Facial Allograft Donation: An Interpretative Phenomenological Analysis of the Experiences of Family Members.

Facial allograft transplantation can be regarded as a particular and complex type of donation because of its perceptibility and the importance of the face as an identity characteristic. As research on this topic is currently lacking, the objective of this study is to explore the experiences of the family members of the donor in facial allograft donation. In-depth, semi-structured interviews were conducted separately with the donor's family members and analyzed using interpretative phenomenological analysis. Six themes were identified: (1) Contrasting facial donation to that of more commonly donated organs; (2) Consenting to facial donation; (3) Expectations towards the recipient of the facial graft; (4) Expectations and consequences of restoration of the donor's face; (5) Relationship with the medical team during the process; and (6) Media attention. The findings of our study help to better support donor families through the facial donation process and to improve facial transplantation procedures.

Treatment experiences during a cognitive behaviour therapy group intervention targeting repetitive negative thinking: A qualitative study.

OBJECTIVES: Treatment of repetitive negative thinking (RNT) focuses rather on individual than group cognitive behaviour therapy (CBT) treatment. Additionally, little is known on how clients experienced these interventions. This study investigates clients' experiences on participating in a CBT group intervention targeting RNT (RNT-G). DESIGN: Of the 80 participants, 11 were randomly selected for an in-depth, semi-structured interview after treatment. Interviews focused on what participants experienced as important on group aspects, offered interventions, homework tasks, and possible changes. METHODS: All participants were adults, diagnosed with major depressive disorder and/or generalized anxiety disorder and being currently in mental health care treatment. After transcribing the interviews, analyses were performed according to the guidelines of thematic analysis. RESULTS: Four major themes were identified. First, the group format itself was experienced as an important factor of change. The experiences about the different offered interventions during the group formed a second theme. A third theme related to changes in family or professional life and dealing with RNT as a result of the intervention. Finally, group participation, social interactions, and mental health care treatment were experienced as mutually influencing during the intervention. CONCLUSIONS: The results of this study shed some light on which treatment interventions were perceived as beneficial during the RNT-G and should therefore be emphasized in treatment. Further, they indicate that the treatment in a group format was experienced as helpful by the participants. Finally, a positive mutual influence between the group intervention and the ongoing individual treatment was experienced.

How are OCD patients and their families coping with the COVID-19 pandemic? A qualitative study.

Patients with obsessive-compulsive disorder (OCD) are likely to be affected by the COVID-19 crisis since fear of contamination is highly prevalent in this illness and disease reminders are omnipresent during this crisis. The current study aimed to investigate the impact of the pandemic and the lockdown on the mental health, well-being and coping abilities of OCD patients and their families in order to increase our understanding of the underlying mechanisms of the disorder. Twenty-two patients and 13 family members were interviewed one-to-one about their experiences and challenges caused by the pandemic and home-confinement directives. Verbatim transcripts of the interviews were analyzed using inductive thematic analysis. Five overarching themes were identified: (1) changing point of reference: confusion and legitimization of OCD behavior, (2) coping strategies were challenged: too much or too little exposure to obsessional concerns, (3) distress but also relief in some areas, (4) developing a new equilibrium within the family, (5) changes in accessibility and nature of therapy: perils and merits of online treatment. These findings make clear the importance of the accessibility of mental health services during this pandemic through direct patient contacts or in a remote format. In therapy therapists should focus on challenging the changing point of reference, providing practical advice on coping, stimulating to engage in exposure and encouraging patients to seek social support. Furthermore, it is important to involve family members in therapy to support and coach them to be validating, supportive and encouraging, without accommodating to the OCD behaviour.

Sexual Assertiveness and Its Correlates in Emerging Adults: An Exploratory Study in Cuenca (Ecuador).

