Journal of Patient Experience最新文献

The patients' journey is a complex network involving multiple layers of impactful stakeholders, among these stakeholders are nurses. Nurses' impact is critical to achieving better health outcomes and an uplifted experience, yet there are gaps in supporting nurses and empowering them to maximize their contribution to patients. Empowering nurses can take place in the form of educational support, recognition, and reducing their workload to limit their burn-out. The impact of such support to nurses would result in improved health outcomes, reduced mortality rates and an increase in patient satisfaction.

User-centered models for the development of digital health interventions are not consistently applied in healthcare settings. This study used a five-phase, user-centered approach to develop HEARTPrep^©, a psychosocial intervention delivered via mobile app and telehealth to mothers expecting a baby with congenital heart disease (CHD) to promote maternal, family, and child well-being. Phases of intervention development were: (I) establishing partnerships; (II) creating content; (III) developing prototype and testable intervention; (IV) conducting think-aloud testing; and (V) completing beta testing. Partnerships with parents, clinicians, and design/technology experts were integral throughout the development of HEARTPrep^©. Parents of children with CHD also served as participants in Phases II-V, contributing to the creation of content and providing feedback to inform the iterative refinement of HEARTPrep^©. These five phases produced a refined digital health intervention with promising feasibility, usability, and acceptability results. This user-centered approach can be used to develop digital health interventions targeting various health outcomes.

The purpose of this mixed methods, cross-sectional patient survey was to characterize patient experience, to explore the frequency of and reasons for infertility treatment discontinuation and return to infertility treatments. Participants were recruited from United States patient support groups. Participants had received or were receiving ovulation induction (OI) with or without intrauterine insemination (IUI), with or without subsequent in vitro fertilization (IVF), or IVF with no other previous infertility treatment. Live birth was achieved by 62% of participants. Compared with participants treated with OI/IUI only, participants who underwent OI/IUI followed by ≥1 IVF cycle were less likely to consider discontinuing care (64% vs 77%; P = .014) or to discontinue treatment without achieving a pregnancy (40% vs 58%; P = .004). The most commonly cited reasons for treatment discontinuation were financial (62%) and psychological burden/treatment fatigue (58%). Expected versus actual time to pregnancy differed greatly. Continued desire for a child (60%) was the most frequently cited reason for continuing or resuming treatment. Expanded access to treatment, counseling and fostering realistic expectations regarding cumulative time to pregnancy may reduce treatment discontinuation.

Patient choice in healthcare follows a process in which references to evidence and experience are intertwined. From the perspective of a patient with chronic kidney disease, I propose experiential fallibilism as the use of uncertain evidence and experience, along with knowledge gained in new contexts, situations, and experiences, to attain truth and promote shared decision-making. Thus, because of their uncertain nature, both the patient's experience and the doctor's focus on evidence should be integrated into a decision-making process through a co-learning perspective so that they can mutually enrich each other and prevent inappropriate actions and decisions in other clinical contexts. The risks perceived by both the patient and the doctor should be valued equally to encourage an honest discussion of the benefits and drawbacks of the proposed treatments after considering the patient's social, economic, and medical situation. Further, experience measurement tools, both quantitative and qualitative, should be used or developed to test their transferability and effectiveness in contexts involving healthcare decisions between doctors and patients.

Health care providers need to support families and provide resources when facing their child's death and potential organ donation. Aims of this retrospective chart review in a tertiary health care system were: (1) describe characteristics of pediatric organ donors compared to those who were not; (2) determine differences between services utilized by families who selected organ donation versus those who did not. From 2017 to 2023 of 288 pediatric deaths, 76 were organ donors and 212 did not donate. Organ donors' mean age at admission was 6.3 ± 5.8 years. Thirty-four (44.7%) participated in Honor Walks. Significant differences existed between organ donors and non-organ donors in patients who were diagnosed with SIDS (3.9% vs 13.2%; P = .025). This study provides additional data to help further our understanding of bereavement support services for families making difficult decisions regarding organ donation.

