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Family-Focused Care in Acute Illness Sandra K. Eggenberger ● Marcia Stevens

C H A P T E R 10

C H A P T E R O B J E C T I V E S

1. Explore the family experience during acute illness. 2. Examine stress, uncertainty, and suffering that may occur in a family during an acute illness

experience. 3. Review evidence that supports the presence of a family and family health during acute illness. 4. Describe nursing actions that support families during transitions in acute care illness. 5. Analyze environmental factors that support and challenge family-focused nursing practice in

acute care settings.

C H A P T E R C O N C E P T S

● Acute care ● Acute care environments ● Bedside rounding ● Discharge ● Empowerment ● Family advisory council ● Family communication ● Family decision making ● Family interactions

● Family meetings ● Family processes ● Policies and visitation ● Satisfaction ● Stress ● Suffering ● Support ● Uncertainty

Introduction

Caring for patients in an acute care setting is the type of challenging practice that many nurses think about when envisioning their career. Nursing practice in this setting is often focused on meeting acute care needs of individuals, and is less centered on family needs. Yet, caring family members often accompany individuals in acute care settings and frequently they are distressed as they experience the illness and complex care provided to their loved ones. These family members need nurses who understand their experience and will develop a partnership that comforts them during this stressful time and prepares them for the future. This chapter describes the family experience during an acute care illness and the nursing actions needed to support families during illness trajectories. Barriers to family-focused

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Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

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nursing care in the acute care setting and ways to overcome them are addressed. Without nursing practice focused on the family, the individual with an illness could face readmis- sions, poor outcomes, and dissatisfaction (Bauer, Fitzgerald, Haesler, & Manfrin, 2009) and the family faces added stress and challenges (King et al., 2013). An exemplar case study of a family in which a family member experiences an acute illness is threaded throughout the chapter to illustrate ways family-focused nursing care can be provided.

Acute Care Settings

Acute care is needed for severe illness, traumatic injuries, disabilities, surgery, and compli- cations of chronic conditions. Management of these situations may require admission to a medical unit, transfer to an intensive care unit (ICU), surgical intervention, or treatment in the emergency department. Persons admitted for acute care, along with family members, are anxious about their diagnosis, treatment, and outcomes. Even when procedures are elective, the experience can be stressful. The goal is to resolve the illness, injury, or other catastrophic dilemma as quickly and effectively as possible. Acute care stays are often brief but intense experiences. The equipment, treatments, interventions, numerous care providers, complex language used by care providers, and overall acute care culture are all unfamiliar to the patient and family.

The acute setting also poses unique challenges for the nurse. One must balance the acute care demands of the individual while partnering and communicating with the family throughout transitions that occur during an acute care stay (King et al., 2013; Strang, Henoch, Danielson, Browall, & Melin-Johansson, 2014). A nurse’s focus on the complex care of the family member with the condition is a priority for both the patient and the family. Nurses’ beliefs about the role of family members in acute care settings may be contrary to what the family expects, as the family attempts to fulfill roles as protector for their family member (Carr, 2014; Eggenberger & Nelms, 2007; Vandall-Walker & Clark, 2011; Wright & Bell, 2009). These beliefs may interfere with nurses’ ideas about their capacity to provide family-focused care in acute care settings. Nurses focus on family often as background; families are often excluded, and may be viewed as a barrier to care delivery (Davidson, 2009; Davidson, Jones, & Bienvenu, 2012; Santiago, Lazar, Depeng, & Burns, 2014; Verhaeghe, Defloor, Van Zuuren, Duijnstee, & Grypdonick, 2005). Yet, nurses who think family understand that a nurse has profound power and influence over the tone and outcome of the experience for families and includes families as partners, develops relationships with family members, and addresses family concerns during the experience of an acute illness to improve care (Bell, 2011; Nelms & Eggenberger, 2010; Wright & Leahey, 2013).

Family Illness Experience During a Family Member’s Acute Illness

Family-focused nursing care is important because illness is a shared family experience that can be overwhelming and threaten family health and the family’s ability to support the member of the family with an acute illness (Azoulay et al., 2003; Davidson, Jones, & Bienvenu, 2012; Marshall, Bell, & Moules, 2010; McAdam, Dracup, White, Fontaine, & Puntillo,2010; Williams, 2005). Hospitalization with an acute illness is stressful and brings worries, decision making, and changes in family processes such as family communication, bonds, and coordination. Family members of an acutely ill person experience multiple

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threats from the diagnosis of an illness, admission to an acute care setting, the environment, transitions, and complex hospital treatments. Concerns such as stress, uncertainty, and suf- fering often emerge during a family’s experience with an acute illness (Davidson, Jones, & Bienvenu, 2012; Nelms & Eggenberger, 2010; Tong & Kaakinen, 2015).

Family Stress

Family stress can be described as the “pressure or tension in the family system—a distur- bance in the steady state of the family” (Boss, 2002, p. 16). When faced with an acute illness, families are stressed because of changes in family life, threats to the individual and family, lives that are on hold, lack of information and communication, and waiting for answers (Davidson et al., 2007; Vandall-Walker & Clark, 2011). Diagnosis of an illness or admission to an acute care setting, a transfer, and discharge can increase stress as a family adjusts to the unknowns and changes (King et al., 2013; Stacy, 2012). Nurses who think family anticipate these times of family stress and offer support, explanations, and information.

The meanings of events and perceptions during an acute illness affect the degree of stress experienced (Boss, 2002; Davidson, 2010). Families try to gain some control in new situ- ations by using behaviors they believe will fulfill their needs (Hardin, 2012). For example, a family questions nurses about care and treatments to better understand. Some family members might be hesitant to ask questions; others are abrupt, annoyed, and agitated. Nurses who are family focused initiate relationships and conversation with a family to understand their experience and perceptions (Bell, 2011; Hallsdottir & Svavarsdottir, 2012; Svavarsdottir, Tryggvadottir, & Sigurdardottir, 2012).

Individuals in a family unit may have views that differ from one another and cause con- flict and overwhelm family members (Appleyard et al., 2000; Boss, 2002; Fontana, 2006). Some family members are angry, others are silent, some are conflictual, and still others work together (Warnock, Tod, Foster, & Soreny, 2010). Family members may argue with one another about who is helping more, who should make decisions, or who will be the leader of the family in supporting the family member with acute illness. Although an illness can bring a family closer together, it can also cause conflicts and disrupt a family and the usual functions, roles, and tasks (Cannon, 2011; Eggenberger & Nelms, 2010; Wiegand, 2008; Wiegand, Deatrick, & Knafl, 2008). Nurses who think family address the conflicts and recognize a family faces actual and perceived threats (Hardin, 2012). Actions by nurses must help families to communicate, resolve conflict, and reach consensus (Pastor-Montero et al., 2012). Nurses may not be able to solve all issues, but they can maximize care out- comes by providing clear and consistent explanations to a family, advocating for a family or individual family member while communicating and helping family members to interact and share their thinking (Fumagalli et al., 2006; Hardin, 2012; Khalaila, 2013). Table 10.1 identifies a few examples of research studies that explore stress during an acute illness and provide direction for family care.

Family Uncertainty

Distress of uncertainty is a central theme of the illness experience in acute care settings as family members withstand the unknowns of the health care environment, question illness outcomes, and struggle to make decisions and alter their family routines (Dupuis, Duhamel, & Gendron, 2011; Fontana, 2006; Trimm & Sanford, 2010; Vandall- Walker & Clark, 2011; Wiegand, 2008). Uncertainty has been defined as the inability to identify meanings of an illness event that influences abilities to manage situations

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256 CHAPTER 10 ● Family-Focused Care in Acute Illness

TABLE 10 -1 L iterature Related to Family Stress W ith A cute and Critical Illness

RESEARCH

Radfar, Ahmadi, & Fallahi K hoshknab (2013)

Davidson, J ones, & Bienvenu (2012)

J ones, Backman, & Griffiths (2012)

Black, Boore, & Parahoo (2011)

Nelms & Eggenberger (2010)

Davidson (2009)

FAMILIES STUDIED

Family members of patients suffering from depression

Families who experienced critical illness

Families experiencing a critical illness

Patients and families hospitalized with critical illness

Families experiencing a critical illness

FINDINGS

Families work to tolerate a great amount of stress with depression.

Psychological, physical, and financial factors impose turbulent life on families.

Family responses to critical illness include development of adverse, acute stress disorder and post-traumatic stress.

Post-traumatic stress occurs in relatives of critically ill individuals. An intervention of diaries may alleviate post- traumatic stress.

Nurse-led facilitation designed to support family comfort and access to patient positively influenced patient psychological recovery from ICU.

Stress of critical illness is increased when communication is not therapeutic and maintained or exchange of information is inconsistent.

Families experience stress and anxiety.

IMPLICATIONS: FAMILY-FOCUSED NURSING ACTIONS

Reduce burden of family by providing knowledge about how to communicate with their family member.

Offer emotional support resources to patients and families.

Optimal communication and inclusion in care can reduce family complications of stress.

Refer families to support groups and follow-up care after critical illness experience.

Provide patients and families with diaries during a critical illness.

Guide a family member in communicating with a critically ill patient.

Nurse-family meetings can minimize the stress and distress of critical illness.

Family-centered care helps to meet the needs of families.

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(Mishel & Clayton, 2008). Over the past decade, uncertainty has been described as a major and pervasive component of the illness experience that affects clinical outcomes (Hansen et al., 2012).

The uncertainty in illness theory proposes that uncertainty emerges in illness conditions when there is a lack of information, complexity, unpredictability, and ambiguity (Mishel, 1997; Mishel & Clayton, 2008). These issues certainly exist in the acute care setting. Acute illness causes family difficulties as they try to interpret information and deal with the un- predictability of outcomes (Mishel & Clayton, 2008). Nurses who think family prepare families for events that signal changes in treatment or condition and explain what matters to the patient and family in ways the family can understand (Hansen et al., 2012). Explain- ing symptoms and the possible effects of treatments must occur repeatedly with multiple family members who have various understandings at different times (Hansen et al., 2012). The complex system of care and multiple environmental transitions are challenging to the family. Various individuals in the system may use different words or interpret situations in their own way which may leave a family confused and mistrustful (Eggenberger & Nelms, 2007). Nurses who think family continually strive to clarify messages, treat concerns re- spectfully, and assist families in managing the unknowns and preparing for the future (Hardin, 2012; Stayt, 2009; Tapp, 2001; Van Horn & Kautz, 2007). Table 10.2 identifies a few examples of early and current research that explore uncertainty and provide direction for family care. Nurses who consistently exchange information with families, prepare them for upcoming events, and offer clarity can help families manage uncertainty during acute illness.

