Amy J. Walker

Differences in Symptom Occurrence, Frequency, Intensity, and Distress in Adolescents Prior to and One Week After the Administration of Chemotherapy

Purpose/objectives: The purpose of this study was to describe differences in occurrence, frequency, intensity, and distress of symptoms prior to (T1) and one week following (T2) the administration of intravenous chemotherapy. Design: Longitudinal, descriptive. Settings: Two regional children’s cancer centers in the Pacific Northwest. Sample: A total of 51 adolescents 10 to 19 years old receiving cancer chemotherapy. Methods: Memorial Symptom Assessment Scale (MSAS 7-12). Findings: No significant differences were found in symptom occurrence rates between T1 and T2. Fatigue was the only symptom with significantly greater frequency and intensity, and nausea was the only symptom with significantly greater distress at T2 compared with T1. Conclusions: Adolescents receiving chemotherapy experience multiple symptoms that persist over time. Implications for nursing: In monitoring for symptoms, nurses need to be aware of the extent to which symptoms are present throughout treatment, as evidenced by these findings that symptom occurrence was significant even prior to receiving a subsequent course of chemotherapy.

Longitudinal course and impact of insomnia symptoms in adolescents with and without chronic pain.

UNLABELLED This study aimed to 1) examine trajectories of insomnia symptoms in adolescents with chronic pain compared to their healthy peers; 2) evaluate psychological and behavioral risk factors for longitudinal insomnia symptoms; and 3) evaluate insomnia as a predictor of quality of life, activity limitations, and healthcare utilization over 12 months. Participants included 61 adolescents with chronic pain and 60 youths without chronic pain (12-18 years; 72% female). Questionnaires were completed at enrollment, 6 months, and 12 months and assessed pain intensity, insomnia symptoms, sleep hygiene, presleep arousal, depression, pubertal status, activity limitations, quality of life, and healthcare utilization. Insomnia symptoms persisted for both groups and remained higher at all time points for youths with chronic pain. Generalized estimating equations modeling identified 3 risk factors for longitudinal insomnia symptoms: having chronic pain, poorer sleep hygiene, and higher depressive symptoms. Insomnia symptoms also predicted poorer quality of life over time and were associated with more frequent healthcare utilization. Findings suggest that sleep problems are persistent and associated with negative impact for youths with chronic pain. Treatment of insomnia symptoms in youths with chronic pain may lead to improvements in quality of life and reductions in healthcare costs. PERSPECTIVE Insomnia symptoms are persistent over a 12-month period and are associated with negative impact for youths with chronic pain. These findings suggest that treatment of insomnia symptoms in youths with chronic pain may lead to improvements in quality of life and reductions in healthcare costs.

A review of pain measures for hospitalized children with cognitive impairment

PURPOSE The aims of this review were to examine pain measures for hospitalized children with cognitive impairment who are unable to self-report and to describe the best available evidence for their clinical utility in acute care settings. DESIGN AND METHODS Electronic searches to identify published evidence were conducted and studies reviewed. Reported psychometrics and feasibility of the Non-Communicating Childs Pain Checklist-Postoperative Version, Individualized Numeric Rating scale, Pediatric Pain Profile, and revised Face, Leg, Activity, Cry, and Consolability scale were examined. CONCLUSIONS These four measures have established validity and reliability. However, clinical utility findings varied. PRACTICE IMPLICATIONS The revised Face, Leg, Activity, Cry, and Consolability scale has demonstrated feasibility in acute care settings related to ease of use, time requirements, and flexibility regarding caregiver input.

Behavioral and Educational Interventions to Support Family Caregivers in End-of-Life Care A Systematic Review

The demand for family caregivers steadily increases as the number of people receiving hospice and palliative care rises. Family caregivers play a significant role in supporting their loved ones in end-of-life care. However, there is limited evidence about the effectiveness of the interventions for supporting family caregivers. This article synthesizes behavioral and educational interventions that support family caregivers in end-of-life care. A systematic review was conducted and searched interventional studies published between 2004 and 2014 in PubMed, CINAHL, Embase, and The Cochrane Library electronic databases. Fourteen studies were identified and analyzed: 4 educational studies, 6 cognitive behavioral therapy studies, and 4 psychoeducational studies. All educational and behavioral interventions had developed structures and treatment manuals and improved family caregivers’ outcomes. The cognitive behavioral therapy resulted in more positive outcomes than the other 2 interventions. More rigorous randomized controlled trials are needed to replicate current effective interventions with larger and diverse sample. Future studies need to develop tools for assessing family caregivers’ needs, create consistent and specific tools to effectively measure family caregivers’ outcomes, incorporate a cost-effectiveness analysis, and find the most efficient intervention format and method.

