#strokesurvivor on Instagram: Conjunctive experiences of adapting to disability

This study investigates practices of sharing the experience of stroke on Instagram through use of the hashtag #strokesurvivor. The hashtag brings together people from different cultural backgrounds and professions and those who experience different kinds of healthcare and varying degrees of physical or cognitive impairment. Through a digital ethnography of #strokesurvivor, the conjunctive experiences and communicative practices of the community are reconstructed. Instagram enables specific forms of sociality and sharing, like long-term visual storytelling and influencer dynamics. Adapting to a transformed body and identity is perceived and practiced as a conjunctive experience and a struggle. A strong orientation towards a “normal life” is a recurring theme. Mourning and perseverance are put forward as two modes of coping with and adapting to a transforming body and self

The Effect of Social Feedback in a Reddit Weight Loss Community

This is a preprint of an article appearing at ACM Digital Health 201

More Than “Just a Friend”: Exploring the Therapeutic Needs of Adult Survivors of a Suicide Loss of a Friend

Individuals who are bereaved by the suicide loss of a loved one (also known as “suicide survivors”) face high rates of complicated grief, mental illness, social isolation, experiences of stigma, and suicide attempts. While suicide loss therapy (or “postvention”) attracts many individuals grieving familial suicides, those impacted by the suicide loss of a close friend are underrepresented in both individual and group therapies, despite indications that friend suicide survivors are impacted at an equivalent level and frequency to family members. Using a constructivist grounded theory method, this study aimed to investigate the lived experiences and therapeutic needs of 8 adults who identified as suicide survivors and attended psychotherapy to address grief after the suicide loss of a friend. Findings suggest that friend suicide survivors benefit from both individual therapy and suicide loss support groups; specifically, friend suicide survivors view therapy as a space to process complex emotions, challenge self-blame, obtain education about grief, and connect with group members. However, friend suicide survivors also desire to receive more specialized care from individual therapists with experience and training in suicide bereavement. While friend suicide survivors may experience challenges to help-seeking, including stigma and a perceived lack of social permission to grieve friends, they may feel motivated by the “wake-up call” of friends’ suicides and existing relationships with therapists. Outside of therapy, friend suicide survivors appear to benefit from social support from other suicide survivors and engaging in meaning-making activities. Results of this study have implications for training of mental health professionals and best practices for working with suicide survivors

The Role of Online Support for Anaplastic Thyroid Cancer Patients and Survivors

The rate of thyroid cancer diagnosis has risen, and researchers\u27 findings point to improved diagnostic testing and overdiagnosis as well as increases in actual incidences as the reasons behind this rise. With improved treatments and testing methods, the number of thyroid cancer survivors has also increased. Thyroid cancer presents challenges to coping and can cause significant stress in an individual\u27s life. More specifically, anaplastic thyroid cancer (ATC) creates complicated challenges for patients and survivors. The problem is patients need support during diagnosis and treatment when adjusting to their \u27new normal\u27 and may be reaching to Internet based social support groups to gain health information. Lazarus\u27s transactional theory of stress and coping formed a framework for this generic qualitative exploration of the types of support and information ATC patients and survivors receive through participating in an online Facebook support group. Thematic content analysis was conducted on archival data collected from the group over 4 months, namely 2,384 posts created by 166 group members. From this analysis, a picture relevant to all group participants was developed to include themes found among the data. Themes of emotional, informational and spiritual support emerged as well as the significance of using emojis as symbolic expressions of support. Implications for social change include expanding the theoretical knowledge of the ATC patient and survivor experience and the types of support available in online environments. This knowledge can lead to positive social change in terms of improving support resources, which may help in recovery from ATC; lessening the burden on patients, families, providers, insurance, the healthcare system, and our society as a whole

“If It Is Written by Allah, There Is Nothing That Can Stop It”: Saudi women’s breast cancer narratives