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TABLE 10 -2 Research Related to Family Uncertainty During an Illness Ex perience

RESEARCH

Hansen et al (2012)

Eggenberger, Meiers, K rumwiede, Bliesmer, & Earle (2011)

Sammarco & K onecny (2010)

GROUPS STUDIED

A synthesis of 15 qualitative studies exploring patient experiences with uncertainty during illness

Families with a family member living with various chronic illnesses

Latina breast cancer survivors

OVERALL FINDINGS

Implications for nursing practice are evident in qualitative study findings.

A process of family reintegration occurs within a context of uncertainty.

Latina population reported higher level of uncertainty when compared to Caucasian.

IMPLICATIONS: FAMILY-FOCUSED NURSING ACTIONS

Organize the trajectory of an illness through the health care system.

Support patients through relationships.

Provide knowledge through clear and accurate communication.

Include the family to reduce uncertainty.

Assist family to manage the unknowns, plan for the future, and protect their ill family member.

Acknowledge the struggle to adjust and manage trajectories.

Address cultural differences in managing uncertainty.

Anticipate unique needs based on culture.

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TABLE 10 -2 Research Related to Family Uncertainty During an Illness Ex perience— cont’ d

RESEARCH GROUPS STUDIED OVERALL FINDINGS

IMPLICATIONS: FAMILY-FOCUSED NURSING ACTIONS

Stone & J ones (2009)

Eggenberger & Nelms (2007)

Brashers (2003)

Northouse et al (2002)

Sammarco (2001)

Adult children of parents diagnosed with Alzheimer’s disease

Families experiencing critical illness

Individuals with HIV illness

Women with recurrent breast cancer and their family members

Younger breast cancer survivors below age 50

Sources of uncertainty include unpredictability of social relationships and potential family conflict.

Uncertainty is a concern for family due to foreign environment, lack of understanding of treatment, and limited consistent information exchange.

Increased uncertainty when family not included in the care of member or lacked connection with the nurse.

Unpredictable interpersonal reactions contribute to uncertainty.

Family satisfaction with a family program that focused on giving information and uncertainty management techniques built on family strengths.

Negative correlation between perceived social support and uncertainty.

Negative correlation between social network size and uncertainty.

Negative correlation between uncertainty and quality of life.

Nurses need to assist family members to manage conflicts and their relationships.

Explanations repeatedly to family members increase understandings.

Clarify interpretations of other health care provides.

Develop trusting relationship with family to minimize uncertainty.

Engage in therapeutic conversations throughout illness.

Prepare family for changes in environment, illness, or management.

Address family perceptions and reactions to events of the HIV illness.

Identify and build on family strengths.

Provide consistent exchange of information.

Explore available social supports and access to social network.

Consider patient and family’s beliefs.

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Family Suffering

Suffering in the acute care setting is most often attributed to the ill person; however, family members often hurt, worry, and feel the pain alongside their family member (Weingarten, 2012). Cassell defined “the state of severe distress associated with events that threaten the intactness of the person” (Cassell, 1991, p. 33). An individual with respiratory failure may be suffering with respiratory distress, but the family may also experience distress as they attempt to protect their loved one and despair as they observe the dyspnea. Suffering has been described as “physical, emotional, or spiritual anguish, pain or distress” (Wright, 2005, p. 3) that most certainly can occur in a family. Yet, family suffering may be over- looked when a priority is the family member with an acute illness. Family members have concerns about care outcomes, treatment decisions, and the changes that influence family life or threaten the family unit (Wright, 2005). Conflicts and tension often arise among members who hold different beliefs; nurses who fail to include or guide the family can actually magnify the suffering experience during acute care (Eggenberger & Nelms, 2007; Vandall-Walker & Clark, 2011). Suffering with a family member during an acute illness may not be eliminated, but it can be acknowledged and addressed, which makes a differ- ence to the family (Martinez, D’Artois, & Rennick, 2007; Wright, 2005; Wright & Bell, 2009). See Table 10.3 for additional literature about suffering.

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TABLE 10 -2 Research Related to Family Uncertainty During an Illness Ex perience— cont’ d

RESEARCH GROUPS STUDIED OVERALL FINDINGS

IMPLICATIONS: FAMILY-FOCUSED NURSING ACTIONS

Mast (1998)

Mishel (1997)

Breast cancer survivors

Individuals and family members living with acute and chronic illness

Uncertainty is stressful and pervasive.

Uncertainty is a response to fear of recurrence, long- term treatment side effects.

Social support decreases uncertainty.

Uncertainty develops in acute and chronic illness.

Reducing uncertainty in family members increases capacity to support ill member and decreases family’s emotional distress.

Explore fears and discuss outcomes of treatment.

Address perceived and actual threats.

Acknowledge uncertainty. Identify support in systems. Assist family members to

maintain supportive network.

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260 CHAPTER 10 ● Family-Focused Care in Acute Illness

TABLE 10 -3 L iterature Related to Family Suffering During an Illness Ex perience

AUTHORS

Marshall, Bell, & Moules (2010)

Verhaeghe, van Z uuren, Grypdonck, Duijnstee, & Defloor (2010)

Chintana (2010)

Eggenberger & Nelms (2007)

Isovaara, Arman, & Rehnsfeldt (2006)

Tapp (2001)

PREMISE AND FINDINGS

Illness is viewed within family relationships.

Relational suffering is a complex human experience that is a threat to wholeness and related to relationships with others (Marshall, 2007).

Exploration of relational suffering in families with a family member experiencing mental illness.

Families focus efforts on making suffering bearable following a traumatic coma.

Families attempt to protect entire family and loved ones from unnecessary suffering.

Family suffering with persons living with HIV infection and AIDS.

Practice that fails to recognize the family as the unit of care invites unnecessary suffering.

Developed and implemented a nursing intervention with the family.

Families suffer as they face life- threatening illness of a family member.

Nurses can magnify family suffering if they exclude and fail to connect with families.

Review explores family suffering related to war experiences.

Families suffer from the physical and psychosocial disorders of veterans.

Families function from a place of compassion.

Families suffer as they manage their own distress and face life- threatening illness of a family member

Emphasis on the relational elements of suffering is important to nursing pratice.

IMPLICATIONS: FAMILY-FOCUSED NURSING ACTIONS

A Family Systems Nursing Framework informed by the Illness Beliefs Model can examine beliefs to minimize suffering.

Nurses who use therapeutic conversation to explore illness narratives and suffering experiences can soften relational suffering.

Supporting family members in their efforts to protect their loved ones should be encouraged.

Encourage open and flexible visiting hours to allow families to protect.

Nursing interventions focused on developing nurse-family trusting relationships, exploring illness beliefs, promoting facilitating beliefs and challenging constraining beliefs, and affirming family strengths soften family suffering.

Nurses who develop connecting relationships with families help families endure the suffering.

Family must be viewed as a unique part of this experience.

Nurse-family conversations created new understandings among family members that were helpful to the relationships, addressed concerns that contributed to suffering, and explored uncertainties with illness.

Illness conversations with nurses can alleviate family suffering.

Therapeutic conversations promote family healing.

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Ecological Perspective of the Family Acute Illness Experience

An ecological perspective using the Family Health Model points out threats to family health in context of an acute illness (Denham, 2003). The daily routines of the family’s members change to manage demands of the acutely ill member and that person’s usual roles (Denham, 2003; Sacco, Stapleton, & Ingersoll, 2009). During the acute care event health routines of family members change as they attend to the ill member’s personal needs. When a family waits for information, they sit long periods in waiting rooms and fail to attend to personal needs (Trochelman, Albert, Spence, Murray, & Slifcak, 2012). They lack sleep, may resort to eating meals from snack machines, forget their medications, and possibly postpone their regular medical treatments. During acute care, some usual family work continues, but advocacy for the ill member requires attention. Families try to balance usual life demands while satisfying ill member needs, offering protection and comfort, and managing personal concerns (Van Horn & Tesh, 2000). Families need a nurse’s support while managing these demands.

Once the acute episode resolves, families often serve as caregivers when the individual returns home. Frequently the ill family member still requires care and family members need to be fully prepared to provide the necessary support (Popejoy, 2011). Preparing for discharge from the acute care setting often includes teaching that focuses on activity restrictions, diet, medications, and follow-up appointments. These details are important, but they may not be the family’s most pressing needs (Popejoy, 2011). Yet, families may be reluctant to discuss concerns such as adequacy of health insurance and financial debt. How will they manage travel to follow-up medical visits or address the physical and emotional demands of care? Families need a system perspective of care, rather than an elemental patient-focused view (Hardin, 2012). Intentional planning for a coordinated acute care discharge is required to avoid possible readmissions and emergency care.

A nurse who is family focused also considers the context of the family home, even while the individual with an illness is hospitalized. Ill individuals may return to households where prior family routines are now barriers to health and deterrents to healing. For example, an individual with a recent cardiovascular event may require extensive changes in the family diet. With the illness event, the family must acquire new knowledge and skills (Bjornsdottir, 2002; Paterson, Kieloch, & Gmiterek, 2001; Popejoy, 2011). Families need support, edu- cation, and skills for home care that is often complex (Popejoy, 2011). Treatments often need to continue when an individual returns home and families need to know ways to support their family member. Family nurses can help members access clear information in timely ways, plan for realities, and guide problem solving for the acute stay and discharge home (Hansen et al., 2012; Popejoy, 2011; Weiss et al., 2007).

A family’s home and household are rooted in a complex interdependent neighborhood of community and larger society systems. Families and their interdependent environments can provide resources for acutely ill persons, but resources across families are not all equal. A nurse who thinks family considers the unique environment and functions of each family member and plans. A family-focused nurse works with the family to seek resources and manage the challenges of a household environment during a family mem- ber’s acute illness. An ecological perspective of the individual with an acute condition and the family’s environment has potential to improve care, access to resources, and adjustment to transitions (Denham, 2003). Nurses continue to offer support and guid- ance as the family adjusts their environment and routines. Nurses worldwide are working to improve the health of families. Box 10.1 describes Dr. Chieko Sugishita, a leader in Japan who dedicated her career to transforming the care of families through research, education, and practice.

