Dissemination of Genetic Information in Swiss Families with Lynch Syndrome: A Qualitative Exploratory Study

In Switzerland, out of respect for privacy and in accordance with federal laws regarding genetic testing, information sharing about hereditary cancer predisposition syndromes is initiated solely by the proband and never from the medical clinic. Thus, an essentially medical task, communication of cancer risk and possible testing, is always delegated, at least initially, to the patient. In order to explore this communication process, its associated difficulties and possibilities for improvements, we have conducted a study with Lynch syndrome families in Western Switzerland. Semi-structured interviews were conducted with 19 participants (12 female, 7 male), either in person or by telephone. We specifically explored whether participants considered transmission of genetic information a medical or personal responsibility. Other recurrent themes were also identified, including family wisdom and superstitions, emotional responses, and parent-child guilt. The identification of a cancer predisposition and the request to communicate this with family members remained a traumatic experience for many. However, within this group, which may be biased towards better communicators, the information was shared with at risk relatives. Despite inherent difficulties, the majority wish to retain the responsibility for contacting family members. This suggests that in Switzerland, and possibly in other countries with similar rules/attitudes towards privacy, efforts to improve cascade screening should be directed towards facilitating intra-familial communication.

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Challenges and Opportunities for Cancer Predisposition Cascade Screening for Hereditary Breast and Ovarian Cancer and Lynch Syndrome in Switzerland: Findings from an International Workshop

Public Health Genomics ◽

10.1159/000496495 ◽

2018 ◽

Vol 21 (3-4) ◽

pp. 121-132 ◽

Cited By ~ 5

Author(s):

Christos Nikolaidis ◽

Chang Ming ◽

Carla Pedrazzani ◽

Tina van der Horst ◽

Andrea Kaiser-Grolimund ◽

...

Keyword(s):

Ovarian Cancer ◽

Lynch Syndrome ◽

International Workshop ◽

Cancer Predisposition ◽

Breast And Ovarian Cancer ◽

Cascade Screening ◽

Challenges And Opportunities

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Interventions Facilitating Family Communication of Genetic Testing Results and Cascade Screening in Hereditary Breast/Ovarian Cancer or Lynch Syndrome: A Systematic Review and Meta-Analysis

Cancers ◽

10.3390/cancers13040925 ◽

2021 ◽

Vol 13 (4) ◽

pp. 925

Author(s):

Vasiliki Baroutsou ◽

Meghan L. Underhill-Blazey ◽

Christian Appenzeller-Herzog ◽

Maria C. Katapodi

Keyword(s):

Systematic Review ◽

Ovarian Cancer ◽

Genetic Testing ◽

Lynch Syndrome ◽

Family Communication ◽

Meta Analysis ◽

Decision Aids ◽

Cancer Predisposition ◽

Cascade Screening ◽

Screening And Prevention

Evidence-based guidelines recommend cascade genetic testing of blood relatives of known Hereditary Breast and Ovarian Cancer (HBOC) or Lynch Syndrome (LS) cases, to inform individualized cancer screening and prevention plans. The study identified interventions designed to facilitate family communication of genetic testing results and/or cancer predisposition cascade genetic testing for HBOC and LS. We conducted a systematic review and meta-analysis of randomized trials that assessed intervention efficacy for these two outcomes. Additional outcomes were also recorded and synthesized when possible. Fourteen articles met the inclusion criteria and were included in the narrative synthesis and 13 in the meta-analysis. Lack of participant blinding was the most common risk of bias. Interventions targeted HBOC (n = 5); both HBOC and LS (n = 4); LS (n = 3); or ovarian cancer (n = 2). All protocols (n = 14) included a psychoeducational and/or counseling component. Additional components were decision aids (n = 4), building communication skills (n = 4), or motivational interviewing (n = 1). The overall effect size for family communication was small (g = 0.085) and not significant (p = 0.344), while for cascade testing, it was small (g = 0.169) but significant (p = 0.014). Interventions show promise for improving cancer predisposition cascade genetic testing for HBOC and LS. Future studies should employ family-based approaches and include racially diverse samples.