Objective: Sexual assertiveness (SA), i.e., the ability to communicate thoughts and desires that may be translated into satisfying sexual activity within an intimate relationship, is important for safe and satisfying sexual behavior. In an attempt to unravel which cultural, relational, and individual variables are related to the development of SA in emerging adults, an exploratory study was conducted in Cuenca, Ecuador. Methods: Five hundred and thirty-eight participants completed scales that measured their levels of SA, endorsement of the sexual double standard, relationship satisfaction, and mental well-being. Results: This study showed a negative effect of the sexual double standard on SA in both men and women and this effect was slightly tempered by the level of education. Women reported higher levels of SA than men. In women, SA was associated with general mental well-being and relationship satisfaction; but not in men. For both women and men, no association was found with relationship status or duration. Conclusions: These findings corroborate evidence highlighting the importance of SA for healthy sexual relationships and emphasize the importance of (sex) education for SA for lower educated women and men. The results are discussed in relation to findings on SA in other contexts.

How are OCD Patients and Family Members Dealing with the Waxing and Waning Pattern of the COVID-19 Pandemic? Results of a Longitudinal Observational Study.

The current study aimed to investigate the impact of the COVID-19 pandemic on the mental health of people with OCD and the degree of family accommodation (FA) by live-in family members across phases of the lockdown measures imposed by the Belgian government. Forty-nine OCD patients and 26 live-in family members participated in the study. We assessed OCD symptom severity and FA of the live-in family members, as well as depressive symptoms, anxiety and stress levels and COVID-19 related psychological distress of patients and family members at four different timepoints: one month after the start of the lockdown (T1), during the gradual relaxation (T2), between the two waves (T3) and during the second wave (T4). Results showed that although COVID-19 related stress increased and decreased in accordance with the waxing and waning pattern of the pandemic, OCD symptoms showed an initial slight increase followed by a decrease at T3 and again at T4. Changes in family members' accommodation of symptoms followed the same course as the OCD symptoms. Furthermore, OCD symptoms correlated with depressive symptoms, anxiety and stress levels and COVID-19 related distress at all timepoints. It is important to involve family members in the treatment of OCD even during a pandemic. Clinicians should also pay attention to symptoms of depression, anxiety and stress during OCD treatment. Further research is necessary to entangle the causal relationship between OCD symptoms, FA and symptoms of depression, anxiety and stress.

Latin American Women´s Beliefs, Views and Ideas About Sexual Assertiveness: A Focus Group Study in Cuenca (Ecuador).

In an attempt to extend our understanding of how social contexts co-create female sexuality in Latin America, the aim of the current study was to explore the beliefs, views, and ideas about sexual assertiveness in Latino emerging adult women. Seventeen women between 22 and 30 years old living in Cuenca, Ecuador, participated in focus groups. A constructivist grounded theory approach was used to analyze the data. Findings suggest that the overall views about sexual assertiveness in emerging adult women can be grouped into five categories: (1) gender role schemata; (2) concerns about the partner's thoughts and reactions; (3) gendered attitudes towards the use of specific methods of contraception; (4) talking about sexual histories as a challenging task; and (5) replication of family patterns. The findings of this study are discussed within existing literature that highlights the influence of gender role schemata on sexual assertiveness. Finally, a plea for more culturally sensitive research is formulated as well as some educational - the need to reinforce sex education programs - and clinical - highlighting the ability to be sexually assertive from the start of a relationship - implications are mentioned.

Donor insemination disclosure in social networks: heterosexual couples' experiences.

The way in which heterosexual couples manage information about infertility and donor insemination within their social networks has not yet been explored in-depth. This study focuses on how parents and aspiring parents manage information about infertility and donor insemination within their social networks. Fifteen Belgian couples were interviewed as part of a parenthood research project. Thematic analysis resulted in the identification of four themes. The first of these reveals how the social context can best be understood as a continuous confrontation with social expectations. A second theme highlights the diverse ways in which couples manage personal information in this confronting context. The third theme stresses how couples manage information about donor insemination so as to be treated as a 'normal' family. The final theme shows how emotional regulation within the context of the extended family plays a role in couples' decisions about how to manage information with relatives. Results are analysed using the concept of 'systemic emotion management' and the importance of being seen by others as a 'normal' family. Study findings signal the importance of managing information within social networks and are of relevance to a range of practitioners.

The family practice of support-giving after a pediatric cancer diagnosis: A multi-family member interview analysis.

