Mothers' experience of caring for a child with early onset scoliosis: A qualitative descriptive study.

AIMS AND OBJECTIVES: This study aimed to identify and describe the experience of parents of children diagnosed with early onset scoliosis living in Australia. BACKGROUND: Chronic childhood disease has a major impact on health-related quality of life. Caring for a child with a chronic illness is well documented but the specific experiences of parents who care for children with early onset scoliosis, a rare but devastating illness, has not been explored. Numerous studies have described the interrelated psychological, financial, social, physical and logistical factors that impact the experience of the caregiver role with various diseases, but in the case of early onset scoliosis, limited studies have been conducted about the parental experience. METHODS: A qualitative descriptive design was used. A snowball sampling technique assisted in the recruitment. Parents invited to the study included mothers, fathers and guardians. Data were collected through semistructured interviews and transcribed verbatim. Transcripts were analysed thematically. Data collection complied with the Consolidated criteria for reporting qualitative research guidelines. FINDINGS: Twelve mothers of children with early onset scoliosis were interviewed, as only mothers consented to participate. Four major themes emerged: emotional rollercoaster ride, a lack of resources, money talks and pervasive burden. Factors that impacted on the participants' ability to confront, manage and endure caring for a child with early onset scoliosis emerged from the data. CONCLUSION: The findings suggest there are multiple factors that influence the experience of mothers' caring for a child with early onset scoliosis. The recognition and appropriate management of these factors by healthcare professionals have the potential to improve the quality of life of parents who care for a child with early onset scoliosis. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals have first-line contact with parents of children with early onset scoliosis and are well placed to provide parents with evidence-based education and increased support.

Survival in hospice patients with dementia: the effect of home hospice and nurse visits.

BACKGROUND: Hospice patients with dementia are at increased risk for live discharge and long lengths of stay (>180 days), causing patient and family caregiver stress and burden. The location and timing of clinician visits are important factors influencing whether someone dies as expected, in hospice, or experiences a live discharge or long length of stay. OBJECTIVE: Examine how home hospice and nurse visit frequency relate to dying in hospice within the Medicare-intended 6-month period. DESIGN: Retrospective cohort study. SETTING: Non-profit hospice agency. PARTICIPANTS: Three thousand eight hundred and thirty seven patients with dementia who received hospice services from 2013 to 2017. METHODS: Multivariable survival analyses examined the effects of receiving home hospice (vs. nursing home) and timing of nurse visits on death within 6 months of hospice enrollment, compared to live discharge or long length of stay. Models adjust for relevant demographic and clinical factors. RESULTS: Thirty-nine percent (39%) of patients experienced live discharge or long length of stay. Home hospice patients were more likely to experience live discharge or long length of stays (HR for death: 0.77, 95%CI: 0.69-0.86, p < 0.001). Frequency of nurse visits was inversely associated with live discharge and long lengths of stay (HR for death: 2.87, 95%CI: 2.47-3.33, p < 0.001). CONCLUSION: Nearly 40% of patients with dementia in our study experienced live discharge or a long length of stay. Additional research is needed to understand why home hospice may result in live discharge or a long length of stay for patients with dementia. Nurse visits were associated with death, suggesting their responsiveness to deteriorating patient health. Hospice guidelines may need to permit longer stays so community-dwelling patients with dementia, a growing segment of hospice patients, can remain continuously enrolled in hospice and avoid burden and costs associated with live discharge.

Evidence-based practice improvement: merging 2 paradigms.

This article presents a new model, Evidence-Based Practice Improvement, for improving patient care. The model merges 2 extant paradigms currently used for quality improvement initiatives-evidence-based practice and practice or performance improvement. The literature expounds on the virtues of each of these approaches, yet no authors have moved beyond parallel play between them. The merged model, Evidence-Based Practice Improvement, may provide a more effective and practical approach to reach our quality goals.

Effectiveness of the Teach-Back Method for Improving Caregivers' Confidence in Caring for Hospice Patients and Decreasing Hospitalizations.

