Leadership in community mutual support groups for mental health: A qualitative case study from the leaders' perspective

This study explores the experience of leadership of member‐led community‐based mental health mutual support groups. Recent research has documented factors that affect these groups, including leader well‐being, but little is known about the experience of leadership at the individual level. We aimed to understand more about the experience of leadership and how leading members conceptualise their roles. Individual semi‐structured interviews were conducted with 14 leaders of a community mental health mutual support group in England and thematically analysed. Three themes were identified through which leading members conceptualised their roles and group dynamics: (a) “It's a family”; (b) professional values; and (c) working as a team. These knowledge frameworks appeared to influence leaders' well‐being and conceptualisations of their role. The potential impact of this on group stability is discussed. Recommendations are made that group and individual‐level processes be considered together in future research in mental health mutual support contexts due to their interconnected nature.     

Communicating BRCA1/2 genetic test results within the family: A qualitative analysis

Genetic testing for BRCA1/2 mutations associated with hereditary breast and ovarian cancer reveals significant risk information about one's chances of developing cancer. It is important to study communication processes in families where members are undergoing genetic testing because the information received is crucial not just to the individual concerned but also to other members of the biological family. This study investigates family communication of BRCA1/2 test results from both the informants’ and recipients’ perspectives. A total of 10 female patients and 22 of their relatives were interviewed. Patients’ and their relatives described feelings of responsibility for sharing genetic information within the family to enable others to reduce their risks of developing cancer. However, there were limits to an individuals’ responsibility once key family members had been informed, who then had to take responsibility for continuing dissemination of information. Whilst there was an implicit responsibility to inform the family of a mutation, information was edited or withheld in the best interest of relatives, dependent upon their perceived emotional readiness, resilience and current life stage and circumstances. The pre-existing family culture and the impact previous cancer diagnoses had upon the family also influenced the process of communication. Findings are discussed in relation to extant literature and implications for clinical practice are considered.     

Improving Health Education for Women Who Carry an <Emphasis Type="Italic">FMR1</Emphasis> Premutation

Women who carry an FMR1 (i.e., fragile X) premutation have specific health risks over their lifetime. However, little is known about their experience understanding these risks and navigating their health needs. The aim of this study was to use qualitative analysis to uncover both barriers and facilitators to personal healthcare using a framework of the Health Belief Model. Five focus groups were conducted with a total of 20 women who carry the FMR1 premutation using a semi-structured discussion guide. All sessions were transcribed verbatim and independently coded by two researchers. The coders used a deductive – inductive approach to determine the prominent themes related to the participants’ experiences seeking healthcare for premutation-related conditions. Salient barriers to personal healthcare included difficult clinical translation of research findings, lack of knowledge among healthcare providers and among the women themselves, different priorities, and shortage of premutation-specific support and targeted educational materials. Facilitators included family members, national and community support organizations, research studies, compassionate physicians, and other premutation carriers. Addressing barriers to personal healthcare through up-to-date educational materials can help diminish misperceptions regarding health risks. Targeted educational materials will aid in information sharing and awareness for women who carry the FMR1 premutation and their physicians.     

What Facilitates or Impedes Family Communication Following Genetic Testing for Cancer Risk? A Systematic Review and Meta-Synthesis of Primary Qualitative Research

To systematically review and meta-synthesise primary qualitative research findings regarding family communication following genetic testing of cancer risk, in order to inform development of effective interventions. Systematic searches of CINAHL, Embase, Medline, British Nursing Index and PsycINFO databases were undertaken and relevant studies identified using strict criteria. The selected primary qualitative studies were appraised for quality and relevance by three independent researchers and then synthesized using a “Framework” approach. Fourteen (4.3%) studies met the inclusion criteria. The following factors influenced family communication following genetic testing for late-onset hereditary cancer: the informant’s feelings about informing relatives about genetic testing; the perceived relevance of the information to other family members and their anticipated reactions; the “closeness” of relationships within the family; family rules and patterns (e.g., who is best placed to share information with whom); finding the right time and level of disclosure; and the supportive role of heath care professionals. The themes identified in this review could provide practitioners with a useful framework for discussing family communication with those undergoing genetic testing. This framework focuses on helping health care professionals to facilitate family communication. The next step will be the development of an intervention to directly support people in talking to their relatives.     