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Nursing Practice in Acute Care Settings

Evidence suggests nurses play pivotal roles in comforting the family, advocating for families, guiding families, and developing a connecting partnership with families during an acute illness experience (Bell, 2011; Butler, Copnell, & Willetts, 2014; Chesla & Stannard, 1997; Cypress, 2011; Eggenberger & Nelms, 2007; Meiers & Brauer, 2008; Meiers & Tomlinson, 2003; Soderstrom, Benzein, & Saveman, 2003; Svavarsdottir et al., 2012; Tomlinson, Peden-McAlpine, & Sherman, 2012; Wiegand, 2008). Nursing practice influences illness outcomes and prepares families for their support role (Chesla, 2010). Nurses guide a family to cope with the challenges of an illness and strive to meet the needs of the family.

The acute care experience has been studied for years and findings have identified that families need information, closeness, assurance, support, and comfort (Coulter, 1989; Leske, 1991; Molter, 1979). Families need nurses to provide a consistent exchange of information and guidance (Hardin, 2012; Nelms & Eggenberger, 2010). Families want to be near, watch over, and advocate for their ill member (Dudley & Carr, 2004; Eggenberger, Krumwiede, Meiers, Bliesmer, & Earle, 2004; Hardin, 2012; Khalaila, 2013). Families do not want to be left out; they want to be included in the care (Khalaila, 2013; Sacco et al., 2009). During acute situations, families are often faced with puzzling rituals, rules, technology, and strangers in an unfamiliar environment that is confusing and intensifies distress (Hupcey, 1998; Nelms & Eggenberger, 2010). This distress can be exacerbated when nurses view family as outsiders and allow them limited involvement and marginal control in decisions

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BOX 10-1

Family Tree

Chiek o Sugishita, RN, PhD (Japan)

Chieko Sugishita, RN, PhD, provided bold leadership and tireless dedication to the early development of family nursing in Japan. Her efforts to build the science of family nursing began in 1971 as a research assistant at the University of Tokyo. For many years, she taught family health care as a lecturer, and in 1992, she was promoted to full professor and invited to lead the Department of Family Nursing at the University of Tokyo. In her leadership role at one of Japan’s most prestigious universities, Dr. Sugishita carefully developed her strategic vision for advancing family nursing. She established it as an academic discipline, recruiting well-known researchers, aligning with strong political supporters, and developing graduate level education in family nursing. In 1994, she launched the J apanese J ournal of Research in Family Nursing (JJRFN), which provided a forum for scholarly exchange. She was a leader in forming the first national family nursing organization of its kind in the world. On October 1, 1994 she organized and chaired the first national meeting of the Japanese Association for Research in Family Nursing (JARFN, < http://square.umin.ac.jp/jarfn/jarfn/index.html> ) and served as its first president. JARFN currently has over 1,500 members and hosted the Tenth International Family Nursing Conference in Kyoto, Japan, in 2011. JARFN was one of the earliest nursing associations to be officially enrolled in the Japanese Scientific Academy. Dr. Sugishita nurtured a large community of family nursing researchers, educators, and practitioners and encouraged cross-fertilization of ideas by inviting family nursing colleagues from around the world to offer ideas in workshops and conferences. She encouraged small learning groups of Japanese nurses to travel abroad to visit programs of excellence in family nursing. In 2002 she translated the book B eliefs: The Heart of Healing in Families and Illness (Wright, Watson, & Bell, 1996) into Japanese language. She also published a Japanese undergraduate family nursing textbook. In 2005, at the Seventh International Family Nursing Conference in Canada, she was recognized for her significant pioneering contributions to family nursing. Dr. Chieko Sugishita died in 2007, but her influence continues to live on through her former students and colleagues who are current leaders.

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about what is happening (Vandall-Walker & Clark, 2011). Families want reassurance their family member is receiving optimal care.

Families need nurses who can provide quality care for their family member, but who are also able to develop relationships with the family unit. Yet, evidence suggests nurses might see needs for family involvement, but often feel ill prepared to develop caring relationships with them (Stayt, 2009). With multiple families’ multiple needs, nurses may not be able to address every family concern, but a nurse can offer frequent honest information, support, and guidance with sensitivity in ways that meet the needs of families (Khalaila, 2013).

The nurse in the acute care setting faces several challenges to family-focused care. Tech- nological advances, numerous care providers, and complex delegated medical tasks in this setting require nursing practice to integrate complex technical and relational skills to care for the physical needs of the ill individual and the emotional needs of the entire family (Eggenberger & Regan, 2010). A nurse collaborates within an interdisciplinary team whose members all strive to communicate with the families. A nurse in this setting must prioritize the care for an individual with an acute illness and the family who wants to know their family member is cared for with competence and compassion (Kaakinen, Coehlo, Steele, Tabacco, & Hanson, 2015). Family nurses encourage active roles by family members throughout the acute care stay and help them prepare for transitions. Nurses who are focused on the family invite them to participate: “Would you like to be involved in caring for your husband?” Knowledge and skills to assume caregiving roles are needed and family nurses assist them in making needed transitions. “Your husband will go home with this dressing, would you like to come closer and watch?” Nurses must assume that most fam- ilies have questions, but they don’t always know what or who to ask or are afraid to ask. A nurse acknowledges this difficulty, “At times it is difficult for a family to know what questions to ask, what is your most pressing concern right now?”

Families want and need nurses to initiate relationships with them (Bell, 2011). Nurses who are sensitive to family needs are trusted because they provide therapeutic interactions and initiate therapeutic conversations (Box 10.2) (Wright & Leahey, 2013). Nurses who think family focus on the patient and family experiences, rather than the patient alone. They are prepared for the distress that might result in the event of a life-changing acute illness. Nursing actions focused on the family in the acute care setting strive to promote health and well-being of the family unit. Patient-centered models and family-focused care have unique foci, approaches, beliefs, and practices for the nurse (Table 10.4). Box 10.3 describes a program of research in New Zealand that addresses family-focused care tied to community care and promotes a model of care focused on family health. Box 10.4 introduces Dr. Michiko Moriyama who has demonstrated outstanding global leadership in family nursing.

CHAPTER 10 ● Family-Focused Care in Acute Illness 263

BOX 10-2

Q uestions to Begin a Therapeutic Conversation

Initiating conversations can be a challenge for nursing students and novice nurses. Asking open- ended questions is a good way to obtain information and share information with individuals and family members. Here are some examples of questions to ask:

● What kinds of questions do you have about the care that your family member will receive while you are here?

● Is this your first stay in this care center? If so I would like to tell you some things that will be useful. ● The words nurses and other health professionals use can be confusing; have you heard some

terms that you would like to have better explained? ● What can I help you with the most right now? ● I understand this is a difficult time for you and your family. What is your main concern right now?

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264 CHAPTER 10 ● Family-Focused Care in Acute Illness

TABLE 10 -4 Nursing Practice Comparison Between Patient-Centered Models and Family -Focused Care

ELEMENTS OF NURSING PRACTICE

Focus of nursing practice

Relational stance of the nurse

Aims of nursing care actions

Nurses’ attitude

Nursing actions

Significance of family involvement in care

Acute care setting environment

PATIENT-CENTERED MODEL

Outcomes for illness and injury focused on the individual as care recipient

Relationship primarily directed toward ill person

Therapeutic actions focus on the individual’s acute needs with consideration of family involvement as background focus

Emphasis on delegated tasks and independent nursing actions with ill person

Focus of nursing care is problems linked with ill person

Nurse directs care of ill hospitalized individual

Nurses are expert decision makers who communicate with the family

Nurse prepares ill person for discharge with limited attention to family support or unique family needs

Nurse cares for ill individual with a focus on disease or illness

Family viewed as background to the illness recovery

Family included at times while focus is on the care of ill person

Medical and health care providers are primary provider of direction for ill person’s care

FAMILY-FOCUSED CARE

Outcomes for individual and family unit focused on continuous coordinated care supporting health of individual and family.

Relationship directed toward individual with an illness and family unit.

Therapeutic actions aimed at individual’s acute needs with intentional consideration of building a therapeutic individual-nurse-family partnership, including the family, and caring for the family.

Emphasis on delegated tasks and collaborative nursing actions with ill person and family unit.

Focus of nursing care is health of ill person and family unit.

Nurse shares responsibility for care of ill person with family unit and they collaborate in care of ill person and family unit.

Nurse involves ill person and family unit in decision making and communication while recognizing expertise of the family.

Nurse prepares ill person and family unit for discharge and considers concerns of both patient and family continuity of care and family health.

Nurse cares for ill persons and family unit with a holistic focus on wellness, complication prevention, and self-management.

Family central to the care of the ill person and family health.

Family included with mutual goals on healing and wellness.

Families, nurse, and others care for the ill person and family unit and provide direction for care.

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Case Study Phase I: Introduction

To better understand the influence of nursing actions and family responses during an acute illness, an evolving case scenario of the May family will unfold throughout the chapter. The May family case study serves as an example of common situations experi- enced during an acute illness episode. Aspects of the case are described in each phase and then followed with discussion points that describe family experiences and particular family-focused nursing actions.

John May is 38 years old and is married to Sarah, who is 40 years old. They live in a suburban community of about 50,000 people. John is the chief executive of a large corpo- ration and Sarah is a high school teacher. They have two children, 16-year-old son, Adam,

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BOX 10-3

Evidence-Based Practice

Innovation in health care delivery is a national and global concern that needs to respond effectively and efficiently in ways that are not cost prohibitive. In the United Kingdom, they speak of “ putting people first,” in the United States there is conversation about “ patient-centered medical homes,” and in New Z ealand the slogan is “ better, sooner, more convenient.” How can nurses be part of a changing workforce and contribute to innovative system reform? Needs for population health care suggest that it might be time to move away from primary, secondary, and tertiary thinking or care that primarily focuses on individuals. Dr. Merian Litchfield has long been interested in the predicament of young families living in complex health circumstances. Her initial studies allowed for home visits with naturally flowing conversations that created formats for future visits. Through these actions, she saw families transformed as they gained abilities to be proactive in their daily lives. She began to understand that family health was a process with partnerships, health factors, dialogue, and meanings.

The next phase of this research used case management. Specialty and family nurses formed a case team. They used caring relationships and fiscal responsibility in mentoring families with complex problems. Using a cooperative approach, the nursing teams used group meetings to discuss families’ significant problems. They were addressed through what was called a “ healthcare package,” or HP. The teams gained an academic understanding about the ways family nursing practice improved health outcomes, increased satisfaction, addressed self-management concerns, and provided more integrated and effective care. In this care form, family nurses were leaders.

