Communication of Information about Genetic Risks: Putting Families at the Center

Genetic information is a family affair. With the expansion of genomic technologies, many new causal genes and variants have been established and the potential for molecular diagnoses increased, with implications not only for patients but also their relatives. The need for genetic counseling and intrafamilial circulation of information on genetic risks grew accordingly. Also, the amount and, particularly, the complexity of the information to convey multiplied. Sharing information about genetic risks with family members, however, has never been an easy matter and often becomes a source of personal and familial conflicts and distress. Ethical requisites generally prevent healthcare professionals from directly contacting their consultands' relatives (affected or still at risk), who often feel unsupported throughout that process. We discuss here the communication of genetic risks to family members. We first consider genomic testing as a basis for family‐centered health care, as opposed to a predominant focus on the individual. We reviewed the literature on sharing genetic risk information with family members, and the associated ethical issues for professionals. Some clinical cases are presented and discussed, and key issues for meeting the needs of individuals and families are addressed. We argue that genetic information is inextricably linked to the family and that communicating about genetic risks is a process grounded within the broader milieu of family relationships and functioning. We conclude for the need for a more family‐centered approach and interventions that can promote sensitive attitudes to the provision of genetic information to and within the family, as well as its inclusion in educational and training programmes for genetic healthcare professionals.     

Training needs among nonmental health professionals working with service members: A qualitative investigation

Though many service members will not directly seek mental health care due to stigma and other factors, they may interact with the healthcare system in other ways including contact with first responders, nurses, and allied health care professionals. However, little attention has been spent in this regard on the educational needs of these professionals whose contact with service members and Veterans may provide the opportunity to assist Veterans in need with overcoming barriers to accessing mental health care. This qualitative study investigates the educational training needs of first responders and health care professionals in contact with military families and trauma survivors to determine whether, and what type, of additional training is needed. A sample of 42 first responders and health care professionals including emergency medical technicians, police officers, fire fighters, speech language pathologists, occupational therapists, physical therapists, and nurses were recruited to participate in 1 of 6 focus groups. Sessions were audiotaped and transcribed verbatim. Data analysis was guided by a thematic analysis approach. Thematic analyses suggest there is a significant knowledge gap with unmet educational needs of these professionals such as information on the invisible wounds of war, military culture, and screening and referring patients who present symptoms falling outside professionals’ scope of practice. Findings point to a need and desire for more robust education for first responders and health care providers around mental health concerns of military populations, including topics such as trauma, military culture, and screening tools. Efforts to develop curricula addressing these concerns are warranted.     

The Process of Family Reconstruction after DNA Testing for Huntington Disease

The needs of families to reconstruct their relationships in response to the DNA testing for Huntington disease of one or more of their asymptomatic members are presented. Data were collected from family interviews with 18 families, and from their responses on a post interview questionnaire. Findings are that families need to (a) address unfinished business associated with the decision for testing; (b) bring family members, peripheral in the decision for testing, into the loop; (c) reorganize patterns of communication and roles altered by the testing and heal ruptures in family membership; and (d) revise family stories about illness to provide a meaning for HD and explain the test results in a way that leaves them with a sense of mastery. Findings suggest that families should be more involved in the initial decision for testing of a member and that protocols should be established to provide help for their ongoing adjustment.     

"Living with" the past: coping and patterns in families of Holocaust survivors

This exploratory study looks at how families of Holocaust survivors work through the traumatic past by considering the coping patterns adapted by family members. Life-story interviews (Rosenthal, 1993) with 57 individuals from 20 families, in which there were two to three generations, were used in order to learn about the significance they attach to the Holocaust past. The interviews were analyzed using Rosenthal's methods and Danieli's (1988) typology of post-war adaptation (victim families, fighter families, those who made it, and numb families). Results showed that in order to differentiate between the coping styles exhibited by the families, two new categories had to be added to Danieli's typology. These were entitled "life goes on" and "split families." It was concluded that survivor families exhibit heterogeneity in the ways in which they cope with the Holocaust past.     

