Promoting family-centered visitation makes a difference

Promoting parental and sibling visitation of the critically ill child can positively influence the resolution of a crisis when a child is admitted to the pediatric intensive care unit. There are many benefits as well as barriers to incorporating family-centered visitation into the plan of care. Understanding the needs, stressors, and coping styles of the entire family will help the nurse provide a positive experience when parents or siblings visit the critically ill child.     

Case study of an educational intervention to favor siblings’ adaptation during the hospitalization of a preterm infant in the neonatal intensive care unit

Hospitalization of a preterm infant in the Neonatal Intensive Care Unit (NICU) places additional strain on the family and influences the siblings' adaptation. Although it is essential to support the siblings’ adaptation and provide family-centered care in the NICU, sibling involvement is rarely integrated into nursing care. An evidence-based intervention was therefore developed in a level-III NICU and its impact on sibling adaptation was evaluated using a Case study in which three families with a hospitalized infant and siblings between 3 and 12 years old participated. The parents were asked to consult a website and attend a 30-min educational session on issues related to sibling adaptation, and the siblings received a structured introduction to the NICU and visited the preterm infant. All three families were satisfied with the activities, although two parents felt neutral about whether the intervention met their expectations. Overall, the intervention seems to have the potential to facilitate sibling adaptation during the experience of a NICU hospitalization.     

Designing and delivering neonatal care in single rooms

This article will outline the phases of the design process and describe the outcomes as related to a specific neonatal intensive care design project. The single-room concept allows for increased privacy and confidentiality, as well as decreased stress of family, staff, and especially patients. The improvement in family space facilitates improved opportunities for encouraging parent and sibling participation in care. Specific developmental and technological improvements have also been gained and are outlined throughout the article.     

Sibling experiences after a major childhood burn injury

The purpose of this research project was to understand, primarily from the sibling perspective, the effect of a child's major burn injury on his or her sibling. A mixed method qualitative dominant design was implemented using the life story method for the qualitative portion. Additionally, the Sibling Relationship Questionnaire -Revised (SRQ-R) was used as a structured interview guide and for calculating scoring data to explore sibling relationship factors of warmth/closeness, rivalry, conflict, and relative status/power. Participants from 22 family cases (one or multiple family members) and 40 individuals were interviewed. To capture impact on the family over time, interviews began a minimum of two years post-burn. The central thematic pattern for the sibling relationship in families having a child with a major burn injury was that of normalization. Two components of normalization were described: areas of normalization and the process of adjustment. Areas of normalization were found in play and other activities, in school and work, and in family relations with siblings. The process of adjustment was varied and often gradual, involved school and work re-entry, and in some instances, seemed to change life perspective. Clinical implications in providing family-centered care can focus on promoting normalization by assessing and supporting siblings who may only be occasionally seen in the hospital or clinic.     

Psychological aspects of second pregnancy

Major psychological characteristics of the second pregnancy experience are described, including maternal tasks and sources of anxiety for secundigravidas, as a basis for improving care to expanding families. Clinical implications are suggested that meet the special needs of second-time mothers regarding time limitations to meet multiple demands, family relationship changes, and concerns about maternal health and fatigue. Strategies for enhancing care involve using childbirth and sibling classes, modifying health care and information from primary care providers, mobilizing supportive services and resources, and influencing policies to meet maternal and family needs.     

Family-physician interactions in the intensive care unit

Surrogate designation has the potential to represent the patient's wishes and promote successful family involvement in decision making when options exist as to the patient's medical management. In recent years, intensive care unit physicians and nurses have promoted family-centered care on the basis that adequate and effective communication with family members is the key to substitute decision making, thereby protecting patient autonomy. The two-step model for the family-physician relationship in the intensive care unit including early and effective provision of information to the family followed by family input into decision making is described as well as specific needs of the family members of dying patients. A research agenda is outlined for further investigating the family-physician relationship in the intensive care unit. This agenda includes a) improvement of communication skills for health care workers; b) research in the area of information and communication; c) interventions in non-intensive care unit areas to promote programs for teaching communication skills to all members of the medical profession; d) research on potential conflict between medical best interest and the ethics of autonomy; and e) publicity to enhance society's interest in advance care planning and surrogate designation amplified by debate in the media and other sounding boards. These studies should focus both on families and on intensive care unit workers. Assessments of postintervention outcomes in family members would provide insights into how well family-centered care matches family expectations and protects families from distress, not only during the intensive care unit stay but also during the ensuing weeks and months.     

