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Family and Nurse Presence in Family- Focused Care Mary Bliesmer ● Pat Earle ● Sandra K. Eggenberger ● Norma Krumwiede ● Sonja J. Meiers

“ Nursing engages in a life-death journey, participates in birthing-living- playing-loving-dying as the very fabric of human existence. The moral and visionary compass for my journey comes not from the head but from the heart.” Jean Watson (2007, p. 173)

C H A P T E R 9

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

1. Differentiate between the ideas of nurse presence and family presence. 2. Describe the influence of nurse and family presence in various health and illness experiences. 3. Describe nursing actions that support family caring strategies and family presence. 4. Explain implications of being present with individuals, family members, and supportive others

during nursing care encounters.

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

● Adaptation ● Family advocates ● Family balancing ● Family connecting ● Family emotions ● Family inquiry ● Family integrity

● Family presence ● Family vigilance ● Hope ● Nurse presence ● Satisfaction ● Vulnerability

Introduction

Presence can be viewed as “the difference that nursing makes” in promoting the health of individuals and families (Newman, 2008, p. 21). Presence refers to a commitment to another, full engagement or openness, interconnectedness, valuing another’s dignity, and

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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 2022-06-02 03:07:17.

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recognizing what is important to another (Melnechenko, 2003; Parse, 1998). Human pres- ence can lessen the suffering and distress of another human through relationships and connections (Eggenberger & Nelms, 2007). Presence can also be considered from the per- spective of being a family member who is connected to others in the family unit. Individual and family bonds must be respected by nurses who acknowledge the value and potential of connectedness and its powerful influence on health and illness. During times of illness, crisis, and uncertainty, family connections are intensified. Nurses who think family realize that members often want to be together at poignant points in life. The presence of a sup- portive family member can minimize the distress of an illness situation and maximize the health and healing potential of nursing care.

In 1995, a Family Nursing Research Team (FNRT) was formed at the School of Nursing at Minnesota State University, Mankato, to investigate how family nursing care links with family health and illness experiences (Fig. 9.1). The team aimed to develop practice knowl- edge that would assist nurses in supporting and caring for families. Family investigations explored health and illness experiences. The team also collaborated in teaching nursing stu- dents about the importance of nurse presence in health or illness care and partnered with other faculty colleagues in academic and practice settings. This chapter shares findings from this team’s focused research program. Ways nurses can incorporate presence as they think family and provide family-focused nursing actions are described. The chapter includes an evolving case study that addresses the effects of a family tragedy. Examples of interpersonal relationships, availability, sensitivity, holism, intimacy, vulnerability, and adaptation are in- cluded. The case study highlights family presence and nurse presence as the family transitions through various health care settings. The ebb and flow of family strengths and the effects of nursing presence upon these transitions are described in the case study as Meloni’s mother tells her story.

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FIGURE 9 -1 Family Nursing Research Team, Minnesota State University, Mankato.

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The Concept of Presence

An early reference to presence defined this concept as “a mode of being fully available with a ‘gift of the self’” (Paterson & Zderad, 1976, p. 132). Presence involves an interpersonal process that embodies sensitivity and availability (Finfgeld-Connett, 2006) and contributes to deep and valued relationships (Chinn & Kramer, 2008; Melnechenko, 2003). Being pres- ent is a way of being with another person in a manner that recognizes that person’s values, meanings, and needs; it is an invitation to explore issues, concerns, and events as individuals choose (Parse, 1998). The power of presence becomes evident as one reflects on the importance of family presence in health and illness situations (Box 9.1).

Nurse Presence

The presence of a nurse is recognized as a nursing intervention or action, a relational skill of being with another, both physically and psychologically, during times of need (Dochterman & Bulechek, 2004; McMahon & Christopher, 2011). Nurse presence has been described as a key that opens the door to a relationship (Gardner, 1992), the essence of nursing (Koerner, 2007; Newman, 2008), and a way to embody caring during an illness experience (Finfgeld- Connett, 2008; Gardner, 1992; Snyder, Brandt, & Tseng, 2000). Nurse presence is a sincere human connection and a reciprocal exchange between nurses and persons (Hessel, 2009). During this interaction active listening, empathy, caring and compassion, attentiveness, inti- macy, therapeutic touch, spiritual exploration, and recognition take place (Hessel, 2009). The presence of a nurse provides a space for relationship building. A nurse’s accessibility may bring calm or peaceful feelings and even enable a spiritual or existential connection (Pavlish & Ceronsky, 2009).

Nurse presence is more than just treating physical needs; it means sharing the whole of human experience that can help others find meaning in their illness experience (Krumwiede et al., 2004; Meiers & Tomlinson, 2003; Nelms & Eggenberger, 2010). Research suggests that a nurse’s presence and relationship can help families endure the illness experience (Iseminger, Levitt, & Kirk, 2009; Snyder et al., 2000), ease their suffering (Wright & Bell, 2009; Wright & Leahey, 2013), and create a healing environment (Wright & Bell, 2009). Nurse presence is facilitated through multiple interactions, clinical expertise, and availabil- ity in a health event or situation (Godkin, 2001). Nurse support occurs during a meaningful and healing relationship that affirms persons and their family members (DeLashmutt & Rankin, 2006). Presence allows nurses to go where people are in their experience, to learn

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BOX 9-1

Describ ing the Concept of Presence

The term presence has been described in a number of ways and all of them can pertain to powerful ideas about nursing practice:

● Presence is an interpersonal process characterized by sensitivity, holism, intimacy, vulnerability, and adaptation to unique circumstances (Finfgeld-Connett, 2008).

● The consequences of presence influence its enactment in the future (Finfgeld-Connett, 2008). ● Presence has potential to enhance well-being for nurses and for individuals it can improve

emotional and physical well-being (Finfgeld-Connett, 2008). ● Presence is a way of being with or being there for people as they describe experiences and

meanings in the context of their lives (Gardner, 1985; Hessel, 2009).

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about their experience as they define and live it, and to work with persons as they choose the meaning of the situation (Melnechenko, 2003). Nurse presence is described as a call to share and hear another’s vulnerability and suffering (Miller & Douglas, 1998).

C ase Study— Part 1 : Family L if e B ef ore th e Tragedy

Our family, as told from a mother’s perspective, is a typical middle class family: neither rich nor poor. We raised our children in rural Minnesota, where I and three of the five chil- dren still live. We are a diverse family with varying personalities, interests, passions, likes and dislikes, values, professional interests, and love . . . most of the time, that is. While liv- ing the typical life, interesting things have happened along the way—big and small—and one tragic and totally shocking event occurred. Our family and the small community where we live were affected.

This story is about my daughter Meloni, the fourth of my five children. She is quiet, soft spoken, and very funny. She is a good mother, the kind all of us wish we could be, the type of mother who knows innately that children are more important than chores and more valuable than money. She spent many hours with her two sons, helping with their homework, building an igloo and then crawling in there with them, reading, snow- mobiling, attending school activities, and volunteering in their classrooms while working full time. Meloni and her husband Stephen had the kind of marriage that many of us wish for our daughters and sons. Stephen was handsome, hardworking, a standout hus- band and father. He cared for his family with love and respect. He came from a close family with two girls and four boys. The family was well known and respected in their community.

