Expectations Of Health Care Providers Research Articles

Understanding health education needs of pregnant women in China during public health emergencies: a qualitative study amidst the COVID-19 pandemic.

Public health emergencies impose unique challenges on pregnant women, affecting their physiological, psychological, and social wellbeing. This study, focusing on the context of the corona virus disease in 2019 (COVID-19) pandemic in China, aims to comprehensively explore the experiences of pregnant women amidst diverse public health crises. Herein, we investigate the health education needs of pregnant Chinese women in regard to public health emergencies to provide a scientific foundation for the development of targeted health education strategies. The study described in this article aims to explore the health education needs of pregnant Chinese women in the context of public health emergencies specifying the types of emergencies of pandemics and to provide a scientific basis for targeted health education interventions. Thirteen pregnant women were purposively selected, and the rationale for this sample size lies in the qualitative nature of the study, seeking in-depth insights rather than generalizability. Data collection involved semi-structured interviews, and the Colaizzi, which is a structured qualitative technique used to extract, interpret, and organize significant statements from participant descriptions into themes, providing a comprehensive understanding of their lived experiences. The analysis yielded six prominent themes encompassing the following areas: I. Personal protection and vaccine safety; II. Knowledge of maternal health; III. Knowledge of fetal health; IV. Knowledge of childbirth; V. Knowledge of postpartum recovery; and VI. Knowledge sources of health education for pregnant women and their expectations of healthcare providers. Theme I was analyzed with two sub-themes (needs for personal protection knowledge, vaccine safety knowledge needs); Theme II was analyzed with three sub-themes (nutrition and diet, exercise and rest, sexual life); Theme III was analyzed with three sub-themes (medications and hazardous substances, pregnancy check-ups, and fetal movement monitoring); Theme IV was analyzed with three sub-themes (family accompaniment, analgesia in childbirth, and choice of mode of delivery); Theme V was analyzed with one sub-theme (knowledge of postnatal recovery); Theme VI was analyzed with one sub-theme (expectations of Healthcare providers). Sub-themes within each main theme were identified, offering a nuanced understanding of the multifaceted challenges faced by pregnant women during public health emergencies. The interrelation between sub-themes and main themes contributes to a holistic portrayal of their experiences. The study emphasizes the need for healthcare professionals to tailor health education for pregnant women during emergencies, highlighting the role of the Internet in improving information dissemination. It recommends actionable strategies for effective health communication, ensuring these women receive comprehensive support through digital platforms for better health outcomes during public health crises.

A mixed-methods study on the implementation of a mobile health application (mHealth app) for stroke caregivers in Malaysia: healthcare providers' perspective.

Recognizing the burden experienced by caregivers of stroke survivors, an intervention using mobile health applications (mHealth apps) has been proposed to support and empower stroke caregivers. This study aimed to assess the acceptability and expectations of healthcare providers, who play a vital role as gatekeepers in the healthcare system, to ensure the effectiveness and sustainability of the intervention. This was a concurrent mixed-method study design, with healthcare providers involved in stroke care management in the northeast regions of Malaysia as study participants. The qualitative component of the study was conducted using a phenomenological approach that involved in-depth interviews to explore the acceptability and expectations of healthcare providers regarding the adoption of mHealth apps in the context of stroke caregiving. The study was complemented by quantitative data collected through an online survey using an adjusted version of the technology acceptance model tool. In total, 239 participants from diverse backgrounds and professions were enrolled in the study, with 12 in the qualitative component and 227 in the quantitative component. The findings from the quantitative survey showed that over 80% of the participants expressed their intention to use mHealth apps. The qualitative component generated two themes related to the acceptability and expectations of mHealth apps, which were integrated with the quantitative findings. Additionally, in-depth interviews revealed a new theme, namely the key features of mHealth, with three sub-themes: availability of services for caregivers, provision of knowledge skills, and supporting caregivers in managing stroke patients. Healthcare providers demonstrated excellent acceptability of this mHealth intervention as part of caregiving assistance, particularly with the inclusion of essential key features. However, future investigations are necessary to establish the feasibility of integrating the mHealth app into the healthcare system and to ensure its long-term sustainability.

Racial identity safety cues and healthcare provider expectations.

