Personal Agency and Community Resilience: Narratives of Women Navigating Health Care With Chronic Lyme Disease.

Chronic Lyme disease can manifest as a debilitating illness with symptoms that change over time. With its varied presentation, timeline variation, diagnostic difficulty, and lack of definitive treatment, clinical recognition of chronic Lyme disease remains controversial. At the same time, patients face challenges in finding a provider who is supportive and knowledgeable about diagnosing and treating Lyme. We examined the ways the medical system may have affected the lived experiences of chronic Lyme patients. In this article, we communicate the personal, health care, and community illness experiences of 14 women navigating the medical system with chronic Lyme disease through a qualitative community-based participatory research study using interviews and narrative reflection in a rural community setting. The women were interviewed by a researcher living with chronic Lyme disease and the transcripts were analyzed for themes. All participants described navigating multiple allopathic and nonallopathic care modalities to find satisfactory care. They struggled with physical and emotional burdens of chronic, nonlinear illness, as well as disbelief and discrimination by medical providers. Their lives followed patterns of illness and wellness, trust and mistrust of medical treatment, and community connection and disengagement. They learned to become their own advocates to seek affirmative care. They are aware of the controversial nature of their illness, and many have channeled their frustrations into caring for one another through their Lyme community. Women living with controversial diagnoses like chronic Lyme disease experience increased challenges navigating the medical system to find satisfactory care and thus create communities with each other for mutual aid and support. In understanding these challenges, the medical community can improve care for people living with contested chronic illnesses.

The efficacy of facilitated tucking for relieving procedural pain of endotracheal suctioning in very low birthweight infants.

PURPOSE: This study compared the efficacy of a behavioral pain reducing intervention (facilitated tucking) with standard neonatal intensive care unit (NICU) care for decreasing procedural pain (endotracheal suctioning) in very low birthweight (VLBW) infants. STUDY DESIGN AND METHODS: A prospective randomized crossover design with infants as their own controls were used. The sample consisted of 40 VLBW infants, 23-32 weeks gestation, and weighing 560-1498 g with tracheal intubation. The infants were observed twice during each endotracheal suctioning experience; one suctioning was done according to normal nursery routine; another was done using facilitated tucking (the caregiver "hand-swaddling" the infant by placing a hand on the infant's head and feet while providing flexion and containment). The Premature Infant Pain Profile (PIPP) measured the infant's pain response, and severity of illness of each infant was measured by the Score for Neonatal Acute Physiology (SNAP) and the NTISS (Neonatal Therapeutic Intervention Scoring System). Repeated measures analysis of variance (RMANOVA) determined the efficacy of facilitated tucking for reducing procedural pain (PIPP) and the effects of order of intervention vs. control. Regression analyses examined the relationship of gestational age, severity of illness, and number of painful procedures to the pain response. RESULTS: There was a significant difference between the PIPP scores for tucking and nontucking positions (p = 0.001) and a nonsignificant interaction with order (p = 0.64) as well as a nonsignificant main effect for order (p = 0.46). In the regression analyses, all predictors taken together did not significantly predict PIPP scores in the tucked position (p = 0.11) or nontucked position (p = 0.57). CLINICAL IMPLICATIONS: Facilitated tucking is a developmentally sensitive, nonpharmacological comfort measure that can relieve procedural pain in VLBW infants. Nurses need to be increasingly aware of infant pain during daily care taking, and to use validated pain assessment instruments. Further clinical research on individual pain assessment is needed for better understanding of the quality and significance of pain for each infant, and the factors that affect pain expression.