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Family Health Care Nursing Theory Practice 5 Ed by Joanna Rowe Kaakinen, Deborah Padgett Coehlo – Test Bank
Chapter 6 Relational Nursing and Family Nursing in Canada This chapter introduces the concept of relational nursing, the patterns of understanding and assessing the importance of relationships to support optimal health. The authors describe Canada’s historical, geographical, cultural, economic, political, and social diversity as context for the practice of family health care nursing. They stress the need for nurses to broaden their understanding of context from one that defines context as external elements that surround people to one that views contextual elements (geographical, socioeconomic, family, and cultural histories) as integral to a person’s personality and physiology. The chapter describes the character of families in Canada today, including changing family structures and the conflicts that can be created between present reality and historical idealization of traditional family structure and roles. It examines risks for health disparities within and among families, risks for family violence, and risks for families living in poverty and with substance abuse to assist family nurses in taking into account the contextual nature of family health and illness experiences. The case study portrays challenges family health care nurses in Canada face and offers students the opportunity to practice incorporation of relational inquiry as a valuable approach to family nursing. It emphasizes reflexivity, the process of considering one’s own context and experiences, and how these affect the nurse’s care for others. Critical Concepts
- Relational inquiry rests in a socio-environmental understanding of health and health promotion (World Health Organization, 1986). A socio-environmental understanding of health incorporates sociological and environmental aspects, as well as medical and lifestyle choices. Thus, a person’s or family’s capacity to define, analyze, and act on concerns in
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Instructor’s Guide one’s life and living conditions joins treatment and prevention as an essential goal of family nursing practice.
- Families, health, and family nursing are understood to be shaped by the historical, geographical, economic, political, and social diversity of the particular person’s or family’s context. By purposefully working with this diversity when providing care, nurses are prepared to take into account the contextual nature of people’s or families’ health and illness experiences, and how their lives are shaped by their intrapersonal, interpersonal, and contextual circumstances to provide more appropriate care.
- Context is not something outside or separate from people; rather, contextual elements (e.g., socioeconomic circumstances and familial and cultural histories) are literally embodied in people and within their actions and responses to particular situations.
- Similar to other Western countries, Canada is prosperous but has a significant and growing gap between rich and poor, along with a biomedical- and corporate-oriented health care system.
These influences shape Canadians’ health, experiences of family, and experiences of health care and nursing care. By understanding how these economic and political influences shape family experiences and nursing situations, nurses can promote health more effectively.
- Dominant expectations and discourses about families in Canada are similar to those of other Western countries. These expectations and discourses shape Canadians’ health, their experiences of family, and their experiences of health care and nursing care. By examining how families and nurses themselves draw on these expectations and discourses, nurses can improve their responsiveness to families.
- Multiculturalism is part of Canada’s national identity and is enshrined in Canadian state policy. Multiculturalism is understood in Canada to promote equality and tolerance for
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diversity, especially as it relates to linguistic, ethnic, and religious diversity. Tensions exist between this understanding and the lived experiences of families, however, particularly those who are racialized, do not have French or English as their first language, and are from nondominant religions. Racialization refers to the social process by which people are labeled according to particular physical characteristics or arbitrary ethnic or racial categories, then dealt with in accordance with beliefs related to those labels (Henry, Tator, & Mattis, 2009). Nurses who understand these tensions and how they shape families and experiences are better prepared to provide responsive nursing care.
- As a colonial country, Canada has an evolving history of oppressive and genocidal practices against Canada’s indigenous people, and an evolving history of varied immigration practices. Understanding how migration and colonization affect both indigenous and newcomer families, and the health and lives of people within those families, is fundamental to providing effective family nursing care.
- Competent, safe, and ethical family nursing involves taking the intrapersonal, interpersonal, and contextual aspects of families’ lives into account. Nurses also need to consider how their own contexts shape their understandings and responses to particular families and situations. Together, these actions enable nurses to tailor their understanding and care to the specific circumstances of families’ lives and mitigate the possibility of making erroneous assumptions about the families they serve.
- Without a careful consideration of context and its influence on families’ health and illness experiences, nurses typically draw uncritically on stereotypes in ways that limit possibilities for families they serve. By inquiring into the context of families’ and nurses’ own lives, nurses are able to provide responsive, ethical, and appropriate care.
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Review of Key Terms Aboriginal culture: The Aboriginal people refer to the native tribes that were present in Canada before the European presence. The Aboriginal people lived in numerous tribes and villages, and had local governments rather than the centralized governments used in Europe. Many of the traditions and cultures are carried out today, although many native languages and customs are being lost. Canadian health care: The health care system for all Canadian citizens that provides medical care that is necessary. This health care system is funded 70% by the government and 30% by private funds. In spite of universal care, discrepancies remain, especially for those living in rural locations and those unable to afford supplemental medical insurance. Context: Not to be thought of merely as something that is outside of (external) to people but as integral to their persons and their lives. Socioeconomic, family, and cultural factors shape not only a person’s external circumstances but also his or her actual physiology and personality. Nurses are encouraged to view context as embodied within people and their actions and responses in particular situations. Ethno-cultural diversity: The variety of ethnic backgrounds, cultures, and traditions within a geographical location. Eurocentric view of family: The belief that the normative (or traditional) family includes two married heterosexual parents and their biological children. Family violence: Statistics Canada (2006) said that 7% of females and 6% of males experienced spousal violence within the past five years. Similar to the United States, violence against women, who comprise 81% comprise of intimate-partner violence victims, is more severe. The Canadian Copyright © 2015. F.A. Davis Company
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Incidence Study of Reported Child Abuse and Neglect estimated a rate of 21.52 maltreatments per 1,000 children (Public Health Agency of Canada, 2001), and authorities believe these figures to be grossly underestimated. Almost 2 percent of older adults indicate they have experienced more than one type of abuse. Elderly abuse and neglect encompass intimate-partner violence that continues into older adulthood along with other forms of abuse and neglect that arise as people’s vulnerability increases with age. Linguistic diversity: A diversity or variety of languages spoken across a specific geographical location. Multiculturism: The presence of multiple cultures within one geographical area, which promotes equality and tolerance for diversity, especially linguistic, ethnic, and religious diversity. Racialization: The social processes by which people are labeled according to particular physical characteristics or arbitrary ethnic or racial categories and then related to in accordance with beliefs based on those labels (Henry et al., 2009). Racism has significant health effects, especially regarding the health issues of hypertension and other chronic diseases (Kreiger, Chen, Coull, & Selby, 2005), mental health disorders (Borrell, Kiefe, Williams, Diez-Roux, & Gordon-Larsen, 2006), and low birth weight infants (Mustillo et al., 2004). Reflexivity: Intentional and critical reflection on one’s own understanding and actions in the context of nursing care. Substance abuse: Most problematic in Canada is alcohol abuse. Collin (2006) has identified 17% of current drinkers as high-risk. Rehm et al. (2006) estimated that 9 percent of all Canadian disease and disability relates to alcohol use or abuse. Violence and neglect in families are also associated with substance abuse and addiction (Rosenthal & Gladstone, 2000). Copyright © 2015. F.A. Davis Company
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Quiz and Exam Questions
- The smallest unit of culture is:
- The process of a nurse becoming aware of his or her own cultural values and beliefs is considered:
- cultural classification.