The experiences of Chinese family members of terminally ill patients - a qualitative study

Aim. To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. Background. Palliative care aims to provide care to dying patients and their family members. Skillful interventions are necessary to help family members cope with the impending death of the patient and maintain their emotional equilibrium. Hence, it is important to understand the experiences of family members of palliative care. Design. A phenomenological study was conducted. Data were collected by semi‐structured interviews. We interviewed a purposive sample of 20 family members of terminally ill patients in a palliative care unit in Hong Kong. The data were analysed following Colaizzi's phenomenological methodology. Results. Family members experienced anticipatory grief, with reactions that included anger, unease, sadness and helplessness. This was particularly acute when the patient was first admitted to the palliative care unit. However, the family members quickly accepted the reality and committed themselves to the care of the patient, seeking informational and emotional support from the nurses. The families wanted to be assured that the patient had been offered good care and suffered no pain. It was considered important to be with the patient during the dying process. Conclusion. This study demonstrated that Chinese family members were committed to the care of the patients in the palliative care unit. Cultural beliefs played a part in influencing family emotions and concerns. Relevance to clinical practice. This study offers a direction for family interventions that acknowledge the reactions of family members to the admission of a patient to a palliative care unit. It highlights that families need active informational and emotional support from nurses.     

Needs of children during the critical illness of a parent or sibling.

The needs and significance of well children in the family typically have not been considered when addressing family-centered care. Health care providers and overstressed parents may have little awareness of or insight into the needs and concerns of these children. Without informed and sensitive interventions, however, these children may be at risk for significant long-term negative effects. This article discusses some of the needs and responses of well children who have a critically ill parent or sibling. Using a developmental framework, the author suggests interventions that may benefit these often forgotten but very vulnerable family members.     

Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units

OBJECTIVE: To evaluate the opinions of intensive care unit staff and family members about family participation in decisions about patients in intensive care units in France, a country where the approach of physicians to patients and families has been described as paternalistic. DESIGN: Prospective multiple-center survey of intensive care unit staff and family members. SETTING: Seventy-eight intensive care units in university-affiliated hospitals in France. PATIENTS: We studied 357 consecutive patients hospitalized in the 78 intensive care units and included in the study starting on May 1, 2001, with five patients included per intensive care unit. INTERVENTIONS: We recorded opinions and experience about family participation in medical decision making. Comprehension, satisfaction, and Hospital Anxiety and Depression Scale scores were determined in family members. MEASUREMENTS AND MAIN RESULTS: Poor comprehension was noted in 35% of family members. Satisfaction was good but anxiety was noted in 73% and depression in 35% of family members. Among intensive care unit staff members, 91% of physicians and 83% of nonphysicians believed that participation in decision making should be offered to families; however, only 39% had actually involved family members in decisions. A desire to share in decision making was expressed by only 47% of family members. Only 15% of family members actually shared in decision making. Effectiveness of information influenced this desire. CONCLUSION: Intensive care unit staff should seek to determine how much autonomy families want. Staff members must strive to identify practical and psychological obstacles that may limit their ability to promote autonomy. Finally, they must develop interventions and attitudes capable of empowering families.     