Integrating new soldiers: The role of leaders and unit members

The benefits of positively integrating newcomers into organizations are well known in civilian contexts. Less known is the role of integration among US soldiers who frequently relocate and integrate into new units. Perceptions of integration were examined both cross-sectionally and longitudinally as predictors of mental health, anger reactions, unit climate and functional impairment for soldiers who recently joined their unit. In addition to rating their perceptions of integration, soldiers also rated their leader and unit member support for integration. Cross-sectional correlations indicated that positive personal integration was significantly associated with fewer mental health problems, fewer anger reactions, better unit climate, and less functional impairment. Positive leader and unit support for integration was significantly associated with better unit climate. Positive leader support was also associated with fewer mental health symptoms. Only the associations of positive personal integration, with anxiety symptoms and unit climate held over time. Mediation analyses showed that personal integration fully mediated the cross-sectional relationship between leader support for integration and depression symptoms and partially mediated the relationship between leader support for integration and anxiety symptoms and unit climate. Personal integration also partially mediated the relationship between unit member support for integration and unit climate. These findings identify the importance of the individual’s personal perception of integration in predicting reduced mental health symptoms and increased unit climate, both in the short and long term. Leaders and unit members facilitate this process and could therefore benefit from training on how best to integrate new members to the unit.     

Facilitating Family Communication About Predictive Genetic Testing: Probands’ Perceptions

The responsibility of informing relatives that predictive genetic testing is available often falls to the proband. Support is required during this process, however the perceived utility of genetic counseling and other strategies to facilitate communication have not been explored. We investigated the experiences of 12 individuals with hereditary nonpolyposis colorectal cancer (HNPCC) in a semistructured telephone interview. Respondents informed their immediate family about the availability of genetic testing, however many more-distant relatives were not directly informed. Respondents were mostly satisfied with the way they told family members about testing and had mixed views about the usefulness of genetic counseling. Gender differences were observed, with most men expressing a need for guidance or support in communicating to relatives. Letters and booklets were thought to enhance the quality of information but the provision of further aids is unlikely to increase the number of relatives made aware of predictive testing by the proband.     

Iona College Community Centered Family Health History Project: Lessons Learned from Student Focus Groups

The Community Centered Family Health History project was initiated to create accessible family health history tools produced by and for the community. The project goal was to promote increased community engagement in health education by encouraging conversations among family members that would translate knowledge of family health history into healthy lifestyle choices. As one of seven community partners, Iona College participated in customizing and beta-testing the Does It Run in the Family? toolkit. Twenty-nine college students were engaged to recruit three relatives related by blood to provide feedback on the utility of the toolkit. The toolkit consists of two booklets—“A Guide to Family Health History” and “A Guide to Understanding Genetics and Health”—explaining the importance of knowing and talking about health within the family as well as basics about how conditions are passed down through generations. Twenty-two of the twenty-nine students participated in focus groups to discuss their reactions to participation in the project. Students in the focus group reported that the study participants—students and their family members—found the toolkit to be user friendly and the experience a valuable one that prompted many to take positive steps toward good health.     