C ase Study— Part 2 : Tragedy and th e E ngagement of N urses

On a winter Friday evening, Stephen and his 11-year-old son Brad were attending the high school hockey game. Stephen headed home after taking Brad to a friend’s house to spend the night. Meanwhile, Meloni and David, 13 years old, went to a local eatery for dinner. Meloni enjoyed her time with David . . . some kind of wonderful when a 13-year-old boy wants to go out with his mother! After watching the news, everyone went to bed not re- alizing their lives were about to change drastically! Meloni would never see David or Stephen alive again and she would courageously fight for 9 months to return to a some- what normal life.

Meloni’s mother continues: The sheriff came to my door earlier, but when no one an- swered, he left a message to call the sheriff in the town where my daughter and her family lived. The sheriff finally got in touch with my husband and told him the awful news. An in- truder had broken into my daughter’s home and shot and killed her husband. When she thought the intruder had left, she called softly across the hall to where her 13-year-old son was sleeping to bring a phone as she had been shot and critically wounded. David got on the phone and called 911, he barely got the words out about what happened when the intruder returned and shot and killed him. Meloni watched her firstborn bleed to death on the floor beside her. What followed was nothing short of miraculous. Meloni who had never been a rebel or fighter hung on, in part I’m sure, because her surviving son really needed her.

It was well below zero, a storm was coming. The roads were inaccessible due to the number of rescue vehicles blocking the way. An emergency helicopter was sent, but had to land at the local airport to which the ambulance took Meloni. She was transported to a trauma center 90 miles away where experienced experts were available.

The wonderful team of doctors, nurses, physical therapists, families and friends played important roles. I must accentuate the role that nurses played in caring for my daughter

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and our family. Although this was a busy unit, the nurses never appeared rushed. They acted as though Meloni was the most important person in the unit. They were attentive and explained everything. Staff members seemed always available. Communication was essential. A message board I used reassured me that nurses knew the location of a family member at all times. It is hard to put into words the security the nurses conveyed to the family as well as Meloni. Even when the nurses were not physically there, the family could feel their presence as family members remained at the hospital night and day.

Family Presence

During family life, members must face the inevitable times of illness, death, and painful life transitions. The presence of family members can be crucial to the wholeness of an in- dividual. Knowing that a family member is available or nearby during times of trouble is often important to the individual managing an illness (Meleis, 2010). This comforts the individual in crisis as well as the family members who are distressed. A family’s experience during illness can be filled with fear, anxiety, stress, and change. Families often feel help- lessness, anger, sadness, and conflict as a family member navigates an illness experience (Alvarez & Kirby, 2006; Hughes, Bryan, & Robbins, 2005; Jones et al., 2004). A family’s connection to the ill person often causes them to want to be nearby during acute, chronic, or terminal illness (Eggenberger, Meiers, Krumwiede, Bliesmer, & Earle, 2011; Eggenberger & Nelms, 2007; Krumwiede et al., 2004; Meiers, Eggenberger, Krumwiede, Bliesmer, & Earle, 2009; Meiers & Tomlinson, 2003).

When faced with serious or unexpected medical events, crisis with unexpected out- comes, uncertainties linked with surgery, fear associated with birth and death, and other critical points in time, family members support one another. The presence of a family member not only provides comfort, but the family unit is often more peaceful when they can be nearby. Even if discord and conflict surface, the family still needs to be together during a stressful illness experience (Eggenberger & Nelms, 2007). Despite divergent be- liefs and perceptions, the distress and demands of an illness can seem more manageable when family is near.

Nursing literature is filled with facts about the importance of family presence for a hospi- talized patient when nurses and other health providers perform invasive procedures (Basol, Ohman, Simones, & Skillings, 2009; Emergency Nurses Association, 2009; McClement, Fallis, & Pereira, 2009). Evidence indicates that family presence is important during times of acute illness requiring lifesaving measures such as cardiopulmonary resuscitation (Hung & Pang, 2011). Family presence can also facilitate positive health outcomes during chronic illness and life transitions (Chesla, 2010). Box 9.2 highlights a leading nursing scholar who has examined families during illness and nursing interventions focused on families. Even health promotion is better if individuals can learn along with someone who cares. Family’s emotional bonds are ties to loved ones that call for closeness during illness and distress. Ill persons want to know their family is available. The need for presence appears to be a foundational family need ex- perienced as family members protect, guide, support, and comfort one another (Doolin, Quinn, Bryant, Lyons, & Kleinpell, 2011; Eggenberger & Nelms, 2007). Family presence is an invisible and abiding attachment. Nurses who think family know that presence quells suffering and distress, silences some anxieties, and comforts in unfamiliar places.

C ase Study— Part 3 : Family Presence D uring L oss and Illness

My oldest son Bruce and his wife Jodi had arrived from California for a family visit unre- lated to the tragedy that was unfolding. I awoke eager to spend time with them and the rest of the family. As I reached the bottom of the stairs, my husband met me and said that

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this would be the most devastating day of my life. He told me to come into the kitchen and sit down. Bruce and Jodi were there. They shared the news of my son-in-law’s death and the death of my grandson David! We piled into a car together as a family and headed over treacherous roads in –10 °F temperatures on the 90-mile drive to the trauma center. When we arrived, other family members were already there, filling the waiting room. We were all in shock, one of the first steps of the loss process. Disbelief followed. What does a mother and a family do with the reality of a horrible and awful atrocity?

After a while, we were allowed to see Meloni. The shock was almost unbearable. My beautiful daughter was bright yellow. She had gone from her usual weight of about 120 pounds to 180 pounds! I knew that this was a fluid accumulation, but my heart just wept. The anger that followed was palpable. Family members exhibited emotions differ- ently. One was isolated. Another used chemicals. One argued loudly, the usual way of cop- ing when things are out of control. One usually talkative member sat in total silence. Another spoke in measured responses, different from a typical critical approach. Tears. I, the “glass half full” type, was lulled into a sense that everyone was pulling together and putting petty differences aside. We were together—available. But, still, we were suffering and struggling as individuals and as a family.

Family Processes and Presence

Family presence throughout an evolving illness and tragedy is a process that can support family health. Family processes are a central element of the Family Health Model (FHM), and these interactions address ways family members work together (Denham, 2003). The FHM includes seven core family processes: communication, caregiving, cathexis,

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BOX 9-2

Family Tree

Catherine Chesla, DNSc, FAAN (United States)

Catherine (Kit) Chesla, RN, DNSc, FAAN, is Professor and Shobe Endowed Chair for Ethics and Spirituality in the Department of Family Health Care Nursing at the University of California, San Francisco. For over 20 years she has been a mentor in family nursing education teaching family theory, intervention, and research methods to doctoral and family nurse practitioner (FNP) students. Her program of research focuses on understanding and intervening with families in which an adult member has a chronic illness, which has made her a groundbreaker in family research. She has conducted multiple studies with families living with type 2 diabetes in African American, Chinese American, Latino, and white families. She is involved in a community-based participatory, NIH-funded community-based project in San Francisco’s Chinatown testing a family-focused cognitive behavioral intervention to assist Chinese immigrants in the management of their diabetes. Her team adapted an intervention to be culturally appropriate and tested its efficacy in this population. Chesla primarily focuses on family processes in chronic illness and moves knowledge to intervention testing. She has studied families from diverse backgrounds including African American, Chinese American, European American, and Latino. Her use of interpretive phenomenology in investigating these issues and her work with a large interdisciplinary team of nurses, psychologists, physicians, and dietitians who use quantitative approaches in the study of families and chronic illness make her a trailblazer in family nursing research. She exemplifies attention to the importance of family presence in the management of chronic illess. Her work has been widely published and she is a leading scholar in family nursing. She is a founding member of the International Family Nursing Association (IFNA), has served as a member of the Board of Directors and the 2013 Conference Committee, and is IFNA’s current president.