A third aspect of this program of research was to identify ways the family nurse role could make sense to various stakeholders including those in health care and community settings. A 3-year project with a rural deprived population used a participatory paradigm or partnership. Family health was viewed as neither fixed nor generalized. Nurses moved to become recognized parts of the community and visited with families whenever their health complexity became an issue. The family HP represented a collaborative interdisciplinary effort orchestrated by the family nurses and tailored to family needs. The essential aspects of this model are that it was people centered, integrated service design and delivery, was cost effective, offered a coherent skill mix and competencies, and encouraged professional nurse development. This care model used family nursing as the key factor in health care design. Family nursing honored the “ humanness of the health circumstances” through this model, which was tested in New Z ealand.

Source: Litchfield, M. C. (2011). Family nursing: A systematic approach to innovative health care delivery. In E. K. Svaversdottir & H. Jonsdottir (Eds.), Family nursing in action (pp. 285–307). Reykjavik, Iceland: University of Iceland Press.

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and 14-year-old daughter Amanda. The family is close knit and spends much time together. Parents attend their children’s sports activities and assist them with homework. They have lived in their home for a long while and have neighborhood friends who are like family. Members of the May family regularly see their physician, but no one has ever been hospitalized. Adam was hurt playing basketball a few months back and had stitches in the emergency room. Adam has asthma, which is well controlled with medication and preven- tive behaviors, and regularly sees his family physician.

John has a history of severe asthma and chronic hypertension; both conditions have been controlled for many years with several medications. John weighs 250 pounds, a large amount for his 5'10" height. He has been trying to lose weight and eat healthier. He smokes when under stress, but is trying to quit. Neither Sarah nor Amanda has health concerns. Their extended family lives in different states and is only seen on holidays or vacations. Joe May, John’s father, died at a young age from a severe asthma attack. He was hospitalized with several episodes of respiratory problems before his death. Recently, John has been dealing with an ongoing respiratory problem and was treated with antibiotics by his family physician.

Case Application: Ecological Perspectives

The context of acute illness for the May family has many factors to consider. This family has lived in the same home and community for many years with few health problems. The family functions or interacts in ways members value. They have some health challenges but try to take precautions. John felt great loss when his father died and worries about what his family would do without him. The May parents work, but John’s job provides most of the finances for their present lifestyle. His family encourages him to lose weight, quit smoking, and be more active.

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BOX 10-4

Family Tree

Michik o Moriyama, RN, PhD (Japan)

Michiko Moriyama, RN, PhD, is a professor of clinical nursing, at the Institute of Biomedical and Health Science, Division of Nursing Science, at Hiroshima University in Japan. She started the first Family Nursing Study Group at Yamaguchi Prefectural Hospital in Japan, where she developed and refined an innovative model for teaching practicing nurses the skills of family nursing through live demonstration, supervision, case consultation, and mentoring. She published books about the application of the Calgary Family Assessment and Intervention Models, produced five educational videotapes, and published articles in academic journals. Her current research focuses on caring for families with chronic illness and examining health care delivery systems. Dr. Moriyama has been a board member of the Japanese Society of Health Support Science, the Disease Management Association of Japan, Japan Society of Health Care Administration, and the Japanese Association for Research in Family Nursing (JARFN). She chaired the Tenth International Family Nursing Conference, June 24–27, 2011, hosted by JARFN in Kyoto, Japan (< http://www.ifnc2011.org/> ). Three months before the conference was scheduled, Japan experienced a devastating earthquake and Dr. Moriyama provided competent, stabilizing leadership to ensure that the international meeting was a successful and well-organized event. The conference theme was “ Making Family Visible: From Knowledge Building to Knowledge Translation.” In 2005, Dr. Moriyama was awarded an Innovative Contribution to Family Nursing Award by the J ournal of Family Nursing for her outstanding entrepreneurial and energetic leadership of family nursing in Japan.

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Sarah worries about John’s asthma and is fearful about his respiratory problems. She knows he takes his medicine and wants him to quit smoking. She worries what life would be like without him. She is nurturing and protective. Adam and Amanda see their father as the family protector. This family has health routines around self-care, safety, family care, mental health behaviors, family member caregiving, and illness care (Denham, 2003).

When nurses think family, they get to know families as unique social groups. They iden- tify ways members care for one another. Once we learn about the May family it is impor- tant to understand the family unit and individuals. If you were assigned to their care, how might you consider the entire family unit’s health? What strengths do you see? Are there areas of concern? What would a family-focused nurse notice and address?

Ideas of race, ethnicity, religion, culture, and education are not discussed in this case, but they might need attention in acute care. An interpreter may be needed if another language were spoken or a person were deaf. If a religion required special dietary practices, the nurse needs to know. Education level may require adjustments in communication, printed and verbal. Questions about work, school, community support, and resources might be appropriate. Learning about the family provides the nurse with a wealth of information to guide nursing actions.

Case Study Phase II: Acute Illness Requires Hospitalization

Sarah leaves for work before John and takes their children to school. Sarah receives a call from her husband, “I think you should come home. I stayed home from work today because I was feeling worse. I am feeling like I can’t catch my breath.” John is recalling his father’s death and is frightened, but does not tell her. Sarah says she will be there soon. She arranges to leave her class with a substitute teacher and rushes home. John has been taking antibiotics for the last 5 days. His temperature is rising and he is having an increased short- ness of breath. Sarah phones the physician when she arrives home and describes his condition. Sarah is advised to take him to the emergency department. John says, “Don’t worry I will be okay,” but he is anxious.

As they drive to the hospital little is said. John is having difficulty breathing and seems restless. When they arrive, Sarah is told to sit in the waiting room while he gets settled and the admission is completed. John is frightened, but says nothing. He waits in the examina- tion area alone and wonders: What is wrong with me? What will happen? Why can’t Sarah stay with me? What happened at the business meeting this morning? What will my children do if something happens?

Sarah sits in the waiting area. She thinks: I have information they need about John’s medication, his history of hypertension, and his family history of asthma. What is happen- ing? I am afraid. I need to arrange for Adam and Amanda to get to their sporting events this evening. I hope my students are okay with the substitute teacher. Why is no one telling me what is going on? I should be in there with John—why won’t they let me?

Sarah feels very anxious. She is thinking about John’s father, Joe, and his death at a young age. She questions: How would I manage without John? Should I call Adam and Amanda and tell them what is happening? What will I tell them? Yet, she sits silent as she waits to be invited into the room. After what seems like forever, Sarah asks the receptionist when she can see her husband. Finally, she is ushered to the room. Sarah looks at John with fear, but remains silent. Sarah asks the nurse, “What is wrong with my husband? Do I need to call my children?”

As the nurse leaves the room, she states, “The doctor will be here shortly to speak with you.” John says he feels worse. Sarah says little because his shortness of breath seems

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worse. Sarah waits, holds his hand, and thinks about his condition last week. She wonders if she should have done something. Should she have acted sooner? She thinks about her son’s and daughter’s hockey games tonight. John said he had an important meeting at work. Why did he not get better with the antibiotics? Why is he so short of breath? Endless ques- tions, fear, and anxiety overcome Sarah and John.

The physician finally arrives. John has been there a long time. Some tests are done and he is admitted to a medical-surgical floor. Sarah is grateful that the nurse asks her to stay in the room as he is settled. The nurse introduces herself, explains the plans of care for the diagnosis of pneumonia, and collects contact information from Sarah.

Case Application: Stress, Uncertainty, and Suffering With Acute Illness Hospitalization

The hospital environment and the hospitalization of a family member bring fear of the unknown, the stress of interrupted family activities, and an uncertain future that create emotional tensions for family members. Families often experience a sense of helplessness dur- ing acute care for a member and thoughts of losing the individual make them feel vulnerable. When families understand events they are reassured and less anxious. Nurses who think family explain purposes of equipment and treatments and answer questions. The nurse’s deliberate actions to answer questions increase the family member’s sense of control and gave her a sense of empowerment, the process of developing competence and a capacity to solve problems (Persily & Hildebrandt, 2008). Nurses in acute care settings know some usual treat- ments for particular diagnoses and anticipate predictable family questions. These nurses describe what will or might happen so that families are prepared and can act proactively.

Providing families with information, familiarizing them with environments, answering questions, and explaining roles and plans create trust and help build relationships (Svavars- dottir et al., 2012; Wright & Leahey, 2013). For instance, it helps to explain that the beeping of the intravenous equipment does not have the same meaning as the oximetry alarm. This helps family members understand that nurses respond to alarms with different levels of urgency. If a procedure is taking longer than expected, the family needs explanations so they don’t think a complication has developed. For instance, including Sarah in the care helps establish a trusting therapeutic relationship and allows opportunities for Sarah to share im- portant information she may have that is relevant to John’s care. Nurses anticipate a family’s concern and work to allay some of the usual family experiences with a hospitalization.

Family and persons with acute needs experience stress, uncertainty, and suffering during hospitalization (Van Horn & Kautz, 2007) and family members are often excluded from the care, creating additional distress (Hardin, 2012; Vandall-Walker & Clark, 2011). Reflect on this case from Sarah’s point of view. Sarah had information that could be useful to the health care team. The separation during the admission caused some additional distress. Sarah was excluded. She might think the nurse uncaring and this decreases trust. The nurse missed an opportunity to develop a connecting relationship with this family by not providing introductions. The emergency department nurse failed to acknowledge Sarah’s anxiety about John’s condition. The unfamiliar setting and uncertainty about what was happening left many unanswered questions. This nurse could provide support by explaining what would happen and orienting them to the environment. Waiting for information with no updates increased Sarah’s stress and limited her ability to make plans for her children’s needs.

The nurse in the medical-surgical unit appears sensitive to family needs possibly because she is familiar with the evidence that suggests nurses can support families, assist them with stress, reduce uncertainty, and soften suffering experiences (Chesla, 2010; Davidson,

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2009; Davidson et al., 2012; Eggenberger & Nelms, 2007; Hardin, 2012; Leahey & Svavarsdottir, 2009; Mitchell, Cahboyer, Burmeister, & Foster, 2009; Svavarsdottir et al., 2012; Wright, 2008). Individual-nurse-family interactions during acute care build connect- ing relationships and provide critical interventions that influence individual health and family unit (Bell, 2011; Svavarsdottir et al., 2012). Figure 10.1 depicts relationships among family needs, nursing actions, and care outcomes.

Case Study Phase III: Family Assessment and Communication

The nurse on the medical-surgical unit asks if Sarah and John would assist her in col- lecting information about the family. The nurse gathers the family together to collect family assessment data. The nurse generates a genogram, ecomap, attachment diagram, and circular communication pattern diagram to collect family assessment data about family illnesses, member relationships, and family communication patterns (Wright & Leahey, 2013). The nurse then moves to therapeutic questioning about primary concerns at this time. The nurse uses questions to collect family information: Tell me about the most difficult aspect of this illness for your family? What would be the most useful in- formation for your family at this time? Tell me about concerns for your family? (Wright & Leahey, 2013). After the meeting, the nurse documents key information that is acces- sible to those caring for John and Sarah. In the acute care setting the nurse may use a brief assessment to document essential data of family structure and interactions and then further assess over time. (Université de Montreal, 2000).

