Fatherhood at Work and at Home: An analysis of men's joint identifications with parenting and work

Thesis advisor: Paul G. SchervishMen's experiences at home and at work are changing, bringing to light new ways in which fathers identify with these two realms. This research expands upon current understandings of paternal identity by analyzing the potential for overlap and reinforcement between men's attachments to work and parenting. In this analysis, non-hierarchical, independent measures of work and parenting identities are constructed from a recently surveyed sample of 726 "New fathers"--professional, high-earning white men with children under 18, a group arguably marked by the desire to be more involved in home life, yet also faced with high work demands. In order to determine the differences between men that report identifying strongly with both work and parenting from those that do not, I use multinomial logistic regression to capture the association between demographic traits, time spent in both roles, support from others, perceptions of enrichment and the odds of identifying strongly with either work and family, neither, or both. The results demonstrate that time spent in a role, support from coworkers and managers, and higher reports of enrichment between the spheres are all associated with a respondent's odds of reporting dually strong attachments to work and parenting. The findings yield both theoretical contributions and practical implications, providing 1) new understandings of how some fathers experience synergistic parenting and work identifications, 2) evidence that fathers' perceptions of workplace support and positive overlap between their roles are associated with reports of higher identification with both, and 3) directions for future research that address how institutional practices in the workplace relate to fathers' reports of dually strong role identifications.Thesis (MA) — Boston College, 2012.Submitted to: Boston College. Graduate School of Arts and Sciences.Discipline: Sociology

The New Dad: A Portrait of Today's Father

Over the last six years, the Boston College Center for Work & Family (BCCWF) has completed a series of research studies on the changing face of fatherhood in America. In 2009, we recognized that the lack of high-quality, in-depth research on fathers had led to many misconceptions, including: Inaccurate portrayals of fathers in the mediaOutdated workplace assumptions about the caregiving roles that fathers playEmployer work-family programs targeted, explicitly or implicitly, at women, making men reluctant to take advantage of these offeringsIncreased work-family conflict for fathers that is not widely recognized or understoodPerhaps the most troubling problem is that fathers' voices have often been absent from, or perhaps even seen as irrelevant to, work-family conversations. In an effort to address this, we began our journey with a relatively small sample, qualitative study of fathers of very young children to better understand their experiences. We coined the title "The New Dad" for what became our research series and have published a report each year exploring differing perspective of the role dads play today at work and in the home

"On a good day no one knows": Management of disease impacts in Barth Syndrome

Thesis advisor: Sara MoormanImproved survival for medical conditions that were previously fatal in infancy has led to more individuals living longer with chronic illnesses. These individuals, some of whom have largely unapparent, unpredictable, and yet severe symptoms from birth, may experience a unique set of physical, social, and emotional impacts associated with their condition as compared to youth with less severe, treatable pediatric conditions or individuals with adult-onset conditions. This dissertation explores these challenges using the case of youth with Barth Syndrome (BTHS), a rare, severe, genetic condition in males associated with life-limiting and life-threatening symptoms. Research questions explored: (1) how symptom severity, visibility, and controllability informed individuals’ social management and legitimization of BTHS; (2) how awareness regarding their limited, uncertain prognosis impacted life planning for youth with BTHS; and (3) which coping strategies individuals with BTHS used to manage the physical, social, and emotional impacts associated with their incurable, life-limiting condition. Thirty-three sixty-minute interviews were conducted in two groups: individuals with BTHS ≤15 years of age (n=18) and/or their caregivers, and individuals with BTHS ≥16 years of age (n=15). Interview transcripts were analyzed using Atlas.ti. Results demonstrated that (1) the severity, visibility, and lack of control over BTHS symptoms was associated with individuals needing to seek social support for their condition, rather than attempting to pass as healthy as other males with chronic conditions have been found to do; (2) individuals opted to forgo socially “on-time” goals (i.e., long-term, knowledge-based goals) based on their perceptions of their limited, uncertain time horizons and struggled to identify alternative goals; and (3) individuals used secondary coping strategies (i.e., regulating their emotional responses to their external stressor rather than controlling the stressor itself) to cope with the impacts associated with having an incurable, severe, and chronic health condition. These results can be used to inform practices for providing increased social and institutional support to chronically ill youth, including promoting positive coping strategies and facilitating meaningful, attainable, goal selection. These interventions may alleviate some of the challenges faced by the growing number of youth living with chronic illnesses seeking to safely and meaningfully engage in the realms of work, family, education, and social life.Thesis (PhD) — Boston College, 2019.Submitted to: Boston College. Graduate School of Arts and Sciences.Discipline: Sociology

Development and content validity of the Barth Syndrome Symptom Assessment (BTHS-SA) for adolescents and adults