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celebration, change, connectedness, and coordination, which are described further in Chapter 14. Over time, families develop individual and joint behaviors and actions. These behaviors serve as ways to organize daily life, health routines, and the many ways of being a family. Processes are central facets of family life and have potential to influence individual and family health and illness outcomes (Kaakinen, Hanson, & Denham, 2010; Weihs, Fisher, & Baird, 2002).

Family members available for each other during distress and suffering contribute valued meaning to relationships as they connect, give care, communicate about illness management, and coordinate needed actions (Denham & Looman, 2010; Weihs et al., 2002). Meaning is constructed through family relationships and their attachments (Frankl, 1992). Fidelity, devotion, faithfulness, loyalty, and regard are just some of the values aroused in family mem- bers by the presence of others (Kaakinen et al., 2010). These values, when nurtured, can bring a sense of care, peace, wholeness, and fulfillment. These values are supportive, act as deterrents to fears, help to overcome hopelessness, and promote a sense of well-being.

Nursing actions that support a family’s processes have potential to improve health out- comes for individual members and the family as a whole (Chesla, 2010; Denham, 2003; Weihs et al., 2002). Nurses can encourage family beliefs that support healthy management of a chronic illness (Wright & Bell, 2009) and help family members cope (Knafl, Deatrick, & Havill, 2012; Knafl & Gillis, 2002). Nurses can facilitate communication and help re- solve decisions and negotiations during difficult illness situations (Bakitas, Kryworuchko, Matlock, & Volandes, 2011; Wiegand, 2008). Also, presence and family involvement during an acute illness or end of life can decrease suffering and anxiety (Tschann, Kaufman, & Micco, 2003; Vandall-Walker & Clark, 2011).

C ase Study— Part 4 : Family Presence in Acute C are

Day by day, Meloni fought the pain of a torn liver, cardiac tamponade, a wound in the ileum requiring an ileostomy, a chest wound that dissected her breast, and an elbow so badly shattered that her left arm had to be amputated. She had more than 19 blood trans- fusions. Physical trauma was accompanied by deep emotional pain as she recalled her hus- band and son’s brutal murders.

As the weeks and months passed, one daughter, one granddaughter, and I stayed close by Meloni. We needed to be together to support her and each other. We lived nearby, and we were at the hospital every day. We missed the day of Stephen and David’s funeral. Family members from out of town left. I stayed at the hospital, sleeping in the waiting room most nights. It seemed that when I was unavailable something would go wrong. Of course, I really knew that it had nothing to do with whether I was there or not, but it felt strange and wrong to leave. Unbelievably, only once did I think that she would not make it through the night. As I sat by her bed, a student nurse told me it was “God’s plan” that this had all happened. I told him there was no way I could believe in a loving God who would do this. Meloni made it through the night, but she remained in serious condition. I stayed at the bedside.

Family-Focused Care

Family-focused care invites the nurse into a pivotal place where nursing presence can be used to help families endure illness, face tragedy, and support health. Nurse presence has a relational nature that extends the reach from individuals seeking care to including rela- tionships with family members. Nurses who think family recognize family is the recipient of their presence. They see this presence as an instrument for caring. Being present requires

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more than listening; it is a way of being that values the dignity and worth of others and shares deep connectedness (Hessel, 2009). Nurse presence can help unite family members and facilitate positive exchanges about beliefs as members support each other (Eggenberger et al., 2011; Krumwiede et al., 2004; Meiers et al., 2009; Wright & Leahey, 2013).

If nurses don’t think family or use family-focused care approaches, then conversations with family groups and the presence of multiple family members can be viewed as burden- some. Yet, when nurses manage complex situations, they must address concerns of the family network. As nurses introduce themselves to an individual and family members, a relationship that can lead to therapeutic conversations begins (Wright & Leahey, 2013; Svavarsdottir, Tryggvadottir & Sigurdardottir, 2012). Therapeutic conversations ac- knowledge the experience from a variety of perspectives. Nurses who think family in- clude family members in the care, address priorities, and use supportive communication (Hardin, 2012; Nelms & Eggenberger, 2010; Wright & Leahey, 2013). Family-focused care values members’ needs for presence and encourages them to become partners in caring situations.

Nurses who think family view the family members as the care unit and include them in care delivery. For example, a Doctor of Nursing Practice (DNP) student at Minnesota State University, Mankato, tested an intervention to encourage family involvement (Van Heukelom, Bell, Eggenberger, & Bell, 2010). A family nursing intervention with four com- ponents was tested by the staff on a hospital unit:

• Family members were given a welcome letter during their unit orientation that stated they were valued partners in the care of their family member.

• A pad of paper was placed at the bedside for families to record their questions. • Consistent introductions of nursing staff were made to persons and families. • The nurse sat at the bedside for at least 2 minutes of focused time with each hospital-

ized person and the family during the first 4 hours of the nursing shift to ask specifi- cally what they wanted to accomplish during that nursing shift.

Satisfaction surveys demonstrated some significant improvements noted in the scores. The student collaborated with the hospital unit to develop family-focused care.

C ase Study— Part 5 : Family and N ursing Presence Across C are Settings

The first days in the ICU, not knowing from minute to minute whether Meloni would live or die. . . . One day, I just lost it and cried and cried! A nurse put her arm around me and said, “This must be very tough for you. . . .” I appreciated the nurse’s attentiveness not only to my daughter, but to me as well. One night a nurse woke me in the lounge to tell me Meloni was going to surgery again. I appreciated her thinking of me because if I had gone to the room and not seen her I would have freaked out! Knowing the nursing staff was consistently present and working with my daughter and the expert attending physicians was comforting.

It was a shock when Meloni was transferred out of intensive care. The nurses outside intensive care were not as attentive to her needs, or to mine. Next, Meloni was transferred to a tertiary medical center for consultation related to her liver damage. The presence of nursing here was similar to that in the previous institution. I requested a care conference. A nurse advocated for me and was present at the conference. After I requested it, this nurse found Meloni a room more conducive for our family to visit. Following acute care, Meloni was transferred to an intensive rehabilitation center for ongoing therapy. They expected her to do things on her own that I don’t think she had done before. However, she was learning how to adapt to her new life at home again. There seemed to be more technical staff than professional staff. Nursing presence decreased, and less attention was paid to Meloni and our family.

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C ase Study— Part 6 : Adap tation to a N ew Family L if e at H ome

Eventually, Meloni went back home—where the tragedy had happened. This surprised many people, but she said, “I will not let him take that from me too.” Such strength and resilience! Amazing! The support of her friends was remarkable. Her home was cleaned by a business that dealt with the aftermath of such tragedies. It was refurnished before she returned home. She talked her brother into letting her drive around her property and coun- try road. Nothing was going to keep her from seeing her remaining son grow up. However, the battle continued. She went to the hospital to have her ileostomy reattached and went home and developed MRSA (methicillin-resistant Staphylococcus aureus) infection, which responded well to antibiotics. She eventually went back to work part time at her position as the office manager of a small local tax firm.