Racial identity safety cues and healthcare provider expectations.

Women's expectations of health care providers in the labor and delivery room in the Kurdistan Region of Iraq

Background and objective: The World Health Organization recognizes the importance of positive childbirth experience. In Iraq, patient satisfaction during maternity care visits is not routinely collected. This study was aimed to find out the women’s expectation during labor from physicians and midwives and associated factors such as socio-demographic and obstetrical characteristics. Methods: This cross-sectional study was conducted in Erbil city, located in the Kurdistan region of Iraq. A total of 1,500 women were targeted while they were accompanying another person, including children, to receive health services in Erbil and eventually 1,196 participated in the study. Data were collected through direct interviews after receiving informed oral consent. Participants were asked to describe their expectations for childbirth using an open-ended question. Responses were then grouped and categorized into 20 expectation items based on overlapping themes. Chi-square tests were used to identify associations with key socio-demographic and obstetric characteristics. Results: Level of expectation was significantly associated with education (illiterate and high education, P = 0.028),residency (suburban, P = 0.003), parity (grand multipara, P = 0.001), satisfaction with care (those satisfied, P <0.001), and satisfaction with provider communication (those satisfied, P <0.001). This study found that positive and calming verbal and non-verbal expressions, environmental control, encouragement of different positions and mobilization, hygiene, promotion of urinary elimination, and instruction on breathing and relaxation are highly expected by parturient women. Conclusion: Understanding women’s expectations in the delivery room is critical to health care providers in order to make appropriate care plan and support women to have a positive birth experience and to meet expectations.

Opinions of Health Care Providers About Neuromodulation for Pain: Results of an Online Survey at the 2nd Joint Congress of the International Neuromodulation Society European Chapters

IntroductionNeuromodulation for pain has been successfully applied for decades, in that the goals and expectations that patients aim to achieve are clearly described. Nevertheless, the point of view of health care providers is less clear. Therefore, this study aimed to explore the goals, expectations, and definition of success for neuromodulation for pain according to health care providers. Materials and MethodsAn online survey was developed and spread at the 2nd Joint Congress of the International Neuromodulation Society (INS) European Chapters in September 2021 in Paris. Respondents were asked 1) to select the goals to treat patients with neuromodulation for pain, 2) to indicate factors that they expect to change according to neuromodulation for pain, and 3) to provide their definition of success of neuromodulation for pain. ResultsWe approached 101 respondents, of whom 88 health care providers at least partly completed the survey. Increasing mobility/functionality (26.7%), decreasing pain intensity (24.5%), and decreasing medication use (16.6%) were the most frequently reported goals of neuromodulation. The same top three variables were selected as factors that health care providers expected to change. For the definition of success, quality of life of patients outranked other definitions. Other highly ranked definitions, in descending order, were obtaining pain relief, increasing functionality, and increasing patient satisfaction. DiscussionGoals and expectations of health care providers are not completely in line with previously explored goals of patients that are related to pain relief and improving walking abilities. Health care providers seem to put a high emphasis on the quality of life of the patient when evaluating the success of neuromodulation, which is not completely aligned with the currently used reimbursement rules that are mainly focusing on pain relief instead of incorporating health-related quality of life. Clinical Trial RegistrationThe Clinicaltrials.gov registration number for the study is NCT05013840.

Role of Parental Caregiving for Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis