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SUSTAINING FAMILY ROUTINES AFTER TRANSITIONING INTO PARENTHOOD: COUPLES’ PERCEPTIONS OF ASSISTING FACTORS

SOUTHERN AFRICAN JOURNAL OF SOCIAL WORK AND SOCIAL DEVELOPMENT ◽

10.25159/2415-5829/1347 ◽

2016 ◽

Vol 28 (1) ◽

pp. 3-17

Author(s):

Christine De Goede ◽

Abraham P Greeff

Keyword(s):

Low Income ◽

Transition To Parenthood ◽

Specific Problem ◽

Family Members ◽

Major Theme ◽

Structured Interviews ◽

Theory Analysis ◽

Family Routines ◽

Temporal Complexity ◽

Context Specific

The aim of this qualitative study was to explore what assists couples in sustaining family routines after the transition to parenthood. Participants were recruited from two day-care centres in Cape Town, South Africa. In-depth, semi-structured interviews were conducted with 10 couples, mostly from low-income households, who had gone through this transition between one and four years previously. Grounded theory analysis revealed one major theme, Factors that decrease task and temporal complexity, with seven subthemes: Support from the wider family network; Couple cooperation and tag-teaming; Planning and pre-empting future problems; Adhering to schedules; Facilitative characteristics and skills of individual family members; Parents’ sense of commitment and responsibility towards family members; and idiosyncratic accommodations. Results underscore the need for professionals to help parents gain support from relatives; strengthen partner teamwork; foster schedule consistency; improve skills such as planning; foster their caretaker self-concepts; and facilitate context-specific problem-solving.

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Psychological interventions for managing postpartum psychosis: a qualitative analysis of women’s and family members’ experiences and preferences

BMC Psychiatry ◽

10.1186/s12888-019-2378-y ◽

2019 ◽

Vol 19 (1) ◽

Cited By ~ 1

Author(s):

R. Forde ◽

S. Peters ◽

A. Wittkowski

Keyword(s):

Psychological Intervention ◽

Psychological Impact ◽

Family Members ◽

Psychological Needs ◽

Postpartum Psychosis ◽

Psychological Interventions ◽

Structured Interviews ◽

Seeking Safety ◽

The Future ◽

Severe Disorder

Abstract Background Postpartum psychosis is a rare, yet severe disorder, in which early identification and immediate intervention are crucial. Despite recommendations for psychological input, little is known about the types of psychological intervention reported to be helpful. The aim of this study was to explore the experiences, needs and preferences for psychological intervention from the perspective of women with postpartum psychosis and from the perspective of family members. Methods Thirteen women and eight family members, including partners were interviewed. The data from these semi-structured interviews were audio-recorded, transcribed and inductively analysed using thematic analysis. Results Twelve subthemes were identified and then organised around three main themes: 1) Seeking safety and containment, 2) Recognising and responding to the psychological impact and 3) Planning for the future. These themes highlight the temporal element of recovery from postpartum psychosis, because women’s psychological needs and preferences changed over time. Emphasis was initially placed on ensuring safety, followed by a need to connect, process and adjust to their experiences. Additional needs were reported by women and family when planning for the future, including managing the fear of relapse and help to reach a decision about future pregnancies. Conclusion The results illustrate a range of areas in which psychological intervention could be delivered to facilitate and enhance recovery. Further research is needed to develop meaningful and effective psychological interventions and to investigate the most appropriate timing for this to be offered.

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The evolution of parents’ beliefs about childhood cancer during diagnostic communication: a qualitative study in Guatemala

BMJ Global Health ◽

10.1136/bmjgh-2020-004653 ◽

2021 ◽

Vol 6 (5) ◽

pp. e004653

Author(s):

Dylan Graetz ◽

Silvia Rivas ◽

Lucia Fuentes ◽

Ana Cáceres-Serrano ◽

Gia Ferrara ◽

...