The purpose of this study was to identify cultural models of breast cancer held by Saudi women and to explore how these may influence early detection and treatment-seeking behaviors. Data were collected via semi-structured interviews with breast cancer survivors (n=20) from two Western cities in Saudi Arabia. Respondents were recruited through social networking, using purposive, snowball sampling. Illness narratives elicited during interviews were transcribed, coded and then analyzed using a modified grounded theory approach. Results suggest that fatalism, perceived threats to traditional role fulfillment, and a preference for traditional therapies commonly mark the breast cancer experiences of Saudi women, influencing their early detection and treatment-seeking behaviors. A more nuanced understanding of emic viewpoints could help to improve public health messaging and intervention strategies in Saudi Arabia

An Exploratory Factor Analysis of the Survivor of Suicide Support Group Facilitator Scale: Identifying Meaningful Factors for Group Facilitation and Outcomes

Support groups for suicide loss survivors are a relatively common resource used by those who are left to cope in the aftermath of a suicide death. Though descriptive studies have been used to provide an overview of support groups in the past, there have been no efforts to understand nuances of these groups and the impact of these groups and differing facilitation styles on the bereavement experience for attendees. This study explores primary data collected between March 2015 and December 2015 with a sample of 138 survivor of suicide loss support group facilitators in the United States and several other countries. Meaning making and meaning reconstruction is presented as the primary theory used to examine the attitudes of support group facilitators. Basic analytic procedures were used to explore sample descriptives, and an Exploratory Factor Analysis (EFA) with an oblique rotation was used to identify the factors within the Survivor of Suicide Loss Support Group Facilitator Scale. Three factors were revealed with a simple structure, representing the latent themes of (1) Facilitator Perspective on the Role of the Story (α=.73), (2) Facilitator Perspective on the Role of the Facilitator (α=.63), and (3) Facilitator Perspective on Role of the Loss Survivor (α.59). Bivariate analyses revealed that factors 1 and 2 both had a significant relationship with length of time the facilitator had been leading the group, facilitator’s level of compassion satisfaction, and facilitator’s level of burnout. The findings of the EFA support the use of the scale as a tool to discern differences in attitudes about the role of meaning making and sharing of stories in the group as well as the role of the facilitator in aiding this process. The findings provide important information for understanding variation in support group facilitation styles and have implications for future exploration of outcomes for group attendees based on facilitator attitude and style. Implications for practice and future research are discussed

Opening the Closet Door on Reproductive Cancer Care for Sexual Minority Women: Interactions with Health Providers

The aim of this critical feminist study was to illuminate aspects of interactions between sexual minority women with reproductive cancers and their health care providers (HCPs) that may perpetuate or challenge barriers to receiving equitable care. For this qualitative inquiry, one-on-one interviews were conducted with six reproductive cancer survivors who self-identified as lesbian or bisexual women, four of whom were also health or service providers, and one Registered Nurse who was not also a cancer survivor (n=7). Four themes emerged from these interviews: the reproductive cancer journey, the meaning of family, interactions with HCPs, and environmental barriers. The participants outlined areas they felt were most important to their cancer care and interactions with HCPs, as well as some of the barriers they encountered. Aspects related to gender, sexuality, reproduction, and their intersections were pervasive throughout the findings and shaped the meaning of reproductive cancers for sexual minority women

Social Support in Young Adult Cancer Survivors and Their Close Social Network Members