- Factors that contribute to differences in health status in various cultural groups include all of the following except:
- inadequate access to preventive and basic health care resources.
- family and personal lifestyle differences.
- exposure to environmental hazards.
- personality differences.
- income inequality and increasing unemployment.
- Which of the following types of families are more likely to experience poor health within their family?
- Lower-class families
- Middle-class families
- Upper-middle-class families
- Economically affluent families
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- Women’s participation in the labor force has contributed to all of the following changes in family roles, power relationships, and communication patterns except:
- more open communication.
- greater sharing of child care roles in family.
- less sharing of power in marital relationships.
- sharing of the breadwinner role between husband and wife.
- Families who live below the poverty line are at greater risk for experiencing which of the following?
- Poor health status
- Lack of access to health services
- Greater mortality rates
- All of the above
- Traditional values refer to:
- cultural values abandoned on moving to a new culture.
- values based on the family’s cultural background.
- values adopted from the dominant culture.
- values based on society rather than culture.
- Have students discuss in small groups how their family’s ethnic and cultural background affects their family structure and functions, health beliefs and practices, and ways in which their own family copes with illness. Have students share examples of what their
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Instructor’s Guide family does to maintain health and prevent illness, home remedies and common folk medicines used to treat illness, or their use of traditional healers. Discuss experiences where health care has either conflicted with or accommodated their family’s health beliefs and practices. Have students compare similarities and differences of families from different cultures and ethnic groups in dealing with these issues. Case Study and Discussion Questions Sharon’s Story After several years of experience in a pediatric medical unit, Sharon has begun to work in a pediatric diabetic teaching clinic. She just completed her 1-week orientation and this morning is about to do an intake on two families new to the clinic. It is clinic policy to have a half hour appointment for intakes and 15 minutes for subsequent appointments. Families usually attend the clinic for about three or four sessions, biweekly, depending on their needs. The referral information Sharon has on the two families is as follows: Family 1: Justin Henderson, 11 years old, is from Stony Life Reserve (designated land for Native Americans). Justin has been newly diagnosed with diabetes. He began an insulin regimen on Tuesday (3 days ago) that the general practitioner in a walk-in clinic close to where he lives ordered; Justin was referred to the clinic for diabetic teaching and counseling. This is his first visit to the clinic. Family 2: Greg Stanek, 12 years old, is from Belcarra. Greg has been newly diagnosed with diabetes. His insulin regimen was started yesterday by the family’s general practitioner, who referred Greg to the clinic for diabetic teaching and counseling. This is his first visit. Copyright © 2015. F.A. Davis Company
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Instructor’s Guide Justin’s appointment was scheduled for 9:00, but he does not arrive on time. At 9:15, Sharon decides to see her other new client, Greg Stanek, because he and his father arrived early. Greg seems small for his age; he is thin and looks quite pale. He is very quiet and barely looks at Sharon. Greg’s father speaks with heavily accented English that Sharon recognizes as Czech, in part because she associates Belcarra with the large community of people who emigrated from the Czech Republic. Sharon does a brief physical assessment, noting that Greg is 4’8″ but weighs only 41 kg (about 90 pounds). Sharon attempts to take the family history as outlined on her intake form, but Greg’s father wants to address the fact that he cannot bring his son to the clinic. Greg’s father tells Sharon that he was just laid off from his job as a carpet layer and is required by unemployment insurance policies to be searching for work. Mr. Stanek says bitterly that when he came to Canada he had been promised he could find work in his field as a mining engineer. Greg’s mother works in a local meat-processing plant, and she cannot take time off to bring Greg to the clinic without risking the loss of her job. Sharon reinforces with the father how important it is for Greg to learn about his diabetes and how to manage it, and how important supportive family is. Mr. Stanek becomes annoyed and insists that they cannot come to the clinic again. As Greg’s father becomes more frustrated, Sharon finds it more difficult to understand what he is saying because of his heavy accent and rapid talking. Sharon tries to engage Greg by asking him how he is feeling and how it is going at school, but Greg answers Sharon’s questions by shrugging and saying “OK.” Greg’s father attempts to return the conversation back to his own concerns. Eventually, Sharon says that she will “see what she can do.” The half hour clinic visit ends with little of the intake form completed, all parties feeling frustrated, and no follow-up appointment scheduled. As Sharon Copyright © 2015. F.A. Davis Company
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walks out of the room, the clinic receptionist lets her know Justin and a woman, who turns out to be his grandmother, have been waiting to see her for their appointment. Sharon reviews what she knows about Justin from reading his intake information. She remembers that the Stony Life Reserve is located several hours from the hospital in which her clinic is located and that Jackson is a small town near the reserve. Sharon wonders how Justin and his grandmother got to the clinic today. As she walks into the room, Sharon apologizes for keeping them waiting and asks if they drove to the appointment. Justin’s grandmother says one of her brothers drove them because the appointment was too early to be able to come by bus. She also shares that she had to borrow money to pay her brother for gas. Sharon does a brief physical assessment on Justin. Justin, like Greg, barely looks at Sharon, even when she is addressing him directly. Justin appears somewhat overweight, as does his grandmother, and on assessment Sharon notes that he is 4’5″ and weighs 55 kg (121 pounds). With Justin and his grandmother, who introduces herself as Rose Tarlier, the intake assessment goes more smoothly for Sharon. Mrs. Tarlier tells her that she has had custody of Justin and his two younger sisters since he was 4 years old and the sisters were infants. She shares with Sharon that Justin’s mother, her daughter, has had problems with alcohol for many years, is now living in Montreal, and has not seen her children for several years. Mrs. Tarlier makes it a point to tell Sharon that she herself has been “clean and sober” for more than 20 years. As Sharon continues with the intake assessment, she finds out that Justin’s grandmother gives Justin his insulin and helps him check his blood sugar. Sharon listens as the grandmother describes what she has been doing, and Sharon provides positive feedback and encouragement. Although Sharon tries to bring Justin into the conversation, he does not look at her and does not answer her questions. Sharon reviews what subsequent appointments will cover, and thinking about the distance and gas money, asks if they Copyright © 2015. F.A. Davis Company