PURPOSE: Pediatric cancer presents many challenges to the life of the child diagnosed with cancer and his/her family. Among the studies investigating risk and protective factors, social support has emerged as an important construct. However, little is known on how family members support each other in this particular context. METHOD: In order to further explore this process, interviews were performed separately with mothers, fathers and siblings. For the purpose of this study (as this is part of a larger project), data from four families in which both parents and at least one sibling participated, were used. Multi Family Member Interview Analysis was used as the methodological framework to analyze the individual interviews, allowing a detailed and systematic analysis of shared family experiences. RESULTS: The analysis of the data revealed three themes: Being together matters: the families identified the need of being physically together; Finding support in (not) talking: the complexity of sharing emotions was explained and Working together as a team: the families described working together as a team in order to get everything organized. CONCLUSIONS: This study broadens our understanding of the interpersonal process of family support-giving when facing pediatric cancer. When meeting with families, families should be invited as a unit in order to best capture family level experiences. Also, clinicians should be sensitive to the different cancer-related communication needs within the family (i.e., the need to talk or not to talk) and incorporate this knowledge into their care.

Siblings' Experiences of Everyday Life in a Family Where One Child Is Diagnosed With Blood Cancer: A Qualitative Study.

BACKGROUND: Childhood cancer not only presents challenges to the life of the child with cancer but also to the siblings' daily family life. The aim of the current study was to gain a better understanding of siblings' experiences of living in a family where one child has been diagnosed with blood cancer. METHOD: Ten siblings of children with leukemia or non-Hodgkin lymphoma completed a semistructured interview about their everyday family life experiences postdiagnosis. The verbatim transcripts of the interviews served as the data for an interpretative phenomenological analysis. RESULTS: The results showed that overall the siblings experienced a continuity in many aspects of their family life: they still experienced their family as an important source of support and information/communication, as warm and loving and as a safe harbor where family members aim to protect each other. However, at the same time, the participating siblings also expressed that some things felt unmistakably different postdiagnosis: They felt that their family as a whole had been ripped apart, with a greater focus on the diagnosed child and changing responsibilities for each family member. CONCLUSION: This study informs parents and clinicians about the daily family life experiences from the siblings' perspective, a perspective that is often overlooked. A focus on challenges as well as continuities within family life, the wish for connection expressed by the siblings, and the uniqueness of every sibling's experiences is what can be taken away from this study by psychosocial workers in the field.

The NSSI Family Distress Cascade Theory.

Nonsuicidal self-injury (NSSI) is a complex behaviour and occurs most commonly during adolescence. This developmental period is characterized by the drive to establish an equilibrium between personal autonomy and connectedness with primary caregivers. When an adolescent self-injures, caregivers often experience confusion about how to react. Reports of feeling guilt, fear, and shame are common in the wake of learning about a child's self-injury. This cascade of negative feelings and self-appraisals may lead to hypervigilance and increased caregiver efforts to control the child's behaviour. The adolescent may experience this as an intrusion, leading to worse family functioning and increased risk of NSSI. This cascade is not well acknowledged or articulated in current literature. This article remedies this gap by presenting the NSSI Family Distress Cascade.

Parents' Perspectives of Changes Within the Family Functioning After a Pediatric Cancer Diagnosis: A Multi Family Member Interview Analysis.

Pediatric cancer is a life-threatening disease that challenges the life of the diagnosed child, the parents, and possible siblings. Moreover, it also places considerable demands on family life. The aim of this study was to explore changes in the family functioning after a pediatric cancer diagnosis. Ten couples who had a child with leukemia or non-Hodgkin lymphoma were interviewed individually about their experiences. Interviews were semistructured, and the data were analyzed using Multi Family Member Interview Analysis. Three themes emerged from the data: (a) Family Cohesion: Strengthened Versus Fragmented; (b) Educational Norms and Values: Overindulgence Versus Being Stricter, and (c) Normality: Loss Versus Preservation. The conflicting dynamics present in these emerging themes exemplify the complexity of this process of family adaptation. This study illustrates the need to take into account the family level, as well as the conflicting feelings parents may experience after a pediatric cancer diagnosis.