Keyword(s):

Cancer Education ◽

Medical Model ◽

Communication Process ◽

Sources Of Information ◽

Cancer Communication ◽

Structured Interviews ◽

Children With Cancer ◽

Cancer Centre ◽

Treatment Abandonment ◽

Cancer Beliefs

IntroductionFatalistic cancer beliefs may contribute to delayed diagnosis and poor outcomes, including treatment abandonment, for children with cancer. This study explored Guatemalan parents’ cancer beliefs during initial paediatric cancer communication, and the sociocultural and contextual factors that influence these beliefs.MethodsTwenty families of children with cancer were included in this study. We audio-recorded psychosocial conversations with psychologists and diagnostic conversations with oncologists, then conducted semi-structured interviews with parents to explore the evolution of their cancer beliefs. Audio-recordings were transcribed and translated from Spanish into English, with additional review in both languages by bilingual team members. All 60 transcripts were thematically analysed using a priori and novel codes.ResultsGuatemalan parents’ beliefs evolve as they learn about cancer through various sources. Sources of information external to the cancer centre, including prior experiences with cancer, media exposure, community discussion and clinical encounters, contribute to pre-existing beliefs. Many parents’ pre-existing cancer beliefs are fatalistic; some are influenced by Mayan spirituality. Sources internal to the cancer centre include psychologists and oncologists, other providers, other patients and families. Psychologists acknowledge pre-existing beliefs and deliver cancer education using verbal explanations and hand-drawings. Oncologists provide diagnostic information and outline treatment plans. Both support hope by providing a path toward cure. Parents’ lived experience is a culmination of sources and simultaneously independent. Ultimately most parents arrive at an understanding of cancer that is consistent with an allopathic medical model and offers optimism about outcomes.ConclusionAn interdisciplinary communication process that includes cancer education, is attentive to pre-existing beliefs, and supports hope may encourage acceptance of the allopathic medical model and need for treatment. Providers in settings of all resource levels may be able to use these techniques to support cross-cultural cancer communication, reduce treatment abandonment and improve therapy adherence.

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Cascade screening for glaucoma in high-risk family members of African-Caribbean glaucoma patients in an urban population in London

British Journal of Ophthalmology ◽

10.1136/bjophthalmol-2020-317373 ◽

2020 ◽

pp. bjophthalmol-2020-317373

Author(s):

Anindyt Nagar ◽

Sam Myers ◽

Diana Kozareva ◽

Mark Simcoe ◽

Christopher Hammond

Keyword(s):

High Risk ◽

Genetic Diseases ◽

Family Doctor ◽

Family Members ◽

Hospital Setting ◽

High Risk Group ◽

Cascade Screening ◽

Specialist Referral ◽

High Risk Family ◽

African Caribbean

Background/aimsCascade screening has been used successfully in relatives of patients with inherited cancers and other genetic diseases to identify presymptomatic disease. This study was designed to examine if this approach would be successful in a high-risk group: first-degree relatives (FDR) of African-Caribbean glaucoma patients resident in London.MethodsAfrican-Caribbean patients (probands) with glaucoma from an inner London hospital setting in a deprived area were asked to disseminate personalised information to their FDR over the age of 30 and to arrange a free hospital-based screening. Data collected, including optical coherence tomography imaging, were reviewed by a glaucoma specialist and if glaucoma was diagnosed or suspected, local specialist referral via family doctor was made.Results203 probands were recruited from glaucoma clinics. 248 suitable FDR were identified as potentially eligible to attend screening. 57 (23%) FDR made contact with the research team of whom 18 (7%) attended a subsequent screening visit. No patients were diagnosed with glaucoma; one participant was diagnosed as glaucoma suspect. Reasons for poor uptake included reluctance by probands to involve their family members, and retirees spending significant time abroad.ConclusionCascade screening of FDR of African-Caribbean glaucoma patients in inner city London was unsuccessful. Research confidentiality guidance prohibiting research teams directly contacting family members was a barrier. Greater community engagement, community-based screening and permission to contact FDR directly might have improved uptake.

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Exploring how educational leaders in England experience and promote their own well-being

Management in Education ◽

10.1177/08920206211003887 ◽

2021 ◽

pp. 089202062110038

Author(s):

Lucy Lindley

Keyword(s):

Interpretative Phenomenological Analysis ◽

Subjective Experience ◽

Personal Autonomy ◽

Personal Responsibility ◽

Educational Leaders ◽

Well Being ◽

Phenomenological Analysis ◽

Structured Interviews ◽

What Works

This study aimed to explore how educational leaders in England experience and promote their own well-being. To address this, five semi-structured interviews were carried out with educational leaders who expressed that they had personally experienced high levels of well-being. Using Interpretative Phenomenological Analysis (IPA), four themes were identified, which highlighted that well-being is a subjective experience (‘there’s no blueprint’); that high levels of well-being are commonly described as feeling balanced (‘maintain a balance’); that well-being is perceived as a personal responsibility (‘you’ve got to find ways to manage that’); and that participants were leading by example in relation to well-being (‘be a well-being supermodel’). Overall, this study emphasised that there is no one-size-fits-all approach to well-being, so educational leaders (and their colleagues) should be given space and personal autonomy to work out what works for them.