Health care professionals use teach-back to foster adherence to treatment recommendations and to improve safety and quality of care. This improvement project, conducted in one division of a home care agency, used a pretest-posttest design with an interprofessional group of hospice home care clinicians to incorporate teach-back into home visits to evaluate if the use of teach-back enhanced caregiver and patient-provider communication, improved caregivers' confidence in caring for hospice home care patients, and decreased hospitalizations. After the intervention, the teach-back group had zero hospitalizations compared with 2 for the non-teach-back group (0% and 1.97%, respectively), and patient-caregiver "confidence" increased from 58% to 81%, pre to post intervention. In conclusion, teach-back is a cost-effective teaching methodology that can be implemented by any discipline to improve patient-provider communication and patient outcomes.

The ReACH Collaborative--improving quality home care.

Research on quality of care has shown that vigorous leadership, clear goals, and compatible incentive systems are critical factors in influencing successful change (Institute of Medicine, 2001). Quality improvement is a complex process, and clinical quality improvement applications are more likely to be effective in organizations that are ready for change and have strong leaders, who are committed to creating and reinforcing a work environment that supports quality goals (Shortell, 1998). Key leadership roles include providing clear and sustained direction, articulating a coherent set of values and incentives to guide group and individual activities, aligning and integrating improvement efforts into organizational priorities, obtaining or freeing up resources to implement improvement activities, and creating a culture of "continuous improvement" that encourages and rewards the pursuit and achievement of shared quality aims (Institute of Medicine, 2001, 70-71). In summary, home health care is a significant and growing sector of the health care system that provides care to millions of vulnerable patients. There seems little doubt that home health agencies want to focus on quality of care issues and provide optimal care to home-based patients. Furthermore, there is a growing awareness of the value for adapting innovative, effective models for improving the culture of home care practice. This awareness stems from the notion that some agencies see quality improvement activities as a way for them to distinguish themselves not only to regulators and customers, but also to meet the cultural and transformational needs to remain viable in a constantly evolving and competitive health care industry.

Frequency and Risk Factors for Live Discharge from Hospice.

OBJECTIVES: To report frequencies and associated risk factors for 4 distinct causes of live discharge from hospice. DESIGN: Retrospective cohort study using electronic medical records of hospice patients who received care from a large urban not-for-profit hospice agency in New York City during a 3-year period between 2013 and 2015 (n = 9,190). RESULTS: Roughly one in five hospice patients were discharged alive (21%; n = 1911). Acute hospitalization was the most frequent reason for live discharge (42% of all live discharges; n = 802). Additional reasons included elective revocation to resume disease-directed treatments (18%; n = 343), disqualification (14%; n = 271), and service transfers or moves (26%; n = 495). Multinomial logistic regression analyses revealed that risk for acute hospitalization was higher among younger patients (age AOR = 0.98 [95% CI = 0.98-0.99] P < .01), racial/ethnic minorities (Hispanic AOR = 2.23 [CI = 1.82-2.73] P < .001; African American OR = 2.46 [CI = 2.00-3.03] P < .001; Asian/other OR = 1.63 [CI = 1.25-2.11] P < .001), and patients without advance directives (AOR = 1.41 [95% CI = 0.98-0.99] P < .001). Disqualification occurred much more frequently among patients with non-cancer diagnoses, including dementia (AOR = 13.14 [95% CI = 7.96-21.61] P < .001) and pulmonary disease (AOR = 11.68 [95% CI = 6.58-20.74] P < .001). Transfers and service moves were more common among Hispanics (AOR = 1.56 [95% CI = 1.45-2.34] P < .001), African Americans (AOR = 1.35 [95% CI = 1.03-1.79] P < .05), patients without a primary caregiver (AOR = 1.35 [95% CI = 1.09-1.67] P < .001), and those without advance directives (AOR = 1.30 [95% CI = 1.07-1.58] P < .01). CONCLUSION: Further research into factors that underlie live discharge events, especially acute hospitalization, is warranted given their cost and burden for patients/families. Hospices should develop strategies to address acute medical crises and thoroughly evaluate patients' suitability, unmet needs, and knowledge about end-of-life issues at the time of hospice enrollment, especially for those with non-cancer diagnoses.