Maria Gudmundsdottir

Chemotherapy-Related Fatigue in Childhood Cancer: Correlates, Consequences, and Coping Strategies

The aim of this research is to examine the experience and impact of chemotherapy-related fatigue in recently diagnosed pediatric oncology patients. A repeated-measures, within-subjects, mixed (quantitative plus qualitative) design was used to prospectively assess fatigue during early chemotherapy cycles and to compare fatigue to depressive symptoms. Parental interviews collected concurrently were analyzed for descriptions of the childs fatigue and mood states and for strategies to cope with fatigue. Results indicated a significant correlation between fatigue and depression, but qualitative analyses suggested that the 2 phenomena may be unique and distinguishable. Qualitative analyses of parent interviews also identified specific strategies that were frequently used in response to high levels of fatigue. The findings illustrate the significant impact of chemotherapy-related fatigue in children being treated for cancer. The study also provides guidance for the assessment of fatigue and related symptoms and identifies specific strategies for coping with fatigue.

Building a New World Habits and Practices of Healing Following the Death of a Child

The goal of this interpretive phenomenological study is to describe and understand significant habits and practices developed by families bereaved from the sudden and unexpected loss of their children. Data were primarily collected through the interviewing of 15 family members in seven families. At least four interviews were conducted with each family. Family members were interviewed both together and separately. The analysis of the data illuminated the development of significant and meaningful family practices. These practices acknowledged the death of the children, integrated their loss into the everyday lives of these families, allowed for continuing connection, and were of utter importance as they contributed to family healing.

Silence, stigma, and shame: a postmodern analysis of distress during menopause.

Because of the complexity of a midlife womans life and the variation of the manifested symptoms of menopause, much remains inconclusive regarding the experience of distress during the menopause transition. The purpose of this narrative analysis study was to examine experiences of distress during the menopause transition using a postmodern feminist framework. Findings include experiences of shame related to symptom experience and prevailing social discourses on menopause and aging. Clinicians must be cautioned of the potential for silencing and withdrawal in women who may not be receiving adequate support, and must advocate for more choices for midlife women.

Moving family-centered care forward: Bereaved fathers' perspectives.

This article describes the key behaviors of “excellent” pediatric healthcare providers, a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for children and their families. Using interview data from a multisite grounded theory study of 60 fathers with a deceased child, five behaviors were identified: getting to know the family as individuals, talking about non–healthcare-related topics, connecting in a human-human relationship, including parents as team members, and applying specialized knowledge to help the family. These behaviors are consistent with the goals of family-centered care, but they are inconsistently practiced, resulting in less-than-optimal care for children and their families during periods of crisis and vulnerability. A renewed focus on relationship building and interactions with families is needed, as well as a reevaluation of the training of pediatric healthcare providers.

Distress During the Menopause Transition

In 2010, nearly 400 million women worldwide were of menopause age (45-54). Although many women transition through menopause with ease, some experience distress and a subsequent decrease in quality of life. The purpose of this qualitative study was to examine the experiences of distress in women during the menopause transition. A narrative analysis methodology was used maintaining participants’ complete narratives when possible. In-person interviews of 15 midlife women were digitally audio recorded and transcribed verbatim. Women shared narratives of distress related to menstrual changes, emotional instability, vaginal dryness, and decreased libido affected by their relationships with self, partners, work, and family. Some experiences were presented against a backdrop of the past and influenced by concerns for the future. Detailed stories illuminated the effect that distressful symptoms had on quality of life and captured how intricately woven symptoms were with the women’s interpersonal and social lives.

Can you give me respect? Experiences of the urban poor on a dedicated AIDS nursing home unit.

&NA; In this interpretive phenomenology study, 10 impoverished adults with advanced HIV disease, ages 35 to 58 years, described their understanding of dignity and their everyday experiences in an urban AIDS‐dedicated nursing home unit. Three group interviews, along with field notes, were audiotaped, transcribed, and analyzed. For most, dignity meant respect received by others and respect for oneself; some did not understand the word dignity. Receiving respectful care enhanced a sense of dignity for some, and for others, difficulties with caregivers led to feeling unrecognized or disrespected. Everyday experiences of living on the unit included narratives about how they got there, taking antiretrovirals, escaping, the unit as a community of caring, witnessing deaths, relationships with nurses, the unit as a place of safety, and knowing when to leave. This study contributes to knowledge of marginalized minority groups with advanced HIV disease whose experiences often remain silenced.

‘Chaos, restitution and quest’: one woman’s journey through menopause

Menopause, a natural stage in a womans reproductive life, is not an illness; yet some women experience severe enough symptoms to cause a breakdown in the body similar to illness or other major health disruptions. As part of a larger narrative analysis investigation of distress during menopause, this case study presents one womans transformational journey through menopause, analysed through Franks health and illness narratives - chaos, restitution and quest. The narratives were retranscribed using Labovs elements of a true story and Gees poetic restructuring. This report of one womans experience of distress during the menopause transition describes a poetic chaos narrative of incessant night sweats resulting in a loss of physicality and a deep-rooted belief in self-healing; a restitution narrative of restored health that mandated the surrender to a new healing discourse, experienced simultaneously as a victory and a defeat; and a quest narrative of seeking meaning, insight and new-found values and identities.