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

Discovery of mutations in the breast and ovarian cancer susceptibility genes BRCA1 and BRCA2 can have emotional consequences for both the tested individual and his or her relatives. This secondary analysis study investigated how BRCA testing impacts family dynamics and relationships. For the original study, a grounded theory inquiry, participants were recruited from a hereditary breast/ovarian cancer syndrome support website and open-ended interviews were performed asking about individual and family experiences after BRCA testing. All 12 participants whose interviews were included in the secondary analysis had a BRCA mutation. For the secondary analysis, thematic analysis was conducted and revealed three main themes characterizing the effect of BRCA testing on family relationships: 1. That the first in the family to have testing or seek genetic counseling takes on a special family role that can be difficult for them; 2. That discussions in the family often change; and 3. That individuals may feel more or less connected to certain family members. These changes seemed to relate to family cancer history, relationships, coping strategies, communication patterns, and mutation status. Genetic counselors might find it useful to explore these issues in order to prepare clients before BRCA testing and to support them through shifts in family dynamics after disclosure of results.     

Communicating BRCA1/2 genetic test results within the family: a qualitative analysis

Genetic testing for BRCA1/2 mutations associated with hereditary breast and ovarian cancer reveals significant risk information about one's chances of developing cancer. It is important to study communication processes in families where members are undergoing genetic testing because the information received is crucial not just to the individual concerned but also to other members of the biological family. This study investigates family communication of BRCA1/2 test results from both the informants' and recipients' perspectives. A total of 10 female patients and 22 of their relatives were interviewed. Patients' and their relatives described feelings of responsibility for sharing genetic information within the family to enable others to reduce their risks of developing cancer. However, there were limits to an individuals' responsibility once key family members had been informed, who then had to take responsibility for continuing dissemination of information. Whilst there was an implicit responsibility to inform the family of a mutation, information was edited or withheld in the best interest of relatives, dependent upon their perceived emotional readiness, resilience and current life stage and circumstances. The pre-existing family culture and the impact previous cancer diagnoses had upon the family also influenced the process of communication. Findings are discussed in relation to extant literature and implications for clinical practice are considered.     

Aligning Policy to Promote Cascade Genetic Screening for Prevention and Early Diagnosis of Heritable Diseases

Cascade genetic screening is a methodology for identifying and testing close blood relatives of individuals at increased risk for heritable conditions and follows a sequential process, minimizing testing costs and the number of family members who need to be tested. It offers considerable potential for cost savings and increased awareness of heritable conditions within families. CDC-classified Tier 1 genomic applications for hereditary breast and ovarian cancer syndrome (HBOC), Lynch Syndrome (LS), and familial hypercholesterolemia (FH) are recommended for clinical use and support the use of cascade genetic screening. Most individuals are unaware of their increased risk for heritable conditions such as HBOC, LS, and FH. Consistent implementation of cascade genetic screening could significantly increase awareness and prevention of heritable conditions. Limitations to effective implementation of cascade genetic screening include: insufficient genetic risk assessment and knowledge by a majority of healthcare providers without genetics credentials; a shortage of genetic specialists, especially in rural areas; a low rate of reimbursement for comprehensive genetic counseling services; and an individual focus on prevention by clinical guidelines and insurance coverage. The family-centric approach of cascade genetic screening improves prevention and early diagnosis of heritable diseases on a population health level. Cascade genetic screening could be better supported and augmented through changes in health policy.     

Du modèle transactionnel à une approche dyadique en psychologie de la santé

In the context of chronic disease, models and studies in health psychology have first focused on the patients’ adjustment. Research conducted with the Transactional Model of Stress and Coping (Lazarus and Folkman, 1984) and the Transactional Integrative and Multifactorial Model (Bruchon-Schweitzer, 2002) have shown that individuals’ social relations, and especially family support, are associated to patients’ outcomes. Recently, studies have taken more attention to the “significant others”, most often the partners. In fact, relatives are also affected indirectly by the disease and its changes on daily life. Moreover, they often play a crucial role by helping the patient to face the disease. These models are focused on the individual and are not relevant to study dyads. An evolution of these models can be proposed by integrating a systemic and dyadic approach. In fact, the way the patient and the relative face the disease, the quality of their relation but also the way they face the disease together, as a dyad, have to be considered. The first part of this article presents the Transactional Model of Stress and Coping and the Transactional Integrative and Multifactorial Model and their evolutions. The second part shows how it is possible to develop a dyadic approach based on these models. It presents the Family System-Illness Model (Rolland, 1987), the Developmental-Contextual Model of couples coping with chronic illness across the adult life span (Berg and Upchurch, 2007) and a Systemic and Transactional Model of Dyads, which help to take more completely into account the adjustment processes of patients and relatives to a chronic illness.     