Case Application: Family Assessment, Communication, and Documentation

Sarah is relieved that all contact and pertinent information is available to the health care team. Some units in the acute care setting may document family information on white boards, charts, or the electronic health record so that it is available for other health care providers. With multiple care providers and potential transfer to different care units, it is imperative for nurses not only to conduct family assessments early during admission, but also to document changes that occur. Assessment is an initial step to gain insight about unique family needs. As time goes by, note any other important information about family life, needs, and roles. Information documented about family care decisions is important and can promote coordinated care. Sharing information among the variety of caregivers over a 24-hour period or with the new staff when transfers to different units occur helps family members manage the stress of a transfer.

In the acute care setting family assessment that begins with a family meeting may provide the nurses with the opportunity to develop nurse-family relationships and gather necessary information to provide quality family-focused care. When family meetings are conducted on a consistent basis, the information obtained during the family meeting may provide the nurse and other health care providers with data to understand the family experience, support family coping, and guide family decision making through various acute care tran- sitions (Khalaila, 2014; Nelms & Eggenberger, 2010). Family assessment was previously addressed in Chapter 5 of this textbook and family meetings to facilitate family assessment are explored further in Chapter 14.

Family-focused care can occur in short time periods; even brief moments can offer valued communication (Martinez et al., 2007). Thinking family means introducing yourself as

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new persons arrive in a room. Examples could include: “Hello. My name is Julie Jones and I am caring for John today. Would you share your name and relationship to John? I will check his blood pressure, then we can talk about what is going on.” Recognize and commend the family for positive actions. An approach could be “You are doing a good job being here for your husband during this time.” Praise can help family endure some strains and reinforces positive actions. Family members need to be encouraged. The 15-minute family interview (Wright & Leahey, 2009) and brief therapeutic conversations have been implemented in a variety of hospital units with positive outcomes (Benzein & Saveman, 2008; Martinez et al., 2007; Svavarsdottir & Jonsdottir, 2011; Svavarsdottir et al., 2012).

Open-ended questions facilitate explanations, facts, thoughts, and emotions. The Calgary Family Intervention Model describes linear intervention questions that inform a nurse about what members perceive as needs (Wright & Leahey, 2013). This model also includes circular questions in which a cycle of dialogue is used to facilitate change. These questions can focus on relationships and beliefs or uncover explanations. A circular question could be aimed at explanation, such as, “What has happened to your family since this illness?” Questions often focus on beliefs about the acute illness such as prognosis and treatment plans, spirituality, control, and family member roles (Wright & Bell, 2009). Nurses can ask: “Who in your family is most affected by this illness? How is this hospitalization affecting your family?”

An individual-nurse-family dialogue is purposeful and directs attention to concerns with the intent of alleviating suffering (Tapp, 2001). Many will readily share their story if given the chance. Saying “Tell me your biggest concern since you have been here” will help a nurse address the family’s distress. When families believe they are heard, they will likely see the nurse as genuinely concerned. Every family interaction is an opportunity for the nurse to learn and address unique needs. Box 10.5 describes a practice situation where a nurse ad- dresses the concerns of the individual with the illness and the family member. Use the ques- tions to reflect on nurse-family-individual communication that is needed to ease distress.

Case Study Phase IV: Stress, Uncertainty, and Suffering in Deteriorating Condition

The next morning after Mr. May’s admission, the nurse completes the initial assessment and greets John. The nurse observes John is dyspneic, has a heart rate of 120 beats per minute,

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FIGURE 10-1 Relationships among family needs, nursing actions, and care outcomes.

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and a temperature of 102.6°F. Bilateral adventitious sounds in the lungs are heard. The physician is notified and orders received. An electrocardiogram shows ventricular tachycar- dia. Blood gases are drawn. Results indicate hypoxia, hypercarbia, and acidosis. John’s symptoms show increasing respiratory failure. The physician orders John’s immediate trans- fer to the intensive care unit (ICU).

John’s nurse contacts Sarah to tell of John’s transfer and describes the reasons. Sarah had gone home late last night to be with her children. She had arranged to take the next few days off from work and made transportation arrangements for the children. She had explained to them what was happening and tried to answer questions. They are frightened and wanted to stay home from school and go to the hospital with her. She insisted that they needed to keep up with their classes. Adam and Amanda think they should be at the hospital, but respect their mother’s request. Sarah called John’s family last night and told them he was hospitalized.

After the phone call from the hospital staff, Sarah immediately left home. She arrives at the ICU as the nurses are completing John’s transfer assessment. A nurse asks her to sit in the waiting room until they are finished. Sarah’s fear escalates. She thinks: What are they doing? Why has he been transferred to the ICU? This must mean his condition is really bad. Why didn’t that nurse tell me anything? Sarah lets herself think the painful thought, does this mean he could die? Maybe I should have let Adam and Amanda stay home today.

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BOX 10-5

Family Circle

Maria Sanchez is a 78-year-old Hispanic woman hospitalized for hematuria of unknown origin. A diagnostic work-up is being completed. This is the first time Maria has been hospitalized, and her adult daughter has been at her bedside since she was admitted. For the last 24 hours Maria has become increasingly withdrawn and has been lying curled up in bed. Tom, Maria’s nurse, is thinking that she may be withdrawn because her arthritis is worse as she has not been taking her home remedy medications. Tom has been a nurse for more than 10 years and is viewed as competent by others. Tom notices that Maria has not changed position all morning and her lunch tray has not been touched. Tom figures that Maria is not able to fully comprehend the pain scale, because whenever he has asked her, she has consistently rated her pain at a 2 on the 0-to-10 scale. Maria has orders for ibuprofen and morphine when needed. Tom decides that he should give Maria the morphine to help get the pain under control so she can get up and moving. Maria’s daughter, Josephine, insists that her mother not take the morphine. Tom is thinking the daughter will eventually see the benefits of the morphine when her mother is feeling better and able to move around. He wants to give Maria the medicine.

Practice Q uestions:

● What should Tom do in this situation? ● If the Maria only reports a 2 on the pain scale, should Tom assume that something else is

going on? ● Should Tom give the ibuprofen first? ● Is it possible that Maria does not really understand the question or what is meant by a pain

scale?

Family-Focused Practice Q uestions:

● Josephine, does your mother speak and understand English? ● Maria, would it be okay if I had one of our staff interpreters help me better understand what is

happening with your pain? ● Maria and Josephine, I would like to get to know you better. Can you tell me more about what

happened at home before you came to the hospital? ● Maria and Josephine, I am wondering what questions you would like me to answer.

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She thinks, I need to call John’s mother. I promised to let her know if things changed. Sarah had told John’s older brother and younger sister about the hospitalization. She called her family as well. She had reassured everyone that things were under control and that they need not come because they live far away and have complicated lives. Now she worries that she did the wrong thing. Sarah did not want to upset them, but what if something is terribly wrong?

Although it seemed like hours, only 10 minutes passed before a nurse greeted Sarah: “My name is Julie. I am the registered nurse caring for your husband today. I will be with you and him. I want to explain what is happening and answer questions. This must be difficult for you.” The nurse asks Sarah to come with her to John’s room. She explains the equipment being used to monitor John. She points to a chair where Sarah can sit near her husband. The nurse explains that the doctor will be in later this morning and that a specialist has also been called to consult.

The nurse begins to develop a relationship with Sarah. She acknowledges the stress linked with this experience. The nurse explains that the ICU staff is here to provide the care needed. Sarah shares concerns about their children, “What shall I tell our children? Maybe I should notify John’s mother and his family.” Sarah wonders who else she needs to call. The nurse says, “This must be frightening.” The nurse asks other questions about her family and children, inquires about her work, and asks if she has other questions. Together they develop a plan related to communicating with the children and family members. The nurse tells Sarah to ask questions when things are unclear.

Case Application: Stress, Uncertainty, and Suffering With Deteriorating Condition

A change in the condition of an ill family member can magnify the distress and suffering of the family as they face daunting threats of an illness and environment with the unknowns and uncertainty of future outcomes. Nurses who reach out, include, welcome, comfort, and advocate are supportive, but those who fail to acknowledge, ex- clude, and limit their interactions add to family distress (Nelms & Eggenberger, 2010; Vandall-Walker & Clark, 2011). Family stress and uncertainty can be diminished through early and ongoing communication, supportive interactions, and collaborative partnerships (McMillan & Small, 2007). Nurses play crucial roles in helping a family endure difficult acute experiences and maintain a healthy family (Appleyard et al. 2000; Van Horn & Kautz, 2007).

Case Study Phase V: Family Presence During a Serious Illness

In the next 36 hours, John’s condition continues to deteriorate. Sarah has notified their ex- tended family and suggested that they should come. Sarah’s mother has arrived and is stay- ing at their home to help care for the children. John’s older brother is bringing his mother and they will arrive soon. John’s younger sister, a single parent, has decided she cannot leave her young children or job. This sister likes to be in charge and control things. She calls the ICU desk often to check on John’s condition and gets angry when they refuse to give information. She texts Sarah continually and wants to know what is happening. Sarah is guarded, watchful, and trying to protect John. Sarah’s suffering is evident to the ICU nursing staff. Sarah calls her mother to ask if she would take the car, pick up Adam and Amanda from school, and drive them to the hospital.

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Adam and Amanda were scared when their grandmother arrived at school. Adam asked many questions on the ride to the hospital. Amanda sat silently and looked out the window. The silence was heavy. When they arrive, John’s nurse takes a few minutes to speak with them before they go to his room. They barely hear what she says because of their anxiety. Finally, the children are allowed to see their father, but he barely acknowledges their pres- ence. Adam and Amanda spend about 5 minutes in the ICU room with their father and mother. The nurse explains some things about what is happening. Tears are streaming down Sarah’s cheeks. Adam is brave and asks, “Will my father be okay?’ The nurse re- sponds, “We are doing everything we can to help him. He needs to rest and give things time to work.” The nurse asks them if they have questions and tries to answer simply. She explains equipment to the children and helps them speak with their father. They return to the waiting area to sit with their grandmother and wait.