Patient experience is globally recognized as an important indicator of health system performance, linked to health system quality and improving patient outcomes. Post COVID-19, health systems have embraced digital health and advanced digital transformation efforts; however, the relationship between digital health and patient experience outcomes is not well-documented. Using HCAHPS hospital survey data to measure patient experience, and HIMSS EMRAM Maturity Model data to measure digital maturity, a cross-sectional design using multivariate analyses examined the impact of digital maturity on patient experience in US hospitals. Our analysis shows that advanced digital maturity in US hospitals is associated with stronger patient experience outcomes, particularly relative to communication with nurses, doctors, and communication about medicines and therapies. The findings suggest that there are significant differences in patient experience associated with teaching versus nonteaching hospitals, urban versus rural hospitals. As hospitals advance and progress digital transformation initiatives, evidence to inform how transformation efforts can engage and advance patient experience will contribute to health system performance well into the future.

Long coronavirus disease 2019 (COVID-19) is poorly understood, widespread and debilitating. Integrative medical group visits (IMGVs) provide group medical care virtually or in person and are reimbursed by insurance payors. IMGV introduces integrative modalities such as mindfulness, nutrition, and acupressure in a person-centered, supportive, and educational environment. To evaluate a telehealth IMGV program called Nourish to Flourish (N2F) for patients with long COVID, three researchers conducted a qualitative analysis of pre- and post-group individual interviews. Twenty-five patients provided interviews, of which fifteen included pre- and post-group individual interviews. Main themes were unpredictable symptom patterns, a common range of emotions associated with long COVID experience, reconceptualizing self-identity, multiple barriers to care in conventional settings, and connections formed in N2F. Although symptoms varied, N2F participants found commonalities in their experiences of living with long COVID. They empathized with one another regarding changing symptoms, inconsistent social support, shifting identities, and barriers to effective medical care.

Recognizing the paucity of literature describing the non-medical effects of care at a tertiary parental fetal care center upon families, the purpose of the study was to better examine the potential barriers that our patients face related to care in a parental fetal care center. An anonymous survey was sent via email to patients who received care from 2015 to 2021. The survey included questions regarding demographics, fetal diagnoses, non-medical expenses related to care, and the impact of care on patient relationships, employment, and other children. 453 patients (15.9%) responded out of the 2684 emails sent. 58.3% of patients traveled >100 miles to reach our referral center, with 20% traveling >300 miles. 42.6% of patients reported non-medical expenditures exceeding $1000, with nearly 1 in 10 reporting expenditures of >$5000 (8.6%). Overall, 38.2% of women reported moderate to severe financial burdens related to receiving care at the parental fetal care center. This study illuminates the financial and social burdens that care at a tertiary parental fetal care center imposes upon families. By acknowledging these barriers, we can strive to minimize them to best provide equitable access to high-quality fetal care services.

This study aimed to synthesize all qualitative evidence on the experiences of hematopoietic stem cell transplant (HSCT) patients attending long-term monitoring clinics from their perspective. A systematic search of the literature was undertaken across 8 databases. The Critical Appraisal Skills Program was used to evaluate each study's quality. Confidence in the Evidence from Reviews of Qualitative Research was employed to assess confidence in each finding. Three themes from 4 qualitative studies were identified relating to patients' experiences, "[It's] important to maintain a good relationship with the nurses and doctors," "There's always the thing about the logistics," and "Once you have cancer, you're always thinking do I have it again?". The findings suggest that HSCT patients' experiences of long-term follow-up care clinics are influenced by the patient-provider relationship and the logistical set-up of monitoring practices, and weakly connected with fear of cancer recurrence. Future research is needed to understand the impact of each finding of this review, specifically in relation to patients' country of residence to gain a greater understanding of their monitoring support needs.