Expressed emotion attitudes and individual psychopathology among the relatives of bipolar patients

This study investigated the relationships between expressed emotion (EE) and individual psychopathology among 82 biological and non-biological relatives of 66 patients with bipolar I disorder. Relatives' psychopathology was assessed via the Structured Clinical Interview for DSM-III-R, Patient Version (SCID-P) and the General Behavior Inventory (GBI), a self-report measure of lifetime subsyndromal mood disturbances. We hypothesized that relatives who held high-EE critical, hostile, and/or overinvolved attitudes toward their bipolar family member, as measured via the Camberwell Family Interview, would be more likely to have DSM-III-R Axis I diagnoses on the SCID, as well as more mood and temperamental disturbances on the GBI, than those who held low-EE attitudes. The findings did not support a significant relationship between overall EE status and psychopathology in family members. However, relatives without significant Axis I pathology scored significantly higher than those with Axis I pathology on one measure of EE, emotional overinvolvement. The findings are discussed with reference to explanations for the genesis of high-EE attitudes.     

“I Don’t Want to Be an Ostrich”: Managing Mothers’ Uncertainty during BRCA1/2 Genetic Counseling

Families who face genetic disease risk must learn how to grapple with complicated uncertainties about their health and future on a long-term basis. Women who undergo BRCA 1/2 genetic testing describe uncertainty related to personal risk as well as their loved ones’, particularly daughters’, risk. The genetic counseling setting is a prime opportunity for practitioners to help mothers manage uncertainty in the moment but also once they leave a session. Uncertainty Management Theory (UMT) helps to illuminate the various types of uncertainty women encounter and the important role of communication in uncertainty management. Informed by UMT, we conducted a thematic analysis of 16 genetic counseling sessions between practitioners and mothers at risk for, or carriers of, a BRCA1/2 mutation. Five themes emerged that represent communication strategies used to manage uncertainty: 1) addresses myths, misunderstandings, or misconceptions; 2) introduces uncertainty related to science; 3) encourages information seeking or sharing about family medical history; 4) reaffirms or validates previous behavior or decisions; and 5) minimizes the probability of personal risk or family members’ risk. Findings illustrate the critical role of genetic counseling for families in managing emotionally challenging risk-related uncertainty. The analysis may prove beneficial to not only genetic counseling practice but generations of families at high risk for cancer who must learn strategic approaches to managing a complex web of uncertainty that can challenge them for a lifetime.     

Integration: Opportunities and Challenges for Family Therapists in Primary Care

Integration of behavioral and physical health is becoming critical for the overburdened primary care system. Policy changes are needed to accommodate integration nationally. Locally, medical and behavioral health providers are working together to create models that better fit their patients?? comprehensive needs while respecting the clinical, operational, and financial constraints of the current system. Family therapists trained to work in medical settings have an opportunity to emerge as clinical, research, and administrative leaders in this context. However, a paradigm shift is crucial to adapting their systemic orientation to interactions between individual patients, providers, staff, and healthcare and support systems. This article provides family therapists with: (1) an overview of the basic structure and barriers of integration, (2) suggestions on how to deliver quality care despite barriers at the local level, and (3) examples of key advocacy efforts representing possible entryways on a larger scale.     