Care near the end-of-life in critically ill patients: a North American perspective

PURPOSE OF REVIEW: End-of-life care for critically ill patients has emerged as an area in which significant quality improvement is possible. In this article, we present a North American perspective on recent research and quality improvement initiatives in this field. RECENT FINDINGS: Some of the most important recent developments in end-of-life care in the intensive care unit concern physician-patient-family communication. There is consensus between North American and European professional societies that a shared approach to decision-making by physicians and family members is optimal. The shared decision approach demands that physicians not only skillfully elicit the patient's treatment preferences but also effectively inform the family of the patient's clinical condition and prognosis. Moreover, the ultimate responsibility for end-of-life treatment decisions is shared between the physician and the patient or family. SUMMARY: This update presents a North American perspective on six topics of particular importance to end-of-life care in the intensive care unit: (a) The role of advance directives, (b) shared decision-making and the role of the family, (c) conflict and futility in the intensive care unit, (d) cultural aspects of end-of-life care, (e) multidisciplinary care in the intensive care unit, and (f) future directions for improving end-of-life care in the intensive care unit.     

The Significance of the Patient/Family as a Unit of Care in Working with Terminally Ill Patients

This study investigates the concept of patient/family as a unit of care insofar as it affects the treatment of dying patients. One hundred social workers in three institutional settings were interviewed to determine if the patient/family concept is perceived to be more prevalent in hospitals, skilled nursing facilities, or hospices. The family’s allowable involvement in care was found to differ in these settings as were some aspects of health care provided by professionals to the family. The concept of patient/family as a unit of care was a salient one, and the concept was correlated across the three settings with job satisfaction and other characteristics of an optimal model of care.     

A multicase study of prolonged critical illness in the intensive care unit: Families’ experiences

BackgroundIt is widely acknowledged a critical illness is a stressful life event for not only the patient but also their family members; when an illness becomes prolonged, the impact is profound. It is suggested that as medical technologies advance, the number of days patients stay in an intensive care unit will increase. Therefore, it is important nurses understand how families experience a prolonged critical illness of their family member in an intensive care unit.ObjectiveTo explore the trajectory of a prolonged critical illness in the intensive care unit from the experiences of family.MethodsA qualitative, longitudinal, multi-case design consisting of six cases from New Zealand intensive care units. Findings presented in this article only relate to the family’s experiences, although patients and healthcare professionals formed part of each case. Data collection methods included observation, conversations, interviews and document review. Analysis was undertaken using thematic analysis, vignette development and trajectory mapping.FindingsRelentless uncertainty dominated all phases of the trajectory for the family during a family member’s prolonged critical illness in the intensive care unit. When faced with a critical illness, family shifted rapidly into a world of unknowns. Family worked hard to navigate their way through the many uncertainties that dominated each phase of their family member’s illness.ConclusionsNurses need to understand the levels of uncertainty families endure in order to provide care that meets the philosophical underpinnings of family centred care.     

Childhood cancer: siblings draw and tell

There is a growing awareness among health care professionals that the psychosocial needs of siblings of children with cancer are less adequately met than those of other family members. As part of a larger research study of 17 families of children with cancer, 20 healthy siblings, ages 3-11 years (7 males, 13 females), were tested using the Kinetic Family Drawing-Revised (Spinetta, McLaren, Fox, & Sparta, 1981) in one of two oncology clinics in a Southwestern state. Nine of the subjects participated in a sibling day. Data from the drawings and discussions with siblings confirm previous sibling research findings and reflect current social changes.     

Clinician statements and family satisfaction with family conferences in the intensive care unit

OBJECTIVES: The quality of family-clinician communication in the intensive care unit is often inadequate, but little is known about specific clinician communication behaviors that might improve family satisfaction. In this exploratory analysis, we hypothesized that clinicians' communication behaviors providing emotional support to families during intensive care unit conferences would be associated with increased family satisfaction. DESIGN: We audiotaped 51 intensive care unit family conferences in which withholding or withdrawing life support was discussed or bad news was delivered. Emotional support techniques used by clinicians during each conference were identified and coded using grounded theory. SETTING: Four Seattle hospitals. SUBJECTS: Family members of critically ill patients. INTERVENTIONS: Questionnaires rating satisfaction with communication were completed by 169 family members. MEASUREMENTS AND MAIN RESULTS: Linear regression with generalized estimating equation methods was used to analyze the association between the frequency of clinicians' emotionally supportive statements and family satisfaction. Increasing frequency of three types of clinicians' statements during family conferences was associated with increased family satisfaction: a) assurances that the patient will not be abandoned before death (p=.015); b) assurances that the patient will be comfortable and will not suffer (p=.029); and c) support for family's decisions about end- of-life care, including support for family's decision to withdraw or not to withdraw life-support (p=.005). CONCLUSIONS: Most family members participating in this study were quite satisfied with the communication in the family conferences. Specific clinician communication behaviors are associated with increased family satisfaction during family conferences among family members who are willing to have a family conference recorded. Our results suggest that clinicians in the intensive care unit may improve the experiences of families of critically ill patients by providing explicit support for decisions made by a family with regard to end-of-life care and by assuring families continuity of high-quality care with particular attention to the patient's comfort.     