Several years have passed. They have not all been easy. At the trial of the murderer, Meloni, gave a very moving Victim Impact Statement. She told the perpetrator that although people commented on how well she was handling it all, they didn’t realize she cried herself to sleep each night. The murderer received two life sentences plus 20 years in prison. Meloni’s re- markable friends and family supported her throughout it all. Although Brad had to stay with friends or at his uncle’s home through the nine months of Meloni’s hospitalization, he is a fine young man, kind, and never in any trouble. Meloni now has a kind, caring man in her life, an old classmate. However, the pain will always be felt from the evil a person inflicted on an entire family and community. Yet, the presence of family and nurses during a tragic experience is treasured by our family.

Family Nursing Research Team: Family Transitions and Illness Experiences

The Family Nursing Research Team (FNRT) at Minnesota State University, Mankato, conducted a series of studies to investigate the meanings of family presence during illness and identify the effect of nurses’ presence during health, illness, and transitions (Eggen- berger et al., 2011; Krumwiede et al., 2004; Eggenberger, Krumwiede, Meiers, Bliesmer, & Earle, 2004). Studies found several processes that families used to manage experiences (Box 9.3). These study findings suggest that nurses have great potential to positively sup- port individual and family health as members use caring strategies to manage illness experiences. To illustrate processes and caring strategies this chapter includes quotes from family members who participated in this team’s studies.

An early study by the FNRT described the health experience of families in a rural setting in Midwestern United States (Meiers et al., 2009). This study explored the processes that families in a rural setting used to maintain and regain health. These rural families experi- enced health as an ongoing process. Balancing family life in response to the inevitable tran- sitions and changes linked with illness was an unending process. Examples of balancing include the following:

• Partnering with others to share the family work in the rural setting • Being present for each other and the family during times of illness • Prioritizing work and family time • Creating space for family members • Managing family decisions • Modifying family routines and rituals

During times of transition, families continually balanced work and family, multiple com- mitments, individual and family needs, and resources. Transitions included birth, marriage,

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growing independence of adolescents, separation through death or divorce, and financial threats and strains (Meiers et al., 2009). Figure 9.2 depicts the balancing processes and negotiations necessary as families develop a capacity for caring and managing uncertainty during times of transition.

During transitions, families continually readjusted unit life within the context of their evolving world (Meiers et al., 2009). Family members continued their work of family caring. Negotiating family relationships, roles, communication, boundaries, and mem- ber growth and maintaining family bonds were central elements for maintaining health and identity in these rural families. Interactive processes in the presence of family mem- bers influenced members’ health during daily life and transitional times. Maintaining family integrity during transitions required enduring energy to balance competing needs. Families often desired and needed nurses’ support and presence during transitional times. Many findings from this study support ideas suggested by the Family Health Model (Denham, 2003).

Family Caring Strategies

A study focused on families’ cancer experiences showed the meanings of their caring strategies to manage events and symptoms resulting from a member’s chemotherapy treatments during recovery (Krumwiede et al., 2004). The cancer diagnosis and following

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BOX 9-3

Family Nursing Research Team Investigations

K EY FINDINGS TO GUIDE FOCUS OF STUDY HEALTH EXPERIENCE FAMILY NURSING ACTIONS

Healthy families in rural setting

Families managing neutropenia with cancer

Families and chronic illness

Aesthetic representations of family health experiences

Healthy family transitions

Family with an acutely ill family member

Chronic illness experience

Interpretation of family research findings with illness

Balancing the work of family Promoting health of family

Turbulent waiting Symptom management

Enduring transitions of illness Developing caring strategies Reintegration of a family

Visual interpretations evoke emotion for families and family-focused care

Family caring and family work

Enduring acts of balance

Family relationships and unique family identity

Family Integrity

Times of Family Transition

FIGURE 9 -2 Times of transition and family presence.

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cancer treatments caused families to develop new strategies as the ill family member was protected and integrity of the family unit supported. Families needed to gain a sense of power and control, understand perplexing situations, find answers to questions, and protect family members.

Family Uncertainty

Family uncertainty emerged as a significant concern for the family during the unsettling times with illness. Family caring strategies helped members search for the meanings in the illness events and find ways to support one another during periods of uncertainty. Seeking information was a consistent tactic. Family members responded to illness threats as they personally managed life demands. Families collectively monitored needs of ill members. Family strategies helped them access resources, manage demands, and advocate for their ill member. They sought information and guidance. They needed a sense of stability as they used coordinated efforts to guard and protect their families’ integrity. Figure 9.3 depicts the caring strategies that helped families manage the anxiety when their ill member expe- rienced neutropenia and chemotherapy was interrupted (Eggenberger et al., 2004). Nurses who think family can help expand caregiving capacities.

Family Inq uiry

Family inquiry involves family efforts to gain information and knowledge to manage an illness (Eggenberger et al., 2004). It allows members to seek answers from multiple infor- mation sources and manage inconsistent or conflicting messages and get answers to ques- tions. A nurse’s presence may be needed to provide guidance for decision making and navigating an illness situation. A family managing a member’s chemotherapy-induced neu- tropenia had frustrations and concerns about blood counts and conflicting information about neutropenia. A family member said: “It has been difficult to get answers. Our family has been confused at times. . . . we have not always even known what to ask. We do not know what to expect next.”

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Passage of Time

Expanded Capacity for Family Caring

Family Uncertainty • Unsettled times • Sense of powerlessness

Family Inquiry • Information seeking • Weighing options • Decision making

Family Balance • Assisting ill member • Supporting each other • Modifying usual family

processes • Adopting new roles

Family Vigilance • Being close • Advocacy • Protecting ill member • Watching and waiting

FIGURE 9 -3 Managing family uncertainty.

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As nurses help a family learn about an illness, manage symptoms, and make decisions, they support a protective family environment. Including family in education, coaching, com- munication, and decision making can help manage uncertainty (Chesla, 2010; McDaniel, Campbell, Hepworth, & Lorenz, 2005; Wright & Leahey, 2013). Intentionally including a family unit in discussions that focus on information, family beliefs, and family interpretation or meanings of events can support a family’s caring strategies (Wright & Bell, 2009). Con- versations with nurses, even brief interactions, support families during illness, increase satis- faction with care, and address concerns (Duhamel, Dupuis, & Wright, 2009; Svavarsdottir et al., 2012). Use of family meetings and conferences may help families to discuss the mean- ings of events and possible caring strategies (Griffin, 2010; Nelms & Eggenberger, 2010).

Family B alance

Balance addresses the ways family memebers simultaneously care for each other, the ill person, and their household needs. When illness occurs, family members cannot easily set aside usual demands. Symmetry of daily life is disrupted and conflicting demands may lead to imbalance. Nurses who think family help members coordinate caregiving roles as they aim for some normality and family integrity during troubled times.

Planning allows families to prepare for present and future needs (Kunerth, 2010). It is a proactive way to balance competing demands and manage obstacles. For instance, a fam- ily dealing with the chronic illness in a child with asthma had needs related to education, friends, leisure, and health care. One family member with a chronic illness stated, “I have a big calendar and on the big calendar go all kinds of things. We have a calendar for who is going where. We have a calendar on the fridge that everyone is supposed to put their stuff on. . . . We keep track of who needs a ride and when. I do the planning and organize for all the medical appointments and care.”

Having preparatory tactics is a caring strategy that allows families to feel more confident when dealing with needs, transitions, and the complexity of care systems (Kautz & Van Horn, 2009). The use of intentional caring strategies helps the family manage the illness as well as individual and family lives.

