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Family Nursing

Module 2: What to focus on with family and society?

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What to include when considering family?

Social Determinant of Health
Genomics
Family Experiences

Past
Current

Ways of Being

Day to Day Activities/Routines
Communication

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Social Determinants of Health

Economic, Social, & Political policies and systems
Developmental agendas
Social exclusion
Employment
Public health programs
Women and gender equity
Early child development
Globalization
Health systems
Urbanization
Fast Facts: https://youtu.be/NwnhWJUsUnY

(World Health Organization, 2020:https://www.who.int/social_determinants/sdh_definition/en/)

“Conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life.”

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Nurses’ Role in Social Determinants of Health

Assess families’ needs: emotional, economic, employment, education, housing, mental health

Engage in policy development that decreases determinants of health

Engage in political process

Search out and provide resources available to families

Advocate for families

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Genomics

Purpose can be for an individual or family focus

Purposes of genetic testing

Prevention
Screening
Diagnosis
Prognosis
Selection of treatment/pharmacogenetics

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Genomics cont’d

Advantages of genetic testing

Relief of uncertainty
Aid in decision making
Focus on prevention
Family planning

Disadvantages of genetic testing

Increased anxiety, guilt, depression after receiving results
Knowing doesn’t eliminate risks in some cases
Reveal family secrets
Personal health confidentiality

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Family Nurses’ Role in Genomics

Help families understand risks
Help families make decisions about management or surveillance
Create a pedigree/genogram by collecting family health history
Provide resources
Individualize care

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Family Illness Experience

Suffering
Uncertainty
Struggling
Stress
Sorrow
Decision Making Distress

(Bell & Wright, 2010; Eggenberger & Nelms, 2007; Eggenberger, Meiers, Krumwiede, Bliesmer, Earle, 2011; Nelms & Eggenberger, 2010; McAdam, Fontaine, White, Dracup & Puntillo, 2012; Wacharasin, 2010; Weigand, 2008; Wright & Leahey, 2014)

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Suffering With

Physical, emotional, spiritual anguish, pain or distress

“The most awful time was watching her fighting to breathe, having severe chest pain. Her being terrified and not knowing what was going on. [Crying]…A sister continued, she was struggling to breath, it’s hard to watch her. It’s terrible seeing your own sister’s struggle.”

(Eggenberger & Nelms, 2010; Wright 2005; Wright and Leahey, 2014; Wacharasin, 2010; Bell & Wright, 2010)

Suffering an illness as a family has been explored in multiple studies. Suffering is often defined as the physical, emotional, pain or distress that can occur with a serious illness, a nurse excluding a family member, and family conflict. (Wacharasin,Wright Bell & Wright )

In my study focused on critical illness one of the family interviews included a mother, father, and sibling who described their suffering with their 27 year old sister and daughter who was moving into Adult respiratory distress syndrome:

“The most awful time was watching her fighting to breathe, having severe chest pain. Her being terrified and not knowing what was going on…having problems breathing. [mother crying]…A sister continued, she was really struggling and breathing, it’s hard to watch her. it’s a real struggle seeing your own sister’s struggle.”

Family data suggests family members want a nurse who acknowledges this suffering experience.

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Uncertainty

Uneasy and discomforting sensation that is a major stress for families �

“This is scary because that person might not be there. The idea of them being snatched from you is really hard. It is terrible not knowing what can happen in the next moment, to her and our family…You panic with the beeps and the alarms…”

“Nothing has been the same ever since, it’s just gone on; it’s been one catastrophe after another. It’s just changed our lives. It’s the constancy of it all, just going from one thing to another. We never know what is next.”

(Eggenberger & Nelms, 2010; Penrod, 2001; Hilton, 1992; Mishel, 1997; White et al., 2015)

Nursing research also explores uncertainty as a central aspect of an illness experience (Hilton, 1992; Corbin & Strauss, 1992; Mishel, 1997; Eggenberger et al, 2013). Uncertainty has been described as an uneasy and discomforting sensation that is a major stress for ill individuals and their families (Penrod, 2001Hilton, 1992) Attributes of uncertainty include complexities, unpredictability, lack of information, and ambiguity (Mishel, 1990). In my research, families consistently describe the multiple unknowns of managing illness symptoms and the predictable unpredictability of acute illness and chronic disease.