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Instructor’s Guide need one longer appointment next week rather than the usual two short ones a week apart. She schedules the next appointment. Taking a Relational Inquiry Stance Attending to context begins by taking a relational inquiry stance to understand what is meaningful and significant to a particular family, and inquiring into the family’s current experience and the contextual intricacies shaping the family’s life. In taking this stance with the two families in the earlier story, what becomes immediately apparent is the way that contextual forces have contributed to and are shaping each family’s situation. For example, although Justin’s family may want to live in the Aboriginal community for cultural and social reasons, they may have little choice for economic reasons. Justin’s grandmother may well be one of many Aboriginal women living on low income or in poverty. At the time of the 2001 census, based on before-tax incomes, more than 36% of Aboriginal women, compared with 17% of non-Aboriginal women, were living in poverty (Townson, 2005). High rates of poverty among Aboriginal people have overwhelming effects on health, with the life expectancy of Aboriginal people being 7 years less than the overall Canadian population. Also, as Townson noted, there are almost twice as many infant deaths among Aboriginal peoples compared with the national norm. As noted, Aboriginal children are much more likely to live in poverty than other Canadian children. The fact that Justin lives on a reserve may negatively influence his health care access and ability to adhere to recommendations. The matrix of policies related to Aboriginal people in Canada has ensured that many reserve communities have been denied access to traditional foods (fish, game, and naturally growing plants) and have substandard housing, poor water supplies, and insufficient income opportunities. Justin’s grandmother’s attendance at residential school, Copyright © 2015. F.A. Davis Company
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both his mother’s and grandmother’s experiences with alcohol, and the current situation with Justin’s grandmother being his primary caregiver present a clear example of the impact colonization has on family well-being. Historical colonizing policies and practices in Canada included the creation of the Indian Act; removal of entire communities onto reserves, often with insufficient resources to sustain the community; government appropriation of Aboriginal lands; forced removal of children into residential schools; outlawing of cultural and spiritual practices; and widespread discriminatory attitudes toward Aboriginal peoples. The effects of colonization continue to shape people’s health, social, and economic status today (Kubik, Bourassa, & Hampton, 2009). Colonizing practices continue as Aboriginal people are racialized by wider society and governed by race-based policies, including those related to land ownership, banking, and health care. Although Justin and his grandmother’s situation may not reflect all these contextual challenges, this historical and current contextual backdrop shapes their situation and responses to health care providers, including their willingness and ability to attend the clinic. Moreover, the challenges they face accessing the clinic (e.g., appointment times that are out of sync with bus schedules, having younger children to care for, and the cost of travel) may make coming to the clinic seem less than positive in terms of the effect on Justin’s and the family’s overall health. Similarly, multiple factors have shaped Greg’s family experience. Both parents are facing significant job insecurity. The family has experienced immigration laws and policies that limit employment opportunities and contribute to the “downward mobility” many well-educated immigrants experience. As described, children in recent immigrant families and racialized families are most likely to live in poverty because of overrepresentation of racialized groups in Copyright © 2015. F.A. Davis Company
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low-paying jobs, market failure to recognize international work experience and credentials, and racial discrimination in employment (2011 Child Poverty Report Card, First Call, 2011). Canada is a country of considerable ethnic diversity, but despite national commitment to tolerance and multiculturalism, racialized groups experience considerable discrimination both in policies and institutions and in the attitudes expressed toward them at an interpersonal level. Was this playing out during the clinic visit? Although it may not have been Sharon’s intent to be discriminatory, the way in which she disregarded the contextual reality of Mr. Stanek’s employment and its implications for future clinic visits and the frustration she felt toward him were forms of intolerance. Taking a stance of inquiry to attend to context would have enabled Sharon to be aware of the likelihood of discriminatory experiences and of their potential health effects. Listening and Paying Attention to Experience and Context Attending to context involves listening carefully to families, and to what is meaningful and significant within the current context of their lives. For Justin and his grandmother, who live in a rural setting, and for Greg’s family, where both parents need to work, it becomes apparent that geography, economics, and health intertwine intricately. For example, although for Sharon what is most significant is getting Greg’s family to attend the clinic so that Greg’s diabetes can be monitored and addressed, for Greg’s father, finding and maintaining employment is of greatest concern. Moreover, the experience of being told that he would be able to work in his profession and then finding that this was not the case may well be influencing his response and willingness to engage with yet another authority and institution that does not seem to be recognizing the importance of his employment or be interested in what is most pressing for him. Although Sharon cannot address the employment concern directly within her current role (i.e., Copyright © 2015. F.A. Davis Company