Clinical application of family research: a unit-based approach

The needs of family members with a critically ill relative present a significant challenge to nursing professionals in the intensive care unit. Initially, interventions aimed at providing focused information and relieving anxiety take precedence. As the crisis period passes, however, the family may need to reestablish familiar patterns of functioning. Thus, family assessment and intervention is vital throughout the course of the patient's hospitalization. This article examines how a medical-respiratory intensive care unit has applied family need research in designing and implementing an ongoing family-based plan of care.     

Behavior changes exhibited by siblings of pediatric oncology patients: A comparison between maternal and sibling descriptions

The purpose of this study was to identify the coping strategies used by the well siblings of pediatric oncology patients as identified by both the mother and the well siblings. The findings of this research study showed that both mothers and the well sibling were able to identify behavioral changes (95.2% of the mothers and 85.7% of the well siblings identified behavior changes). Behavior changes identified by both the siblings and mothers included being more sensitive to the needs of others, being more thoughtful, playing with friends, fighting, trouble sleeping, and complaints of headaches. Nurses can conduct thorough assessments of sibling behavior changes when a child family member has been diagnosed with cancer. From these assessments, nurses can provide care to assist the entire family during the ill child's treatment.     

Factors associated with bereaved family surrogates’ satisfaction with end-of-life care in intensive care units

ObjectivesFamily satisfaction with end-of-life care in the intensive care unit constitutes an important outcome for evaluating end-of-life care quality. Research on this topic focuses on linking end-of-life care processes to family-surrogate satisfaction with the patient’s end-of-life care but has seldom examined patient- and family-surrogate-based factors. We aimed to comprehensively and simultaneously examine factors facilitating or deterring family satisfaction with end-of-life care in the intensive care unit from patient- and family-surrogate perspectives.MethodsFor this secondary-analysis study, 278 Taiwanese family surrogates were surveyed one-month post-patient death using the Family Satisfaction in the Intensive Care Unit questionnaire (FS-ICU), which measures care and decision-making. Associations between family satisfaction with end-of-life care and patient and family characteristics, patient disease severity, and length of intensive care stay were examined by multivariate, multilevel linear regression models.ResultsFemale family surrogates were more satisfied with patients’ end-of-life care than male family surrogates when patients had a higher APACHE II but a lower SOFA score. Adult-child surrogates had lower FS-ICU Care scores than other family surrogates. Higher satisfaction with ICU decision-making was associated with patients’ higher APACHE II but lower SOFA scores, longer stay and family socio-demographics, including being unmarried, educational attainment above junior high school and reported financial sufficiency to make ends meet.ConclusionPatient disease severity and family-surrogate characteristics are significantly associated with surrogates’ satisfaction with patients’ end-of-life care in the intensive care unit. Specific interventions should be tailored to the needs of high-risk family surrogates to increase their satisfaction with this care.     

Should we allow children to visit ill parents in intensive care units?

Visitation policies in intensive care units are very strict. These serve to protect the critically ill patient. Should children be allowed to visit an ill parent or sibling? The developmental status of each child should be considered. At all times, children should be accompanied by another family member during their visit. Nurses are invited to send in their own comments and to provide their experiences regarding having children visit patients in intensive care units.