Using conceptual work products of health care to design health IT

This paper introduces a new, model-based design method for interactive health information technology (IT) systems. This method extends workflow models with models of conceptual work products. When the health care work being modeled is substantially cognitive, tacit, and complex in nature, graphical workflow models can become too complex to be useful to designers. Conceptual models complement and simplify workflows by providing an explicit specification for the information product they must produce. We illustrate how conceptual work products can be modeled using standard software modeling language, which allows them to provide fundamental requirements for what the workflow must accomplish and the information that a new system should provide. Developers can use these specifications to envision how health IT could enable an effective cognitive strategy as a workflow with precise information requirements. We illustrate the new method with a study conducted in an outpatient multiple sclerosis (MS) clinic. This study shows specifically how the different phases of the method can be carried out, how the method allows for iteration across phases, and how the method generated a health IT design for case management of MS that is efficient and easy to use.

Nocturnal Sleep–Wake Parameters of Adolescents at Home Following Cancer Chemotherapy

Purpose: The purpose of this descriptive, longitudinal study was to describe objective nocturnal sleep–wake parameters of adolescents at home after receiving chemotherapy in the hospital or outpatient clinic and explore differences in sleep variables by age, gender, and corticosteroid use. Methods: We collected 7 days of wrist actigraphy and sleep diary data from 48 adolescents (10–19 years) who were receiving cancer chemotherapy for a primary or secondary cancer or a relapse. The actigraphic sleep variables included rest interval (i.e., time in bed), sleep onset, sleep offset, sleep duration, total sleep time (TST), wake after sleep onset (WASO), and %WASO. Results: Of the 48 adolescents, 38 had at least five nights of scored actigraphy and were included in analyses. Older (13–18 years) adolescents went to bed later and had fewer minutes of TST than younger adolescents (10–12 years). Exploratory analyses revealed no differences between adolescents who were taking oral corticosteroids (i.e., prednisone, dexamethasone) and those who were not or between males and females. Conclusion: These adolescents had sleep durations that met or exceeded the recommended sleep duration for their age groups but experienced significant WASO. Further research is needed to estimate sleep needs of adolescents during chemotherapy and determine factors that contribute to nocturnal wake-time so that targeted interventions can be designed to improve sleep quality.

Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis

Purpose The purpose of this study is to describe parents’ experiences in caring for 2–5‐year‐old children with juvenile idiopathic arthritis (JIA). Design and methods A qualitative study using single‐occasion in‐depth interviews was conducted. Nine parents (eight mothers and one father) were interviewed in‐person or via telephone. Data were analyzed using inductive content analysis. Methods used to protect the trustworthiness of study results included maintenance of an audit trail, peer debriefing, and member checks. Results The core construct Struggling in the Dark to Help My Child explained parents’ experience in six domains: not knowing, trying to reach out in the dark, feeling my childs pain, working out the kinks to stay on top to manage, feeling drained by the whole process, and being hard on the entire household. Parents struggled with the unknown, searched for resources, witnessed their childs suffering without knowing how to help, and tried every possible way to stay on top of the childs illness and treatment, even when they felt drained physically and emotionally. JIA not only consumed their lives, but also affected the entire family, including the siblings and spouse, and the relationships among family members. Conclusion and implications Findings highlight the day‐to‐day lived challenges parents face when caring for a young child with JIA. Healthcare providers including nurses need to assess the particular needs of an ill child and parents as well as the impact of the illness on the physical and psychosocial health of the entire family so that proper resources can be provided. HighlightsThe core construct Struggling in the Dark to Help My Child explained parents’ experience in caring for a young child with JIA.Parents struggled with the care and tried every possible way to stay on top of the child’s illness and treatment.The prolonged struggle substantially impacted the emotional and physical health of the parents and the entire household.