Sarah says, “I need to stay strong for them. They need me.” Sarah says to the nurses, “He seems to be getting worse, no matter what you do. I don’t know how much more we can take. I am not sure what to say when the children ask me if he will die.” John’s nurse realizes that Sarah is struggling with fears and asking difficult questions without answers. The nurse listens intently and tries to answer questions truthfully. The nurse uses caring and clinical judgments to communicate with Sarah.

John’s family and Sarah’s siblings arrive at the hospital and gather in the waiting room. Different family members are at John’s bedside around the clock. John’s brother is troubled by his sister as she is texting him with questions. John’s mother is overheard saying, “We need to transfer him to a different hospital because they are not doing enough here.” John’s older brother states, “John would not want all of these machines.” The extended family is large and takes up much of the space in the waiting area. Tensions are rising and some members seem at odds with others. More than 24 hours pass.

Some nurses welcome the family’s vigilance but others are troubled by their presence. Nurses’ statements include, “John’s family is always here. I wonder how we can offer more support. I am going to ask them to join me for a family conference to discuss what is hap- pening.” One nurse says, “John’s family just needs to go home and let us take care of him. They always want to be in the room when we have things to do. Go home, get some rest, and leave the caregiving to us.” Nurses who are not family focused often perceive the family as a barrier to care, rather than the partner.

John’s condition deteriorates to respiratory failure; the rapid response team is called, and eventually an intubation is required. One nurse tries to move Sarah and one of her siblings out of the ICU and into the waiting room despite their protests. Sarah states, “We must be here! We want John to know we are here!” A nurse responsible for the family dur- ing the procedure says, “I understand. You should be here if you think that is important.” She shows them a place to stand near the bedside and explains what is oc- curring as cardiopulmonary resuscitation begins.

John’s children have been talking with their grandmother in the waiting room. They make their way back into the ICU while the response team is in action. Amanda begins to cry and Adam stands at the doorway silently. One nurse asks the children to leave. Another nurse, the one that had spoken with them earlier, puts her arm around Amanda and talks to them. She explains what is happening. This nurse helps Sarah comfort her children and make a decision about their presence and observation of what is happening.

Case Application: Family Presence During Invasive Procedures

Families want to be vigilant and support their ill member, especially in the acute care setting (Dudley & Carr, 2004; Vandall-Walker & Clark, 2011). Being together as a family often

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decreases distress of the family and supports the ill member of the family. Nurses who think family support the family’s presence during invasive intubation procedure and explain what they observe. A family-focused care setting has policies to support family presence that are beneficial to families (Abraham & Moretz, 2012; Doolin, Quinn, Bryant, Lyons, & Kleinpell, 2011). Current research indicates that most families want to be present during treatments, invasive procedures, and cardiopulmonary resuscitation (CPR) (Davidson et al., 2007). Box 10.6 provides selected evidence related to family presence. Additional information about the importance of family presence is provided in Chapter 9.

Many family members want the option to stay with their member during resuscitation efforts, and current practice has turned to family inclusion (American Association of Critical Care Nurses, 2010; Emergency Nurses Association, 2009, 2010). Family members present during cardiopulmonary resuscitation report that they would do so again because it helps remove doubts and eases distress (American Association of Critical Care Nurses,

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BOX 10-6

Perceived Benefits and Barriers of Family Presence

Perceived Benefits of Family Presence From the Family Perspective

● Reduces fear and anxiety among family members. ● Dispels dread of the unknown and guilt with not being present at the bedside. ● Enhances feelings of usefulness (e.g., providing information to health care team, offering

support and comfort to patient). ● Supports the family feelings of needing to protect and being connected to their family member. ● Fosters the appreciation for the efforts of the health care team to ensure “ everything possible”

is being done and allays some doubts. ● Allows opportunity to speak with patient and possibly say thoughts and good-byes.

Perceived Barriers to Family Presence From Health Care Providers’ Perspective

● Fears that distraught family members may distract the staff from providing care needed by the ill patient.

● Concerns that family members’ distress would hamper their performance and increase own emotional response.

● Increased risk of litigation by family members. ● Lack of space in the room and lack of staff to provide support for family members. ● Rights of confidentiality and privacy of patient violated. ● Experience may be too traumatic for family and have lasting ill effects.

Perceived Benefits of Family Presence From Health Care Providers’ Perspective

● Reminds staff to care for a patient with privacy, dignity, and respect. ● Prompts staff to recall the patient is a person who is a member of a family. ● Encourages professional behavior and holistic care to a patient during a crisis situation. ● Allows a family member to recognize staff’s efforts to care for the patient and advocate for the

patient. ● Offers the nurse an opportunity to educate the family, support the family, and reaffirm the role

of the family as a support network.

Source: Adapted from American Association of Critical Care Nurses (2010). AACN Practice Alert: Family presence during resuscitation and invasive procedures. Retrieved May 17, 2012 from http://www.aacn.org/WD/Practice/ Docs/PracticeAlerts/Family% 20Presence% 2004-2010% 20final.pdf; Duran, C. R., Oman, K. S., Abel, J. J., Koziel, V. M., & Szymanski, D. (2007). Attitudes toward and beliefs about family presence: A survey of healthcare providers, patients’ families, and patients. American J ournal of Critical Care, 1 6 (3), 270–282; Halm, M. (2005). Family presence during resuscitation: A critical review of the literature. American J ournal of Critical Care, 1 4 (6), 494–512.

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2010; Duran, Oman, Jordan, Koziel, & Szymanski, 2007; Meyers, Eichhorn, Guzzetta, Clark, & Taliaferro, 2000). Encouraging family presence can increase family satisfaction with the health care system with this practice (American Association of Critical Care Nurses, 2011; Davidson et al., 2007; Roberti & Fitzpatrick, 2010). Families and health professionals report the benefit of family presence. Yet some professionals continue to be concerned that family presence is too anxiety-provoking for families; research has not supported these per- ceptions (Duran et al., 2007; Emergency Nurses Association, 2010; Halm, 2005). Research suggests that acute care policies often do not support the evidence (American Association of Critical Care Nurses, 2011; Emergency Nurses Association, 2009). A nurse who thinks family understands practice guidelines related to family member presence and supports family visitation and presence and works to develop policies that advocate for families (American Association of Critical Care Nurses, 2011; Davidson et al., 2007; Emergency Nurses Association, 2009).

Research findings suggest children and families need to be together during stress and crises, and recommendations suggest that nurses should include them in acute care of adults (Clarke & Harrison, 2001; Kean, 2010). Helping parents decide what information to share and in- cluding them during acute care is important (Kean, 2010; Knutsson, Samuelsson, Hellstrom, & Berghbom, 2008). Yet, resources for children visiting adults during acute care and critical illness are limited. Nurses who think family advocate for children and discuss the best ways to include them in care. A family nurse prepares a child for the acute setting, communicates in a developmentally appropriate way, and provides a child-friendly environment.

Case Study Phase VI: Information Exchange and Family Conflicts

John’s condition remains unstable. The family has difficulties communicating about future plans. Tension builds as members share their beliefs. Sarah thinks she understands her hus- band’s wishes about quality of life and use of extraordinary measures. She has spoken with the physician and has a grasp of the current state of John’s condition and the potential out- comes. John’s brother says, “He said he never wanted to live on machines.” With further discussion the conflict increases and soon the family sits in separate parts of the waiting room in silence. Sarah comments to the nurse, “We have always been a strong family that could talk about everything. I just don’t understand what has happened to us. We seem to be in such different places.”

The nurse decides to work toward arranging a family meeting in which the family can explore their thinking and move toward decisions. She wants to encourage understanding, identify strengths to commend, and find ways to build consensus. The nurse says to Sarah, “A family meeting can help share thinking and beliefs. It is a way to provide additional in- formation to the whole family and offer support to move forward. I would be there to help your family. Would this be useful for you and your family at this time?”

Case Application: Family Decision Making

Numerous decisions need to be made during an illness and many require family involvement. Decision making may focus on issues related to treatment choices; deciding what, where, and when to obtain health services; and decisions about withdrawal of life support and organ donation (Jacobowski, Girard, Mulder, & Wesley, 2010). Even when individuals discuss pref- erences or provide written documentation about their choices, they often need support and guidance to navigate the distresses associated with the decision (Luce & White, 2007;

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Wiegand, 2008). Nurses assist by providing complex information in simple terms, using drawings to explain and clarifying goals. Decision points occur throughout an illness with many opportunities for nurses to guide and partner with family members (Bakitas, Kryworuchko, Matlock, & Volandes, 2011; McBride Robichaux & Clark, 2006) (Box 10.7).

Nurses who think family can assist at various decision points by providing information and clarifying possible outcomes of a selected path, or they can discuss what could occur if no treatment is obtained. Yet, beliefs of family members related to decisions and how to care for their ill family member may differ. Usual communication processes may be dis- rupted and open expression of emotions in caring ways may be challenging for some family members. Nurses are often present during these difficult times and family-focused nurses remain with the family to help communication continue and be sure all voices are heard (Warnock et al., 2010). Best practice models include informed choices, shared decision making, support for decisions, and dialogue (Bakitas et al., 2011).

Yet, in the acute care setting some myths and misunderstandings about the Health In- surance Portability and Accountability Act (HIPAA) exist and hamper nurse-family com- munication. In 1996, HIPAA regulations were implemented to protect personal health information, ensure that individuals had access to health insurance, and streamline some administration processes. HIPAA was never intended to dictate policies that hamper family assessment, prevent family inclusion, or withhold necessary information from family mem- bers. Individuals can give permission for information sharing. If the patient is incapacitated, a health care provider may share information with family, friends, or others as long as pro- fessional judgment is used to determine what is in the best interest of the person (Office of Civil Rights, Department of Health and Human Services, 2012).

Case Study Phase VII: Transfers in Acute Care Settings and Discharge to Home

After several days in the ICU, John is finally able to breathe on this own. The weaning process is frightening, but the nurse provides continuous information, shares specific plans,

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BOX 10-7

Families’ Needs Related to Decision Mak ing in Acute Care

Decision making can be a challenging task during an inpatient admission for an acute care concern. Here are some features of nursing care that family members would likely find helpful when a member has an acute condition needing attention.

● Families need a nurse who develops trusted relationships with them so they can partner in decision making.

● Families want a nurse who guides them in supporting the family member with an illness and helping them make decisions about their role.

● Families value a nurse advocating for them throughout hospitalization. ● Families need a nurse to provide information that is easy to understand on a consistent basis. ● Families want a nurse who helps them balance the needs of multiple family members. ● Families need health care providers to give them time to make decisions. ● Families appreciate guidance at various decision points. ● Families need a nurse who helps them plan for transitions. ● Families value guidance in creating the opportunities for shared decision making.

