Lynn Kuechle

(Cohen, 1992; Hupcey, 1998; Kahn, 1979) Develop a trusting and connection relationship between nurse and family (Eggenberger & Regan, 2010) · Use nursing presence actions · Identify family’s greatest concern or challenge and act based upon data · Ask family to identify how nurses could be the most helpful at this time · Explore extended family networks · Dialogue about what family perceives as supports · Consistently share information with family in timely ways · Prepare family members for upcoming events · Teach family about what can be expected · Develop therapeutic relationship where family perceives nurses as support · Implement interventions that directly focus on uncertainty in illness events. · Explore with the family any mixed messages related to the illness or the treatment regime · Discuss seriousness and prognosis of an illness with all family members and family unit. · Address the symptoms of an illness with family members and family unit; discuss patterns and trajectory changes in illness; examine expected and actual events. · Reassure family of presence of nurse. · Provide factual information · Help family members structure and attach meaning to events · Be specific in describing contextual cues such as what patients and families will see, hear and feel during procedures, as well as signs, symptoms, and trajectories. · Help families anticipate changes and predict and manage changes with education and support. · Explore past experiences with health care systems and structure providers that may influence their uncertainty now.

(Goodew, Isaacson, & Miller, 2013; Persson & Sundin, 2008 Persson & Sundin, 2008) An all-consuming battle that becomes an ongoing part of the family’s daily life necessitating constant reorganization (Persson & Sundin, 2008). Family members struggle with accepting the diagnosis and treatment plan, working with the provider, enacting supporting and caring roles, in the present and in the unknown future, maintaining normalcy in family life while coping with the reality of the illness, and the reactions of others to the illness (Goodew, Isaacson, & Miller, 2013). · Discuss the diagnosis and treatment plan, working with the provider, enacting supporting and caring roles now and in the unknown future, maintaining normalcy in family life while coping with the reality of the illness, and the reactions of others to the illness (Goodew, Isaacson, & Miller, 2013) · Assess family struggling and ways to support the family

(Boss, 2002; McCubbin, & McCubbin, 1993; McAdam, Fontaine, White, Dracup & Puntillo, 2012; Werner & Frost, 2000) Pressure or tension in the family system. A change in the family equilibrium with the degree of stress depending on family’s perception and appraisal of the situation (Boss, 2002). A state in which family resources are challenged by the environment and endanger family integrity (Kazak, 1992). Explore the perception of threat and the meaning of an event; then, intervene based on findings · Identify individual and family unit perception of resources · Explore individual and family unit perception of support · Create opportunities for nurse to be viewed as resource · Diligently provide consistent information · Use therapeutic questioning techniques, examples: “How can we be most helpful?”, “What is one question you would most like answered during our time together?” (Wright & Leahey, 2013)

(Black, & Lobo, 2008; Walsh, 2003; Weihs, Fisher,& Baird, 2002) The “ability of a family to respond positively to an adverse event and emerge strengthened, more resourceful and more confident” (Benzies & Mychasiuk, 2009, p. 103; McCubbin & McCubbin 1993). Resiliency is fostered by protective factors and inhibited by risk factors. Protective factors transform responses to adverse events so that families avoid possible negative outcomes (Weihs, Fisher, & Baird, 2002). Affirm family strengths and competence · Identify protective behaviors, as well as risk factors within and outside the family unit that influence health · Commend family strengths and praise efforts to meet needs · Identify ways family can access resources · Identify who helps the most with family’s greatest challenges · Explore families’ constraining beliefs that negatively influence health and resilience · Explore families facilitating beliefs that positively influence health and resilience · Implement actions that balance threats and resources · Identify spiritual or religious beliefs and sources that are viewed as helpful to the family · Encourage family discussions about conflicts and differences

(Eggenberger, Meiers, Krumwiede, Bliesmer, & Earle, 2011) Family reintegration within a chronic illness experience relates to the family’s capacity to adapt to reality and make choices, transforming the reality of a chronic illness in an iterative pattern across the lifecycle of the family (Meiers, Krumwiede, Eggenberger, 2016). A family reintegrates not to some form or pre-existing model but to an integrated system that can manage the chronic illness over time while the family evolves simultaneously with its own identity, values and personality (Eggenberger,. Eggenberger, Meiers, Krumwiede, Bliesmer, Earle, 2011). · Explore family changes in processes and routines with illness · Guide family in adjusting and developing new family processes · Encourage family processes that support family health