Success and failure among polygamous families: the experience of wives, husbands, and children

In this study, we interviewed 10 polygamous families, all residing in a Bedouin Arab town in the south of Israel and consisting of 1 husband, 2 wives, and children. Five members were interviewed in each family: first wife, second wife, the oldest child of the first wife, the oldest child of the second wife, and the husband. Five families were considered well-functioning families and five as poorly functioning. Findings suggest that polygamy in both well-functioning and poorly functioning families is painful, particularly for wives. Yet, there are many ways and techniques that enable members of the family to function well. Among them are acceptance of polygamy as God's wish or destiny, equal allocation of resources among both families by the husband, separation between the two households, avoidance of "minor" conflicts and disagreements, maintaining an attitude of respect toward the other wife, and allowing open communication among all siblings, and among children and the other mother. We discuss the need to develop, implement, and evaluate family intervention programs for polygamous families among different communities in the world.     

Sensory experience and family process: perceptual styles tend to run in but not necessarily run families

The science of family systems has begun to develop concepts and methods for objectively assessing important characteristics of families. Thus we now have ways of measuring differences among families with respect to cohesiveness, flexibility, clarity of communication, and shared views of social reality. We know practically nothing, however, about the origins of these differences among families. One possibility is that the skills or personal attributes of one or more individual members influences the characteristics of the family as a whole. This paper explores the hypothesis that the perceptual styles of individual members--the ways they organize their experience of their personal stimulus world--influence the shared perceptions the family develops of the social world in which it lives. We explored relationships between nine measures of perceptual style and problem-solving measures of the family's shared perception of its social world. The findings showed many similarities among members of the same family on several measures of perceptual style. However, perceptual style had only a few relationships with family performance in the problem-solving task.     

Unity versus multiplicity: a conceptual analysis of the term "self" and its use in personality theories

There is no single answer to the unity-multiplicity problem regarding the self for the simple reason that the term "self" is used by too many different theorists in too many different ways. In fact, there are several important substantive topic areas that need to be distinguished and studied scientifically. The topic areas I examine in this article are reflexivity, unit coherence, agency, and subjectivity. Each of these areas will be evaluated in terms of what it contributes to, and can be interpreted in terms of, the unity-multiplicity issue. It is proposed that we need a more differentiated technical vocabulary if we are to better understand the phenomena we are examining. Matching our technical vocabulary to this empirical detail sharpens the questions being asked and places the empirical facts in better focus. A more elaborate framework of conceptual differentiation provides a better basis for developing an integrated theory.     

Helping patients by involving their families

Patients and their family members may become highly interdependent as patients near the end of life. To best help these patients, healthcare providers can try to become a member of the patient/family team. By becoming a member, careproviders can improve patients' and family members' access to medical information, more effectively offer advice, and assure patients and family members that they can still choose to do what they think is best.     

The promises and perils of pragmatism: commentary on Fins, Bacchetta, and Miller

Fins, Bacchetta, and Miller's clinical pragmatism has several appealing features: an emphasis on dialogue, a commitment to consensus, a focus on particular individuals rather than persons in general, and a strong interest in the process as well as the product of moral decision making. Nevertheless, for all its protests to the contrary, clinical pragmatism has a tendency to privilege medical facts over nonmedical values, to conflate appropriate medical decisions with right moral decisions, and to conceive problems at the bedside in terms of "getting" patients and families to "go along" with the treatment plans of clinicians. In sum, there is within clinical pragmatism the potential for physicians to take back some of the power they ceded to patients during the height of the patients' rights and autonomy movement. Provided that clinicians guard against the temptation to use clinical pragmatism manipulatively, however, the method promises, more than most other methods of moral problem solving, to help increasingly diverse individuals make good moral decisions about patients' care under conditions of enormous uncertainty.     

An innovative approach to clinical communication in schizophrenia: the approaches to schizophrenia communication checklists

Side effects from antipsychotic medications can have a profound effect on patients' lives and may adversely affect their willingness to comply with treatment. Identification of side effects through improved communication between psychiatrists, other members of the healthcare team, and their patients might increase treatment compliance. The Approaches to Schizophrenia Communication (ASC) Steering Group developed two simple, practical checklists for use in the busy clinical setting. The ASC-Self-Report (ASC-SR) checklist is completed by the patient and comprises a list of the more common or clinically important side effects of antipsychotic treatment. The ASC-Clinic (ASC-C) checklist is completed by both clinician and patient together, being used as the basis for a semi-structured interview. In a multicenter pilot study set up to evaluate the utility of checklists, 86% of patients responding considered the ASC-SR to be useful in communicating their problems to psychiatrists and other members of the healthcare team. All healthcare team respondents found both checklists to be helpful when discussing side effect problems with their patients. Moreover, 41% and 47% of healthcare team respondents reported that the ASC-SR and ASC-C, respectively, had assisted them in identifying side-effect problems not previously acknowledged. Preliminary evaluation of the ASC-SR and ASC-C in this multicenter pilot study suggests that both tools were user-friendly, encouraged communication between patients and healthcare professionals about antipsychotic drug side effects, and could readily integrated into everyday clinical practice.     