Patients’ Attitudes Towards Disclosure of Genetic Test Results to Family Members: The Impact of Patients’ Sociodemographic Background and Counseling Experience

Many factors predict the intention to disclose genetic information to relatives. The article examines the impact of patients’ socio-demographic factors on their intention to disclose genetic testing results to their relatives. Data were collected in eight genetic clinics in Israel. Patients were requested to fill in a questionnaire after counseling. A convenience sample of 564 participants who visited these clinics was collected for a response rate of 85 %. Of them, 282 participants came for susceptibility testing for hereditary cancers (cancer group), and 282 for genetic screening tests (prenatal group). In the cancer group, being secular and having more years of education correlated positively with the intention to disclose test results to relatives. In the prenatal group, being married and female correlated positively with the intention to disclose. In the cancer group, being religious and with less years of education correlated positively with the view that the clinician should deliver the results to the family. In the prenatal group, being male and unmarried correlated positively with this belief. In both groups, being of young age correlated with the perception that genetic information is private. Varied sociodemographic factors affect the intention to inform family members. Thus, knowing the social background of patients will shed light on people’s attitudes to genetic information and will help clinicians provide effective counseling in discussions with patients about the implications of test results for relatives.     

A Relational Approach to Genetic Counseling for Hereditary Breast and Ovarian Cancer

Ethical issues arise for genetic counselors when a client fails to disclose a genetic diagnosis of hereditary disease to family: they must consider the rights of the individual client to privacy and confidentiality as well as the rights of the family to know their genetic risk. Although considerable work has addressed issues of non-disclosure from the client’s perspective, there is a lack of qualitative research into how genetic counselors address this issue in practice. In this study, a qualitative approach was taken to investigate whether genetic counselors in Australia use a relational approach to encourage the disclosure of genetic information from hereditary breast and ovarian cancer (HBOC) clients among family members; and if so, how they use it. Semi-structured qualitative interviews were conducted with 16 genetic counselors from selected states across Australia. Data collection and analysis were guided by a basic iterative approach incorporating a hybrid methodology to thematic analysis. The findings provide indicative evidence of genetic counselors employing a relational approach in three escalating stages––covert, overt and authoritative––to encourage the disclosure of genetic information. The findings lend credence to the notion that genetic counselors envision a form of relational autonomy for their clients in the context of sharing genetic information, and they depart from individualistic conceptions of care/solely client-centered counseling when addressing the needs of other family members to know their genetic status.     

“My Life is Too Chaotic to Practice What I Preach”: Perceived Benefits and Challenges of Being an Academic Women in Family Therapy and Family Studies Programs

The purpose of this study was to explore the experience of female faculty in family therapy and family studies graduate programs. Specifically, we were interested in how female faculty members in these programs experienced their roles as academics, partners, and/or parents. We conducted a discovery-oriented study qualitative study of 62 female academics in family studies and family therapy disciplines to identify the greatest concerns and benefits experienced by women in a family-studies-oriented academic field. Using a content analysis, we found that women in family studies/family therapy academic programs experience both high rewards and high demands and struggle with choosing among competing values. Additionally, the participants perceived support from colleagues, professional institutions, and family members as crucial to a female academic’s ability to perform up to expectations. We also offer suggestions for further research.     

The Age of Uncertainty: Parent Perspectives on the Transitions of Young People with Mental Health Difficulties to Adulthood

For young people aged 16–24, the transition from adolescence to young adulthood involves predictable and unpredictable changes and they may encounter challenges in their roles, relationships, and responsibilities. Young people with mental health difficulties face additional challenges as they and their families navigate this transition. As a result, families commonly experience anxiety, uncertainty, frustration, and turbulent relationships. After learning to become advocates to secure appropriate services for their children, in late adolescence and young adulthood, parents are likely to find themselves excluded from their children’s treatment planning and services. This article reports findings from a recent qualitative study of the experiences and perceptions of 42 family members supporting their children with mental health difficulties during the transition years. Family members described their goals for their children, their frustrations trying to access appropriate services for their children, and their strategies to provide the support their children needed. Recommendations are for service providers to connect transition age youth with practical assistance and supportive mentoring relationships. Family members requested service providers to consider them as resources and potential collaborators in supporting young people with mental health difficulties to live successful lives in the community.