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she cannot help find him a job), it is obvious that those concerns will ultimately affect Greg’s experience and management of diabetes. Thus, listening to and recognizing the interrelationship of those concerns regarding how the family will be able and willing to care for Greg and his diabetes is crucial. In fact, the well-intended clinic may be heightening health challenges for families by not considering these contextual elements. Even how clinic appointments have been structured as short, frequent sessions both affects families’ ability to attend the clinic and ignores the socio-environmental elements affecting families’ health daily. Thus, attending to family context involves also attending to the health care context. Depending on the setting of care, the nurse would have to work within that context to support more responsive care. For example, is it possible to have fewer, longer appointments? Is a longer intake visit possible—not just for Greg’s family but for others as well? Even within the prescribed time, the nurse should acknowledge what is of meaning and significance to the family. Attending to context involves acknowledging Greg’s father’s distress about his employment and inviting him to talk about what it has been like for different family members as they have sought employment and attempted to build a life with limited resources, support, or both. As part of this process, it would be important to communicate respect and genuine interest and concern, asking what might be helpful from their perspective and how the clinic could assist them in caring for Greg’s diabetes in light of the other challenges they are experiencing. On the surface, focusing on the father’s concerns might not seem to be the top nursing priority (or even relevant to diabetic care), but doing so might reduce frustration for both Sharon and Greg’s father, make better use of time, and allow them to attend to Greg’s diabetes more effectively. If Copyright © 2015. F.A. Davis Company
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the family concerns are not addressed, than Greg’s care is jeopardized, because he may not come back to the clinic. Listening and paying attention to experience and context with Justin’s family brings attention to the geographical distance between the family’s home and the clinic and raises questions about other possibilities for supporting the family in diabetes care. For example, knowing the economic statistics for Aboriginal women, the cost of travel to the clinic might have an impact on the family. If the family is on a limited income, frequent travel may be impossible and may take money from other essential needs. In response, Sharon might look into resources at the local level, such as a community health representative or local community health nurse, who might be able to provide face-to-face care to the family while liaising with the clinic so that the family does not need to travel such a great distance so frequently. Overall, attending to context sets one up to be curious and interested and to inquire rather than make judgments and assumptions based on surface characteristics and behaviors. For example, both Greg and Justin were quiet, did not make eye contact, and did not respond very much to Sharon. Rather than making assumptions about the children based on her own location and context, Sharon might intentionally reflect on the contexts in which they have been living recently. As a result, she might view their responses through a range of possibilities, including everything from wondering about the physiological effect of diabetes, to the immediate effect of the diagnosis of diabetes, to the experience of coming to the clinic for the first time, to the multiple contextual experiences and challenges they and the family has been living with. Part of assessing the context includes the awareness of cultural differences, which affect eye contact, reaction to health professionals, reaction to genders, and behavior towards adults and elders. Attending to context can cue nurses to stay open to possibilities, gently and thoughtfully Copyright © 2015. F.A. Davis Company
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reaching out to connect with people and families as they are in the moment. Rather than focusing on behavior or lack of response as a problem or frustration, nurses view any response contextually. Nurses do not measure people and families against any norms; rather, the goal is to understand their reactions contextually and to respond in a meaningful and relevant manner, using inquiry rather than judgment. Attending to context also moves us beyond the immediate situation of particular patients to question how larger policies and structures governing our practice and agency are affecting families. That is, the contextual particularities of these families reveal limitations of the policies and structures of the clinic more generally. Clinic policies and structures might need to be changed to be more responsive to families. For example, offering home visits, evening appointments, or both for families who have both parents working and unable to make daytime appointments might enhance the clinic’s responsiveness. Similarly, seeing the family in context draws attention to the importance of working with the contexts within which the families live. This could include everything from intentionally establishing relationships with government departments and community agencies that are part of the family’s context that might liaise with the clinic in providing services and resources, to lobbying for increased access and resources for particular groups or particular services and supplies. Concerning these particular families, first, the nurse would want to optimize her ability to provide optimal care, given the restrictions within the current system. She must prioritize her care to both acknowledge the families’ circumstances and begin to support Greg and Justin within their families and those circumstances. Beyond a more flexible pattern of appointments, are there other providers who might be involved? A social worker, child and youth care worker, or other resources may be available. Ways to enhance access to health care, such as resources for Copyright © 2015. F.A. Davis Company
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transportation, may be available. The nurse would want to draw on broader social resources, such as those related to immigration and employment, resources for working parents (e.g., evening hours, weekend hours, and online care), and resources for parents (e.g., counseling, support groups, and other forms of diabetic care education, such as local classes, online classes, books, and home health services). Acknowledging Greg’s father’s concerns and supporting him through referrals will allow the nurse to integrate attention to the family while focusing on Greg and his diabetes. In so doing, Sharon will develop approaches and knowledge of resources for a range of other families as well. Reflexivity Reflexivity, meaning intentional and critical reflection on one’s own understanding and actions in context, is central to using contextual knowledge. Reflexivity draws attention to a nurse’s own contextual background, including taken-for-granted assumptions, stereotypes, and knowledge one draws on when engaging with families. Examining how a nurse’s own context and social location shapes and structures his or her nursing is a first step to attending to families’ contexts. For example, if Sharon had grown up in a rural setting or in poverty, it would be important for her to consider reflexively how those experiences influence her when working with families who share that context and social location. Her background might lead her to see herself as successful despite those constraints and to overlook how the challenges she faced and privileges she enjoyed might differ from the experiences of the families with whom she is working. Alternatively, if she had grown up in a middle-class urban setting, she may find that she is somewhat oblivious to or does not think to consider the challenges that poverty and geography raise in accessing health care. Similarly, as a nurse working within a diverse milieu, it is important for Sharon to consider how her family history might be shaping her attitudes toward Copyright © 2015. F.A. Davis Company