<h3>Background</h3> Parents of children with special health care needs (CSHCN) act as primary medical caregivers while also sustaining relationships and multiple roles as employee, student, and parent, and many more. The additional pressure that medical caregiving puts on parents often results in a multidimensional experience of burden, consisting of physical, social, emotional, and psychological. In this study, we avoid the term "burden" due to its historically problematic nature and instead adopt the framework of role theory (consisting of role strain, role conflict, role overload, and role exist). Our aim was to utilize this framework in order to describe the experiences of parents as informal caregivers for CSHCN. <h3>Purpose</h3> The purpose of this study was to explore the experience of parenting a child with complex life-threatening conditions and the perceived health care provider's expectations on informal caregivers, utilizing role theory to depict parental roles. <h3>Methods</h3> The parent study for this analysis was a longitudinal study on parent and provider decision-making for 35 infants with CSHCN approved by the Duke University IRB. Of the 35, 218 interviews from 15 cases of infants with complex chronic conditions (prematurity, bone marrow transplant, or complex cardiac disease) were selected for this secondary analysis. Data collection for each case was derived from qualitative semi-structured interviews occurring at least monthly until one year after enrollment, unless death of the child intervened. Due to the nature of the parent study, questions targeted parental and provider perceptions, as well as experiences caring for the infant. Transcripts were uploaded to and analyzed in NVivo 12, with a codebook defined and thematic generation performed to capture the content of diverse parental roles embedded within informal parental caregiving expectations by the provider team. <h3>Results</h3> Our analysis identified the potential for role strain, conflict, and overload that parents as informal caregivers experience, sometimes leading to role exit. Challenges noted by parents were, in part, shaped by perceived expectations by the health care providers and system, as well as due to perceived lack of support. Caregiving appeared to be generally linked to self-care deficits, however some subjective positive experiences of the caregiving role were also reported. The status of caregiving and its substantial role set (including managing feeding tubes, ventilators, appointments, discussions with providers, et cetera) caused parents to experience significant role strain. Parents also experienced conflict in managing multiple roles (including that of informal caregiver) associated with different statuses, such as employee, student, wife or husband, etc. Role overload was multifactorial, related to insufficient physical, social, emotional, and financial resources of parents. <h3>Discussion</h3> Parents experienced multiple role transitions and exits, such as leaving employment, education, and relationships. While some parents reported positive experiences, including personal growth and the development of coping mechanisms, it is clear that the caregiver status still carries notable risk related to the role theory framework. It is essential for providers to inquire about parents' responsibilities and roles, encourage relationship support, and advocate for parental self-care.

Experiences, opinions and expectations of health care providers towards an intensive care unit follow-up clinic: Qualitative study and online survey

ObjectivesIndependent of the underlying disease, intensive care unit survivors often suffer from cognitive, physical and mental impairments, also known as post-intensive care syndrome (PICS). Specific follow-up services are recommended for these patients. This study aims to capture the perspectives of health care providers on the development of the first intensive care unit follow-up-clinic in Germany. Research methodologyA qualitative study with six focus groups (n = 41) and six expert interviews, followed by a quantitative survey was conducted, involving nine different professions. Qualitative and quantitative data were analysed using thematic analysis and descriptive statistics, respectively. FindingsParticipants described aftercare of former intensive care unit patients as complex and appreciated the idea of an intensive care unit follow-up clinic to improve continuity of care and multidisciplinary collaboration. The favoured model combined diagnostics and targeted referral of patients to specialists and therapists with the provision of information. In the survey, participants disagreed on how to implement this referral system but agreed that assessments should be multidimensional. ConclusionThe necessity of and important criteria for the design of an intensive care unit follow-up clinic were identified. We will integrate these data with further evidence to develop a concept for a complex intervention.

Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis

PurposeChildren born with Complex Life-Threatening Conditions (CLTCs) often require complex and specialized services. Parents of children with CLTCs balance the role of caregiver with other responsibilities of employment, education, relationships, and self-care. The purpose of this paper is to describe the challenges for parents serving as caregivers of children with CLTCs and their intersection with health care provider expectations through utilization and adaptation of the role theory framework. Design/methodsWe employed a qualitative descriptive design, secondary analysis of a longitudinal study on parent and provider decision making for children with CLTC. There were 218 interviews from sixty-one parents of 35 infants with prematurity, bone marrow transplant, and/or complex cardiac disease, followed for one year unless death occurred. Content analysis and thematic generation were performed capturing the various parental roles embedded within provider expectations of informal parental caregiving. ResultsResults showed that parents of children with CLTCs serve multidimensional roles, including that of informal nurse and care coordinator, while maintaining additional personal roles as parent and family provider. Parents experienced challenges as caregivers that were shaped by perceived expectations of health care providers as well as lack of support, often leading to role strain, conflict, overload, and sometimes exit. ConclusionsParents of children with CLTCs experience both common and unique challenges inn balancing multiple roles as an informal caregiver. Despite utilizing positive coping mechanisms, their status as parent caregiver carries significant risk for role strain and overload. We recommend the implementation of strategies for increasing parental support and family-centered care.

