methodological strategy and data analysis was based on the "Family Management Style Framework". Participants were six mothers between 28 and 47 years old, who were experiencing their child's cancer treatment. The possible need for emergency care is incorporated into the family routine as a resource to manage the illness whenever it goes beyond the mother's capacity to keep control over the symptoms, which is permeated by suffering, derived from the uncertainties this creates. Helping the mother to develop skills to get stronger and reduce the suffering resulting from the situations that generate uncertainties and insecurities in her daily life with the child with cancer is a challenge.

Validation of Family Management Measure for the Brazilian culture.

ETJECTIVE: To validate the Family Management Measure (FaMM) for Brazilian culture. METHOD: Quantitative research excerpt, following the recommendations for validation studies. The data presented refer to the last stage of the process. RESULTS: The internal consistency of the items was analyzed through Cronbach's alpha of the six domains: Child's Daily Life (0.78); Condition Management Effort (0.51); Condition Management Ability (0.55); Family Life Difficulty (0.86); View of Condition Impact (0.56); and Parental Mutuality (0.80). Exploratory factorial analysis of the instrument was carried out, obtaining an acceptable adjustment, according to validation standards. CONCLUSION: The FaMM presents evidence of validation and can be used in the Brazilian culture under the name of Instrumento de Medida de Manejo Familiar, which was adjusted in eight domains, providing varied aspects of family management and a good evaluation of the fundamental aspects of family life in the context of childhood chronic conditions.

[Sharing the death process with the family: a nurse's experience in the pediatric ICU]. / Compartilhando o processo de morte com a família: a experiência da enfermeira na UTI pediátrica.

Death is present in the daily reality of nurses who work with children in ICU. This research aimed to comprehend nurses' experience while taking care of children and his/her family experiencing the death process. Symbolic Interactionism was adopted as a theoretical reference framework, while Interpretative Interactionism was used as a methodological reference framework to analyze the biographical narratives of seven nurses who took part in the research. The events that determined the nurses' history in this context were: FACING THE DEATH OF THE CHILD, PROJECTING YOURSELF IN THE MOTHER'S ROLE and PROMOTING FAREWELL. The analyzed data made it possible to understand the nurses' experience in care for children and their families during the death process.

[Validation of a theoretical model applied on the care of families with a child with cardiopathy]. / Validação um modelo teórico usado no cuidado da famílla que tem um filho com cardiopatia.

This article is based on a survey aimed at validating the theoretical model "Trying to preserve the integrity of the family unit" by applying it to the situation of families living through the experience of having a child undergoing heart surgery. Data was collected through interviews with six family members who had gone through that experience. The questions were laid out according to the model, focusing on the family experience during the time of heart surgery. The data was analyzed according to the Grounded Theory. Results showed that it is possible to validate the theoretical model for the experience of families who had a child undergoing heart surgery through the comparative analysis of the results of both studies. Because of the specific nature of the experience, two new themes emerged: living a lonely experience and overcoming a phase, thus widening the original theoretical model.