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immigrants, people whose first language is not English, racialized groups, Aboriginal people, and other groups. Perhaps she herself is an immigrant, perhaps she is a member of a racialized group, or perhaps she is a member of dominant groups—English-speaking, Euro-Canadian, middle class. It is important that she ask herself how her religious affiliations (or lack thereof) shape how she thinks religion is relevant to health and to her nursing practice. Although each aspect of Sharon’s social location may shape her thinking, as Applebaum (2001) noted, one’s social location “does not imply that we are inevitably locked within a particular perspective. White feminists can be anti-racist, men can be feminists, and heterosexuals can be ‘straight but not narrow.’” (p. 416). By reflexively scrutinizing our own social locations, we can examine our understandings and make explicit decisions about how to draw on (or not draw on) various views and assumptions. Examining our own contexts and social locations to see how we are limiting our views of families can be challenging. We can see more easily our own disadvantages than our privileges. For example, Sharon might have to work harder to see how her privilege as a securely employed, fluent English-speaking health care provider gives her an advantage that Greg’s father does not have. If she has experienced employment disadvantages based on her gender, she might see him as a privileged man and have difficulty recognizing the challenges he faces. Overall, reflexivity in family nursing involves developing a critical awareness of our own context and social location, scrutinizing how that context and location is shaping our view of a particular family, and intentionally looking beyond that location to consider the family within its own context. In Sharon’s situation, this would involve her examining how the rural context, economics, language, ethnicity, and religion, and her understandings of these shape how she is engaging with the families. She might ask how her own experiences of family are shaping her Copyright © 2015. F.A. Davis Company
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ability to see and accept the differing forms of family—for example, a family in which the parents are separated, such as Greg’s, and a grandmother-led family, such as Justin’s. How does her own location enable or limit her ability to understand how difficult it might be for Greg’s father and mother to get him to the clinic appointments, given their current family situation? Engaging in such reflexive examination also enables consideration of the wider socio-political elements shaping families’ experiences, like contextual factors, such as the stress of immigration, that may have contributed to Greg’s parents separating from one another. At the same time, approaching her work in this reflexive manner highlights areas where she may need to learn more. For example, how well does Sharon understand the history of the Aboriginal people with whom she is working? How well does she understand the relationship between historical trauma and diabetes? How is diabetes cared for in Czechoslovakia versus the Aboriginal culture versus the broader Canadian culture? What are the roles of children in understanding and participating in their care across these multiple overlapping cultures? Family Case Study: Attending to Context Mrs. Dickson, a 40-year-old woman admitted with a diagnosis of bowel cancer, is a single mother of four children who is experiencing post-op complications. Discharged home 3 days prior, Mrs. Dickson has been readmitted via ambulance with undiagnosed pain and extreme nausea. Her eldest daughter, Sandra (aged 21 years and married), and her third daughter, Simone (17 years of age), who are present in the room, describe how their mother collapsed at home after screaming out in pain. Throughout Mrs. Dickson’s illness, Simone, who is the eldest child at home (their middle sister lives in another city), has taken the role of primary caregiver for her mother, her 13-year-old brother, and her 86-year-old grandfather, who lives with them. As you Copyright © 2015. F.A. Davis Company
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enter the room, Sandra and Simone are sitting beside their sedated mother. They look up with strained expressions and ask whether the doctors have figured out what is wrong with their mom. What Intervention Strategies Might You Employ? A relational inquiry approach to family nursing rests in the assumption that what constitutes high-quality nursing care can only be determined in the relational situation. Because the experiences of people and families vary so greatly, as do the realities within which health care occurs, there is no linear, laid out sequence or prescribed method. There are no prescriptions for assessment or action because what constitutes contextually responsive care depends on the particularities of specific nursing situations. Because we work with particular people and families in particular situations, it is impossible to present standardized action steps. The same action may in one case be responsive and health promoting and in another case not be. Thus, the question of how to intervene is one that nurses need to ask in and tailor to every situation: How might I best relate to this family in a way that is meaningful and significant and promotes their health and healing capacity? Consider how you might respond as a family nurse in the situation above. Where would you begin? What would you focus on? For example, it is evident from their facial expressions and the question they pose that the daughters are very worried about their mother. That might be an effective place to start because the question points to their immediate concern, to what is of meaning and significance to them. Following their lead (their worried expressions) is a form of both assessment and intervention in a relational inquiry approach. Acknowledging Sandra and Simone’s worry could be a way of joining them in their experience and furthering your understanding of both the immediate family situation and the context of their lives. Copyright © 2015. F.A. Davis Company