Health-related expectations of the chronically critically ill: a multi-perspective qualitative study

BackgroundThose who survive critical illness only to become chronically critically ill (CCI) experience a high symptom burden, repeat episodes of illness exacerbation, communication barriers, and poor health outcomes. Yet, it is unclear how CCI individuals and their family understand their health and the importance of prognostic information following hospitalization. The research purpose was to examine expectations about health and disease prognosis of CCI residents in long-term care from the perspectives of the CCI themselves and their family members, as well as to describe healthcare provider (HCP) interpretations of, and reactions to, these health-related expectations.MethodsIn this qualitative interpretive descriptive study, conducted in British Columbia, Canada, 38 semi-structured interviews were conducted (6 CCI residents, 11 family members, and 21 HCPs) and inductively analyzed using thematic and constant comparative techniques.ResultsThere was divergence in CCI resident, family and HCP expectations about health and the importance of disease prognosis, which contributed to conflict. CCI residents and family viewed conflict with HCPs in relation to their day-to-day care needs, while HCPs viewed this as arising from the unrealistically high expectations of residents and family. The CCI residents and family focussed on the importance of maintaining hope, and the HCPs highlighted the complexity of end-of-life decisions in conjunction with the high expectations and hopes of family.ConclusionsThe emotional and ongoing process of formulating health-related expectations points to the need for future research to inform the development and/or adapting of existing communication, psychosocial and health services interventions to ease the burden experienced by those who are CCI.

Mentoring in the clinical training of midwifery students - a focus study of the experiences and opinions of midwifery students at the Medical University of Warsaw participating in a mentoring program

BackgroundThe current system of clinical training for midwifery students in Poland is in need of considerable revision to adapt it to the global standards and the expectations of healthcare providers, healthcare users and student midwives themselves. Aim of this study was to report the experiences of midwifery students participating in a mentor-led clinical training program and their opinions of mentoring as a novel training method.MethodsA qualitative descriptive study that used a focus group was undertaken in the period from October 2017 to June 2019. The participants were 12 s- and third-year midwifery students at the Medical University of Warsaw who at various times during the study period had their clinical training in the Department of Obstetrics, Solec Hospital in Warsaw, Poland. All students had previous experience of clinical training other than clinical mentorship. At the end of the study, a focus group interview was conducted with all 12 participants. Five questions were selected to guide the focus group discussion: Did you get any valuable learning experience during your clinical training? How did this clinical training differ from your previous clinical training? What was your experience of one-on-one mentoring? Did the mentoring program meet your expectations? What do you think could be changed to make the proposed mentor-led clinical training more effective?ResultsFour themes were identified. The study demonstrated that mentoring was perceived by the participants as an innovative and effective method of clinical training for midwifery students. All students positively evaluated the quality of the mentor-led clinical training which allowed improving their clinical skills and building new competencies. Students believed they could effectively use their clinical skills and make informed decisions in a safe and supportive clinical learning environment. They felt that their inclusion in the therapeutic team contributed to better patient care.ConclusionsThe use of innovative forms of clinical training at undergraduate level improves its effectiveness and in the future should be reflected in a high-quality maternity care. Mentoring has its advantages for both, mentor and mentee, but the main goal is to develop and improve professional competencies of the junior partner.

Supplemental Material for Racial Identity Safety Cues and Healthcare Provider Expectations

Supplemental Material for Racial Identity Safety Cues and Healthcare Provider Expectations

The physical examination: a survey of patient preferences and expectations during primary care visits

ABSTRACTBackground: Little is known about patient preference regarding the physical exam in non-urgent primary care settings.Objective: To determine the differences between a patient’s expectations of the physical exam and the actual components of the physical examination performed during a non-urgent visit.Design: A total of 452 surveys administered in the waiting room of a VA primary care clinic in West Haven, CT.Key results: The response rate was 91.6% (n = 414). For 15 of 16 maneuvers on the survey, more respondents believed a reasonable provider should conduct it than received it at their annual physical exam; for 7 of them (breast, axillary, rectal, pelvic, total body skin exam, electrocardiogram, and stress test), over twice as many respondents believed they should be done than received them. There was an association between a patient’s perception of their primary care provider and the number of maneuvers recalled at their annual exam (P < 0.001), and a gap in the number of maneuvers expected from a reasonable provider by nonwhite and white patients (P < 0.001).Limitations: Convenience sample, response bias (healthy patients are more likely to respond) and recall bias.Conclusion: Patient perception of their primary care provider is strongly associated with the number of maneuvers recalled during an annual physical. Furthermore, the number of maneuvers expected by a patient is influenced by race, with nonwhite patients desiring more. This suggests the need for further research on the role of race in the expectations of healthcare providers.