The parents and spouse of a patient in critical care study stated,

“This is scary because that person might not be there. The idea of them being snatched from you is really hard. It is terrible not knowing what can happen in the next moment, to her and our family…You panic with the beeps and the alarms…”

In chronic illness descriptive studies a family dealing with multiple sclerosis shared the constancy of uncertainty during the family interview

“Nothing has been the same ever since it’s just gone on; it’s been one catastrophe after another. It’s just changed our lives. It’s the constancy of it all, just going from one thing to another. We never know what is next”

Families want nurses to help them know what is happening, what is next and gain an understanding of the meanings of events.

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Vulnerability

Exposed, susceptible, unprotected, unguarded, defenseless, open to attack, or easily physiologically or psychologically wounded �

“It’s a lifetime thing. Our family has been dealt cards that we did not want, we can’t give back. We are just waiting for the next shoe to drop. It just seems overwhelming and don’t know how we will handle the next thing. Having a nurse who cares about us makes all the difference.”

(Goetzke, Parks, & Peterson, 2014; Purdy, 2004)

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Stress and Demands

Challenges by an environment that overtake resources and threaten well-being and health

“This is scary because that person might not be there. The idea of them being snatched from you is really hard. You get really close to death and it is terrible. We didn’t think she would make it through the night and that was really hard. This is hell. Knowing that the worst can happen in a moment, to her and our family…You panic with the beeps and the alarms…”

The stress of a critically ill father on a 13 year old son was evident when he said,“ Without anyone telling me I knew it. I have been listening to everybody and looking at machines. I know how close to the edge he is.” [His mother quickly moved to his side]

(Boss, 2002; McCubbin, & McCubbin, 1993; McAdam, Fontaine, White, Dracup & Puntillo, 2012)

Practice with families during requires nurses who understand the research related to stressful events in families. A stressor provokes change in the family system. Acute and chronic stressors with illness and the impact of the family have been studied extensively. An accumulation of stressors with illness increases the threats to the family health. Families can experience a crisis with the stress of transitions in illness that disrupts their ability to function. Both the family’s perceptions of the event and support systems have been found to be keys to the outcome. A nurse can be the source of support during stress.

One of the families in critical illness stated:

This is scary because that person might not be there. The idea of them being snatched from you is really hard. You get really close to death and it is terrible. We didn’t think she would make it through the night and that was really hard. It’s just the fear of why you are here. This is hell. Knowing that the worst can happen in a moment, to her and our family…You panic with the beeps and the alarms…”

The stress of a critically ill father on a son was evident when he said,

“ Without anyone telling me I knew it. I have been listening to everybody and looking at machines. I know how close to the edge he is.” [His mother quickly moved to his side]

What do these family experiences during illness mean for our practice?

We are practicing with families who are stressed, families dealing with uncertainties in an environment where they feel vulnerable, and families where there is conflict. Yet, we often need these families to make decisions and want families to be able to remain supportive and make decisions together.

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Struggling Together

Expending energy to make one’s way with difficulty�

“ We are all here together and we are doing this together. Being together is helping our family. It’s just more comforting to know we have somebody and we are in this together.”

“They always ask if we have any questions and we don’t even know what to ask. So much fog. A lot of mixed messages. Our family does not always see it the same, and sometimes we don’t even know what to say to each other or the nurse.”

(Abate, 2004; Goodew, Isaacson, & Miller, 2013; Eggenberger & Nelms, 2010)

Families during an illness experiences also tell their stories of being a family together during this illness, but also their conflicted experience of being together. Struggling with an illness becomes an all-consuming battle that requires energy from a family, to make their way and accept the diagnosis, work with providers, and reorganize their family life.

“We are all here together and we are doing this together.

“Being together is helping our family. It’s just more comforting to know we have somebody and we are in this together.”

“They [referring to nurses] always ask if we have any questions and we don’t even know what to ask. So much is a fog. A lot of mixed messages. Different people saying different things and it is torture for us. Our family does not always see this situation the same, sometimes we don’t even know what to say to each other or the nurse.”

Families report wanting nurses who help them be together as a family, manage their conflict and talk with each other.

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�Nurse-Family Communication

(Holm, Begat, Severinsson, 2009; Hupcey, 1998; Nelms & Eggenberger, 2010; Vandall Walker, 2012; Chesla & Stannard, 1997; Davidson, 2009; Knafl & Deatrick, 2014; Le Grow & Rossen, 2005; Saveman, Benzein, Engsrom & Arestedt, 2011; Davidson, 2009; Davidson, Jones & Bienvenu, 2012)

Provides Support
Guides Family
Supports Coping
Reduces Distress
Softens Suffering
Improves Patient and Family

Outcomes

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References