Ellen Olshansky

Living With Diabetes Normalizing the Process of Managing Diabetes

Purpose The purpose of this qualitative study was to explore perceptions of people with diabetes about their experience of living with and managing their diabetes. Methods This study was part of a larger study of patients with diabetes who used a novel computer portal system for access to information about diabetes and to their health care providers for enhanced communication. The research method used for this portion of the study was grounded theory methodology, a particular kind of qualitative research method. Results A central theme generated from the data was “normalizing an identity as a person with diabetes.” The participants described themselves as diabetic; they took on an identity in which having diabetes was central. They struggled with how to become “a person with diabetes” rather than a “diabetic person.” Conclusions For people who are diagnosed with diabetes, there is a struggle to become a person with diabetes rather than a diabetic person and to manage the lifestyle changes that are mandated by this role/identity. One way of dealing or coping with this new identity is to begin to “normalize” these lifestyle changes—to view them as healthy living for all people, those with and without diabetes. This will then have implications for interventions—encouraging healthy lifestyles among people with diabetes rather than emphasizing that people with diabetes are “different from” the general population.

Interest in the Use of Computerized Patient Portals: Role of the Provider–Patient Relationship

BackgroundBioinformatics experts are developing interactive patient portals to help those living with diabetes and other chronic diseases to better manage their conditions. However, little is known about what influences patients’ desires to use this technology.ObjectiveTo discern the impact of the provider–patient relationship on interest in using a web-based patient portal.DesignQualitative analysis of focus groups.ParticipantsTen focus groups involving 39 patients (range 2–7) recruited from four primary care practices.ApproachA qualitative approach was used, which involved reading transcribed texts until a consensus was reached on data interpretation. An intercoder reliability kappa score (0.89) was determined by comparing the provider–patient relationship talk selected by the two coders. A conceptual framework was developed, which involved the development and refinement of a codebook and the application of it to the transcripts.ResultsInterest in the portal was linked to dissatisfaction with the provider–patient relationship, including dissatisfaction with provider communication/responsiveness, the inability to obtain medical information, and logistical problems with the office. Disinterest in the portal was linked to satisfaction with the provider–patient relationship, including provider communication/responsiveness, difficulty in using the portal, and fear of losing relationships and e-mail contact with the provider. No patient identified encrypted e-mail communication through the portal as an advantage.ConclusionsPromoting the use of computerized portals requires patient-based adaptations. These should include ease of use, direct provider e-mail, and reassurances that access and interpersonal relationships will not be lost. Education is needed about privacy concerns regarding traditional e-mail communication.

From Limbo to Legitimacy: A Theoretical Model of The Transition to the Primary Care Nurse Practitioner Role

The initial transitional year of professional practice is thought to provide the critical foundation on which new professionals build their expertise. The purpose of this study was to describe the experiences of new nurse practitioner graduates during their first year of primary care practice. Thirty-five persons were interviewed alone or in focus groups at approximately 1, 6, and 12 months after graduation. Grounded theory methodology guided the data collection and analysis. A theoretical model was constructed that represents the transition to the primary care nurse practitioner role. This model consists of a process called From Limbo to Legitimacy, which encompasses four major categories: Laying the Foundation, Launching, Meeting the Challenge, and Broadening the Perspective. Each category contains a set of subcategories that detail the multiple aspects of the experience. This model highlights both the distress and the accomplishments of the initial year of advanced practice.

Identity of self as infertile: an example of theory-generating research.

This article presents results of a study using grounded-theory methodology to explore the meaning of infertility to those persons experiencing it. Thirty-two persons were interviewed, including 15 married couples and two married women whose husbands were either unable or unwilling to participate in the study. Forty-five semistructured interviews were conducted, as each person was interviewed separately and 13 couples were interviewed conjointly. Through the ongoing process of data collection and analysis, a substantive grounded theory was generated, with a core concept being that as persons experience unwanted infertility they take on a central identity of themselves as infertile. The process of taking on and managing this identity is described.

Maturity and adherence in adolescent and young adult heart recipients

Abstract: Background: Pediatric transplant (txp) teams note high rates of non‐adherence and risky behaviors linked to morbidity and mortality among adolescent and young adult recipients. Clinicians and parents alike report symptoms of social immaturity and failure to appreciate consequences of risky behavior; relationships between the two have not been studied in this population.

Theoretical Issues in Building a Grounded Theory: Application of an Example of a Program of Research on Infertility

Grounded theory research is often described as the foundation for subsequent deductive studies that test out the resulting theory or interventions based on it. Another view, however, is that an initial grounded theory study can serve as the basis for a series of such studies in a program of research that seeks to modify, to verify, and to elaborate on the evolving theory. This article aims to (a) present an example of a program of research on infertility whereby a grounded theory of identity of self as an infertile person was developed and elaborated on, and (b) raise theoretical questions about grounded theory methodology in an effort to advance our thinking about this methodology and how it can contribute to theory generation through linked studies in a program of research.