(Anderson & Tomlinson, 1992; Clarke-Steffen, 1997; Krumwiede, Meiers, Bliesmer, Eggenberger, Earle, Murray, Harman, Andros, & Rydholm, 2004; Tomlinson, Peden-McAlpine, & Sherman, 2012) Walsh (2007, p. 209) states a family experience can include the following losses: · sense of physical or psychological wholeness (e.g., with serious bodily harm); · significant persons, roles, and relationships; · head of family or community leader; · intact family unit, homes, or communities; · way of life and economic livelihood; · future potential (e.g., with the loss of children); · hopes and dreams for all that might have been; shattered assumptions in core worldview (e.g. loss of security, predictability, or trust).

(Wiegand, Deatrick, & Knafl, 2008; Knafl & Deatrick, 2003; Knafl, Deatrick, & Havill, 2012) Patterns or typologies of family response to health care challenges (Knafl & Deatrick, 2003). Component of the Family Management Style Framework include the situation, management behaviors, and sociocultural context. The subjective meaning family members defines the situation while the management related to efforts directed toward caring for the illness and family while sociocultural context defines how the family manages the situation (Knafl & Deatrick, p. 2003, p. ---“the family’s role in actively responding to illness and health care situations” (Deatrick & Knafl, 1990, p. 2). · Explore family strengths and praise efforts to meet needs and identify family concerns · Explore family members: Definition of the situation Management behaviors Perceptions of the consequences of the family member’s health condition for family life · Explore sociocultural contexts of the family management processes: Extended family Societal view of situation Social network · Discuss perceptions of the individual family members and family member with health concerns · Examine individual and family unit functioning · Identify management of family: Progressing, accommodating, maintaining, struggling, and floundering · Identify the underlying families structure and function that influence the health and illness experience and can be embraced to promote health

(Carr, 2014; Carr & Clarke, 1997) Family member’s experience of staying with and nearby a family member hospitalized with an illness or managing an illness experience. Categories of the meaning of vigilance include: a commitment to care, resilience, emotional upheaval, dynamic nexus and transition (Carr, 2014). Family’s belief and desire to protect their family member and safeguard outcomes contributes to family vigilance. Caregiver’s continual oversight of the care recipient ‘s activities with a sense of watchfulness, guarding, being there, and protective intervening (Mahoney, 2003) · Demonstrate an empathic understanding of family’s need for and purpose of vigilance · Support and encourage a family’s presence · Offer ways to support vigilance (e.g make sleeping arrangements with family) · Reassure family a caring presence of a nurse is available and helping the family protect the family member; but, do not expect family to disregard their responsibilities. · Engage the family in a partnership in caring for the family member with an illness. · Develop trusting relationship with the family to decrease their stress. · Strengthen family member’s resilience in illness experience.

“the intentional intimidation, physical and/or sexual abuse, or battering of children, adults or elders by a family member, intimate partner, or caretaker” (Alpert, Cohen, & Sege, 1997, p. 53) Family violence can encompass child abuse and neglect, violence among partners and elder abuse (McDaniel, Campbell, Hepworth, & Lorentz, 2005; Segrin & Flora, 2011). Abusive families often lack the internal controls to create a safe environment and a significant power differential may exist that increases the risk of violence. An abuse of power contributes to an emotional or physical environment that is not nurturing for family members. · Screen for safe family environment · Recognize signs of abuse and assess family to rule out abuse · Ask about specific behaviors · Mobilize a safety network for the family · Acknowledge a range of conflict and difficulties in relationships · Initiate the work of change and healing · Launch referral system to obtain help · Interview family members individually · Ask questions in nonjudgmental, nonthreatening manner · Ruther assess use of substances · Develop safety plans as needed (McDaniel, Campbell, Hepworth, & Lorentz, 2005; Rizo, Macy, Ermentrout, & Johns, 2011).