Facing a New Face: An Interpretative Phenomenological Analysis of the Experiences of a Blind Face Transplant Patient and His Partner.

Increasing evidence points to good functional, aesthetic, and psychosocial outcomes after face transplantation. However, research investigating how patients and their families subjectively experience the transplantation process is lacking thus far. This study aims to investigate the personal experiences of a blind face transplant patient and his partner. In-depth interviews exploring different experiences were conducted with both partners separately 20 months after face transplantation. The interviews were analyzed using interpretative phenomenological analysis. Seven themes were identified in both interviews: coping with the facial trauma, motivation for the face transplantation, outcomes of the face transplantation, acceptance of the new face, gratitude toward the donor family, relation to the medical team, and dealing with the media. Two further themes were only mentioned by the patient (coping with complications and coping with blindness) and one theme only by the partner (loss of choices). The results of this study increase our understanding of the transplantation process as experienced by a face transplant recipient and his partner. They may help to better inform professionals to optimize transplantation procedures or supportive interventions.

'No daddy', 'A kind of daddy': words used by donor conceived children and (aspiring) parents to refer to the sperm donor.

Research has shown that the recipients of donor sperm can experience difficulties finding appropriate language to refer to the donor. Based on two qualitative analysis techniques, namely word count and empirical discourse analysis, we studied the words used to refer to the donor in heterosexual and lesbian (aspiring) parents and in donor conceived children. Findings show that the words used in these households are highly diverse and have at least four different interlinked functions: (1) to position the donor in relation to the nuclear family; (2) to safeguard the role of the social parent; (3) to clarify family structure; and (4) to present a positive picture of the donor. Both parents and children consciously reflect on what words to use to refer to the donor. Although parents try to keep words like 'father' and 'daddy' out of the family narrative, children use these words. These findings show that it is important for healthcare personnel and policy makers to reflect on the careful use of terminology when they address questions around sperm donation because the terminology invokes specific meanings that have an effect on how the recipients and their children perceive the role of the donor.

How to create a family? Decision making in lesbian couples using donor sperm.

OBJECTIVE: To describe the decisions lesbian couples make when creating a family through donor insemination [DI] and to explore the negotiations between the biological and the non-biological mother. METHODS: We included 18 lesbian parents (9 biological and 9 non-biological mothers) with at least one child (7-10 years old) conceived through anonymous DI. We conducted in-depth semi-structured couple interviews at the participants' homes or at the Department of Reproductive Medicine of Ghent University Hospital (Belgium) where participants were treated in the past. The data were analysed using step-by-step inductive thematic analysis based on Braun and Clarke. RESULTS: Lesbian couples were confronted with decisions related to two themes: (1) the fertility treatment and (2) the organisation of the family. In this paper we focused on three particular decisions: whether or not to go through treatment together, the acceptance of an anonymous sperm donor, and the celebration of Mother's and Father's Days. Several decisions were linked to the heteronormative social context. The lesbian couples seemed to want to adapt as much as possible to this frame. CONCLUSION: Heteronormativity and the genetic link between parent and child influenced the decision making in lesbian couples creating a family through DI.

Constructing and enacting kinship in sister-to-sister egg donation families: a multi-family member interview study.

Although intra-familial egg donation has been practiced for more than 15 years in several countries, little is known about family relationships in this family type. Framed within the new kinship studies, this article focuses on the experiential dimension of kinship in sister-to-sister egg donation families: how is kinship 'unpacked' and 'reconstructed' in this specific family constellation? Qualitative data analysis of interviews with receiving parents, their donating sisters and the donor children revealed six themes: (1) being connected as an extended family; (2) disambiguating motherhood; (3) giving and receiving as structuring processes; (4) acknowledging and managing the 'special' link between donor and child; (5) making sense of the union between father and donor; and (6) kinship constructions being challenged. This study showed the complex and continuous balancing of meanings related to the mother-child dyad, the donor-child dyad and the donor-father dyad. What stood out was the complexity of, on the one hand cherishing the genetic link with the child allowed by the sisters' egg donation, while, on the other, managing the meanings related to this link, by, for instance, acknowledging, downsizing, symbolising, and differentiating it from the mother-child bond. (A Virtual Abstract of this paper can be accessed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).

