Patient and Family Descriptions of Ethical Concerns

Abstract

Ethically challenging situations routinely arise in the course of illness and healthcare. However, very few studies have surveyed patients and family members about their experiences with ethically challenging situations. To address this gap in the literature, we surveyed patients and family members at three hospitals. We conducted a content analysis of their responses to open-ended questions about their most memorable experience with an ethical concern for them or their family member. Participants (N?=?196) described 219 unique ethical experiences that spanned many of the prevailing themes of bioethics, including the patient-physician relationship, end-of-life care, decision-making capacity, healthcare costs, and genetic testing. Participants focused on relational issues in the course of experiencing illness and receiving medical care and concerns regarding the patient-physician encounters. Many concerns arose outside of a healthcare setting. These data indicate areas for improvement for healthcare providers but some concerns may be better addressed outside of the traditional healthcare setting.     

Rawls, Justice in the Family and Justice of the Family

I contend that a form of contractualism more individualistic than Rawls' would do better at addressing concerns about justice and the family raised by feminist theorists, and that it would also compel us to be more egalitarian. Dissatisfactions expressed with Rawls's neglect of issues related to gender and the family can only be addressed if 'parties in the original position' are strictly defined as individuals. Thus defined, they are not only able to address questions of justice within families, but can also explore the less familiar question of justice of the family, namely whether the family should exist, from the point of view of justice. I conclude by exploring the question of whether the family should be abolished, in view of its leading to life chances unequal between individuals, and compare the family with a generalized, well resourced and well run orphanage.     

Family therapy and clinical psychology

The results of a survey of 111 clinical psychologists in the Republic of Ireland along with some comparable data from US and UK surveys were used to address a series of questions about the link between family therapy and clinical psychology. Family therapy was not a clearly identifiable sub-specialty within clinical psychology in Ireland. Family therapy theoretical models were used by more than a quarter of the Irish sample to conceptualize their work but by less than a tenth of US and UK respondents. In all three countries about a tenth of treatment time was devoted to the practice of family therapy. In Ireland, the use of family systems models, family assessment interviews and family therapy was more common within the child and family specialty than within the mental handicap or adult mental health clinical psychology specialties. The experience of live supervision and participation in family or couples therapy were important formative factors in the development of some clinical psychologists. Further training in systemic consultation, particularly in situations where an abuse of power has occurred, was identified in the survey as a priority area for continuing professional development. The evolving relationship between family therapy and clinical psychology is discussed in the light of these findings.     

An Ecological Approach to Enhancing Parenting Skills in Family Therapy

To increase the effectiveness of parent education interventions, family therapists can address those factors that shape the way in which parents interact with their children. This article presents ecological theory as a framework that can help clinicians expand the range of their parent training efforts. In order to assess the utility of ecological theory for clinical practice, the present study empirically explored the ways in which selected characteristics of parents, children, and the family context related to mothers' parenting behavior. Specific recommendations for family therapists who employ parent training techniques are offered.     

Marriage and Family Counseling in Counselor Education: National Trends and Implications

The authors report the results of a survey of 274 counselor education chairpersons asked to respond to a series of questions concerning the current status of marriage and family counseling in counselor education. Respondents indicated that marriage and family programs in counselor education are continuing to grow in popularity, identified courses most frequently employed in the training of such counselors, provided information about support that AACD could give to enhance the development of marriage and family counseling, and gave their opinions about how marriage and family counseling programs should be accredited.     

Children's and Adolescent's Views on Family Therapy

Family therapy has made a considerable contribution to our understanding of the experiences of children and families and especially how various symptoms can be understood as their response to distressing family dynamics. Though family therapy has found ways of alleviating children's distress we still know relatively little about how children experience the process of family therapy. Such knowledge is important for ethical as well as pragmatic reasons – to be able to offer a more sensitive and effective experience. This paper reports a study employing qualitative methods whereby children were interviewed about their experience of family therapy. Semi-structured interviews were conducted after family therapy sessions, and children were invited to recall what they perceived to be helpful and unhelpful. Helpful events or moments were then identified and replayed on the videotape of the sessions to assist children's memory. The results suggest a diversity of experiences according to the children's ages, gender and role in the family. Some common assumptions were challenged by the findings, for example, that some children preferred more directive and focused aspects of the therapy, rather than systemic questions which could inspire feelings of confusion and inadequacy.     

Conducting a Multi Family Member Interview Study

Family researchers have long recognized the utility of incorporating interview data from multiple family members. Yet, relatively few contemporary scholars utilize such an approach due to methodological underdevelopment. This article contributes to family scholarship by providing a roadmap for developing and executing in‐depth interview studies that include more than one family member. Specifically, it outlines the epistemological frames that most commonly underlie this approach, illustrates thematic research questions that it best addresses, and critically reviews the best methodological practices of conducting research with this approach. The three most common approaches are addressed in depth: separate interviews with each family member, dyadic or group interviews with multiple family members, and a combined approach that uses separate and dyadic or group interviews. This article speaks to family scholars who are at the beginning stages of their research project but are unsure of the best qualitative approach to answer a given research question.     