Family V igilance

With family vigilance, members create a healing and protecting environment for the mem- ber experiencing illness (Carr & Clarke, 1997; Dudley & Carr, 2004). Uncertainty from actual or potential threats can accentuate needs to stay close and connected. In Meloni’s case, her mother said that she could not leave the hospital or her daughter’s bedside. If a family member cannot be in close physical proximity, he may choose to stay connected through telephone, Skype, texting, e-mail, or other technology.

Family members have a strong need to be near a family member during an illness (Dudley & Carr, 2004). Families can protect their members, deal with hurtful comments, and prevent harmful actions by health professionals (Carr & Clark, 1997; Dewar, 2001; Kunerth, 2010). For example, the wife of a critically ill husband said, “I can’t leave the room. I must be here in case anything happens. We [our family] all want to be here. It feels terrible when we leave. We want nurses to help us stay here” (Eggenberger & Nelms, 2007). The parents of a child hospitalized in a pediatric unit depended on the nurse’s presence to support them: Just having someone to touch base with regularly, either by phone or in person at any time of the day to say, your baby’s doing okay . . . to know when I leave at the end of the day and I’m not here I still feel like I have a connection to her. When you go, often you feel like you’re abandoning them. . . . The nurse puts a bridge between home and hospital which is reassuring” (Meiers & Tomlinson, 2003).

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The parents of an adult teenager with a chronic condition about to leave for college stated: “It is difficult to think that we may not be with him if he has a diabetic reaction or complication. We always watch his diet and symptoms closely, but now we are not sure what will happen when he is independent” (Eggenberger et al., 2011).

Nursing Actions to Support Family Presence Through Caring Strategies

A nurse who thinks family understands that family caring strategies support family vigilance and communicates ways families can connect during an illness experience. Nurses can support family vigilance by clearly communicating things the family can do to protect and be present. Family-focused nurses recognize that protection of a fam- ily member is a fundamental social process of family life (Boss, Doherty, LaRossa, Schumm, & Steinmetz, 1993). The family in an acute care setting is comforted when a nurse describes the following:

• When and how information about clinical status will be provided • When to expect the nurse’s return and how to find the nurse • Ways they will be consistently updated with information • When usual system routines occur and purposes of technological equipment • Treatments and procedures in clear plain language • Ways to participate in the care of their family member

Families recognize inclusion and value specific directions on ways to participate in the care of their ill member (Johnson et al., 2008). This information is especially important with a chronic condition, disability, or terminal illness. A nurse who is present supports family caring strategies by helping families to participate and explaining what to expect from health care professionals (Abraham & Moretz, 2012). In care situations, families need to know several things:

• When and who to call when questions arise or situations seem out of control • Steps for follow-through and safety needs linked with medically prescribed treatments • Ways family members can best be involved in care procedures • Supportive actions that can empower the individual member and family • Ways to locate necessary resources outside the household

Nurses who think family recognize that families balance multiple life aspects. These nurses initiate therapeutic conversations about the assistance and support needed by the ill person. Family members generally appreciate it when nurses anticipate their needs and provide useful information in clear and timely ways. Nurses who think family know that families living with a member who has a chronic condition face potential developmental changes as members age and conditions evolve. Family roles and illness demands change over time. Thus, nurses must assess, prepare, and plan for potential alterations in family processes.

As families wait, the nurse can give accurate timelines about when information will be available and updates on the status of treatments, tests, and surgery outcomes. On- going communication provides a protective environment. Nurse presence is comforting and gives a sense that care is continuous and coordinated. It says, you are not forgotten. You are important! A nurse who thinks family helps family members identify beliefs and communicate their values. These nurses know members are unique and respect rights to differing attitudes. Nurses who think family are present. They guide, teach, coach, coun- sel, and advise about health and illness. Box 9.4 introduces nurses from Thailand who

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remain committed to nursing research and education that emphasizes the significance of nurses to families.

Family Connecting, Relating, Pondering, and Struggling

Families have other strategies for care and support of their members during chronic illness; these were identified in a study about family processes (Eggenberger et al., 2011). Interviews were conducted with families experiencing HIV-AIDS, multiple sclerosis, type 1 diabetes mellitus, ankylosing spondylitis, lymphoma, chronic obstructive pulmonary disease, and con- genital muscular dystrophy. Four specific themes linked with family presence—connecting, relating, pondering, and struggling—were found when a member had a chronic condition (Eggenberger et al., 2011).

Connecting

The idea of connecting takes varied forms when member illness is a concern. Connecting is a way of making memories, commemorating shared lives, celebrating, or paying tribute to family identity. Chronic illness often creates a need for members to lean upon one another, draw strength from each other, and provide supportive care. Family bonds are central elements of family life and these connections are at the core of family units (Boss et al., 1993; Denham, 2003). For example, a wife with young children described family activities that created mem- ories as her husband’s symptoms of multiple sclerosis progressed (Eggenberger et al., 2011). She said, “I mean if there should ever come a time, and hopefully not, when Jon has a hard time walking . . . all these vacation memories with their dad, when he is walking, I just think are important, really important. . . .” Another ill father who was living with a chronic neuro- muscular disease limiting his physical function stated, “I coached my son’s soccer team and

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BOX 9-4

Family Tree

Chintana W acharasin (Thailand)

W annee Deoisres (Thailand)

Chintana Wacharasin, RN, PhD, is an Associate Professor at the Faculty of Nursing, Burapha University, Thailand, where she teaches the advanced practice of Family Systems Nursing to graduate nursing students at the master’s and doctoral levels. Her interest in family nursing first began in her graduate studies at the University of Washington, where she learned to apply family nursing models with actual families. She has helped move family nursing in Thailand forward through several initiatives. In 2002, she co-developed the first master’s program in Burapha University in 1997. In 2002, co-developed the First Family Nursing Conference in Thailand. She collaborated with colleagues at Khon Khen University to establish the Thai Family Nursing Society in 2004. Her current research focuses on examining family nursing interventions with families experiencing HIV-AIDS and thalassemia. She also developed a family health promotion program for families at all developmental stages. Dr. Wacharasin is the author of a textbook about Family Systems Nursing, Theoretical Foundation for Advanced Family Nursing (2007). She is the co-editor of the book Family Nursing: Academic Articles for Continuing Education in Nursing S cience 4 (2012) written in the Thai language. Along with Dr. Wannee Deoisres, she served as one of the co-chairs of the successful Eighth International Family Nursing Conference held in Bangkok in 2007. In 2005, she was honored with an Innovative Contribution to Family Nursing Award by the J ournal of Family Nursing.

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thought, I don’t know if I can do it in the future, so I better do it now.” Memories are made from family connections and may feature their affection and value for each other.

Relating

Relating refers to efforts to continue family unit relationships among members as they face a chronic illness (Bell, 2011; Bell & Bell, 2012; Tollefson, Usher, & Foster, 2011). A father managing chronic degenerative musculoskeletal disease said, “We try to spend as much time together as a family as we can. We have to just put the disease over there and I try to continue being a helpful spouse and parent.” Families describe intensified member relationships during long periods of waiting during cancer treatments (Eggenberger et al., 2011). Family members often use extreme efforts to maintain and build relationships when experiencing uncertainty, unknowns, and demands.