Adolescent and young adult cancer survivorship: A systematic review of end-of-treatment and early post-treatment

Background: A framework for adolescent and young adult (AYA) survivors that addresses developmental milestones, short and long-term impacts of cancer on relationships is needed to understand the long-term consequences of cancer treatment and why AYAs do not participate in long-term follow-up care. Objectives: Develop a theoretical framework of end-of-treatment and early post-treatment based on a systematic review of the literature and suggest future directions for research that derive from the review. Methods: A systematic review of published research from 1994 to 2014 was conducted using three databases: PubMed, CINAHL, Psych Info using search terms survivors AND end of treatment OR transition* AND cancer. Results: The framework is organized along a time trajectory that includes treatment and post-treatment separated by the critical transition of end-of-treatment. The framework explores links between AYA development; changes in survivor’s relationships with parents, peers, siblings, health care providers; and evidence of issues at end-of-treatment for survivors and parents. Conclusion: Results from the systematic review suggest that end-of-treatment and early post-treatment are particularly challenging for survivors and parents. Five areas of future research are identified: provider behaviors that contribute to AYA’s feelings of abandonment; end-of-treatment and follow-up visits; survivor and parent expectations at end-of-treatment and actual challenges in post-treatment; convergence or discordance between the AYA’s and parent’s concerns and how parents’ concerns may conflict and thwart survivors’ efforts to achieve developmental milestones; and peers’ perceptions and concerns.

Development and Preliminary Evaluation of a Pain Management Manual for Hospice Providers to Support and Educate Family Caregivers

Background: Family caregivers encounter many barriers to managing patients’ pain in the home hospice setting. However, there are limited clinically applicable resources for hospice providers to help family caregivers identify and address these barriers. Aim: To develop a pain management manual for hospice providers to support family caregivers and conduct a preliminary providers’ evaluation of the manual. Design and Participants: A pain management manual was developed and structured into 3 parts: (1) 5 common pain management case scenarios based on a secondary data analysis of a hospice clinical trial; (2) a list of suggested assessment questions and strategies for each case scenario was developed based on a caregiver framework; and (3) pain educational material was included from established clinical guidelines. The manual was vetted by 5 experts and then was evaluated by interviewing 25 hospice providers. Interview data were analyzed using thematic analysis. Results: The hospice providers found that the manual could potentially serve as a reference in their practice and be a source for their continuing education. They suggested enhancing the clarity of the case scenarios and adding additional strategies to the manual. Moreover, they suggested expanding the paper-based version and developing a web-based platform to deliver the content would maximize its utility. Conclusions: The manual has the potential to be integrated into routine hospice care to improve the quality of pain management.

The Enhancing Connections-Telephone study: a pilot feasibility test of a cancer parenting program

PurposeThe purposes of the study were to (1) test the short-term impact of a telephone-delivered cancer parenting education program, the Enhancing Connections-Telephone (EC-T) Program, on maternal anxiety, depressed mood, parenting competencies, and child behavioral-emotional adjustment and (2) compare those outcomes with outcomes achieved from an in-person delivery of the same program (EC).MethodsThirty-two mothers comprised the sample for the within-group design and 77 mothers for the between-group design. Mothers were eligible if they had one or more dependent children and were recently diagnosed with stages 0–III breast cancer. Mothers in both groups received five intervention sessions at 2-week intervals from a patient educator using a fully scripted intervention manual.ResultsOutcomes from the within-group analysis revealed significant improvements on maternal anxiety, parenting competencies, and the child’s behavioral-emotional functioning. Outcomes from the between-group analysis showed the EC-T did as well or better than EC in positively affecting maternal anxiety, depressed mood, parenting competencies, and the child’s behavioral-emotional adjustment. Furthermore, the EC-T had a significantly greater impact than the EC on maternal confidence in helping their family and themselves manage the cancer’s impact and in staying calm during emotionally charged conversations about the breast cancer with their child.ConclusionsRegardless of the channel of delivery, the Enhancing Connections Program has the potential to positively affect parenting competencies and behavioral-emotional adjustment in mothers and dependent children in the first year of stages 0–III maternal breast cancer. Its positive impact from telephone delivery holds promise for sustainability.