Peggy Ward-Smith

Quality of Life among Childhood Leukemia Patients

The purpose of this qualitative descriptive study was to allow childhood leukemia patients to describe their quality of life (QoL) in their own words. These personal accounts provide an opportunity for health care personnel to understand the impact that leukemia has on these children. A total of 13 children in three focus group interviews participated. They ranged in age from 5 to 9 years and were either off therapy or had completed at least 6 months of treatment. Four semistructured interview questions were used to guide the interviews. Each question related to a domain identified in previous research as having an effect on QoL. Thus, the areas explored in this study were (a) physical well-being and symptoms, (b) psychological well-being, (c) social well-being, and (d) spiritual well-being. Five themes were identified: (a) fatigue, (b) the effect on activities, (c) medication and treatment effects, (d) relationship changes, and (e) hair loss.

When a family member has a malignant brain tumor: the caregiver perspective.

&NA; The incidence of primary malignant brain tumors has remained stable over the past 10 years, with median survival reported as 12 months. Once the patient has been diagnosed, providing care for him or her is primarily performed by family members. Although previous research has documented the stress, depression, anxiety, and burden associated with caregiving, when these conditions occur is not known. The purpose of this study was to explore the caregiver perspective of providing care while the patient was receiving chemotherapy as initial treatment for the disease. Using phenomenological techniques, data were obtained from semistructured interviews with family caregivers and self‐disclosed demographic data. Each interview occurred while the patient was receiving treatment; all patients were within 6 months of initial diagnosis. Interview data were analyzed using Colaizzis method, which allowed themes universal to the participants to be uncovered. Interview data from 10 participants provided saturation and identified three themes: (a) the diagnosis of a brain tumor is a shock; (b) immediate family role changes occur; and (c) there are psychosocial effects for the caregiver, his or her family, and the person with the brain tumor.

The Lived Experience of Adult Survivors of Childhood Cancer

Little is known about the long-term impact of surviving childhood cancer. Most children diagnosed with cancer now survive into adulthood due to advances in medical treatment. Although the number of survivors of childhood cancer has increased, a review of the literature revealed a paucity of studies that explores survivorship of childhood cancer from the perspective of the adult survivor. The purpose of this phenomenological study was to examine the lived experience of 12 adults who survived childhood cancer. This research methodology allows the meaning or essences of experiences that occurred to be uncovered. Four themes emerged from these data: (1) ongoing consequences for having had cancer, (2) living with uncertainty, (3) the cancer experience is embodied into ones present sense of self, and (4) support is valued. The results of this study demonstrate that a childhood cancer experience affects the life of each survivor, which results in specific health care needs. This knowledge is important as the number of survivors increases. Knowledge of their concerns is imperative prior to providing appropriate health care.

On Receiving the Diagnosis of Cancer: The Adolescent Perspective

The adolescent life stage encompasses unique developmental challenges. Little is known about the experience of receiving a cancer diagnosis during this already demanding life stage. The aim of this study is to explore the lived experience of being diagnosed with cancer from the perspective of the adolescent. A phenomenological approach is used to perform semistructured interviews with 10 adolescents who have been diagnosed with cancer within the previous 4 to 6 months. Colaizzis method of analysis is used to allow themes to emerge from these data. Six themes capture the essence of being diagnosed with cancer from the perspective of the adolescent: (1) the stunning loss of normalcy, (2) gaining information, (3) the importance of friends and their reactions, (4) getting used to it, (5) giving back, and (6) family support. The results of this study provide an emerging understanding of the unique perspective of the adolescent with cancer. Understanding this perspective is critical to meet the needs of this population.

Quality of Life Among Adolescents With Cancer

The purpose of this study is to enable adolescents with cancer to self-evaluate their quality of life (QoL). Data were collected using a newly developed Likertscaled QoL instrument. In addition, each participant could comment on how the variable impacted his or her QoL. Demographic data were self-disclosed to describe the sample population of 75 adolescents (41 males and 34 females). Overall QoL scores ranged from 27 to 48 (mean = 41.27, SD = 4.31) of a possible 48. Quality of life scores were lowest among those who were female and presently receiving therapy. Overall reliability for the instrument is acceptable ( r = .77). These data reveal that adolescents are aware that their QoL is affected by cancer and its treatment. This instrument demonstrates scores that are statistically different (P = .000) between those presently receiving treatment compared with those not receiving treatment. Although not statistically significant, mean scores for females were lower than for males (P = .030), regardless of other variables. Further administration and psychometric testing of the instrument is planned.

