Challenges and Opportunities for Academic Parents During COVID-19.

Parents in academic careers face notable challenges that may go unrecognized by university management and/or policy makers. The COVID-19 pandemic has shed light on some of these challenges, as academic parents shifted to working from home while simultaneously caring for children. On the other hand, many parents found that the shift to working from home offered new opportunities such as working more flexible hours, development of digital skillsets, and increased involvement in the education of their children. In this article we explore the work-related challenges and opportunities experienced by academic parents as a result of the COVID-19 pandemic and offer potential long-term solutions for academic parents and their universities. We use the following methods: (1) a literature review focused on identifying the work-related challenges academic parents faced prior to the pandemic, as well as the impact of the pandemic on scientists and working parents and (2) administer a world-wide survey with the goal of identifying the challenges and opportunities associated with parenting and academic work through the COVID-19 lockdown (304 total responses; 113 complete). Moving forward these findings have enabled conclusions to be drawn in order to shape a new normal. Our aim is to offer university administrators, policy makers, and community service providers with ways to provide additional support for academic parents as well as provide tools for academic parents to learn successful strategies directly from their peers.

Nationwide evaluation of palliative care (Q-PAC study) provided by specialized palliative care teams using quality indicators : Large variations in quality of care.

BACKGROUND: Although a number of quality indicators for palliative care have been implemented worldwide, evidence regarding the performance of palliative care teams is scarce. AIM: Evaluating the quality of palliative care using quality indicators; to describe the variation in quality between palliative care teams; and to suggest quality benchmarks for these teams. DESIGN: A repeated cross-sectional study design to collect quality indicator data by means of a validated quality indicator set in 36 Belgian palliative care teams at home and in hospitals. Risk-adjustment procedures, taking into account patient-mix, were applied to suggest benchmarks. PARTICIPANTS: Between 2014 and 2017, five quality measurements with questionnaires were conducted in 982 patients receiving palliative care, 4701 care providers and 1039 family members of deceased patients. RESULTS: A total of 7622 assessments were received. Large risk-adjusted variations between the different palliative care teams were identified in: regularly updating patient files (IQR: 12%-39%), having multidisciplinary consultations about care objectives (IQR: 51%-73%), discussing end-of-life care decisions with patients (IQR: 26%-71%-92%), relieving shortness of breath (IQR: 57%-78%), regularly assessing pain (IQR: 43%-74%) and symptoms by means of validated scales (IQR: 23%-60%), initiating palliative care at least 2 weeks before death (IQR: 30%-50%), and weekly contact with the GP in the last 3 months of life (IQR 16%-43%). CONCLUSION: The large risk-adjusted variation found across the quality indicator scores suggest that repeated and standardized quality improvement evaluations can allow teams to benchmark themselves to each other to identify areas of their palliative care delivery that need improvement.

Pilot Study to Develop and Test Palliative Care Quality Indicators for Nursing Homes.

An increasingly frail population in nursing homes accentuates the need for high quality care at the end of life and better access to palliative care in this context. Implementation of palliative care and its outcomes can be monitored by using quality indicators. Therefore, we developed a quality indicator set for palliative care in nursing homes and a tailored measurement procedure while using a mixed-methods design. We developed the instrument in three phases: (1) literature search, (2) interviews with experts, and (3) indicator and measurement selection by expert consensus (RAND/UCLA). Second, we pilot tested and evaluated the instrument in nine nursing homes in Flanders, Belgium. After identifying 26 indicators in the literature and expert interviews, 19 of them were selected through expert consensus. Setting-specific themes were advance care planning, autonomy, and communication with family. The quantitative and qualitative analyses showed that the indicators were measurable, had good preliminary face validity and discriminative power, and were considered to be useful in terms of quality monitoring according to the caregivers. The quality indicators can be used in a large implementation study and process evaluation in order to achieve continuous monitoring of the access to palliative care for all of the residents in nursing homes.

Family carer support in home and hospital: a cross-sectional survey of specialised palliative care.

OBJECTIVES: To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased. METHODS: A cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted. RESULTS: Of all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare. CONCLUSIONS: Family carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.

Information provision as evaluated by people with cancer and bereaved relatives: A cross-sectional survey of 34 specialist palliative care teams.