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Family Interactions Regarding Fathers’ Smoking and Cessation in Shanghai, China

The Journal of Smoking Cessation ◽

10.1017/jsc.2014.25 ◽

2014 ◽

Vol 11 (4) ◽

pp. 199-202 ◽

Cited By ~ 3

Author(s):

Carla J. Berg ◽

Pinpin Zheng ◽

Michelle C. Kegler

Keyword(s):

Smoking Prevalence ◽

Family Members ◽

Spousal Support ◽

Gender Disparities ◽

Work Culture ◽

Family Interactions ◽

Structured Interviews ◽

Small Children ◽

Marital Interactions ◽

The Family

Introduction: Spousal support predicts smoking cessation. China is the world's largest consumer of tobacco, with drastic differences in smoking prevalence among men and women. Thus, understanding marital interactions around husbands’ smoking has implications for cultures with similarly large gender disparities in smoking.Aims: We examined interactions among family members regarding husbands’ smoking in homes with small children in Shanghai.Methods: In Spring 2013, we conducted in-person semi-structured interviews among 13 male smokers and 17 female nonsmokers recruited from an urban and a suburban community in Shanghai.Results/Findings: To encourage husbands’ cessation or reduction, some women reported intervening either directly or indirectly through their children, emphasizing the health consequences for the smoker and the family. Some women reported not conversing about cessation due to concern about conflict, tolerance, or resignation. Women reported that their husbands’ responses to anti-smoking messages from family members included promises to quit in the future or noting the strength of the nicotine addiction and the disadvantages of quitting. Men reported the importance of smoking in work/culture and argued against the research about the harms of smoking.Conclusions: Interventions targeting motivators for cessation among men and to support women in encouraging their husbands’ cessation should be developed.

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Patient perceptions of experience with cardiac rehabilitation after isolated heart valve surgery

European Journal of Cardiovascular Nursing ◽

10.1177/1474515117716245 ◽

2017 ◽

Vol 17 (1) ◽

pp. 45-53 ◽

Cited By ~ 2

Author(s):

Tina B Hansen ◽

Selina K Berg ◽

Kirstine L Sibilitz ◽

Ann D Zwisler ◽

Tone M Norekvål ◽

...

Keyword(s):

Cardiac Rehabilitation ◽

Heart Valve ◽

Isolated Heart ◽

Personal Responsibility ◽

Training Programme ◽

Valve Surgery ◽

Rehabilitation Programme ◽

Heart Valve Surgery ◽

Structured Interviews ◽

Cardiac Rehabilitation Programme

Background: Little evidence exists on whether cardiac rehabilitation is effective for patients after heart valve surgery. Yet, accepted recommendations for patients with ischaemic heart disease continue to support it. To date, no studies have determined what heart valve surgery patients prefer in a cardiac rehabilitation programme, and none have analysed their experiences with it. Aims: The purpose of this qualitative analysis was to gain insight into patients’ experiences in cardiac rehabilitation, the CopenHeartVR trial. This trial specifically assesses patients undergoing isolated heart valve surgery. Methods: Semi-structured interviews were conducted with nine patients recruited from the intervention arm of the trial. The intervention consisted of a physical training programme and a psycho-educational intervention. Participants were interviewed three times: 2–3 weeks, 3–4 months and 8–9 months after surgery between April 2013 and October 2014. Data were analysed using qualitative thematic analysis. Results: Participants had diverse needs and preferences. Two overall themes emerged: cardiac rehabilitation played an important role in (i) reducing insecurity and (ii) helping participants to take active personal responsibility for their health. Despite these benefits, participants experienced existential and psychological challenges and musculoskeletal problems. Participants also sought additional advice from healthcare professionals both inside and outside the healthcare system. Conclusions: Even though the cardiac rehabilitation programme reduced insecurity and helped participants take active personal responsibility for their health, they experienced existential, psychological and physical challenges during recovery. The cardiac rehabilitation programme had several limitations, having implications for designing future programmes.

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