The Adolescent Perspective on Participation in Treatment Decision Making: A Pilot Study

Few research studies have obtained data directly from the adolescent with cancer regarding decision making. The developmental stage of these patients focuses on developing independence, yet the health care decisions required for cancer treatment preclude independent decision making. The purpose of this pilot, or exploratory, study was to determine whether the research question is appropriate and whether participants between 13 and 15 years of age were capable of providing rigorous data. The results suggest that treatment decision making was not a concern for these patients and that they were capable and appropriate study participants. Semistructured interviews were performed with 3 adolescents diagnosed with cancer within the previous 3 to 6 months. These data were qualitatively analyzed using Colaizzis technique, which identified themes perceived as critical by these participants. Independent behavior, such as decision making, is not relevant at this health care juncture. However, support, information, and education are desired. These should be routinely available using means appropriate for adolescents. Infusing information and education into the health care plan from time of diagnosis may allow the adolescent to become knowledgeable about the disease process. This may enable him or her to participate in health care treatment decisions, when appropriate.

Know staff's "intent to stay"

Traditional measures of nursing workloadare inadequate. Opportunities exist to furthersubstantiate issues surrounding workload per-ception and employment satisfaction, such asmanager or peer support. Measuring theseelements may help to efficiently identify fac-tors triggering negative nursing perceptionsrelated to workload.Study participantsData were collected from a 241-bed pediatricfacility that serves as a regional referral center.Participants were a convenience sample ofpediatric registered nurses. Data were collect-ed from 879 participants over 2001 to 2002 onall shifts, including weekends. A trained clini-cal research coordinator (CRC) monitored alldata collection.Participants received a packet that includedthe Individual Workload Perception Scale(IWPS), a demographic sheet, and the enroll-ment script in lieu of a consent form asinstructed by the governing InstitutionalReview Board. To avoid the introduction ofbias, the CRC was allowed to only rereaditems, not interpret them. Participant timeburden was approximately 15 minutes.The original IWPS was a 46-item instru-ment, measured using a 5-point Likert scale (1 = strongly disagree to 5 = strongly agree).Prior to factor analysis, content validity wasdetermined by three nurse executives and twoexperts in the field of measurement psycho-metric analysis.Manager support questions considerednurses’ perceptions of the extent to whichsupervisors or managers provide support andserve as a resource to the workgroup. Thissupport can take many forms, and a nursemanager who is clinically competent andavailable may rarely need to provide directnursing care as long as nurses believe thissupport exists. A nurse manager who is empa-thetic toward others about workload issuesand appears to work hard at filling open posi-tions will also positively influence workloadperception.Peer support evaluated the extent to whichthere’s cohesion and teamwork within theworkgroup. There are a number of factors inthe current nursing work environment whichmay influence this perception. First, turnovernationally is greater than 20% in many hospi-tals.

The Effect of Multisensory Stimulation on Persons Residing in an Extended Care Facility

Background: Non-pharmacological interventions, such as multisensory stimulation environments (MSSE), have demonstrated the ability to reduce inappropriate behavior among individuals with Alzheimer’s disease. Methods: In this study, we compared the incidences of problematic behavior among individuals with Alzheimer’s disease residing in a long-term care facility who were and were not exposed to an MSSE. Retrospective data were obtained using the Psychotic Behavior Assessment Record (PBAR), mandated by Medicare to be used when antipsychotic medications are administered. Psychotic Behavior Assessment Record data were collected using the first and sixth month of admission for residents after appropriate consent was secured. Results: Documented disruptive behavior included pacing, exit-seeking activities, hitting, yelling, and aggressive talking. The use of the MSSE resulted in a decrease in the number of incidences of disruptive behavior, but not the behaviors present. Conclusion: The use of MSSE, as a non-pharmacological intervention, demonstrates the ability to decrease the number of incidences of disruptive or problematic behavior. The use of these interventions, where feasible, should be considered prior to the use of pharmacological methods.

Implementation of a palliative care team in a pediatric hospital.

Recommendations for best practice from the American Academy of Pediatrics include the availability of palliative care for children with life-threatening or life-limiting health care conditions. The uniqueness of the both the pediatric population and a pediatric health care setting requires changing the culture that previously has provided only curative or hospice care to these individuals. Methods to provide palliative care alongside of treatment and coordination of these efforts must be multidisciplinary and include family members.

Having a child diagnosed with cancer: an assessment of values from the mother's viewpoint.

The purpose of this qualitative study was to explore the mothers experience of having a child diagnosed with cancer. Semistructured interview questions, focused specifically on values, provided the foundation for the study. Each of the 9 participants was a mother of a child diagnosed with cancer 30 days prior to participation. Subsequent data were collected from each participant 6 months after the original interview. Using a phenomenological approach for data collection and analyses, themes were uncovered from each interview data set. The initial interviews identified 3 themes: (1) problems accessing the health care system, (2) challenges of family dynamics, and (3) support structures. Each theme persisted in the second interview, with an additional theme, (4) future plans, uncovered. Data from this study may provide guidance for health care professionals who provide care to these children and their families. The importance of maintaining communication and keeping promises cannot be overstated.