OBJECTIVE: To explore how individuals with cancer and bereaved relatives evaluate information provision by specialist palliative care services (PCSs). METHODS: A cross-sectional survey was conducted within four multidisciplinary palliative homecare teams (HCTs), 17 hospital-based palliative care units (PCUs) and 13 hospital-based mobile palliative support teams (PSTs) in Belgium. During four measurement periods, structured questionnaires were administered to people being guided by PCSs and relatives of patients who had died while under the care of PCSs. RESULTS: In total, 628 patients (80%) and 980 relatives (55%) responded; 73-82% and 75-77% respectively reported having received the right amount of information. Compared with those receiving care within a PCU, those being supported by a PST were more likely to report suboptimal information provision and decision-making. Relatives of those who had died while under the guidance of a PST were also more likely to report suboptimal information provision than their PCU counterparts. CONCLUSION: Although information provision to cancer patients and relatives being supported by PCSs is generally evaluated positively, evaluations depend on the type of service. PRACTICE IMPLICATIONS: Information provided within PCUs offering highly personalised, continuous care appears to both groups more satisfactory than that provided by palliative care teams mainly supporting care staff.

Systematic Quality Monitoring For Specialized Palliative Care Services: Development of a Minimal Set of Quality Indicators for Palliative Care Study (QPAC).

BACKGROUND: A feasibility evaluation of a comprehensive quality indicator set for palliative care identified the need for a minimal selection of these indicators to monitor quality of palliative care services with short questionnaires for the patients, caregivers, and family carers. OBJECTIVES: To develop a minimal indicator set for efficient quality assessment in palliative care. DESIGN: A 2 round modified Research ANd Development corporation in collaboration with the University of California at Los Angeles (RAND/UCLA) expert consultation. SETTING/PATIENTS: Thirteen experts in palliative care (professionals and patient representatives). MEASUREMENTS: In a home assignment, experts were asked to score 80 developed indicators for "priority" to be included in the minimal set on a scale from 0 (lowest priority) to 9 (highest priority). The second round consisted of a plenary meeting in which the minimal set was finalized. RESULTS: Thirty-nine of the 80 indicators were discarded, while 19 were definitely selected after the home assignment, and 22 were proposed for discussion during the meeting; 12 of these survived the selection round. The final minimal indicator set for palliative care consists of 5 indicators about the physical aspects of care; 6 about the psychosocial aspects of care; 13 about information, communication, and care planning; 5 about type of care; and 2 about continuity of care. CONCLUSION: A minimal set of 31 indicators reflecting all the important issues in palliative care was created for palliative care services to assess the quality of their care in a quick and efficient manner. Additional topic-specific optional modules are available for more thorough assessment of specific aspects of care.

How to implement quality indicators successfully in palliative care services: perceptions of team members about facilitators of and barriers to implementation.

PURPOSE: There is an increasing demand for the use of quality indicators in palliative care. With previous research about implementation in this field lacking, we aimed to evaluate the barriers to and facilitators of implementation. METHODS: Three focus group interviews were organized with 21 caregivers from 18 different specialized palliative care services in Belgium. Four had already worked with the indicators during a pilot study. The focus group discussions were transcribed verbatim and analyzed using the thematic framework approach. RESULTS: The caregivers anticipated that a positive attitude by the team towards quality improvement, the presence of a good leader, and the possible link between quality indicators and reimbursement might facilitate the implementation of quality indicators in specialized palliative care services. Other facilitators concerned the presence of a need to demonstrate quality of care, to perform improvement actions, and to learn from other caregivers and services in the field. A negative attitude by caregivers towards quality measurement and a lack of skills, time, and staff were mentioned as barriers to successful implementation. CONCLUSION: Palliative caregivers anticipate a number of opportunities and problems when implementing quality indicators. These relate to the attitudes of the team regarding quality measurement; the attitudes, knowledge, and skills of the individual caregivers within the team; and the organizational context and the economic and political context. Training in the advantages of quality indicators and how to use them is indispensable, as are structural changes in the policy concerning palliative care, in order to progress towards systematic quality monitoring.

Quality indicators for palliative care services: mixed-method study testing for face validity, feasibility, discriminative power and usefulness.