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As you follow their lead and inquire into their living experience and what is of meaning and significance to them, focus too on picking up contextual cues. For example, you might respond by sharing your observations in a tentative manner by stating, “You look pretty worried” or, “It’s hard not knowing what is wrong with your mom” to invite them to confirm, expand, or modify your understanding. Making inclusive observations, asking open-ended questions, and being interested in knowing more invites people and families to lead the way. By working in this collaborative manner, you work with the family to make connections between experiences and context and discern the so what for action. This involves recognizing the patterns of capacity and of adversity that are simultaneously part of the person’s or family’s illness experience. It also enables you to understand how contextual elements are shaping the situation and what the family’s immediate needs might be. For example, as you look contextually you might be concerned about the caregiving load that Simone is carrying (looking after her mother, brother, and grandfather). If you were working from a relational inquiry approach, that nursing concern is not something you know. You inquire into its relevance in terms of capacity and adversity; keep in mind that what one person or family might consider adversity may not be adversity to another. Asking, “How has it been for you to be caring for your mom, brother, and grandfather while your mom is ill?” enables you to learn how the person or family meaningfully experiences contextual elements. By inquiring, you might find that nothing has changed—that because her mother works long hours, Simone is used to assuming a lot of the domestic chores, or that she has a lot of support from friends or relatives. Alternatively, you may find that the added responsibility of caring for her mother while her mother is ill is more than she can handle, and she may open up and ask for more assistance in problem-solving. Copyright © 2015. F.A. Davis Company
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As you listen to and for context, you might learn of other socio-contextual structures and processes (economics, health care policies, values, norms, traditions, and history) that are shaping the family’s experience. Knowing the population you serve (for example, income levels, employment opportunities, and social financial assistance), you are attuned to listen for a range of possibilities without assuming how this particular family fits with population norms. So, this family might be fine in terms of managing household and caregiving needs, but they might not have access to money or transportation to get to the hospital. Alternatively, the worry for her mother may be affecting Simone’s ability to do schoolwork or hold down her part-time job that contributes to the family’s income. Thus, as you listen contextually you are listening and inquiring into resources—the resources they have, need, or can access. You also listen for what has enabled them to live in adversity—that is, what capacities they have within them or have accessed or enlisted. Similarly, you check your own view and your own capacities. Are your immediate nursing concerns obscuring your understanding of broader contextual issues or longer-term concerns? For example, given you are located in an acute-care setting, is Mrs. Dickson’s physical well-being your primary concern? Are you able to extend your view to consider the longer-term health impact of this illness situation? How do you balance your need to care for Mrs. Dickson’s acute health needs, while considering her family contextual needs? Evaluating Family Nursing Action Specifically, relational inquiry involves asking the person or family for their version of the story and purposefully opening the space for their choice making. Thus, evaluation of your nursing intervention involves an ongoing reflexive process where you check in with both families and yourself. Evaluation is centered in continuously asking the questions: How might I be as responsive as possible? How are my actions expanding (or constraining) the choice and Copyright © 2015. F.A. Davis Company
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capacity of this family? How might I support this family in ways that are meaningful to them and in ways that enable them to address their concerns and realize their aspirations? Relational inquiry helps you evaluate nursing effectiveness in the longer as well as the shorter term. For example, a quick discharge may result in a readmission for Mrs. Dickson if the context of the family situation is not taken into account. It also helps you provide family nursing care, beyond the immediate individual patient and beyond the immediate acute health care needs. Copyright © 2015. F.A. Davis Company
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Chapter 7 Genomics and Family Nursing Across the Life Span Understanding genomics is extremely important to the modern practice of nursing. A core competency in nursing education addresses the ability to apply genetic and genomic knowledge in conducting nursing assessments, as well as the ability to assess responses to genetic and genomic information (Consensus Panel, 2008). Virtually all diseases have a genetic component. Thus, nurses from all professional areas need to have an understanding of many factors: basic genetic concepts; current strategies to prevent, identify, and treat genetic diseases; reasons for referral to a genetic counselor; and ethical issues raised by identification of genetic disorders across the life span. This chapter emphasizes these areas, including a review of common biological and environmental patterns of inheritance; theories used to guide understanding of familial response to a diagnosis of a genetic disease; family assessment, including a review of genogram construction and interpretation; social policies designed to decrease the threat to those individuals and families diagnosed with genetic diseases; and ethical considerations particularly salient in genetic nursing, such as confidentiality. Short personal vignettes (contained in text boxes) accompany each key concept to emphasize real-life cases of families faced with the potential or real diagnosis of a genetic disease. Instructors are encouraged to use the chapter and suggestions in this instructor’s guide to highlight the importance of genetics and genomics in family nursing across the life span and across professional settings. Critical Concepts
- Genomics refers to the study of all genes in the human genome and their interactions with each other and the environment.
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- Genetics refers to the study of individual genes and their effect on clinical disorders.
- Biological members of a family may share the risk for disease because of genetic factors.
- Families are unique and respond to genetic discoveries differently based on personal coping styles, family values, beliefs, and patterns of communication. Even within the same family, members react differently.
- In every case, the nurse’s role is to support families to make decisions that are most appropriate for their particular circumstances, cultures, and beliefs.
- The two major nursing responsibilities when a genetic risk is identified are to help families understand that the risk is present and to help families make decisions about management and surveillance.
- Results of genetic tests are private and cannot be disclosed to other family members without the tested individual’s consent.
- Nurses identify accurate information and access resources for families with concerns regarding genetic and genomic health risks.
- All nurses, regardless of their areas of practice, apply an understanding of the effects of genetic risk factors when conducting assessments, planning, and evaluating nursing interventions.