Adolescent boys with an autism spectrum disorder and their experience of sexuality: An interpretative phenomenological analysis.

This qualitative study explored how adolescent boys with autism spectrum disorder experience their sexuality. Previous research has demonstrated that sexuality is a developmental task for boys with autism spectrum disorder, as it is for their peers. Case studies have suggested a relation between autism spectrum disorder and atypical sexual development; empirical studies on this subject, however, are scant and inconsistent. This study is based on interviews with eight boys, aged 16-20 years, with Asperger's disorder or autistic disorder. Interpretative phenomenological analysis of the data revealed three major themes relating to (a) how they experience sexual feelings, think about sexuality and think about themselves as sexual beings; (b) how they perceive messages relating to sexuality in their surroundings; and (c) how they experience finding and having a partner and partnered sex. We believe that attention to these themes is needed in assessment, education and further research.

Family Communication about Donor Conception: A Qualitative Study with Lesbian Parents.

In this qualitative study of 10 lesbian couples who built their families through anonymous donor conception, we explore how lesbian parents experience communication about the donor conception within the family. While for these families "disclosure" of donor conception is often seen as evident, the way parents and children discuss this subject and how this is experienced by the parents themselves has not received much research attention. To meet this gap in the literature, in-depth interviews with lesbian couples were conducted. An Interpretative Phenomenological Analysis showed that this family communication process can be understood within the broader relational context of parent-child relationships. Even though parents handled this family communication in many different ways, these were all inspired by the same motives: acting in the child's best interest and-on a more implicit level-maintaining good relations within the family. Furthermore, parents left the initiative for talking about the DC mostly to the child. Overall, parents aimed at constructing a donor conception narrative that they considered acceptable for both the children and themselves. They used different strategies, such as gradual disclosure, limiting the meaning of the donor, and justifying the donor conception. Building an acceptable donor conception narrative was sometimes challenged by influences from the social environment. In the discussion, we relate this qualitative systemic study to the broader issues of selective disclosure and bidirectionality within families.

Toward Understanding the Child's Experience in the Process of Parentification: Young Adults' Reflections on Growing up With a Depressed Parent.

This article reports on a qualitative study with 21 young adults who grew up with a depressed parent. We examined how young adults make sense of their childhood experiences of parental depression and how their retrospective reflections help us to understand the experiences of children and the processes of parentification. Participants recounted that their childhood consisted mainly of actions in the service of family well-being. At that time, they reflected on their own experiences only rarely. In adolescence, there was an evolution toward a greater consideration for oneself and a repositioning within the family. In the discussion, we explore the therapeutic implications of this study--and in particular--the meaningfulness of silence in the family process of parentification.

Experiences of Family Relationships Among Donor-Conceived Families: A Meta-Ethnography.

In this qualitative evidence synthesis, we explore how family relationships are experienced by parents who used gamete donation to conceive. We systematically searched four databases (PubMed, Web of Science, PsycINFO, and ProQuest) for literature related to this topic and retrieved 25 studies. Through the analysis of the qualitative studies, a comprehensive synthesis and framework was constructed. Following the meta-ethnography approach of Noblit and Hare, four main themes were identified: (a) balancing the importance of genetic and social ties, (b) normalizing and legitimizing the family, (c) building strong family ties, and (d) minimizing the role of the donor. Underlying these four main themes, a sense of being "different" and "similar" at the same time was apparent. Findings are discussed in terms of their implications for studying and counseling donor-conceived families.

Reflections of older adults on the process preceding their suicide attempt: a qualitative approach.

The study explores the reflections of older adults on the process preceding their suicide attempt. Data were gathered using in-depth interviews with eight older inpatients who had attempted suicide. Grounded theory methodology was used for data analysis. They described their life and the self as disrupted after experiencing a loss, loneliness, loss of control, and unwillingness to continue living the current life. The findings suggest that the concurrence of these constructs precedes a suicide attempt in later life.