(Meleis, 2010) The period in which a change is perceived by a family member or others; denotes a change in needs, health status, expectation or abilities that require new knowledge or change in behaviors (Meleis, 1986; 1991). Often characterized by changes in social support; loss of reference points; new needs or changes in prior needs (Meleis, 2010, p. 42). Explore individual and family events and development creating family transitions · Discuss family patterns that are being disrupted · Assess change occurring within the family that may influence the health and illness experience · Identify key family celebrations and routines that should be recognized · Explain environments and elements of the experience · Assist family to plan for transitions · Explore what information would be the most helpful at this time · Assume the role of family advocate when necessary (Eggenberger & Nelms, 2007) · Help family advocate for their ill family member (Meiers & Brauer, 2008) · Acknowledge the family’s sense of feeling wounded (Goetzke, Parks, & Person, 2014)

(Eggenberger, Krumwiede, Meiers, Bliesmer, & Earle, 2004; Leffers, Martins, McGrath, Brown, Mercer, Sullivan, & Viau, 2004) Family vulnerability is the sense of the possibility of being physiologically or psychologically exposed and/or having a sense of being at risk, and of being unprotected, unguarded, defenseless, or easily wounded (Purdy, 2004). The chance of being susceptible or liable to unexpected or adverse outcomes leaves the family with a sense of openness to influences in the context of CI (Goetzke, Parks, & Peterson, 2014).

(Lindholm, Eriksson, 1993; Marshall, Bell, Moules, 2010; Wacharasin, 2010; Wright, 2005, 2008; Wright & Bell, 2010; Wright & Leahey, 2013) “…physical, emotional, or spiritual anguish, pain or distress. Experiences of suffering can include illness that alters one’s life and relationships as one knew them; forced exclusion from everyday life; the strain of trying to endure; longing to love or be loved; acute or chronic pain; and conflict; anguish, or interference with love in relationships.” (Wright, 2005, p. 3). Suffering has also been defined as “the state of severe distress associated with events that threaten the intactness of the person” and the family unit (Cassell, 1991, p.33; Wright and Leahey, 2013). · Use relational and communication skills to develop a trusting relationship between nurse and family · Explore individual family member’s and family unit thoughts, emotions, beliefs about suffering in the family · Dialogue about cultural and religious beliefs that could provide peace and support · Family meetings and dialogue to increase family interaction and induce understandings and provide family support · Find ways to empower family · Engage in dialogue that facilitates family finding meaning in suffering · Search for new meanings in suffering · Create and invite therapeutic conversation with family members · Invite family stories of suffering · Acknowledge suffering in the family · Seek means of support for each individual family member and unique family · Use therapeutic questioning techniques, examples:” How can we be most helpful?”, “Who do you believe is suffering most and needs the most support?”, “What is one question you would most like answered during our time together?” (Wright & Leahey, 2013).

Family composition and context of the family (Wright and Leahey, 2014). Internal structure includes family composition, gender, rank order, sexual orientation, subsystems and boundaries (Wright and Leahey, 2014, p. 54). External structure includes extended family and larger systems (Wright and Leahey, 2014, p. 64). Develop and discuss genogram and ecomap with family · Conduct a brief 15 minute interview including therapeutic conversation (Svavarsdottir, Tryggvadottir, & Sigurdardottir, 2012; Wright & Leahey, 2013; Wright & Bell, 2009)

(Boykin, & Schoenhofer, 1991; Moules, & Streitberger, 1997; Crogan, Evans, & Bendel, 2008) Family storytelling shares family histories among a family unit and family generations. Family stories often share family experiences of people, places, and events as related to the members of family or their ancestors and their experiences (Moules, & Streiberger, 1997). Stories reflect and shape the beliefs, experiences, interpretations and meanings of families (Moules & Streiberger, 1997). · Allow the family to share past life experiences that affect the health experience · Encourage the family to express suffering throughout the illness experience · Promote healing processes through family storytelling · Encourage a family to share their illness experience and narrative (Wright, Watson, Bell, 1996). · Show attentive listening to family stories (Wright, Watson, Bell, 1996). · Acknowledge and respect family stories Wright, Watson, Bell, 1996).