Dilemmas in kinship care: negotiating entitlements in therapy

This paper considers how ideological dilemmas that arise in therapy can be analysed usefully for therapeutic practice. The focus is on the particular situation of kinship care families where family or friends are caring for children without birth parents being present. In the process of family members negotiating the entitlement to care and to be cared for, multiple possibilities about family constructions and authorities throw up many dilemmas for therapists and families. Based on the author's research study with kinship care families, a method for linking discourse theory and therapeutic practice through the use of discourse analysis and positioning theory is explored, with reference to the hierarchical method of the Co‐ordinated Management of Meaning model. The paper contends that a consideration of ideological dilemmas in conversation is a core part of any therapeutic encounter, which needs to be recognized and considered in order that those involved in therapy may reflect on several possible futures and so open up the space for future decision‐making.     

Family Communication in Inherited Cardiovascular Conditions in Ireland

Over 100,000 individuals living in Ireland carry a mutated gene for an inherited cardiac condition (ICC), most of which demonstrate an autosomal dominant pattern of inheritance. First-degree relatives of individuals with these mutations are at a 50 % risk of being a carrier: disclosing genetic information to family members can be complex. This study explored how families living in Ireland communicate genetic information about ICCs and looked at the challenges of communicating information, factors that may affect communication and what influence this had on family relationships. Face to face interviews were conducted with nine participants using an approved topic guide and results analysed using thematic analysis. The participants disclosed that responsibility to future generations, gender, proximity and lack of contact all played a role in family communication. The media was cited as a source of information about genetic information and knowledge of genetic information tended to have a positive effect on families. Results from this study indicate that individuals are willing to inform family members, particularly when there are children and grandchildren at risk, and different strategies are utilised. Furthermore, understanding of genetics is partially regulated not only by their families, but by the way society handles information. Therefore, genetic health professionals should take into account the familial influence on individuals and their decision to attend genetic services, and also that of the media.     

Global Mental Health: A Call for Increased Awareness and Action for Family Therapists

Global mental health (GMH) is an emerging field that focuses on the need for culturally sensitive mental health services in low‐ and middle‐income countries (LMICs). While many new initiatives have been established worldwide to understand GMH needs and to provide care in LMICs, family therapists have primarily worked with families in high‐income countries. The few existing family‐based initiatives in GMH focus on psychoeducation and are typically not based on general systems theory. However, emerging trends in family therapy may enable family therapists to impact mental health issues in LMICs. These trends, which are shared interests of both family therapy and GMH, include collaborative care, a growing emphasis on the importance of culture in understanding and treating mental health issues, recognition of the ability of families to support or impede recovery from mental illness, and the use of strength‐based and evidence‐based treatments. This paper describes ways for family therapists to become active in the GMH community.     

Banking on brains: Insights of brain donor relatives and friends from an experiential perspective

Brain donation is critical to understand the pathological causes of neurodegenerative diseases. Increasing levels of donation requires an understanding of those factors that both encourage and deter donation. At present, there are few studies of how people understand, feel and decide about brain donation for scientific research. This qualitative experiential study contributes to the growing literature on brain donation through its specific focus on how the donation process is experienced from the perspectives of family members and friends. Nineteen semi-structured interviews were analysed using a phenomenologically informed thematic analysis. Four themes were derived from the analysis, three of which are described in detail: Making the decision to donate; a personal perspective on the donation process; the significance of the brain; beliefs about brain donation. In particular, the thematic analysis highlights the variation of individual decision making and the emotions and reasons underpinning such decisions. Key conclusions include the importance of integrated practice amongst relevant healthcare professionals as well as the need for supportive and informed communication. Also, in light of the finding that the brain assumed no special significance for most participants, the value of the distinction between brain donation for research purposes and organ transplantation is questioned.     