A cancer diagnosis often causes biographical disruption in the lives of young adult (i.e., 18-39; YA) survivors and their close social network members (i.e., familial, plutonic, or romantic relational partners with whom the survivor has a salient relationship; SNM). In order to integrate their illness into their lives, normatively regain balance and equilibrium, and achieve a “new normal” following a cancer diagnosis, YA survivors and their close SNMs must work to reconstruct their biographies by engaging in tangible interpersonal communication processes often used to initiate and maintain relationships. However, YA cancer survivors report facing social struggles due to the biographical disruption of their illness across the trajectory of diagnosis, treatment, and survivorship. To learn more about their unique social experience of cancer, I conducted private, open-ended narrative interviews with 20 YA survivor-close SNM dyads, 1 YA survivor-SNM close triad, and 10 individual YA survivors (N = 51). I used thematic narrative analysis to determine how and why YA cancer survivors and their close SNMs communicate social support messages with romantic partners, family, friends, peers, and one another. By examining the narratives of YA survivors, their close SNMs, and the dyad itself, this dissertation explores the interpersonal communication processes used to initiate and maintain relationships across the illness trajectory by focusing on the barriers and facilitators these individuals experience in the communication of social support. Through their individual narrative accounts, YA survivors explained why and how they perceived various support attempts from others to be positive or negative, and their close SNMs detailed their attempts to navigate the YA’s larger support network and assume the duties inherent in their newly-adopted “top supporter” role. In addition, reports from YAs and their SNMs revealed that they often engaged in mutual pretense, a unique and often unsustainable form of support that occurred between YA survivors and their close SNMs involving topic avoidance and emotional management. Implications for the advancement of interpersonal communication theory and for practical intervention targeting YA patients and survivors, their close SNMs, and medical practitioners are also discussed

Phoenix Ink: Psychodynamic Motivations for Tattoo Attainment by Survivors of Trauma

Tattoos adorn people from all over the world and date back as far as the Stone Age. Tattoos adorn people from all over the world and motivations for tattoo attainment have been studied recently. Still, there remains limited research on the potential therapeutic properties of tattoo attainment, particularly for survivors of sexual trauma. The purpose of this study was to investigate the experience of the tattoo process for survivors of sexual trauma and their motivations for tattoo attainment. This qualitative exploratory study interviewed both survivors of sexual trauma (N=10) and tattoo artists (N=7) to gain a wider perspective on the motivations for tattoo attainment among survivors of sexual trauma. Common themes of tattoo attainment emerged among trauma survivors, with the most prevalent being reclamation, catharsis, and tattoo acts as personal narrative. Among tattoo artists the common themes were that tattoos act as non-normative expression and have therapeutic qualities. Further research should include diversified populations and a larger sample size. Implications for Social work practice include utilizing tattoo for narrative exploration and rapport building

Exploring the Relational Impact of Breast Cancer on Younger Women Partnered with Women

Approximately 268,600 new cases of breast cancer in women are diagnosed each year in the United States. Due to improvements in cancer detection and treatment, survivorship is higher than in the past. More than ten percent of new diagnoses are in women 45 years or younger. There are approximately one million sexual minority individuals living with cancer in the US, yet this population is understudied in cancer care. For sexual minority women with breast cancer, sociocultural factors such as lack of affirmative care influences their disease experience. Further, sexual minority women and women partnered with women may be subject to minority stress experiences, such as discrimination and stigma, during daily life and while coping with cancer. This dissertation study sought to qualitatively explore the relational impact of breast cancer on younger women partnered with women. Ten individuals, members of five monogamous women couples, were interviewed for the study. The focus of the study is on women who are 50 years of age or younger, and wherein one partner was diagnosed with breast cancer at age 45 or younger. Participants completed a questionnaire measuring mutuality in their relationship and a demographic questionnaire. Interviews explored the following in the context of breast cancer, 1) impact of breast cancer on younger survivors and their women partners with regard to the Relational Cultural Theory constructs of authenticity, mutuality, relationship awareness, connection, and disconnection, 2) barriers and supports to couples’ sense of connection with each other, 3) how minority stress may affect the couple’s relationship dynamic and ability to feel connected and 4) lasting relational changes within the couple after cancer. The qualitative interview data was rigorously analyzed by a research team using the Consensual Qualitative Research method. The domain level findings include the relational processes that contributed to more or less connection, as well as how external influences such as healthcare providers and systems, interpersonal relationships, and organizational support impacted their connection. The findings contribute to the psycho-oncology research literature by presenting an in-depth description of the lived experiences of women partnered with women, who are also younger in age, a population that has not been adequately represented in the literature. Further, it highlights how a variety of influences, both within and outside of women couples, such as sociocultural forces, contributed to their sense of connection and well-being