Perceptions and expectations of health care providers towards clinical pharmacy services at a tertiary cancer centre in Qatar.

BackgroundClinical pharmacy services started in 2009 at the National Center for Cancer Care and Research, Qatar. Clinical pharmacy services was established to provide comprehensive prescription of drug management and support, and consulting services to build clinically efficient and cost-effective pharmacy program.AimTo determine perceptions and expectations of healthcare providers toward the clinical pharmacy services at the National Center for Cancer Care and Research.MethodsA cross-sectional survey of healthcare providers was conducted from January to May 2018. A self-administered electronic/paper survey containing four domains assessing healthcare providers’ perceptions and expectations towards clinical pharmacy services, perceived barriers to clinical pharmacist role and suggested area for improvement was sent to 375 healthcare providers including physicians, operational pharmacists, nurses and dietitians.ResultsThe response rate was 112/375. Most of the healthcare providers (74%) perceived the increasing interest in clinical pharmacy services. Also, they expected (1) providing consultations regarding appropriate medication choices (82%); (2) providing information about medication availability and shortages (82%); (3) assisting in the prescribing of cost-effective drugs by providing pharmacogenomics information routinely (75%) and (4) Participating actively in research activities (74%). Overall, healthcare providers have a high level of trust in the clinical pharmacists’ abilities (P < 0.01). Nurses were less appreciative (P < 0.002) of the positive role of clinical pharmacists in direct patient care as compared to both physicians and pharmacists (64.2%, 90% and 95.7%, respectively).ConclusionThis study revealed a positive attitude towards the role of clinical pharmacists by healthcare providers at National Center for Cancer Care and Research. However, there is an area of improvement by empowering with privilege and staffing, elevating the awareness and expansion in the ambulatory care settings.

First-time mothers’ experiences of preparing for childbirth at advanced maternal age

ObjectiveTo explore the lived experiences of preparing for childbirth for nulliparous women aged 35–44 and determine how mature first-time mothers’ can be better supported regarding childbirth preparation. DesignThe research study comprised a cross-sectional qualitative design utilising Interpretative Phenomenological Analysis to provide a deep exploration into the experience of mature age women. SettingParticipants resided in South Australia and Victoria, Australia, in regional, suburban and inner-city locations. ParticipantsFourteen nulliparous women aged 35–44 were recruited in their third trimester of pregnancy using purposeful sampling. MethodData were collected by conducting in-depth semi-structured interviews during 28–36 weeks of pregnancy. Data were transcribed and analysed using Interpretative Phenomenological Analysis to identify themes of mature first-time mothers’ preparations for childbirth. FindingsThe super ordinate theme “Building confidence for childbirth” describes mature first-time mothers’ experience of preparing for childbirth. This process appears to influence women's information seeking behaviour, expectations of healthcare providers, and reflections on birth planning. ConclusionsParticipants sought various support and interactions with healthcare providers, both helpful and unhelpful, with nulliparous women of advanced maternal age undertaking various preparations with the intention of a positive childbirth experience. Participants were seeking support from friends, along with conducting their own independent research and activities. Implications for practiceIt is evident that more and more women in developed countries are delaying having children into their late thirties and over, and these women report various levels of support from health practitioners. Healthcare professionals have the potential to foster more trustful relationships and empowering interactions with women, provide various resources regarding childbirth preparation, and sensitive birth planning assistance that supports women's agency along with managing risk. Guidelines based on this and other research in managing the antenatal care of women of advanced maternal age would ensure consistency, particularly in terms of risk management and childbirth.