Reconstructing the Brothers Grimm: new tales for step-family life

Step-families are situated within the sociopolitical context of family change and are examined as a prototype of the "post-modern" family. This essay looks at the cultural construction of step-family life and proposes a model for collaboratively reconstructing stories that liberate step-relationships from the legacy of the Brothers Grimm, deconstructing the stories of failure, insufficiency, and neglect. Building on narrative and social constructionist ways of thinking about families, the concept of side-shadowing (a hermeneutic approach from literary/historical criticism) is introduced to elucidate how therapists can help family members discover ways of thinking, feeling, and behaving that are both more personally satisfying and more congruent with the changed context of family life. Two therapeutic challenges are high-lighted: reconceptualizing what it means to be a step-family and coming to terms with differential attachment in relationships while working with step-families. The essay ends with a fairy tale for the 21st century.     

Healthcare Policy in the United States: A Primer for Medical Family Therapists

As family therapists increasingly practice in healthcare settings, they need to be aware of forthcoming changes in healthcare policy and the impact of these changes on their clinical work and the lives of their clients. In this paper, we provide a primer on healthcare policy for family therapists, which describes current and proposed changes in healthcare that will potentially revolutionize healthcare delivery for families. We describe three key initiatives: (1) Triple Aim; (2) the Accountable Care Organization; and (3) the Patient Centered Medical Home. We conclude with a discussion about future directions and healthcare policies that include families.     

Banking on brains: Insights of brain donor relatives and friends from an experiential perspective

Brain donation is critical to understand the pathological causes of neurodegenerative diseases. Increasing levels of donation requires an understanding of those factors that both encourage and deter donation. At present, there are few studies of how people understand, feel and decide about brain donation for scientific research. This qualitative experiential study contributes to the growing literature on brain donation through its specific focus on how the donation process is experienced from the perspectives of family members and friends. Nineteen semi-structured interviews were analysed using a phenomenologically informed thematic analysis. Four themes were derived from the analysis, three of which are described in detail: Making the decision to donate; a personal perspective on the donation process; the significance of the brain; beliefs about brain donation. In particular, the thematic analysis highlights the variation of individual decision making and the emotions and reasons underpinning such decisions. Key conclusions include the importance of integrated practice amongst relevant healthcare professionals as well as the need for supportive and informed communication. Also, in light of the finding that the brain assumed no special significance for most participants, the value of the distinction between brain donation for research purposes and organ transplantation is questioned.     

Expanding Possibilities: Flexibility and Solidarity with Under-resourced Immigrant Families During the COVID-19 Pandemic

The novel coronavirus has added new anxieties and forms of grieving to the myriad practical and emotional burdens already present in the lives of underserved and uninsured immigrant families and communities. In this article, we relate our experiences since the COVID-19 crisis to the lessons we have learned over time as mental health professionals working with families in no-cost, student-managed community comprehensive health clinics in academic-community partnerships. We compare and contrast the learnings of flexibility of time, space, procedures, or attendance we acquired in this clinical community setting during regular times, with the new challenges families and therapists face, and the adaptations needed to continue to work with our clients in culturally responsive and empowering ways during the COVID-19 pandemic. We describe families, students, professionals, promotoras (community links), and IT support staff joining together in solidarity as the creative problem solvers of new possibilities when families do not have access to Wi-Fi, smartphones, or computers, or suffer overcrowding and lack of privacy. We describe many anxieties related to economic insecurity or fear of facing death alone, but also how to visualize expanding possibilities in styles of parenting or types of emotional support among family members as elements of hope that may endure beyond these unprecedented tragic times of loss and uncertainty.     

Searching for a normal life: personal accounts of adults with schizophrenia, their parents and well-siblings

Using a life course perspective, the research examines personal accounts of adults with schizophrenia, and their parents and well-siblings from six families. Accounts of multiple members of the same family, including the family member with schizophrenia, are used to describe how families understand and accommodate life changes that result from the illness. Families describe the loss of a normal life as one of the most devastating aspects of schizophrenia. We present the personal and social losses described by adults with schizophrenia and their well family members, and document families' search for ways that their ill family member can achieve or maintain valued social roles. The concerns of well family members for the future of the ill family member and ways families contemplate transfer of care issues are described. Implications of the study for community research and action are discussed.