Duchenne Muscular Dystrophy: a Survey of Perspectives on Carrier Testing and Communication Within the Family

Carrier testing is widely available for multiple genetic conditions, and several professional organizations have created practice guidelines regarding appropriate clinical application and the testing of minors. Previous research has focused on carrier screening, predictive testing, and testing for X-linked conditions. However, family perspectives on carrier testing for X-linked lethal diseases have yet to be described. In this study, we explored communication within the family about carrier testing and the perspectives of mothers of sons with an X-linked lethal disease, Duchenne muscular dystrophy (DMD). Twenty-five mothers of sons with DMD participated in an anonymous online survey. Survey questions included multiple choice, Likert scale, and open ended, short answer questions. Analysis of the multiple choice and Likert scale questions revealed that most mothers preferred a gradual style of communication with their daughters regarding risk status. In addition, most participants reported having consulted with a genetic counselor and found it helpful. Comparisons between groups, analyzed using Fisher’s exact tests, found no differences in preferred style due to mother’s carrier status or having a daughter. Thematic analysis was conducted on responses to open ended questions. Themes identified included the impact of family implications, age and maturity, and a desire for autonomy regarding the decision to discuss and undergo carrier testing with at-risk daughters, particularly timing of these discussions. Implications for genetic counseling practice are discussed.     

Family perceptions and coping strategies in cases of intersexuality: understanding their significance

Considering that the intersexual condition has a negative impact on the individual, their family, and society, health professionals and researchers have dedicated themselves to is to describe and understand the perceptions of primary caregivers regarding intersexuality and its developmental aspects. Six mothers and one grandmother of school age children were interviewed. The data indicated that living with the stigma of intersexuality can mean a permanent state of crisis within the family system. Issues such as guilt about the child's suffering and questions related to the choice of gender follow the family from the moment of diagnosis. It is suggested that the therapeutic follow-up should foster the necessary conditions for the family group to be organized as a model of competence, replacing the model of guilt.     

Evaluating Family Interactions to Inform Exhibit Design: Comparing Three Different Learning Behaviors in a Museum Setting

ABSTRACT

How do we know that families are learning during the museum visit itself? In order to address this question, this study focuses on three frequently evaluated indicators of during-visit learning: time spent, exhibit engagement, and interpretive talk. Each of these types of data makes certain assumptions about family learning and how it occurs. Four hundred ninety-three family interactions at 25 different children's museum exhibits were analyzed to examine what the three measures reveal about family learning behavior. When compared, the three measures were not highly correlated, suggesting that generalizing information about the family experience from a single indicator is insufficient. Looking at all three indicators simultaneously can help evaluators begin to explore the relationships between families’ learning behaviors, and think about how exhibit characteristics can influence potential learning opportunities in informal settings.     

Life Events may Contribute to Family Communication About Cancer Risk Following BRCA1/2 Testing

We assessed whether certain life events contributed to the communication about cancer risk within families who have undergone BRCA1/2 testing. We also explored what type of resources participants would have valued to help in supporting family communication about genetic information. Two hundred and forty-six individuals (218 women, 28 men) who received a BRCA1/2 genetic test result 3 to 10 years earlier (mean of 6.4 years) participated in a telephone interview. Participants were asked about the occurrence of a number of life events (cancer diagnosis, death, uptake of prophylactic surgery, and providing care to a family member with cancer) in their family since their BRCA1/2 test result disclosure and, for each occurrence, whether it fostered family communication about cancer risk. A total of 182 participants (74 %) reported that they or one of their relatives received a cancer diagnosis, 176 (72 %) reported that someone died in their family, and 73 (30 %) stated that they or one of their relatives undertook a prophylactic surgery. During this period, 109 participants (44 %) also provided care for a family member who had cancer. Among participants who reported these life events, family communication was fostered by these events in proportions varying from 50 % (death) to 69 % (cancer diagnosis). Our results indicate that life events may contribute to family communication about cancer risk. Further research is needed to determine whether these events provide a “window of opportunity” to reach family members, address their needs and concerns about cancer, update family cancer history, and introduce genetic counseling and risk assessment.     

Queer Youth in Family Therapy

Trends in popular belief about same‐sex relationships have undergone noteworthy change in the United States over the last decade. Yet this change has been marked by stark polarizations and has occurred at varying rates depending upon regional, community, racial, religious, and individual family context. For queer youth and their families, this cultural transformation has broadened opportunities and created a new set of risks and vulnerabilities. At the same time, youth's increasingly open and playful gender fluidity and sexual identity is complicated by unique intersections of class, race, religion, and immigration. Effective family therapy with queer youth requires practitioner's and treatment models that are sensitive to those who bear the burden of multiple oppressions and the hidden resilience embedded in their layered identities. We present case examples of our model of family therapy which addresses refuge, supports difficult dialogs, and nurtures queerness by looking for hidden resilience in the unique intersections of queer youths' lives. These intersections provide transformational potential for youth, their families and even for family therapists as we are all nurtured and challenged to think more complexly about intersectionality, sexuality, and gender.     