BACKGROUND: In the absence of a standardized, comprehensive and valid set of quality indicators for palliative care, we developed one for palliative care services in Belgium. AIM: This study evaluates its face validity, feasibility, discriminative power and usefulness. DESIGN: We combined a quantitative analysis evaluating the answers with qualitative interviews with the contact persons of all participating services. SETTING: The quality indicator set was implemented in nine palliative care services in Belgium involving a measurement procedure with questionnaires to the patients of the services, their professional caregivers, family carers and physicians. RESULTS: The response rate was 56% for patients, 97% for caregivers, 56% for family carers and 65% for physicians, indicating good feasibility of the measurement procedure. During the interviews, caregivers found the indicator scores valid and none was extremely skewed, confirming their discriminative power. Still, 20 of the 80 indicators showed problems of feasibility and 5 of usefulness. One was discarded and the others were improved by changing either the formulation of the indicator or the questions used. Most participants expressed a desire for a smaller but still comprehensive set. CONCLUSION: Based on the results, minor adjustments were made to individual indicators, to the measurement tools and to the procedure used; the quality indicators are now ready for further evaluation and use across palliative care services in Belgium. As soon as these indicators are being used systematically, it will be possible to demonstrate and compare quality at the national and international levels and to evaluate improvement initiatives.

Quality indicators for palliative care: update of a systematic review.

CONTEXT: In 2007, a systematic review revealed a number of quality indicators referring mostly to palliative care outcomes and processes. Psychosocial and spiritual aspects were scarcely represented. Most publications lacked a detailed description of the development process. With many initiatives and further developments expected, an update is needed. OBJECTIVES: This update gives an overview of the published quality indicators for palliative care and identifies any new developments since 2007 regarding the number and type of indicators developed and the methodology applied. METHODS: The same literature search as in the 2007 review was used to identify relevant publications up to October 2011. Publications describing development processes or characteristics of quality indicators for palliative care were selected by two reviewers independently. RESULTS: The literature search resulted in 435 hits in addition to the 650 hits found in the previous review. Thirteen new publications were selected in addition to the 16 publications selected earlier, describing 17 sets of quality indicators containing 326 indicators. These cover all domains of palliative care as defined by the U.S. National Consensus Project. Most indicators refer to care processes or outcomes. The extent to which methodological characteristics are described varies widely. CONCLUSION: Recent developments in measuring quality of palliative care using quality indicators are mainly quantitative in nature, with a substantial number of new indicators being found. However, the quality of the development process varies considerably between sets. More consistent and detailed methodological descriptions are needed for the further development of these indicators and improved quality measurement of palliative care.

Towards a standardized method of developing quality indicators for palliative care: protocol of the Quality indicators for Palliative Care (Q-PAC) study.

BACKGROUND: In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive and valid quality indicator set which can contribute to a standardized method for use in other countries. METHODS AND DESIGN: Firstly, an extensive literature review identified existing international quality indicators and relevant themes for measuring quality in palliative care. Secondly, the most relevant of these were selected by an expert panel. Thirdly, those prioritized by the experts were scored by a second multidisciplinary expert panel for usability and relevance, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included carers and policymakers as well as patients and next-of-kin. Fourthly, the draft set was tested and evaluated in practice for usability and feasibility; the indicators were then translated into questionnaires presented to patients, next-of-kin and care providers. To encourage the acceptance and use of the indicators, stakeholders, including national palliative care organizations, were involved throughout the whole project. CONCLUSION: Our indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings. The set includes patient and relative perspectives and includes outcome, process and structure indicators. Our method can contribute internationally to a more standardized and rigorous approach to developing quality indicators for palliative care.

Dying at home in Belgium: a descriptive GP interview study.

BACKGROUND: While increasing attention is being paid to enabling terminal patients to remain at home until death, limited information is available on the circumstances in which people at home actually die. Therefore this study aims to describe patient characteristics, functional and cognitive status and physical and psychological symptom burden in the last three months of life among Belgian patients dying at home, according to their GPs. METHODS: In 2005, a nationwide and retrospective interview study with GPs took place on people dying at home in Belgium as reported by Sentinel Network of GPs in Belgium. GPs registered all deaths (patients aged 1 year or more) weekly and were interviewed about all patients dying non-suddenly at home, using face-to-face structured interviews. RESULTS: Interviews were obtained on 205 patients (90% response rate). Between the second and third month before death, 55% were fully invalid or limited in self-care. In the last week of life, almost all were fully invalid. Fifty four percent were unconscious at some point during the last week; 46% were fully conscious. Most frequently reported symptoms were lack of energy, lack of appetite and feeling drowsy. Conditions most difficult for GPs to manage were shortness of breath, lack of energy and pain. CONCLUSIONS: Many people dying at home under the care of their GPs in Belgium function relatively well until the last week of life and cognitive status seems to be preserved until the end in many cases. However, symptoms which GPs find difficult to control still manifest in many patients in the final week of life.