Review of Key Terms Autosome: A chromosome that is paired and present in equal numbers in male and female individuals, not the sex chromosomes. Carrier: A person who is generally not affected by an inherited disorder but has one member of the gene pair. Copyright © 2015. F.A. Davis Company
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Instructor’s Guide Chromosome: A structure that contains DNA. Confidentiality: The principle that genetic information is personal and not shared with others without the person’s consent. Deoxyribonucleic acid (DNA): The biochemical substance that contains the genetic code. Dominant: A pattern of inheritance where effects of mutation in one member of a gene pair is sufficient to cause signs of the disease. Figure 7-1. Pedigree of autosomal dominant genetic condition. Gametes: Ova or sperm. Gene: Functional unit of heredity. Genetic discrimination: The Genetic Information Nondiscrimination Act (GINA) of 2008 protects individuals in the United States from discrimination initiated by an employer or health Copyright © 2015. F.A. Davis Company
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insurance company. This law does not apply to employers with fewer than 15 employees, and it does not include protection against discrimination when a person applies for life insurance, short-term disability insurance, or long-term care insurance. Members of the U.S. military and veterans, U.S. federal employees, and members of the Indian Health Service are covered under different laws and statutes. Genetic testing: Done for a variety of purposes, such as prenatal diagnosis, detection of carrier status, predictive or presymptomatic testing for development of familial disorders, and pharmacogenetic and direct-to-consumer (DTC) testing. See Table 7-1 in text. Genome: Set of instructions for making an organism. Genomics: The study of all genes in the human genome and their interactions with each other, the environment, and other factors. Genotype: An individual’s genetic composition. Mendelian: A trait that is attributable to a single gene and is inherited in a dominant or recessive manner. Mutation: An alteration in the DNA sequence. Neural tube defect (NTD): An abnormality of the spinal column or cranium, including anencephaly, spina bifida, and encephalocele. Preconception counseling: Nursing intervention that includes providing information and support to individuals, couples, and families before pregnancy to reduce risks of genetic disorders. Predictive genetic testing: Use of DNA testing to determine whether a person has a mutation that is associated with an inherited disorder. Copyright © 2015. F.A. Davis Company
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Instructor’s Guide Preselection: A member of the family that the family believes will experience development of an inherited condition. Recessive: A pattern of inheritance where the effects of a gene mutation are expressed when there are mutations in both members of a gene pair. Figure 7-2. Pedigree of autosomal recessive genetic condition. Risk assessment: All nurses should be able to conduct a risk assessment that includes obtaining a genetic family history (Consensus Panel, 2008). Using a three-generation family pedigree (genogram) provides valuable information about genetic inheritance patterns and recurrence risks. Copyright © 2015. F.A. Davis Company
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Instructor’s Guide X-linked recessive: A pattern of inheritance in which the gene mutation is on the X chromosome. Figure 7-3. Pedigree of X-linked recessive condition. Quiz and Exam Questions
- Genetic conditions:
- are most commonly present in newborn infants.
- always become worse as a person ages.
- are directly attributable to a mutation in the genes.
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- are always diagnosed after others have determined that a genetic condition is present in the family.
- Families that have an inherited disorder:
- are entitled to genetic information about all family members.
- are generally well-informed about the genetic aspects of the condition.
- may not wish to discuss genetic information with all family members.
- share common coping responses to learning about genetic aspects of the condition.
- Nurses use genetic knowledge:
- in all health care settings.
- only after becoming credentialed as genetics nurses.
- primarily with childbearing families.
- after others have determined whether a genetic condition is present in the family.
- The human genome:
- predicts the pattern of inheritance of genes and chromosomes.
- refers to alterations in genetic material.
- is a chromosome that is not a sex chromosome.
- is the complete set of instructions to make an organism.
- People with a high need for certainty are more likely to:
- avoid discussion of genetic information with biological relatives.
- pursue learning information about a genetic condition.
- act in accordance with a set of family norms and values.
- negotiate changes in family roles with key family members.
- Family members of people with Huntington disease:
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- are likely to request predictive diagnostic testing.
- are likely not to ask for predictive diagnostic testing.
- are not at risk for development of Huntington disease themselves.
- vary in their desire for predictive testing.
- Genetic diseases:
- always refer to diseases caused by biological conditions inherited from one family member to another.
- always refer to diseases caused by environmental factors family members share.
- refer to diseases caused by biological and environmental factors family members share.
- refer to X-linked disorders.
- When considering genetic diseases, a key ethical consideration is the concept of:
- Genes control:
- all major organs of the body.
- all personality characteristics of an individual.
- an individual’s ability to learn across the life span.
- all functions of the human body at the cellular level.
- If a disease is present in more than one generation, then:
- a genetic disease is present.
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- the family should be assessed for environmental risk factors affecting multiple generations.
- the family does not have a genetic disease.
- the family may have a biologically based or environmentally based genetic disease, or a combination of biological and environmental factors affecting the health of family members.
- When a recessive pattern is identified for a genetic disease within a family, this means that:
- 25% of the offspring will have the disease.
- the probability of having the disease is 1 in 4.
- 50% of offspring will have the disease.
- the probability of having the disease is 1 in 2.
- The first line of defense for a familial pattern of breast cancer is:
- radical mastectomy to prevent the development of cancer.
- more frequent mammography studies to detect the first indication of cell changes.
- preconception counseling to consider adoption as a method to decrease the spread of breast cancer.
- grief counseling and end-of-life counseling to increase communication among family members who are experiencing breast cancer.
- Genetic disorders can be diagnosed:
- before birth.
- before conception.
- during an acute or chronic illness.
- all of the above.
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- Use the Internet to search blogs, discussion or chat rooms, or other online social communication sites to gain a new perspective on the lived experience of waiting for or receiving genetic testing results. Bring your insights to class for discussion.
Note: Answer each of the following questions specific to one type of genetic testing.
- What are some ethical considerations of genetic testing (e.g., cost vs. benefit)?
- What are some personal implications of genetic testing? Who should have access to this information and why?
- What are the some societal implications of genetic testing?
Student Learning Activities Have students visit the National Coalition for Health Professional Education in Genetics (NCHPEG) Web site (www.NCHPEG.org) and review the competencies for all health care professionals developed in 2007. Case Study and Discussion Questions Case Study 1 (Box 7-3 in text) Brian, a 46-year-old man, is the oldest of three siblings. He is married but has no biological children. Brian was aware that his mother died of bowel cancer at the age of 38, and although this worried him, he hid his anxiety from both friends and relatives. He never discussed his mother’s death with his wife or siblings. Brian had been experiencing abdominal pain for some Copyright © 2015. F.A. Davis Company
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months when he collapsed at work one day and was taken to his local hospital emergency department. He was found to be anemic and suffering a bowel obstruction. A tumor located near the hepatic flexure of the large colon was removed successfully. Brian was informed that his family and medical history indicated that it was likely he inherited a mutation in an oncogene that predisposed him to bowel cancer. He was advised to share this finding with his siblings and recommend they seek advice and screening for themselves. Brian was reluctant to discuss the issue with his siblings but did tell his wife what the doctor had told him. Brian did not disclose this information to his siblings. Several months later, at the encouragement of his wife, they met with the cancer nurse to discuss the situation. The cancer nurse helped Brian decide what information to share with his siblings, and they created a plan for how and when to share the information. Subsequently, both Brian’s sister and brother had genetic testing. Brian’s sister was found to carry the mutation. She was screened, and she worked with the nurse to devise a plan to tell her children about their possible risk when they reached 18 years of age. Case Study 1 Discussion Questions
- How would you help Brian disclose this genetic information to his siblings?