Family ties after divorce: long-term implications for children

Drawing on the data from the longitudinal Binuclear Family Study, 173 grown children were interviewed 20 years after their parents' divorce. This article addresses two basic questions: (1) What impact does the relationship between parents have on their children 20 years after the divorce? and (2) When a parent remarries or cohabits, how does it impact a child's sense of family? The findings show that the parental subsystem continues to impact the binuclear family 20 years after marital disruption by exerting a strong influence on the quality of relationships within the family system. Children who reported that their parents were cooperative also reported better relationships with their parents, grandparents, stepparents, and siblings. Over the course of 20 years, most of the children experienced the remarriage of one or both parents, and one third of this sample remembered the remarriage as more stressful than the divorce. Of those who experienced the remarriage of both of their parents, two thirds reported that their father's remarriage was more stressful than their mother's. When children's relationships with their fathers deteriorated after divorce, their relationships with their paternal grandparents, stepmother, and stepsiblings were distant, negative, or nonexistent. Whether family relationships remain stable, improve, or get worse is dependent on a complex interweaving of many factors. Considering the long‐term implications of divorce, the need to emphasize life course and family system perspectives is underscored.     

Race-Related Differences in the Experiences of Family Members of Persons with Mental Illness Participating in the NAMI Family to Family Education Program

Families play an important role in the lives of individuals with mental illness. Coping with the strain of shifting roles and multiple challenges of caregiving can have a huge impact. Limited information exists regarding race-related differences in families’ caregiving experiences, their abilities to cope with the mental illness of a loved one, or their interactions with mental health service systems. This study examined race-related differences in the experiences of adults seeking to participate in the National Alliance on Mental Illness Family-to-Family Education Program due to mental illness of a loved one. Participants were 293 White and 107 African American family members who completed measures of problem- and emotion-focused coping, knowledge about mental illness, subjective illness burden, psychological distress, and family functioning. Multiple regression analyses were used to determine race-related differences. African American caregivers reported higher levels of negative caregiving experiences, less knowledge of mental illness, and higher levels of both problem-solving coping and emotion-focused coping, than White caregivers. Mental health programs serving African American families should consider targeting specific strategies to address caregiving challenges, support their use of existing coping mechanisms and support networks, and increase their knowledge of mental illness.     

Justice as a Family Value: How a Commitment to Fairness is Compatible with Love

Many discussions of love and the family treat issues of justice as something alien. On this view, concerns about whether one's family is internally just are in tension with the modes of interaction that are characteristic of loving families. In this essay, we challenge this widespread view. We argue that once justice becomes a shared family concern, its pursuit is compatible with loving familial relations. We examine four arguments for the thesis that a concern with justice is not at home within a loving family, and we explain why these arguments fail. We develop and defend an alternative conception of the justice‐oriented loving family, arguing that justice can—and, for the sake of justice, should—be seen as a family value.     

Constructivism and Family Therapy

Personal construct and family systems theories can profit from an exchange of ideas concerning the relationship between their personal and interpersonal aspects of construction. This article examines three possible points of contact between the two orientations. First, we suggest that personal construct psychology could profit from addressing the important contributions of the family context to the development of each individual's system. Second, we address the impact of the person's constructions on the larger family system. Third, we suggest that the family system itself develops a system of shared constructions that define and bind its identity and interactions. Each of these areas of interface carries implications for therapy, and specific intervention techniques corresponding to each of these are discussed.     

The Relationship of Differentiation,Family Coping Skills,and Family Functioning with Optimism in College-Age Students

The marriage and family therapy (MFT) field would benefit from new research about positive subjective experiences, such as optimism, in order to construct and nurture strengths for developing more positive emotions. Through a better understanding of optimism, marriage and family therapists (MFTs) can explore which strategies might help families and individuals better cope with distressing emotions by building buffering strengths. In this study we address the relationship of differentiation, family coping, and family functioning to optimism. We found that differentiation, family coping, and family functioning each have a significant effect on attributional style. The results of this study also indicated that encouraging clients to take an I-position and to reframe problems, in particular, may lead to greater optimism. This study contributes to the lack of research regarding strength-based theories in the MFT field.     

Predictors of Family Functioning Within Alcoholic Families

This study assessed the effects of various predictor variables on dimensions of functioning within alcoholic families. Participants were 173 college student volunteers from alcoholic families who completed a measure of family functioning, demographic questions, and questions related to experiences in their families of origin. Child abuse, spousal violence, parental divorce, length of time living with an alcoholic parent, parental marital status, and parental availability and predictability significantly affected family functioning, whereas frequency of parental drinking did not. Results suggest that quality of parental interactions with children is more important for functioning in alcoholic families than frequency of parental drinking.