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and interprets information. The nurse tells Sarah and John, “Our plans are to adjust the settings on the machine and watch how the changes are tolerated. I will stay close to watch the machinery and John. Let me know if you question anything you see or hear.” The nurse continually reassures them that John is improving. She gives specific information and ex- plains steps in the progression of care. The nurse supports Sarah’s decision to remain vig- ilant and stay near her husband. Each time John is assessed, the nurse shares the meaning of what is found with Sarah. When Amanda and Adam visit again with Sarah’s mother, the nurse speaks to them, answers questions, and explains in words they understand.

With time, John is transferred back to the medical floor. He expresses his sense of relief with improvement, “I am so glad to be better, maybe I can get some sleep.” Sarah is anxious about the transfer. She thinks, Will these nurses watch John closely? I trusted those nurses in the ICU; they were so helpful. Now I have to get acquainted with these new nurses. They do not seem as visible as those in ICU. No one has spoken to me yet and the transfer happened an hour ago.

The nurses on the medical floor are prepared for Sarah’s anxiety with the transfer. In a short time, the nurse introduces herself and explains plans. She says, “I am the nurse caring for John. Sometimes family members worry what will happen when their loved one moves out of the ICU into a unit like this. What questions do you have that I can answer right now?” The nurse reassures Sarah, “I plan to keep my eyes on John, check his progress often, and keep you informed. Let me be certain we have your family contact information. If it is okay, I would like to briefly review the genogram we have in John’s records to be sure that I have a good understanding of your family.”

As days go by, John’s condition continues to improve and he is soon ready for discharge. Before that time, nurses have spent time with John and Sarah reviewing purposes of med- ications and side effects. They have explained about asthma risks and spoken about pre- vention. They spoke about home environments and irritants that trigger asthma. Tobacco cessation was explained and information about local resources provided. Also, the impor- tance of balancing work, family roles, and health was discussed. The concerns of the chil- dren have been explored.

Sarah says, “We are happy to go home. Nurses have been so good about teaching us, answering questions, and taking care of our needs.” John’s home plan calls for several days of rest and then work from home for 2 weeks before returning to his office. Sarah says, “I am glad we have clear instructions written so we understand. We know what to do at home.” The nurse talks with Sarah about balancing personal care needs with those of the family. Sarah replies, “We will be so glad to have John home. We know what to watch for and how to create some new routines for healthier lives.”

Case Application: Preparing for Transfers Within and Discharge From Acute Care Setting

Transfer and discharge planning occur throughout an acute care stay. As transfers between units occur, the family nurse addresses the stress that can occur with transfers and need for coordinated care. Communication with health care providers about family needs and past experiences is important. In the May family, nurses collaborated with others to ensure that discussions and issues were not overlooked. As the discharge was planned, needs of the entire family were considered. As Sarah drove John home, they and the children dis- cussed their experience and their feelings of relief that John was returning to health as well as some of their fears and concerns. The nurse had prepared them for stress and uncertainty of returning to roles and responsibilities. The May family also discussed the ways they had been treated during their acute care experiences.

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Delivery of Family-Focused Care: Environmental Factors in Acute Care Setting

Economic and social policies influence ways nursing care is delivered. The public is more selective about where to receive care, but health insurance plans, preferred providers, and cost of co-payments drive some decisions. People expect high-quality nursing care (Box 10.8). Health care consumers make decisions based on published outcomes, satis- faction scores, and provider rankings. The Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) Survey is one such publication. This survey is man- dated by the Centers for Medicare and Medicaid Services (CMS) and hospital reimburse- ment is linked to the HCAHPS scores (CMS.gov). Publicly reported data guides individuals concerning where to seek care.

Quality measures are important ways to evaluate nursing actions. The quality of nurse- patient communication and satisfaction with health care experiences are areas measured by acute care institutions. The acute care environment is a complex system in which family care can thrive or barriers can prevent care delivery (Table 10.5). Take time to consider environmental factors that can be viewed as supportive and barriers to individuals with an acute illness and their families.

Moving Family-Focused Care in Acute Care Settings Forward

Individual-nurse-family collaborations are used to manage the barriers and obstacles that prevent safe quality care. Collaborations are grounded in trusting relationships that ac- knowledge, affirm, and support family units during acute care. Nurses who think family work with supervisors and administrators to identify best ways to satisfy family needs, lead family meetings, and conduct bedside reports, family rounding, and family interven- tions. Several current initiatives in nursing practice aim to move family care forward.

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BOX 10-8

Elements of a Hospitaliz ation That Improve Family Care

The Institute for Healthcare Improvement (2011) recently published a White Paper compiling evidence to advance recommendations that are most apt to improve family experiences during hospitalization and increase patient response scores to the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey question related to willingness to recommend the hospital to others. These recommendations are identified here:

● Leadership with a focus on the family ● Engagement of staff and providers in the values of family-focused care ● Respectful partnerships with patients and family members ● Access to care without long and unreasonable delay ● Coordinated evidence-based care shared by all team members including patient

and family

Source: Adapted from Balik, B., Conway, J., Z ipperer, L., & Watson, J. (2011). Achieving an ex ceptional patient and family ex perience of inpatient hospital care. IHI Innovation Series White Paper. Cambridge, MA: Institute for Healthcare Improvement. Retrieved from www.IHI.org

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TABLE 10 -5 Supportive Environmental Factors and Barriers to Family -Focused Care

ENVIRONMENTAL FACTORS TO SUPPORT FAMILY-FOCUSED CARE

Leadership, organization, and culture are focused on family care that is publicly verifiable and rewarded.

Family is included in measurement, learning, and improvement in practice with family feedback as a routine practice.

Family members are treated as partners in care and the information they offer is perceived as useful and important for planning safe and quality care.

Staff is committed to the shared values of family- focused care.

Staff experiences in working with families increase their personal satisfaction levels.

Teamwork is essential with staff being recruited for the values they display regarding the mission of family-focused care.

All care situations are anchored in respectful partnerships with family members.

Care is based on a customized and interdisciplinary care plan with family members consistently educated.

Physical environment promotes healing (9 p.m. lights are dimmed, door to patient room is closed, phones and pagers are on vibrate, use of ear plugs, portable white noise machines for room, face masks, blinds block out light). Manage noise in environment as much as possible. However, family’s presence is supported.

Physical environment meets the nutritional, sleep, exercise, and routine needs of family members.

Policies support engagement by family members (i.e., family visiting policies enable family to spend the night in comfort and include children as visitors).

Continual information exchange with the family that is understandable and targeted toward educational level of family members.

Honest and open approach to providing information that is truthful.

Ongoing and consistent family meetings to dialogue, explore, and address concerns.

Family members are able to retain family relationships and remain close to family members by participating in care routines comfortable for them and the hospitalized individual.

ENVIRONMENTAL BARRIERS TO FAMILY- FOCUSED CARE

Nurses with heavy workloads and high stress levels may convey their stress and create inabilities to partner with families (Å stedt-K urki, Paavilainen, Tammentie, & Paunonen-Ilmonen, 2001).

Families are often largely unheard and unrecognized.

Family members are viewed as visitors.

Staff is not educated or prepared to provide or value family-focused care.

Staff members lack work satisfaction with families.

Cooperation and equality among team members are inconsistent related to family care.

Limited appreciation or understanding of family experience with a hospitalization.

Limited documentation of family involvement in the electronic health record or other clinical documentation systems used.

The architectural hospital design is not conducive to family participation in care; stress of the noise or lighting (i.e., window blinds not closed, overhead lights on, monitoring equipment screens face patient, door remains open to hallway).

Visiting policies are strictly adhered to and family members experience discomfort when they are “ outside the policy” (e.g., staying after hours).

Information is not tailored to the health literacy needs of family members and is inconsistently provided by clinicians.

Limited information exchanges and family meetings only during times of crisis.

Staff members fail to identify what parts of patient care family members feel comfortable providing, or wish to provide, and what parts they prefer the staff to complete.

C o n t in u e d

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280 CHAPTER 10 ● Family-Focused Care in Acute Illness

TABLE 10 -5 Supportive Environmental Factors and Barriers to Family -Focused Care— cont’ d

ENVIRONMENTAL FACTORS TO SUPPORT FAMILY-FOCUSED CARE

Family members share their priorities and usual routines to assist the health care team in focusing on the family’s perceptions of priorities of care rather than only those of the health care team.

Family members need to be comfortable in the hospital environment to reduce distress and suffering (e.g., massage, music, aromatherapy, art therapy, pet therapy, gardens and soothing sound of water, nutritional support).

Q uestions by family members are encouraged and answered regularly with information given in clear language or with use of drawing pictures to illustrate.

Family decisions are honored and families participate in decision making to the level they feel comfortable.

Family members feel cared for, respected, welcome, and know that help will be given when it is needed.

Family advisory councils actively participate with hospital administrators and nursing staff to improve family care experiences.

Innovative programs are used to educate staff about how to deliver family-focused care.

Peer recognition programs that honor providers who embrace the values of family-focused care (selected by peers and by family members in follow-up surveys).

The nursing team uses hourly rounding to ensure that needs for each patient and family are met.

Family care rounding is regularly conducted by physicians/interdisciplinary team and nurses at prescheduled times so family members can be included in decision making about care management.

Communication mnemonics used for all staff to deliver consistent messages and be proactive in communication approaches (e.g., AIDET: acknowledge, introduce, duration, explain, and thank).

Regular and consistent family meetings bring family members together with nursing staff to discuss experiences.

ENVIRONMENTAL BARRIERS TO FAMILY- FOCUSED CARE

Nurses disregard family routines, such as when someone likes to take a shower or if a family member always cares for someone at home.

Hospital policy does not allow for complementary therapy services nor does it foster innovative and cost-effective approaches to supporting family comfort and usual household routines while in the hospital.

Family questions go unanswered unless family clearly seeks information.

Reluctance of health care providers to engage families in decision making.

Family members feel anxious because they feel largely ignored.

Hospital staff and nurses make decisions without consideration of the family experience during hospitalization in the acute care settings.

Programs assume that nurses already know about family care and fail to offer continuing education in these areas.

No recognition is given to those who address family care needs.

Hourly rounding is conducted by staff without training about ways to interact with family members.

Family care or rounding policies are not in place and family members are not included in care management or decision-making activities.

Communication format not formalized within the setting, leaving opportunity for inadequate and inconsistent messages.

Family information needs are not clearly met through structured communication programs and family needs are inconsistently addressed during hospitalization.