Families interact and relate with members, extended family, and their social networks while they manage chronic conditions. Members offer different perceptions, coping strategies, and understandings about what is occurring. They often interact in new ways as they maintain satisfying relationships. It is stressful to live with an ill person besieged by the physical, psychological, and logistical demands of a condition (Weingarten, 2013). A married couple described tensions while living with multiple sclerosis, “He [husband] thinks I worry too much. At times I want to talk about it more than he does. But I know I have to wait until he is ready and then I can explain my concerns.” In con- trast, the husband stated, “I don’t see any purpose in talking about what the multiple sclerosis might do to my body until it happens. Why worry about what may not happen” (Eggenberger et al., 2011).

Families strive to develop trusting relationships with their care providers. A family deal- ing with chronic obstructive pulmonary disease wanted a provider to listen to their con- cerns about ongoing dyspnea. They often felt their story and voice were minimized. “It has been work to find a competent practitioner who cares about listening to us.” Families that established a trusting provider relationship had a sense of comfort in this partnership. A family with a child with congenital muscular dystrophy shared their trust in a provider who understood their concerns, “She [their nurse practitioner] is always ready to listen to our anxieties when he gets a lung infection or fears when he starts school or a new activity.” Families with a positive individual-nurse-family relationship felt supported and better able to handle the unknowns of a chronic illness (Eggenberger et al., 2011). “Just knowing we can call her [nurse] for guidance is a huge benefit. I am not sure how we could survive this without her help. It feels like she is always there for us. She helps our family understand what is happening.” Nurses who think family sense that a medical diagnosis implies a life change and know that families and members have unique ways of addressing related needs.

Pondering

Family pondering occurs as members attempt to construct meaning and purpose. Families question and interpret the meanings of the illness. They wonder what a condition means for their family unit and member lives. They need to know how to manage illness symp- toms. Families wonder how they will make space for this unexpected and unwanted assault and they puzzle over ways to establish new roles and processes as symptoms emerge and conditions change. Family members reflect on their history and their future as they seek to be prepared for the condition (Noble & Jones, 2005). Social networks provide assistance, guidance, and resources to manage demands. A family living with ongoing exacerbations

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of a chronic condition said, “The church and neighbors have been right there with us from the beginning” (Eggenberger et al., 2011).

Struggling

Families use much energy as they struggle with achieving wellness or managing disease. Struggling occurs as families attempt to resolve concerns over resources, services, finan- cial assistance, or even diagnosing the problem (Neufeld, Harrison, Stewart, & Hugest, 2008). Family members often negotiate for medical appointments, pathology tests, medical treatments, test results, prescriptions, and equipment (Tong, Lowe, Sainsbury, & Craig, 2008). Family members make statements such as “It is all so much work. Some- times we have trouble getting the children to their activities when my husband is not doing well. Trying to juggle work and appointments by myself is really difficult.” Some families also struggle with care systems or staff to obtain adequate comfort needs (Tong et al., 2008). For instance, the wife of a family member with cancer who experienced hospitalization for an acute situation said, “At times it feels like the nurse looks right past us. What about me? I am his wife. I don’t know why I am always the one who has to initiate the conversation.” Parents of a junior high adolescent with a chronic illness shared their constant efforts: “We are so tired. We just lay there at night and listen to his breathing. We feel so blessed that he lived, but we never realized how hard this was all going to be. We have a hard time thinking about anything else besides him . . . yet we have jobs.”

Family members struggle as they manage the conflicts and tensions that surround illness. A family shared their concerns with the extended family: “Sometimes they [extended fam- ily] just don’t understand. They don’t want to talk about the illness and future, yet I think that would help all of us” (Eggenberger et al., 2011). Witnessing a loved one’s chronic ill- ness is a continuous struggle with loss and letting go and differences in moving toward ac- ceptance, and yet, developing an approach of being alongside the family is a foundation for nursing practice (Weingarten, 2013).

Living Within the Context of Chronic Illness

As families live with chronic illness, they experience individual and family vulnerabilities (Fig. 9.4). Family members wrestle with multiple unknowns as they work to manage un- certainties, care needs, symptoms, and unpredictability of illnesses. Although situations vary among families, many experience highly emotional times that tax their emotional and physical strengths. This stress can disrupt even the most organized households and exhaust resources.

Living with an illness means ongoing management, unpredictable outcomes, and family stress that occasionally erupts into conflict. Uncertainty can create arguments, disagree- ments, and disruptions that magnify suffering. Even organized and caring families with great resilience can become overly burdened with the demands of an illness. Persons with a chronic illness may perceive the illness differently from the family. They may respond with silence or turmoil. They can have difficulty managing without the presence of their family and sometimes with their presence. Nurses can help families cope and manage un- certainties (Duggleby et al., 2010; Knafl et al., 2012). Nurses who think family consider ways a chronic illness influences different members and work to strengthen family unit capacities to address these influences.

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A nurse who thinks family is intentionally present and assists in the development of car- ing strategies. Families may find chronic illness leads to abiding family distress, suffering, conflict, and turmoil (Eggenberger et al., 2011). For example, Victor received a phone call from his physician: “The biopsy shows the tumor is malignant. You will need to come in next week to discuss the various treatment options. I will transfer you to my nurse and she will assist you.” Victor was unsure whether malignant meant cancer or not. When the nurse answered the line, she said, “I need to arrange your appointment, but before we do that I am wondering if you have any questions about what the doctor just told you?” The nurse was able to translate the physician’s message into clear language for Victor and help him understand that he did have cancer so that he could make sense of the diagnosis. When the nurse was sure Victor understood, her attention turned to his family and she asked if he needed her to talk with another family member.

Nurses who think family support their needs from the time of diagnosis through an ongoing process of family reintegration. The process of reintegration in chronic illness involves the family’s capacity to function as follows:

• Adapt to reality and develop caring strategies to strengthen the family. • Satisfy individual family member and family unit needs. • Assist the family member with the chronic illness to manage the illness and related

symptoms or complications. • Manage the demands that the chronic illness places on everyday family life.

Reintegration begins with recognition of vulnerability and the realities aligned with a particular condition. Families need to be prepared for condition changes, challenges of illness management, and risks in living with change and uncertainty.

Family Integrity

Maintaining family integrity during times of illness is a goal for nursing because the family is the central social unit that manages the health and illness of its members (Litman, 1974). Family integrity is identified in the Nursing Intervention Classification system as an area

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FIGURE 9 -4 Family reintegration in chronic illness.

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for nursing intervention to facilitate family health (Bulechek, Butcher, & Dochterman, 2008). Family integrity is defined as family cohesion and unity (Bulechek et al., 2008, p. 345). A sense of togetherness through open communication and a tone of acceptance, forgiveness, and resolution of conflict demonstrate family integrity (Kautz & Van Horn, 2009). Families regulate boundaries and use values and meanings to support and maintain integrity (Tomlinson, Peden-McAlpine, & Sherman, 2012). Maintaining family integrity offers a supportive presence to members.

Nursing actions can assist a family in developing, maintaining, and regaining integrity. A nurse can help a family attain balance, vigilance, and inquiry to maintain integrity (Eggenberger et al., 2004). Assisting a family in planning, monitoring, communicating, and protecting their family member supports family processes (Eggenberger et al., 2011; Weingarten, 2013). A trusting individual-nurse-family relationship can support family integrity and aid in developing partnerships (Eggenberger & Nelms, 2007; Tomlinson et al., 2012). Nursing actions that address the connecting, pondering, struggling, and relating aspects of family support integrity. Family nurses can help create optimal health outcomes for the individual and family unit by maximizing their caring capacities (Weingarten, 2013).