- Role-play how you would tell your family of a potentially fatal genetic condition you recently learned you had.
Case Study 2: Cultural Awareness (Box 7-6 in text) Kate is a genetic nurse working in a pediatric clinic for children with inherited metabolic conditions. She was scheduled to see a family whose son had a rare inherited metabolic disorder to discuss future reproductive options, including prenatal diagnosis. When the family entered the room, she noted with surprise that both sets of grandparents accompanied the parents and the Copyright © 2015. F.A. Davis Company
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child. She quickly arranged for more chairs to be brought into the room. Kate was quite disconcerted to find that the paternal grandfather repeatedly answered questions that were directed to the parents, and she continued to address the parents. Eventually, the child’s father explained that, according to his culture, the oldest male relative on the father’s side was responsible for making the decision that would affect the family; therefore, it was critical that the grandfather be fully involved in all discussions. While reflecting with her mentor, Kate realized that, in the future, she would ask the family at the beginning of the family conference to share any specific cultural needs she should know about to help meet their family needs. Case Study 2 Discussion Questions
- How would you ask a family about cultural needs before disclosing information about a family member?
- Role-play how you would tell a family of a genetic condition in a culture where it was inappropriate to talk directly to female individuals.
Case Study 3: Preconception Genetic Counseling (Box 7-8 in text) Jay and Sara are college students who are planning to be married. Both are of Ashkenazi Jewish ancestry. Although both have heard about Tay–Sachs disease, and the availability of carrier testing, neither has had the carrier test. When Sara visited the student health office, she talked with the nurse about her fears that she may not be able to have healthy babies. She knew that Tay–Sachs disease, a degenerative neurologic condition, is more common in Ashkenazi Jewish families, and that no treatment will alter the course of the disease. Sara was interested in learning Copyright © 2015. F.A. Davis Company
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more about what a carrier test is, and the nurse offered to refer Sara to a genetics specialist, who would help the couple explore childbearing options, such as:
- Decide against having children
- Have a pregnancy with no form of genetic testing
- Have a preimplantation genetic diagnosis
- Have a pregnancy and have prenatal genetic diagnosis with an option to terminate an affected fetus
- Have a pregnancy using donor gametes from a noncarrier donor
- Adopt a child
Case Study 3 Discussion Questions
- How would you talk with a family about risks for genetic conditions before they have conceived a child?
- Role-play how you would discuss with Sara and Jay the options facing them.
Case Study 4: Autosomal Dominant Trait Diagnosis (Box 7-10 in text) Fiona is a 5-year-old child who is attending kindergarten. Her teacher is concerned that she does not appear to be progressing as well as expected and asks the school nurse, Cindy, to check her hearing. Cindy arranges for Fiona’s parents to bring her for a hearing test. She asks Fiona’s mother about her medical history; the mother says she has always been a well child and has not had any ear infections but has developed some “funny patches” on her skin. They have not caused a problem, but the mother has wondered what they are and if they could turn cancerous. Cindy checks these and notes that they seem to be café-au-lait patches—small pale-brown- Copyright © 2015. F.A. Davis Company
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pigmented areas of the skin. She reassures the parents that the café-au-lait patches are not harmful but could indicate an underlying cause for Fiona’s slight learning problems. She draws a genetic family pedigree or family tree (see Fig. 7-4) and notes that Fiona’s father and his mother (Fiona’s paternal grandmother) had unusual skin lumps but no other medical problems. Figure 7-4. Genetic pedigree: Fiona’s family tree. When the pediatrician sees the family, she measures Fiona’s head circumference and examines her skin. She confirms that the skin marks are café-au-lait patches and that Fiona has eight of these. Fiona’s head circumference is larger than average, on the 97th percentile for her age. The pediatrician makes a diagnosis of neurofibromatosis type 1. She explains that this is a genetic condition but that it could have arisen for the first time in Fiona or may have been Copyright © 2015. F.A. Davis Company
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inherited from one of her parents. Neither parent is aware of the condition in the family. The pediatrician examines both parents and finds that Fiona’s father has a large head circumference and has several raised lumps on the skin, called neurofibromas. He tells the pediatrician he needed extra help with math at school, but he finished college and works teaching French. He has never been concerned about the lumps because his own mother had dozens of them, and apart from having one removed because her shoe was rubbing against it, they did not cause her a problem. The pediatrician is aware that children with this condition may have learning problems. She recommends that Fiona be evaluated to identify whether Fiona would benefit from extra help at school. Because high blood pressure and malignancies can occur because of the condition, she also arranges for Fiona and her father to have an annual checkup. Fiona’s brother, James (9 years old), is also examined but has no signs of the condition and does not require any further checkups. When Cindy is informed of the diagnosis, she helps the family identify reliable sources of information on the Web and provides Fiona’s parents information about neurofibromatosis organizations. Case Study 4 Discussion Questions
- How would you talk with a family about this genetic condition? What information and resources would you provide this family?
- Role-play how you would discuss neurofibromatosis with this family.
- Practice drawing the family pedigree or genogram illustrating for this family an autosomal dominant trait.
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