The decision-making process of genetically at-risk couples considering preimplantation genetic diagnosis: Initial findings from a grounded theory study

Exponential growth in genomics has led to public and private initiatives worldwide that have dramatically increased the number of procreative couples who are aware of their ability to transmit genetic disorders to their future children. Understanding how couples process the meaning of being genetically at-risk for their procreative life lags far behind the advances in genomic and reproductive sciences. Moreover, society, policy makers, and clinicians are not aware of the experiences and nuances involved when modern couples are faced with using Preimplantation Genetic Diagnosis (PGD). The purpose of this study was to discover the decision-making process of genetically at-risk couples as they decide whether to use PGD to prevent the transmission of known single-gene or sex-linked genetic disorders to their children. A qualitative, grounded theory design guided the study in which 22 couples (44 individual partners) from the USA, who were actively considering PGD, participated. Couples were recruited from June 2009 to May 2010 from the Internet and from a large PGD center and a patient newsletter. In-depth semi-structured interviews were completed with each individual partner within the couple dyad, separate from their respective partner. We discovered that couples move through four phases (Identify, Contemplate, Resolve, Engage) of a complex, dynamic, and iterative decision-making process where multiple, sequential decisions are made. In the Identify phase, couples acknowledge the meaning of their at-risk status. Parenthood and reproductive options are explored in the Contemplate phase, where 41% of couples remained for up to 36 months before moving into the Resolve phase. In Resolve, one of three decisions about PGD use is reached, including: Accepting, Declining, or Oscillating. Actualizing decisions occur in the Engage phase. Awareness of the decision-making process among genetically at-risk couples provides foundational work for understanding critical processes and aids in identifying important gaps for intervention and future research.

Web-Based Tailored Intervention for Preparation of Parents and Children for Outpatient Surgery (WebTIPS): Formative Evaluation and Randomized Controlled Trial

BACKGROUND:The purpose of this 2-phase project was to conduct a formative evaluation and to test the preliminary efficacy of a newly developed Web-based Tailored Intervention for Preparation of parents and children undergoing Surgery (WebTIPS). METHODS:Phase 1 enrolled 13 children 2 to 7 years of age undergoing outpatient elective surgery and their parents for formative evaluation of WebTIPS. Parent participation focus groups are common in qualitative research and are a method of asking research participants about their perceptions and attitudes regarding a product or concept. In phase 2, children 2 to 7 years of age in 2 medical centers were assigned randomly to receive the WebTIPS program (n = 38) compared with children receiving the standard of care (n = 44). The primary outcome of phase II was child and parent preoperative anxiety. RESULTS:In phase 2, parents reported WebTIPS to be both helpful (P < 0.001) and easy to use (P < 0.001). In phase 2, children in the WebTIPS group (36.2 ± 14.1) were less anxious than children in the standard of care group (46.0 ± 19.0) at entrance to the operating room (P = 0.02; Cohen d = 0.59) and introduction of the anesthesia mask (43.5 ± 21.7 vs 57.0 ± 21.2, respectively, P = 0.01; Cohen d = 0.63). Parents in the WebTIPS group (32.1 ± 7.4) also experienced less anxiety compared with parents in the control group (36.8 ± 7.1) in the preoperative holding area (P = 0.004; Cohen d = 0.65). CONCLUSIONS:WebTIPS was well received by parents and children and led to reductions in preoperative anxiety.

Further exploration: maturity and adherence in adolescent and young adult heart transplant recipients.

Context Pediatric transplant clinicians note high rates of nonadherence with medications, appointment keeping, and laboratory tests and high rates of engagement in high-risk behaviors among older adolescents and young adult recipients. The caregivers also report symptoms of identity confusion, social immaturity, and failure to appreciate consequences of risky behavior among recipients. Objective To build on an earlier study that identified developmental characteristics that distinguish poor from good adherers. Design Qualitative methods were used to explore key themes identified in the first study with heart transplant recipients and their significant others. Results This research confirmed the themes of developmental maturity suggested by the first study: good adherers were able to integrate the transplant into sense of self, become independent adults, and achieve normalcy; poor adherers continued to “push away” the transplant experience and worried that they would never be normal. The good adherers, their parents, and friends had views of relationships that were congruent, acknowledging difficulties, discussing them, and moving toward mutual satisfaction. The poor adherers, their parents, and friends expressed incongruent views of the relationships, avoiding discussion of problems and idealizing relationships. Discussion Strategies for clinicians, family, and friends to increase maturity and independence among older adolescent and young adult heart transplant recipients are described.

Pregnancy and birth history influence women's experience of menopause

Objective: The determinants of experiencing menopausal symptoms are complex, representing biological, psychological, and social factors. We report the impact of one such factor, fertility, on the experience of menopausal symptoms. We hypothesize that nulliparous women will have more dissatisfaction with childbearing choices and more negative attitudes toward menopause but will experience fewer menopausal symptoms. Design: Women aged 40 to 65 years were recruited from a single internal medicine practice to participate in a 5-year longitudinal study of the impact of menopause on health-related quality of life. Women completed questionnaires including the RAND-36, attitudes toward menopause, menopausal symptoms, and fertility and childbearing. Based on self-reported pregnancy and birth history, we categorized women as parous (one or more live births), nulligravida (no pregnancies or births), and nulliparous (one or more pregnancies and no live births). Categorical variables were analyzed using univariable and multivariable ordered logistic and logistic regression. Continuous variables were analyzed using Students t test and multivariable linear regression techniques. Results: The 728 participants were, on average, 50.8 years old with 2.4 pregnancies and 1.7 live births. Compared with parous women, nulligravida and nulliparous women were more likely to report being very dissatisfied with childbearing choices (odds ratio [OR] [95% CI]: 3.3 [2.3-4.6] and 4.0 [2.5-6.4], respectively). Nulliparous, but not nulligravida, women expressed more negative attitudes toward menopause compared with parous women (P < 0.001). Nulligravida and nulliparous women were half as likely to report hot flashes as parous women (OR [95% CI]: 0.6 [0.4-0.9] and 0.5 [0.3-0.9], respectively). Compared with parous women, nulligravida women were less likely to report vaginal dryness (OR [95% CI]: 0.5 [0.3-0.7]). Conclusions: Our study examined the impact of pregnancy and birth history on menopausal symptoms, and the findings support the hypothesis that women who experience infertility may find menopause to be a time of normalcy and experience fewer hot flashes. Both physiologic and psychosocial mechanisms deserve further study.