Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure.

BACKGROUND: Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility. METHODS: For evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content. RESULTS: The Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS). CONCLUSIONS: PRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.

PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses.

OBJECTIVES: To determine the measurement properties of PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS), a parent-reported measure of Quality of Care for seriously ill children across care settings and illness trajectories. STUDY DESIGN AND SETTING: Parents self-administered baseline and 2-week follow-up surveys online. Exploratory Factor Analysis was used to determine PRECIOUS's factor structure and select items. Internal consistency was evaluated with Cronbach's α, test-retest reliability with intraclass correlation coefficients, and convergent validity with Spearman's correlations between PRECIOUS scales and subscales of Measure of Processes of Care and Quality of Children's Palliative Care Instrument. RESULTS: Of 152 parents [108 (71%) mothers, 44 (29%) fathers] who completed the baseline survey, 123 (81%) completed follow-up. Exploratory Factor Analysis grouped PRECIOUS into five scales: collaborative and goal-concordant care (12 items), caregiver support and respectful care (15 items), access to financial and medical resources (five items), reducing caregiving stressors (nine items), and hospitalization-specific processes (four items). Root Mean Square Error of Approximation was 0.040 and Comparative Fit Index was 0.980. Cronbach's α ranged from 0.85 to 0.96. Intraclass correlation coefficients ranged from 0.72 to 0.86. Significant correlations with Measure of Processes of Care and Quality of Children's Palliative Care Instrument confirmed convergent validity. The original 56-item tool was reduced to 45 items. CONCLUSION: PRECIOUS demonstrates satisfactory measurement properties for assessing Quality of Care for seriously ill children.

Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study.

BACKGROUND: Despite the diagnosis of life-limiting foetal conditions, some mothers choose to continue their pregnancies. The experiences of these individuals are relatively unknown, making it difficult for perinatal palliative services to be targeted towards their needs. AIM: To examine maternal experiences in perinatal palliative care among those who choose to continue their pregnancies despite life-limiting foetal condition. DESIGN: Qualitative, retrospective study involving semi-structured interviews. Braun & Clarke's reflexive thematic analyses using a constructionist-interpretive approach were conducted. SETTING/PARTICIPANTS: A total of 15 adult women participants who decided to continue their pregnancies after learning of life-limiting foetal diagnoses were recruited from a Singaporean tertiary hospital. Interviews were conducted in-person or via video conferencing. RESULTS: Seven themes were synthesized from the data: (1) Internal upheaval - 'World turns upside down'; (2) Role of religion and spirituality in hope of miracles; (3) Support from family and close friends; (4) Navigating a fragmented healthcare system; (5) Value added by the perinatal palliative service; (6) Goodbye and grieving and (7) No regrets and other personal reflections. CONCLUSIONS: Continuing a pregnancy despite the diagnosis of a life-limiting foetal condition can be challenging for mothers. To better meet their needs during this difficult period, perinatal palliative care must be patient-centred, multidisciplinary and non-judgmental. Efforts must be made to streamline the healthcare delivery process.

Understanding the needs of health care workers in Singapore during the COVID-19 outbreak: A qualitative analysis.

BACKGROUND: A successful public health response during the COVID-19 pandemic pivots on the ability of health care workers (HCWs) to work through immense workplace-related physical and psychological pressures. OBJECTIVE: The aim of current study was to explore support needs of HCWs during the COVID-19 outbreak in Singapore and to identify implications for practice and workplace policies. METHODS: A descriptive qualitative approach was adopted in this study. HCWs from a major public health care cluster in Singapore (n = 612) responded to an open-ended question in an online survey. Results were analyzed using content analysis via an inductive approach. RESULTS: Five main themes that borrows from Maslow's Hierarchy of Needs emerged from content analysis, with 17 categories under the themes. The 5 main themes are: physical needs, safety needs, love and belonging needs, esteem needs and self-actualization needs. CONCLUSIONS: Findings from this study indicate that there were many unmet needs among HCWs during the COVID-19 pandemic. An overview of various need areas identified in this study may guide future research and development of interventions to mitigate the negative impact of disease outbreaks on HCWs.

Medication chart review at end of life of paediatric palliative patients.

AIM: This study aimed to review the use of medications in a paediatric palliative care (PPC) population during the last two weeks of life. METHODS: This is a retrospective observational cohort study that included 50 consecutive patients who were referred to KK Hospital PPC service from 2011 to 2015. Those who died after two weeks from discharge date were excluded. Medication charts were reviewed and relevant data were extracted. RESULTS: The study population included 42 patients and consists predominantly oncological and neurological diagnoses. The median number of medications used was 11.5. Ninety-five percent (40 out of 42) of study population required analgesia where 81% (34 out of 42) were opioid. There was prevalent use of antibiotics (86% of study population, 36 out of 42). Less frequently used medications included steroids, sedatives, laxatives and antiemetics (48%, 52%, 48% and 38% of study population respectively). CONCLUSION: Significant number of medications was used in PPC during the last two weeks of life. Apart from significant use of analgesia, there is also notable use of antibiotics. Future directions in education such as prescription of laxatives with opioid are proposed.

Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions.

Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service providing individually tailored holistic care during pregnancy, birth, postnatal and bereavement period. Methods: Following a baseline survey of neonatologists and discussions with key stakeholders we launched the Perinatal Palliative service at the KK Women's and Children's hospital, Singapore in January 2017. The multidisciplinary team, led by a Palliative care specialist comprised of Obstetricians, Neonatologists, nurses and medical social workers. The Birth defect clinic referred parents with antenatally diagnosed 'Lethal' fetal conditions. The team checked the understanding and the decision making process of parents and initiated and finalized advance care plans. The service also embraced deserving postnatal referrals upon request. Results: A total of 41 cases were seen from January 2017 to December 2019. Of these, 26/41(63%) were referred antenatally and had completed advance care plans. 18/41 (44%) died during or shortly after birth and 10/41(24%) continue to survive and are supported by the community palliative team. During this time a workflow was formulated and modified based on parent and team feedback. Conclusion: Awareness of the service has increased over the years and a clear workflow has been formulated. Advance care plans are prepared and documented before birth so as to enable service teams on board to provide well timed pertinent care. Feedbacks from parents about this service were positive.

Healthcare worker stress, anxiety and burnout during the COVID-19 pandemic in Singapore: A 6-month multi-centre prospective study.

AIM: The long-term stress, anxiety and job burnout experienced by healthcare workers (HCWs) are important to consider as the novel coronavirus disease (COVID-19) pandemic stresses healthcare systems globally. The primary objective was to examine the changes in the proportion of HCWs reporting stress, anxiety, and job burnout over six months during the peak of the pandemic in Singapore. The secondary objective was to examine the extent that objective job characteristics, HCW-perceived job factors, and HCW personal resources were associated with stress, anxiety, and job burnout. METHOD: A sample of HCWs (doctors, nurses, allied health professionals, administrative and operations staff; N = 2744) was recruited via invitation to participate in an online survey from four tertiary hospitals. Data were gathered between March-August 2020, which included a 2-month lockdown period. HCWs completed monthly web-based self-reported assessments of stress (Perceived Stress Scale-4), anxiety (Generalized Anxiety Disorder-7), and job burnout (Physician Work Life Scale). RESULTS: The majority of the sample consisted of female HCWs (81%) and nurses (60%). Using random-intercept logistic regression models, elevated perceived stress, anxiety and job burnout were reported by 33%, 13%, and 24% of the overall sample at baseline respectively. The proportion of HCWs reporting stress and job burnout increased by approximately 1·0% and 1·2% respectively per month. Anxiety did not significantly increase. Working long hours was associated with higher odds, while teamwork and feeling appreciated at work were associated with lower odds, of stress, anxiety, and job burnout. CONCLUSIONS: Perceived stress and job burnout showed a mild increase over six months, even after exiting the lockdown. Teamwork and feeling appreciated at work were protective and are targets for developing organizational interventions to mitigate expected poor outcomes among frontline HCWs.

Relationship Satisfaction Mediates the Association Between Emotional Expressiveness and Depressive Symptoms Among Asian Women.

INTRODUCTION: Few studies in Asia have examined the association among depressive symptoms, relationship satisfaction, sexual dysfunction and emotional expressiveness. Examining the role of emotional expressiveness in the context of depression and relationships is important as it can be a point for therapeutic intervention. MATERIALS AND METHODS: Guided by the Marital Discord Model of Depression and based on data from partnered women in Singapore (n = 193), we conducted a path analysis to examine the mediating role of relationship satisfaction and sexual dysfunction in the link between difficulty in emotional expression and depressive symptoms. RESULTS: Controlling for age and health, lower relationship satisfaction (ß = -0.213; P <0.001), higher sexual dysfunction (ß = 0.139; P = 0.010) and greater difficulty in emotional expression (ß = 0.908; P <0.001) were associated with increased depressive symptoms. Relationship satisfaction partially mediated the association between emotional expressiveness and depressive symptoms (indirect effect, 0.169; 95% confidence interval, 0.043‒0.379). CONCLUSION: The findings suggest the importance of effective communication in mitigating relationship- and self-distress.

The relationship between symptom prevalence, body image, and quality of life in Asian gynecologic cancer patients.

OBJECTIVE: Gynecologic cancer is associated with long-term effects that can be both physical and emotional. We examined symptom prevalence and body image disturbance in patients with gynecologic cancer and their association with quality of life. Predictors of clinically-relevant body image disturbance were examined. METHODS: A sample of patients in Singapore (n = 104) was assessed for symptom prevalence, quality of life, and body image dissatisfaction. Clinical factors were extracted from medical records. RESULTS: The most frequently reported symptoms were fatigue, abdominal bloatedness, weight gain, constipation, hot flashes, and pelvic pain. Approximately one quarter patients reported feeling less physically attractive and dissatisfied with their body. Ordinary least squares regression indicated that symptom prevalence alone predicted physical well-being, b = -1.09, P < .001, 95% CI, -1.45 to -0.73, and functional well-being, b = -0.88, P < .001, 95% CI, -1.32 to -0.45. Body image dissatisfaction alone significantly predicted emotional well-being, b = -0.21, P < .01, 95% CI, -0.35 to -0.06. Younger age was a significant risk factor for clinically-relevant score of body image distress, OR = 0.95 per year older, 95% CI, 0.92 to 0.99, P = .02. CONCLUSIONS: Symptom prevalence and body image dissatisfaction were associated with different domains of quality of life. Emotional well-being of patients was better explained by body image, rather than extent of symptoms experienced. Patients who are younger appear particularly susceptible to body image disturbance.