Abstract Background Barth Syndrome (BTHS) is a rare genetic disorder that presents as a complex of debilitating symptoms and reduced life expectancy. Well-developed, BTHS-specific assessments measuring primary signs and symptoms of BTHS are not currently available, making it difficult to evaluate treatment effects in BTHS clinical studies. The objective of this research was to develop symptom-focused patient-reported outcome (PRO) measures for use in clinical studies with adolescents and adults with BTHS. Methods Concept elicitation interviews (CEIs) with pediatric (n = 18, age < 16 years) and adult (n = 15, age ≥ 16 years) individuals with BTHS and/or their caregivers were conducted to identify signs and symptoms relevant to BTHS and important to individuals with the condition. Based on CEI results, questionnaire construction activities were conducted to create unique adolescent and adult versions of the Barth Syndrome-Symptom Assessment (BTHS-SA). The questionnaires were evaluated in cognitive debriefing interviews (CDIs) with adolescents (n = 12; age 12- < 16 years) and adults (n = 12; age ≥ 16 years) with BTHS to assess relevance and readability of the tools. Results During the CEIs, a total of 48 and 40 signs and symptoms were reported by the pediatric and adult groups, respectively; 31 were reported by both age groups. Fatigue/tiredness and muscle weakness were the symptoms most frequently reported by both pediatric and adult patients with BTHS as important to improve with an effective treatment. The CEI results informed construction of a nine-item version of the BTHS-SA for adolescents and an eight-item version for adults. Developed for daily administration, each version asks respondents to rate symptom severity “at its worst” over the 24 h prior to administration. CDIs with both adolescents and adults with BTHS demonstrated that each BTHS-SA version was reflective of the disease experience and that respondents could interpret the questionnaire as intended and provide responses that accurately reflected their symptom experience. Conclusions The BTHS-SA adolescent and adult versions are content-valid PRO measures that can be used to evaluate severity of disease-specific symptoms in future clinical trials. Given the lack of available and well-developed assessments in this underserved therapeutic area, these tools fulfill a need for clinical researchers developing treatments for individuals with BTHS

Patient-Reported Outcomes in Metastatic Breast Cancer: A Review of Industry-Sponsored Clinical Trials

Introduction Patient-reported outcome (PRO) measures serve to capture vital patient information not otherwise obtained by primary study endpoints. This paper examines how PROs are utilized as endpoints in industry-sponsored metastatic breast cancer clinical trials. Methods A search was conducted in the clinicaltrials.gov web site for trials involving common treatments for metastatic breast cancer. Thirty-eight clinical trials were identified which included a PRO endpoint in the study, and data were extracted and summarized. Results Overall, 17 unique PRO questionnaires and 14 concepts of measurement were identified as secondary or exploratory endpoints. The Functional Assessment of Cancer Therapy—Breast was the most frequently utilized questionnaire, commonly implemented to assess quality of life. The EORTC QLQ-C30 was also frequently used to measure quality of life or pain. Conclusion This review shares insights into the role of PROs in trials for metastatic breast cancer from which treatment developers and other stakeholders can enhance successful implementation of the patient voice into future trials

Development of symptom-focused outcome measures for advanced and indolent systemic mastocytosis: the AdvSM-SAF and ISM-SAF©

Abstract Background Advanced systemic mastocytosis (AdvSM), indolent systemic mastocytosis (ISM), and smoldering systemic mastocytosis (SSM) are rare diseases characterized by neoplastic mast cell infiltration of more than one organ. A content-valid patient-reported outcome (PRO) questionnaire that assesses relevant signs and symptoms that are important and understandable to individuals with a condition is critical for assessing new treatment benefit as well as supporting product labeling claims. Notably, no such PRO questionnaire has been developed in accordance with regulatory and scientific guidelines for use in AdvSM, ISM, and SSM patient populations. To fill that gap, this study documents the development and content validity of instruments evaluating signs and symptoms of systemic mastocytosis. Methods A review of peer-reviewed literature, advice meetings with clinical therapeutic area experts, patient concept elicitation interviews, concept selection and questionnaire construction meetings, and patient cognitive debriefing interviews were conducted, and regulatory feedback was incorporated. Results For AdvSM, 26 sign- and symptom-level concepts were identified in literature, 39 by clinicians, and 33 by patients. For ISM/SSM, 38 sign- and symptom-level concepts were identified in the literature, 39 by clinicians, and 57 by patients. Two patient-reported instruments, the Advanced Systemic Mastocytosis Symptom Assessment Form (AdvSM-SAF) and Indolent Systemic Mastocytosis Symptom Assessment Form (ISM-SAF)(©Blueprint Medicines Corporation), were developed based on consolidated findings. Cognitive debriefing interviews with AdvSM and ISM patients showed the AdvSM-SAF and ISM-SAF were understood and interpreted as intended by the majority of patients. Conclusion The AdvSM-SAF and ISM-SAF are content-valid tools measuring symptoms from AdvSM and ISM patients’ perspective.http://deepblue.lib.umich.edu/bitstream/2027.42/173790/1/13023_2021_Article_2035.pd