(Cavanaugh, Eastwick, & Kronebusch, 2014; Gregory, 2005; Weihs et al., 2002; Patterson & Garwick, 1994). Family relationships include the everyday interactions of communicating, connecting, and cooperating within the family that have an intimate and emotional intensity that persists over time (Cavanaugh, Eastwick, & Kronebusch, 2014; Gregory, 2005; Weihs et al., 2002; Patterson & Garwick, 1994). · Facilitate family communication, time for connections, and opportunities for collaboration and collaboration to accomplish family and illness management tasks (Cavanaugh, Eastwick, & Kronebusch, 2014)

(Goodew, Isaacson, & Miller, 2013). Family pondering (FP) FP in the context of chronic illness refers to reflecting upon the past and potential future meaning of the illness in family life and analyzing the impact of the illness on the family (Goodew, Isaacson, & Miller, 2013). · Explore the thinking and concerns of family · Invite the family to tell the diagnosis story and project to the future

Family growth includes making positive changes and cognitive rebuilding as a result of the struggle of a traumatic or challenging event such as the diagnosis of CI (Cavanaugh, Eastwick, & Kronebusch, 2015; Tedeschi & Calhoun, 2004). · Encourage the family to tell their illness, health, or developmental transition story · Assist the family in setting and/or re-setting family goals in the context of the current and projected future health experience

Family financial concerns present as levels of anxiety, stress, and distress related to financial obligations caused by the Chronic Illness for the family (Goetzke, Parks, & Peterson, 2015). · Explore concerns regarding the ability to financially manage throughout the illness (Goetzke, Parks, & Peterson, 2014). · Acknowledge the potential for social deprivation of family members due to the costs of managing illness (Goetzke, Parks, & Peterson, 2014). · Use active listening to determine family financial concerns and propose potential solutions that fit the family’s context and goals

The family response and experience occurring with health and illness. (Eggenberger & Nelms, 2007; Davidson, 2009; Hyman & Corbin, 2001; Corbin & Srauss, 1988; Meiers & Tomlinson, 2003) · Assess the change occurring within the family that may influence the health and illness experience · Assist family members to communicate regarding their individual experiences with the illness · Explore the family unit health and illness experience · Examine meanings of being a family during this illness experience for each family (Eggenberger & Nelms, 2007) · Acknowledge family illness experience (Eggenberger & Regan, 2010) · Help families construct meanings from life and illness experience

(Bay & Algase, 1999) “a …motivated state where …threat guides behavior. ..A defensive response to perceived threat or result of exposure to an environmental reminiscent of the original fear experience.” Critical attributes include a focus on the threat and behavioral change with feelings of dread, scared and frightened (Bay & Algase, 1999). Acknowledge the illness experience may pose fear and threats to the family unit and individual family member · Create opportunities for nurse to be viewed as resource · Use nurse presence techniques of eye contact, appropriate touch, and reassuring voice · Encourage discussion regarding fears of the individual and family experience · Provide assurances and explanations · Provide thorough explanations of environment and event · Reassure family that fear is understandable and expressing fears may be helpful · Empower family members to search for protective factors · Take actions to minimize fear from family waiting, uncertainty, and distresses

(Krumwiede, Meiers, Bliesmer, Eggenberger, Earle, Murray, Harman, Andros, & Rydholm, 2004) Process of family seeking information and appraising the meanings of occurrences and information about illness event to better understand the situation; a family caring strategy that often includes questioning members of their family and other families, as well as health care providers in an effort to help understand the illness event (Eggenberger, Meiers, Krumwiede, Bliesmer & Earle, 2004). Use “one question question” technique to elicit family concerns (Wright & Leahey, 2013) · Provide consistent and ongoing information to family and guide family in the interpretation · Respond to questions with honest, direct, and clear information · Explore current family understandings and interpretations of events, data, environment, and experiences · Provide mechanism for family to access information (e.g., consistent nurse, telephone support, valid internet resources, brochures) · Acknowledge uncertainty and threat of the situation · Acknowledge value of family group gathering information (e.g., emphasize the importance of different family member perspectives on the situation)