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Family Policies and V isitation

Policies about family visitation in acute care settings have been changing in recent years. Some hospitals are viewing families as a respected part of the health care team, rather than merely seeing them as visitors (Leape et al., 2009). This changed perspective is based on research findings that indicate that when families’ partnership in care management of acute illness is improved, continuity of care is enhanced, and hospital readmissions are reduced (Bauer et al., 2009). These mutually important outcomes resulted in improved satisfaction and reduced medical errors (Wiggins, 2008). Unrestricted family visitation increases patient comfort and satisfaction for the hospitalized person, and family members report increased satisfaction, decreased anxiety and uncertainty, improved communication, and better patient/family teaching (American Association of Critical Care Nurses, 2011; Vandall- Walker & Clark, 2011).

The Institute for Patient- and Family-Centered Care has formulated a set of guidelines to change hospital visiting policies and practices. The core concepts of these guidelines are respect and dignity, information sharing, participation, and collaboration (Johnson et al., 2008). However, nurses continue to report inconsistent visitation policies, and hospital units continue to restrict the patient’s access to designated support persons during acute care experiences, especially serious ones (American Association of Critical Care Nurses, 2010; Davidson et al., 2007; Vandall-Walker & Clark, 2011). Research evidence supports the idea that family and other care partners should be allowed to visit 24 hours a day, even during serious illness.

Family Presence During Invasive Procedures and Cardiopulmonary Resuscitation

Nurses identify needs for policies, procedures, and educational programs that support family-focused care during crisis events such as cardiopulmonary resuscitation and in- vasive procedures (Halm, 2005). Although many nursing organizations have taken bold moves to support family presence, more actions are still needed to be sure practice is based on evidence. In 1993, the Emergency Nurses Association (ENA) adopted a reso- lution to support family presence during invasive procedures and resuscitation. In 1994, their first position statement was completed and a resource was developed to address family presence (ENA, 2009, 2010). Ideas about family presence have also been included in the American Heart Association (2005) guidelines for cardiopulmonary resuscitation. In 2010, the American Association of Critical Care Nurses (2010, 2011) published a practice alert that identifies the increasing evidence for the practice of family presence during resuscitation and invasive procedures. The vision of the National Hospice and Palliative Care Organization (2008) clearly focuses on including families and a position statement on palliative care is also directed toward standards of practice that meet individual and family needs.

Family Participation in Rounds and Change of Shift

Family participation in interdisciplinary rounds and bedside change-of-shift reports has gained momentum in recent years. Communication with families during pediatric and end- of-life care is a common nursing practice (Committee on Hospital Care, 2003). However, the routine incorporation of families into regular rounds and change-of-shift reports on all hospital units is only beginning. Nurses need education and practice sessions to make

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family participation in rounds and shift reports effective and feasible (Anderson & Mangino, 2006; Santiago, Lazar, Depeng, & Burns, 2014). When rounds with families are available, it is useful to inform families about them in verbal and written formats. Some early findings suggest bedside rounds increase satisfaction with communication (Anderson & Mangino, 2006; Rappaport, Ketterer, Nilforoshan, & Sharif, 2012). Family participa- tion offers times for bidirectional communication and clarification of information (Davidson et al., 2007; Rappaport et al., 2012). More research is needed to fully under- stand the benefits of family participation in rounds in different areas of acute care (Jacobowski et al., 2010) and the most meaningful ways to include family in rounds. Family rounds can be implemented through various processes such as those suggested in Box 10.9.

Family Support Groups

In 2001, the Committee on Early Childhood, Adoption, and Dependent Care of the American Academy of Pediatrics clearly highlighted the need for family support pro- grams. Recommendations included needs to consider family significance, recognize the family as part of the community, and enhance their strengths. Family support sessions in adult acute care settings have now expanded to areas such as palliative care (Henriksson, Benzein, Ternestedt, & Andershed, 2011), family caregivers in mental health (Chien, Chan, Morrissey, & Thompson, 2005), and chronic illness (Munn-Giddings & McVicar, 2006) where research has provided positive results. Support groups can improve dissem- ination of clear information, offer support, reduce burdens, and increase abilities to manage stress and have the potential to increase communication between health care providers and family members, reduce uncertainty and family concerns, and help family

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BOX 10-9

Processes to Include in Family Rounds

The following items are ideas to consider when planning to include family rounds in daily nursing practice:

● Staff members are provided with written handouts and educational practice sessions prior to implementation of family rounds.

● Family rounds structure includes interdisciplinary team at the bedside with a number of family members.

● Family rounds occur daily. ● Nurse explains the family rounds to the family in verbal and written formats. ● Nurse helps to bring the family to the bedside. ● Interpreters are available when needed. ● Core physicians and providers provide a summary of the family member’s care needs for the

family using understandable language. ● Nurse provides pertinent information to the family and health care team. ● Family has the opportunity to ask questions. ● Follow-up family meetings are offered to provide additional support, answer additional

questions, and encourage communication among family members.

Source: Adapted from Anderson, C. D., & Mangino, R. R. (2006). Nurse shift report: Who says you can’t talk in front of the patient? Nursing Administration Q uarterly, 3 0 (2), 112–122; Jacobowski, N. L., Girard, T. D., Mulder, J. A., & Wesley, E. (2010). Communication in critical care: Family rounds in the intensive care unit. American J ournal of Critical Care, 1 9 (5), 421–430; Rappaport, D. I., Ketterer, T. A., Nilforoshan, V., & Sharif, I. (2012). Family-centered rounds: Views of families, nurses, trainees, and attending physicians. Clinical Pediatrics, 5 1 (3), 260–266.

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members know that health professionals understand (Sabo et al., 1989; Sacco et al., 2009). Technology can also facilitate online education and support systems for families (Xu et al., 2014). Family satisfaction may increase with regular involvement in support groups during and following an acute care experience. Nurses who think family can participate with their employing agencies to determine what support groups are most useful.

Family Advisory Councils

Family advisory councils being implemented in a variety of organizations to strengthen family care may help solidify family-focused care in the acute care setting (Halm, Sabo, & Rudiger, 2006). These councils engage acute care staff in family partnerships and provide a mechanism to improve care processes that help nurses better understand family needs. Inviting families to be family faculty is another useful tactic. Family members have devel- oped presentations for acute care staff on such topics as improving communication, healing partnerships, and family experiences. Family narratives have been shown to influence care (Children’s Hospital of Philadelphia, 2013).

Family-Nurse Meetings

Bringing families together as a group to talk about their experiences, beliefs, and thinking has been a successful strategy that provides insight and comfort (Cypress, 2011; Robinson & Wright, 1995). Family meetings have potential to decrease uncertainty and suffering (Nelms & Eggenberger, 2010), increase satisfaction (Alvarez & Kirby, 2006), and facilitate decision making (Wingate & Wiegand, 2008). Families report that these meetings help them better understand the struggles of other family members and establish trusting rela- tionships critical to quality care (Appleyard et al., 2000; Lynn-McHale & Deatrick, 2000; Nelms & Eggenberger, 2010). Inviting conversation during family meetings acknowledges families’ needs and offers intentional therapeutic conversation (Wright & Leahey, 2013). Family meetings can help identify specific concerns, manage stress, and gain understand- ings. Conducting family meetings at regularly scheduled times, rather than only during cri- sis decision points, has potential to offer an intervention that families and providers value (Hannon, O’Reilly, Bennett, Breen, & Lawlor, 2012).

Family Documentation w ith Electronic Records

Implementation of the electronic health record (EHR) has provided the opportunity for point-of-care information and the ability to access information promptly. Inclusion of family information is often an “add-on” to the patient record and it is only included if the nurse providing care views it as important. When assessment of family is not addressed in the standardized flow sheet generated by the EHR, it is unlikely that the nurse will document the family as part of the patient’s care system, rendering the family invisible. The EHR has had great benefit for health care institutions’ need to collect data and record outcomes. On the other side, its implementation has been shown to have limited usefulness in improving acute care nurses’ clinical judgment or improving team communication (Kelley, Brandon, & Docherty, 2011).

The EHR is a tool that will remain, so it is essential that nurses incorporate family in- formation in the chart. Investigators suggest that the EHR does not make the individual- family-nurse relationship visible or promote provider communication about those issues that matter the most to families, such as their involvement in care (de Ruiter, 2007, 2011).

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Regardless, if the standardized forms do not address the family, nurses can still describe family-related care in narrative notes or documentation. When documentation includes family assessment data and aspects of the family and illness experience, then it is most likely that the concerns of a family will be addressed.

Strategies to ensure that care remains family focused include the use of family stories, short narratives in which family experience is shared. For example, a family may provide daily updates, concerns, or questions. A social narrative to share their story with care providers could be useful. This intervention could capture family preferences, experiences, and needs. Family information that is part of a record could be viewed by those providing care and used to facilitate decision making and planning care strategies.

A Family-Focused Environment

The design and aesthetics of acute care hospitals in the United States include innovative col- ors, attractive lighting, prerecorded music, waterfalls, and healing gardens for viewing or walking. Such features have been demonstrated to positively affect patient outcomes (Center for Health Design, 2012; Ulrich et al., 2008). Innovative nurse-designed hospital work environments that improve efficiency and safety and add features that mitigate stress for patients and families are becoming more commonplace (Kreitzer & Zborowsky, 2009). Often these settings include private, single-bed hospital rooms with space for family mem- bers. Private rooms are more conducive to family involvement in patient care. Education centers, chapels, meditation areas, spaces for family members to meet and remain overnight, laundry areas, small kitchenettes, and in-room dining could be considerations. Furniture arrangements in waiting areas can facilitate privacy and socializing for family groups. Efforts to address hospital designs should consider needs of families because health care structures and environments can affect quality of care, satisfaction, and efficacy (Center for Health Design, 2012; Trochelman et al., 2012).

Chapter Summary

Whether it is a hospitalized child, adult, or older adult, each family presents with needs, strengths, and challenges that require attention and care during a distressing experience that affects the entire family. The stress and uncertainty of illness influence the entire fam- ily. Communication, roles, and the disruption of usual routines add to the distress of acute illness. Even if a family is not physically present, family members are important to the in- dividual’s health care outcomes. Nurses have pivotal roles in communicating with and com- forting family, advocating for decision-making processes, and reducing family suffering in acute illness. Despite the complex and hurried demands of acute care settings, family nurses connect with, advocate for, and respect all; they individualize care and partner with the family so they can cope with demands and support their ill family member. Nurses who think family intentionally practice with a focus on the individual with the illness and their family.

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