Women’s expectations of healthcare providers in the context of reproductive abuse in Australia

Reproductive abuse is a poorly understood form of violence against women. It is defined as a deliberate attempt to interfere with or control a women’s reproductive choices and is usually perpetrated by a male intimate partner. Reproductive abuse is associated with a range of poor health outcomes for women, increasing the likelihood that they will visit a healthcare provider. Despite this, there is a dearth of evidence to inform best practice in health settings, particularly research that highlights the voices of survivors. Qualitative studies to date have focused on intimate partner or sexual violence more broadly, yet it is likely that reproductive abuse presents its own nuance in terms of a supportive response. In this paper, we address this gap by reporting qualitative data from 14 women who self-identified as survivors of reproductive abuse. Findings suggest that healthcare providers have an important role to play in responding to reproductive abuse, focusing on taking the problem seriously, reinforcing that the behaviour is wrong, asking about other forms of violence and addressing women’s needs and priorities for contraception and reproductive autonomy. This study has important implications for the development of best practice guidelines for healthcare providers responding to reproductive abuse in female patients.

Perceptions and expectations of health care providers towards clinical pharmacy services in a mental health hospital in Qatar.

With the growing burden of mental disorders, pharmacists are ideally positioned to play an important role in supporting people with a mental illness. However, the value of clinical pharmacists within mental health remains unrecognized by other healthcare professionals. The purpose of this study was to explore the perceptions and expectations of mental health professionals on the provision of clinical pharmacy services (CPS) at a psychiatric hospital. A cross-sectional, self-administered, online survey was administered to physicians and nurses working at a psychiatric hospital. Five-point likert scales were used to measure participant's perceptions and expectations about the CPS provided. Descriptive and inferential statistical analysis were undertaken. Both physicians and nurses reported positive perceptions regarding the CPS provided at the hospital, although physicians agreement with positive statements was higher than those reported by nurses (mean likert scale score 4.76 and 4.45, respectively). There was a statistically significant positive association between participants' years of experience and agreeing that clinical pharmacy services are essential for achieving hospital accreditation (χ2 = 13.11, φ = 0.41, p = 0.04). A statistically significant positive association was noted between the physicians' current position and agreeing that pharmacists assist physicians in selecting more cost effective medication regimens (χ2 = 16.55, φ = 0.62, p = 0.04). Physicians and nurses have mostly positive perceptions and expectations from clinical pharmacists at the psychiatric hospital. However, traditional clinical pharmacy services were more favorably viewed than those associated with advanced clinical roles such as prescribing and pharmacist-led medication management clinics.

Perceived Role and Expectations of Health Care Providers in Return to Work.

Purpose Health care providers (HCPs) play an important role in return to work (RTW) and in the workers' compensation system. However, HCPs may feel unsure about their responsibilities in the RTW process and experience difficulty making recommendations about RTW readiness and limitations. This study examines the ways in which HCPs and case managers (CMs) perceive HCPs role in the RTW process, and how similarities and differences between these views, in turn, inform expectations of HCPs. Methods In-depth interviews were conducted with 69 HCPs and 34 CMs from 4 provinces. Data were double coded and a thematic, inductive analysis was carried out to develop key themes. Findings The main role of HCPs was to diagnose injury and provide patients with appropriate treatment. In addition, the majority of HCPs and CMs viewed providing medical information to workers' compensation board (WCB) and the general encouragement of RTW as important roles played by HCPs. There was less clarity, and at times disagreement, about the scope of HCPs' role in providing medical information to WCB and encouraging RTW, such as the type of information they should provide and the timelines for RTW. Conclusion Interviews suggest that different role expectations may stem from differing perspectives of HCPs and the CMs had regarding RTW. A comprehensive discussion between WCB decision-makers and HCPs is needed, with an end goal of reaching consensus regarding roles and responsibilities in the RTW process. The findings highlight the importance of establishing clearer role expectations.

Unexpected Survivors: Children With Life-Limiting Conditions of Uncertain Prognosis.

Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. This is a retrospective cohort study conducted in a tertiary-care children's hospital in North Carolina. "Unexpected survivors," defined as children who survived despite a prognosis of imminent death or significantly longer than prognosticated by health-care providers, were identified from among 349 children enrolled in a pediatric palliative care program between March 2008 and October 2012. Children's clinical courses were followed until September 2015 or their death. Eighteen (5%) children were identified as unexpected survivors; 17 (10 girls and 7 boys) were included. Congenital anomalies were the most common diagnoses. Neonatal intensive care unit was the most frequent setting of prognostication. Thirteen children used some form of medical technology at the time of prognostication. Eleven children received hospice services. Eight died during the observation period but survived significantly longer than expected (median survival time 1.5 years), and 9 survived beyond the observation period (median survival time 5.9 years). Unexpected survivors are a small group of children with life-limiting conditions. Clinicians should be aware of the possibility of prognostic inaccuracy, able to communicate prognostic uncertainty to parents, and engage supportive services when prognosticating poor survival. Prospective studies are needed to understand outcomes of children with life-limiting illnesses of uncertain prognosis.

Walking the “Emotional Tightrope” From Pregnancy to Parenthood

Advances in medical technology account for increasingly more couples receiving fetal diagnoses of complex congenital heart disease. Theory on internal working models of caregiving during parenting transitions informed this prospective, exploratory study. Data included conjoint interviews and measures of anxiety, trauma, and depression collected from six couples after diagnosis and after birth. Severity of illness was described using infant health records. Directed content analysis furthered understanding of the caregiving motivation to manage health care that included three categories of parental efforts: (a) to determine expectations of health care providers, (b) to reconcile illness- and non-illness-related care, and (c) to express agency as a parent. Synthesis of qualitative findings transformed into categorical ratings with parents' levels of distress resulted in two profiles characterizing types of internal working models. Findings extend theory on internal working models of caregiving and offer direction for future research regarding parental management of health care for their chronically ill offspring. Implications for practice with families are offered.

Family participation during intensive care unit rounds

In an earlier study, published in The Journal, Stickney et al from Boston Children’s Hospital evaluated the level of parental satisfaction with family attendance during pediatric intensive care unit rounds (J Pediatr 2014;164:404-6.e4). They found a high degree of parental satisfaction but a lower degree of healthcare provider satisfaction. In the current issue of The Journal, they report a new study of the goals and expectations of parents and healthcare providers in this setting. This was performed using qualitative methods; the parents were interviewed at bedside, and the healthcare providers participated in focus group discussions.The results show many important areas of agreement between providers and parents regarding goals for rounds when parents are present, including helping parents achieve an understanding of the child’s status and plan of care. However, providers and parents disagreed about the nature of opportunities to ask questions. Parents additionally reported that they wanted to provide important information about their children to the healthcare team and that they expected transparency from the team. In contrast, providers stated that parental presence sometimes inhibited frank discussion and education. The authors conclude that even though there is some agreement in goals for parent participation in morning rounds in the pediatric intensive care unit, there are opportunities to adjust the expectations of both parents and healthcare providers. They suggest several possible solutions that could help address this problem.Article page 1245▶ In an earlier study, published in The Journal, Stickney et al from Boston Children’s Hospital evaluated the level of parental satisfaction with family attendance during pediatric intensive care unit rounds (J Pediatr 2014;164:404-6.e4). They found a high degree of parental satisfaction but a lower degree of healthcare provider satisfaction. In the current issue of The Journal, they report a new study of the goals and expectations of parents and healthcare providers in this setting. This was performed using qualitative methods; the parents were interviewed at bedside, and the healthcare providers participated in focus group discussions. The results show many important areas of agreement between providers and parents regarding goals for rounds when parents are present, including helping parents achieve an understanding of the child’s status and plan of care. However, providers and parents disagreed about the nature of opportunities to ask questions. Parents additionally reported that they wanted to provide important information about their children to the healthcare team and that they expected transparency from the team. In contrast, providers stated that parental presence sometimes inhibited frank discussion and education. The authors conclude that even though there is some agreement in goals for parent participation in morning rounds in the pediatric intensive care unit, there are opportunities to adjust the expectations of both parents and healthcare providers. They suggest several possible solutions that could help address this problem. Article page 1245▶ Family Participation during Intensive Care Unit Rounds: Goals and Expectations of Parents and Health Care Providers in a Tertiary Pediatric Intensive Care UnitThe Journal of PediatricsVol. 165Issue 6PreviewTo compare perceptions, goals, and expectations of health care providers and parents regarding parental participation in morning rounds and target specific areas of opportunity for educational interventions. Full-Text PDF