Loss in a family has numerous related definitions that relate to grief, loss, bereavement, and complicated grief, ambiguous loss, and chronic sorrow (Holtslander & McMillan, 2011; Walsh, 2007; Boss, 2006; Boss, Doherty,LaRossa, Schumm, & Steinmetz, 1993; Burke, & Hainsworth, 1998; Isaakson & Ahlstrom, 2008 ). Walsh (2006) suggests health care professionals mobilize the capacity for healing and resilience in families and communities experiencing a loss (Walsh, 2003, 2006). · Variables in the loss situation that require careful assessment and attention (Walsh, 2007, p 209): · Time of Death-Untimely losses such as parents’ loss of young children requires reorganization of the family system. · Sudden death-Sudden losses shatter a sense of normalcy and predictability. Shock, intense emotions, disorganization, and confusion are common and family members may have regrets. · Prolonged suffering with Loss-Prolonged physical or emotional suffering before death increases family agony. · Ambiguous loss-Physical or psychological absence of a family member. Either a body or the psychological presence of an family member. Unclarity about the fate of a missing loved one can immobilize families who may be torn apart, hoping for the best yet fearing the worst (Boss, 1999). Mourning may be blocked until remains or personal effects are recovered. · Stigmatized losses-Mourning is complicated when losses or their causes are disenfranchised (Doka, 2002), hidden because of social stigma and secrecy. · Pile-up effects. Families can be overwhelmed by the emotional, relational, and functional impact of multiple deaths, prolonged or recurrent trauma, and other losses (homes, jobs, communities) and disruptive transitions (separations, migration). · Past traumatic experience-Past trauma or losses, reactivated in life-threatening or loss situations, intensify the impact and complicate recovery. · Assist family as they attempt to find meaning in loss (Boss, 2006). · Guide families in reconstructing meaning in way that enables them to function (Neimeyer, 2001; Eggenberger, Meiers, Krumwiede, Bliesmer, & Earle 2011). · Help families find spiritual connections, memories, deeds, and stories that are passed on across the generations (Walsh & McGoldrick, 2004) · Guide individual family members in exploring the past, present and future functioning · Assist family members as they identify individual and family past strengths and develop sources of support. · Help individual and family express understandings about the meanings of loss and identify specific ways to manage uncertainties over time. · Discuss with family a chronic sorrow experience of Recurring and pervasive loss with no predictable end (Eakes, Burke, & Hainsworth,1998) · Arrange and guide family discussions of perceptions, experiences and beliefs related to the loss. · Encourage families to Share acknowledgment of reality of losses and experiences of loss and living · Clarify facts · Plan tributes and rituals within their belief system (Walsh , 2007) · Assist family to Construct new hopes, dreams and realities and find new purposes (Walsh, 2007; Eggenberger, Meiers, Krumwiede, Bliesmer, & Earle 2011

(Weigand, 2008; Wiegand, Grant, Jooyoung, & Gergis, 2013) The complex and challenging family experience related to multiple issue surrounding life and death; such as legal, ethical, communication, family, decision-making and life-sustaining therapy issues. The nature of the patient’s illness, family context, and family and health care provider interactions influence decision making and family processes during this time of vulnerability (Wiegand, 2008). This experience can be overwhelming, devastating, and difficult for families (Wiegand, 2008; Tilden, Tolle, Nelson, Thompson, & Eggman, 1999). Encouraging family to dialogue about various individual perceptions of the illness experience and EOL decisions · Share and compare each individual family members beliefs about end of life care and decisions · Invite family members to use techniques of storytelling to share life experiences of the individual at end of life · Express understanding of families need for time to build consensus & acceptance surrounding EOL care · Provide opportunities for repetition of accurate and ongoing information to inform families · Give family members indicators to facilitate decision-making · Examine family management of illness experience and support for individual and family health · Identify family strengths and resources used in coping · Explore individual-family-nurse partnerships · A wholeness of the family unit with processes and functioning that supports family system (Krumwiede, Meiers, Bliesmer, Eggenberger, Earle, Murray, Harman, Andros, & Rydholm 2004; Anderson & Tomlinson, 1992).Explore family health (structure, functioning, processes)

(Eggenberger, Meiers, Krumwiede, Bliesmer, Earle, 2001). Family engagement with illness refers to the family’s view of the illness in the context of their family life and family functioning. Engagement with a chronic illness includes the family’s approach to connecting, pondering and struggling as a family experiencing and managing an illness (Eggenberger, Meiers, Krumwiede, Bliesmer, Earle, 2001). · Invite family presence and engage in use of nurse presence · Develop individual-nurse-family relationship/connection/partnership · Assess family struggling and ways to support the family · Acknowledge the work of family during illness experience · Explore the thinking and concerns of family · Discuss with family their connections with each other and the illness

(Campinha-Bacote, 2002; Giger & Davidhizar, 2002; Leininger, 2002) Racial and ethnic background, as well as the values, beliefs, traditions, routines, as well as race and ethnicity. Explore individual families cultural beliefs, routines and patterns. · Assist the health care team to provide care that honors the families culture and unique nature · Assess and recognize family cultural beliefs and influences on health