Families as Advocates for Members w ith an Illness

The word advocate is derived from the Latin word advocatus, meaning to plead another’s cause (Abate, 2002). Family members serve as advocates for members who can’t speak for themselves, as may occur during times of acute illness (Krumwiede et al., 2004; Meiers & Tomlinson, 2003; Nelms & Eggenberger, 2010; Wiegand, 2008). A sudden hospitalization with a life-threatening illness can alter decision-making abilities. A person with a recent severe physical disability from an accident might need adjustments for living arrangements. Advocates who speak for them can help. Advocacy can be a proactive family response as they are vigilant in being protective and supporting the ill member (Dudley & Carr, 2004). During critical illness, families often speak with professional care providers on behalf of ill members. Family nurses help families make decisions, clarify treatments, and set future care directions (Meiers & Brauer, 2008).

Positive benefits can emerge in care situations when family is involved and advocates for its member (Kunerth, 2010). Offering support to families in negotiating the complexities of an illness or health care system can increase satisfaction and sense of personal power (Kautz & Van Horn, 2009; Neufeld et al., 2008). However, the need to continually advo- cate for the ill person can become a major source of stress for the family unit (Clabots, 2012). Families can become fatigued attempting to meet unending demands for advocacy and become overwhelmed when stress is continuous. Advocacy is integral to nursing practice, and thoughtful use of advocacy is an essential aspect of family-focused practice (Vaartio, Leino-Kilpi, Salantera, & Suominen, 2006). Nurses can help families communi- cate and coordinate as they negotiate health care systems.

Visual Interpretations Evoke Family Emotions

The emotional experience of a family living with an ill family member or enduring a tragic family event is powerful and often filled with suffering, conflicts, and despair (Wright & Bell, 2009). Illness experiences can deeply divide families, but they can also bring them together (Eggenberger & Nelms, 2007). Critical illnesses can be painful and threatening, but families can find ways to endure hardships and work together as a family (Eggenberger & Nelms,

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2007; Krumwiede et al., 2004; Meiers & Tomlinson, 2003). Sometimes it is difficult to find words to fully describe emotions, responses, and reactions when undergoing great stresses. This was true for the Family Nursing Research Team (FNRT) at Mankato, Minnesota, and the team searched for new ways to communicate the power of a family’s presence.

Art has been described as a path of inquiry and a way to generate understandings of human experience (Baumann, 1999; Munhall, 1994). Visual images give voice to data and may convey deeper meanings than the language of words (Richardson, 2000). Considering these assumptions, the FNRT commissioned two creative aesthetic expressions to convey the findings from grounded theory studies of families living with cancer (Krumwiede et al., 2004) and chronic illness (Eggenberger et al., 2011). The intent was to evoke viewer em- pathy about family presence during a member’s illness. Nurses who think family during caring roles empathize as they share family emotions associated with illness, disease, and other tragic times.

Understanding the Family Ex perience of Neutropenia: Hope

A painting was created from the study about families managing chemotherapy-induced neutropenia (Eggenberger spacey et al., 2004). Families had responded to the cessation of chemotherapy because of decreased white blood cell count in their family member by taking precautions to prevent infection. Study families were vulnerable as they faced visible re- minders of their member’s mortality. The experience caused intensified connections with each other. Family members reported coming together, but also having a sense of aloneness with their thoughts and fears as they tried to protect their ill member.

Essie Mostaghimi, a professional artist, was commissioned by the nurse researchers to create a visual interpretation from the research findings (Fig. 9.5). This artist, with over 20 years’ experience, described himself as an impressionist. Creation of an aesthetic expres- sion of nursing research findings is an uncommon method for nurses, so the plan began with an open-ended dialogue between the researchers and the artist. This dialogue was an exchange of ideas about the emerging data themes, and some exemplary meaningful state- ments from the family interviews were discussed. At the end of the dialogue, both researchers and the artist attained a synergistic understanding of the significant themes. The artist was

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FIGURE 9 -5 Artist Essie Mostaghimi.

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BOX 9-5

Painting: Link ing Art and Tex t

U nderstanding th e E x p erience of N eutrop enia: H op e

Essie Mostaghimi and the Family Nursing Research Team

A family is together on one long couch. The storm outside represents the turbulent times surrounding the cancer and neutropenia. However, the slivers of light continue to stream in and the storm does not destroy the family’s hope. The shattered glass in the window represents disruption and the grandfather clock depicts time standing still while waiting for neutropenia to resolve. In the center of the painting, the family member with cancer is confined to a separate square on the couch and is dressed in white symbolizing innocence and neediness. Nonspecific faces represent differing family experiences, diverse family types, and changing family roles and relationships. Various out-of-perspective depictions, such as the twisted legs and thin elongated arms, represent pain and yearning throughout the cancer experience.

FIGURE 9 -6 U nderstanding the Family Ex perience of

Neutropenia: Hope.

prepared to move forward and create the visual work, an acrylic painting depicting his interpretation of the family data (Fig. 9.6). The visual artwork, titled Understanding the Family Experience of Neutropenia: Hope, was unveiled and a textual interpretation of the aesthetic expression created to blend the narrative text with the painting (Box 9.5).

Sculpture: The O ther Side

The researchers then commissioned another artist, Jonathan Kamrath, whose disciplinary focus is mixed method sculpture (Fig. 9.7). Again, the researchers shared with the artist the major empirical findings and some narrative exemplars of the processes in the reinte- gration of families linked with chronic illness (Eggenberger et al., 2011). The artist used an interpretation process that resulted in a three-dimensional constructed door sculpture entitled The Other Side, depicting the family’s life and goals, The Dream, before the diag- nosis of the chronic illness, and Life With Chronic Illness portraying demands and concerns of the family as they experienced the chronic illness (Fig. 9.8). Textual description was composed by the artist to verbally interpret the work (Box 9.6).

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FIGURE 9 -7 Artist Jonathan Kamrath.

FIGURE 9 -8 Challenges of chronic illness.

Challenges of Chronic Illness: Artistic Interputation of the Family Reintegration Process

FAMILY NURSING RESEARCH TEAM: Mary Bliesmer, RN, DNSC; Patricia Earle, RN, PhD; SandraK. Eggenberger, RN, PhD; Norma K. Krumwiede, RN, EdD; Sonja J. Meirers, RN, PhD.

SCHOOL OF NURSING - MINNESOTA STATE UNIVERSITY, MANKATO

The Other Side by Jon Kamrath

The aesthetic interpretation of research findings highlights the centrality of the family presence in the member’s illness experiences. Throughout the trajectory of a chronic illness, the family experience is filled with uncertainty, distress, and suffering. Families want to care for their loved one, but they need knowledge, guidance, and coaching to maintain their relationships, caring strategies, and family health. The study findings suggest that nurse presence can ease some distress because it underpins and encourages the family in ways that support their ill member and each other.

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Transforming Health Care Systems to Embrace Family and Nurse Presence

Family care must be a target for quality improvement in health care systems (Abraham & Moretz, 2012; Black, Boore, & Parahoo, 2011; Institute for Patient-and Family- Centered Care, 2013). Real change in health care delivery encompasses more than tech- nology and costs; it pertains to hearing the voiced needs of those receiving care, contin- uing care over time, and equipping families to manage health and illness. Health and illness largely occur when families are not in the presence of health professionals. How do we coordinate care so that it addresses needs in these long spaces between medical settings and the household production of health? What would change in health care if family were the focus?

Nurse leaders must guide from the front. Innovation is not just added technologies or aesthetics, but a focus on human relationships and optimal use of nursing skills and time. Family-focused nursing care involves actions that anticipate individual and family care needs beyond the doors of health care systems, agencies, and institutions. Family presence and nurse presence influences health outcomes and satisfaction with health care systems and nursing care (Abraham & Moretz, 2012; Duke & Scal, 2011; Moretz & Abraham, 2012). More attention to the development of human relational and communication skills is needed. Nurses who think family use the tool of nurse presence to intentionally focus on family and value it in all forms of care delivery.

The availability of community and societal support during health and illness experiences is critical to quality care. Excellent care delivery to fully satisfy needs must include the family unit as an intentional collaborative partner in care. Nurses who think family realize that fam- ilies have active and primary roles in health and illness. Families need nurses who know how to be present and support the well-being and health of families so they can fulfill individual, familial, and societal roles and responsibilities in the best ways possible.

Individual and Family Satisfaction

Individuals and families do not always know what to ask for, but they know good care when they receive it. Satisfaction with care is a critical factor being measured in current health care arenas and nurse attention to families can make a difference in their satisfaction.

244 CHAPTER 9 ● Family and Nurse Presence in Family-Focused Care

BOX 9-6

Sculpture: Link ing Art and Tex t

Th e O th er Side b y Jonathan K amrath (2005 )

The O ther S ide is a series of two individual, sequentially related pieces (The D ream and L ife W ith Chronic Illness). Because these two separate pieces are physically joined, an interesting relationship of contrast is established between them. Although each piece needs to be interpreted within its relationship to the other, it is important to observe each as its own independent identity. One needs to first take in The D ream, noting its key features, then move to L ife w ith a Chronic Illness. After observing each as its own complete unit, one can then appreciate the two together as a whole, taking note of the differences between the two (Meiers, Krumwiede, Eggenberger, Bliesmer, & Earle, 2007).

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Current research suggests that nurses who are fully present for families and those who value the presence of a family positively influence satisfaction (Osborn et al., 2012). In- cluding families, supporting family decision making, and allowing families control over care are factors that influence satisfaction (Osborn et al., 2012). As family influence in health care experiences and outcomes becomes more evident, family care is quickly be- coming a target for satisfaction and quality improvement in health care systems (Osborn et al., 2012). Box 9.7 describes a team of researchers who strive to influence best practices by studying family nursing intervention for family caregivers. Initiatives to incorporate pa- tients and family as partners in care align with the Institute of Medicine’s pivotal report, Crossing the Quality Chasm (Institute of Medicine, 2001). Whether the concern is wellness, acute and chronic illness, end-of-life transitions, or other needs, nurse presence appears at the core of quality care, health outcomes, and satisfaction.

Measuring Satisf action

The processes of eliminating barriers and building a family-focused institution for care de- livery are wrought with challenges around ways to establish a culture focused on family and nurse presence (Abraham & Moretz, 2012). Satisfaction is not merely about measure- ment, but about relationships. It is not just about giving care, but about giving valued care. It is not only about outcomes, but also about perceived benefits.

Educational and practice perspectives are needed to develop visionary statements, strate- gic plans, and outcome measures that support individual-nurse-family partnerships. Policy changes, philosophies, missions, resource allocation, and practice expectations to embrace the significance of family and nurse presence are needed. Exemplars or role models,

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BOX 9-7

Evidence-Based Family Nursing

Family Nursing Interventions: Family Caregivers of Seniors

In Canada, similar to the United States, an aging population is placing greater demands on family caregivers. The majority of caregiving comes from family members, and the burden of sickness and the time needed for caregiving place caregivers at risk for lessened quality of life and personal health problems. The Desjardins Research Chair in Nursing Care for Seniors and Their Families has conducted research for more than a decade on innovative nursing interventions for family caregivers. A stress management intervention is composed of five in-home visits and a follow-up visit a month later with specific objectives and activities for each meeting. Another intervention called “ Taking Care of Myself” consists of ten 90-minute weekly sessions for six to eight caregivers. This family research team used theoretical frameworks to develop a four-step process for developing and testing their interventions. They involved caregivers in their processes and tailored interventions to satisfy needs of families. Many of the recommendations that came from this program of research were adopted as policy in 2009 after the Ministry of Health and Social Services and Ministry for the Family and Seniors invited the research team’s opinions on best practices for families. The researchers note that families’ complex interactions and needs, as well as those of individual members, need to be taken into account with any intervention.

Source: Ducharme, F. (2011). A research program on nursing interventions for family caregivers of seniors: Development and evaluation of psycho-educational interventions. In E. K. Svavarsdottir & H. Jonsdottir (Eds.), Family nursing in action (pp. 217–250). Reykjavik, Iceland: University of Iceland Press.

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coaches, mentors, and educators who can demonstrate nursing presence are necessary. Students need opportunities to practice ways an individual-nurse-family partnership works as they strive to enhance presence. Leaders to guide others in the acquisition and use of techniques that enable families to practice wellness, care for ill members, and optimize the health of households are needed (Denham, 2003).

Creating Environments to Support Family Presence

Transforming health care organizational environments to support the presence of families is being recognized as a mechanism that supports quality improvement (Henriksen, Isaacson, Sadler, & Zimring, 2007; Karlsson, Tisell, Engström, & Andershed, 2011; Milford, Zapalo, & Davis, 2008). Unlike traditional health care environments, grounds and rooms are being remodeled and designed to be noninstitutional, aesthetically soothing spaces aimed at reducing anxiety and maximizing comfort (Evans & Thomas, 2011). Health care systems can focus on built environments that encourage family interactions, recognize family’s protectiveness, and accommodate family’s needs. Larger rooms that allow members to be close and private spaces that allow privacy can support family needs. A space for fam- ily meetings and decision making can support family presence. Room design and comfort measures (e.g., space, color, seating arrangements, refreshments, and artful distractions) influence comfort in the environment. Pleasant environments are restful during critical inpatient stays. For example, Figure 9.9 shows a large sofa and chair where family mem- bers can gather. The sofa converts to a sleeping area for the night. Keep in mind the rows of patients lying next to one another on the floor during the Crimean War long ago. The person who made the truly important difference at that time was the nurse with the light, Florence Nightingale. Although aesthetics can be comforting to the family, it is the nurse presence that makes difficult situations endurable, inconceivable tragedies bear- able, and solace attainable.

Chapter Summary

This chapter explored nurse and family presence and the value of being with or being there for individuals and their family members over time and across care systems. It described the ways family presence is important to individual members at times of illness. Family

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FIGURE 9 -9 Hospital wellness room, Madelia, Minnesota.

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presence implies a the need to consider not only the physically present family members, but also family bonds and connections during illness experiences. Nurse presence can open the door to genuine caring relationships with the family unit. Nurses who value presence recognize the need to acknowledge the unique nature of each situation. A nurse who is present can help families find meaning in illness experiences, identify strategies to support family capacity to care for members, and navigate the health and illness experiences. Nurses who think family use presence to assist individuals and family members to manage the stress, vulnerability, and uncertainty linked to illness. Presence is central to family–focused nursing practice and healing environments and may be a means to improve satisfaction with care.

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