Involvement In Care Decisions Research Articles

Women’s experiences of early pregnancy loss services during the pandemic: A qualitative investigation

ProblemEarly pregnancy losses [EPL] are common, varied, and require different courses of management and care. BackgroundIn the UK, women who suspect or suffer a pregnancy loss are usually provided specialist care in early pregnancy assessment units [EPAUs]. Their configuration has recently been evaluated, but recommendations for change in-line with best practice for optimum outcomes were unable to be implemented due to the COVID-19 pandemic health system shock. AimTo compare women’s experiences of EPAUs during the pandemic to themes previously found in qualitative work undertaken with women who utilised EPAUs before the pandemic. MethodsWe conducted semi-structured virtual interviews, with women (N = 32) who suffered an early pregnancy loss during the pandemic; analysing transcripts using Template Analysis, based on findings about women’s (pre-pandemic) experiences of EPAU from The VESPA Study. FindingsWe report on seven key themes: Barriers to Accessing Services; Communication & Information; Retention of Relational Care; Involvement in Care Decisions; Staffs’ Attitude or Approach; Efficiency of Service Delivery; Sensitive Patient Management. DiscussionSensitive patient management and woman-staff interactions in EPAU settings remain a fundamental issue. Women also reported their experiences of EPAUs were comparatively worse during the pandemic. ConclusionsWomen valued the care provided by EPAUs and found services to be efficient, despite pandemic-related restrictions. However, psychological recognition surrounding EPL and appropriate, sensitive, relational care and support continue to be areas in need of improvement. Our recommendation is to implement the improvements suggested by VESPA as a priority to ameliorate present sub-optimal experiences and prevent further deterioration.

Exploring patient, informal carer and care professional perspectives to understand the key clinical and non-clinical care needs of those living with multiple long-term conditions (MLTC).

Multiple long-term conditions (MLTC) are the co-occurrence of two or more chronic long-term conditions. While numerous studies have examined health and social care needs associated with MLTC, there has been limited research exploring both clinical and non-clinical care needs of this patient cohort from a range of perspectives. To explore patient, informal carer, and care professional perspectives to identify what are the key clinical and non-clinical needs for optimal care in people with MLTC. Semi-structured interviews were conducted with a representative sample of 29 patients, informal carers, and professionals, using video-link or telephone. Inductive reflexive thematic analysis was used to analyse and interpret the data. A range of clinical and non-clinical care needs were identified, including supporting patient self-management of conditions, informal carer involvement in care decisions, limited knowledge of MLTC among care professionals, and mental health and socioeconomic needs of individuals were emphasised as important to optimal care in MLTC.Improvements to optimise care included: more personalised care interventions, improved care professional understanding of MLTC care needs, involvement of informal carers in care decisions and promoting patient self-management of conditions and increased consideration given to non-clinical care needs. MLTC patients often have a complex range of clinical and non-clinical care needs. This requires a holistic and coordinated care approach, enabling care to be tailored to personal care needs of individuals with MLTC.

The impact of patient demographics on involvement in cancer care decisions in the US.

e18746 Background: As the oncology market continues to expand and more treatment options become available, the potential for highly personalized cancer care increases. In recent years, emphasis has been placed on patient involvement in treatment decisions, aiding physicians in generating care plans that focus on individual preferences and priorities. Shared decision making between patients and healthcare providers has been shown to improve patients’ perceptions and quality of life throughout the continuum of care (1). Methods: The Ipsos Global Oncology Monitor is an online, multi-center medical chart review of oncology patients receiving drug therapy. 470 cancer-treating physicians in the United States were screened for seniority and caseload and submitted data on 64,124 cancer patients (aggregate; all tumour types) between January 2022 to December 2022. Data included tumor type, age, gender identity, ECOG performance score and treatments received. The level of patient involvement in care decisions was determined by sampled physicians and recorded on a scale of 1-10 (1 = low involvement, 10 = high involvement). Results: Reported patient engagement with treatment was generally high, with an average involvement score of 7.50. 45% of sampled physicians rated patient involvement as a score of 9 or higher. In comparison to the entire study pool, reported patients diagnosed with breast cancer (7.89), non-small cell lung cancer (7.66), non-Hodgkin’s lymphoma (7.85) and colorectal cancers (7.64) all had significantly higher average involvement levels (p < 0.05). In contrast, individuals diagnosed with prostate tumors or myeloma recorded ratings significantly lower than the average (7.03 and 7.44, respectively). In relation to gender identity, reported female patients were significantly more likely to be engaged with their care decisions (7.70) than their male counterparts (7.25). Additionally, ECOG performance scores and individual involvement seemed to align: patients with an ECOG score of 0 had the highest rated involvement (7.82) and as ECOG scores worsened, the average scores fell near or below the wider reported patient cohort mean. Conclusions: Results from this study highlight that reported US patient involvement in cancer treatment decisions is generally high, reinforcing the importance of joint evaluation in bettering care outcomes. However, specific patient cohorts are more likely to be highly involved than others. These discrepancies merit a more conscious effort to support patient engagement and continue improving quality of care. Further investigation using comparator cohort is warranted. https://participatorymedicine.org/journal/columns/innovations/2017/04/13/the-future-of-patient-engagement-in-the-oncology-setting-how-practical-patient-engagement-recommendations-and-innovative-inter-professional-education-can-drive-change/.

A case of acute pyelonephritis with multiple bilateral pulmonary nodules

Acute pyelonephritis, one of the most common kidney diseases, often occurs as a complication of a urinary tract infection (UTI) that has spread from the bladder to the kidneys. Pulmonary cavitary lesions can come from multiple sources, including complications from a UTI if mixed clots of bacteria travel to the lungs or from metastatic cancer. Herein we describe a case of acute pyelonephritis with cavitary pulmonary lesions in a 75-year-old woman with a recent history of UTI. Her condition deteriorated rapidly from the initial admission and required various treatments to stabilize her condition. Ultimately, the patient and her caregiver chose a relatively conservative management course while in our care. This report describes the course of treatment and the patient's and her caregiver's involvement in care decisions.

Understanding disparities in primary care patient experience.

To understand disparities in primary care patient experience. A serial cross-sectional study was conducted to understand disparities in patient experience at 2 time points (2014 and 2016). Disparities related to age, gender, neighbourhood income, and self-rated health were explored using 3 analytic approaches: stratification, logistic regression, and relative comparison across multiple demographic variables. A multisite family health team in Toronto, Ont. Patients in the family medicine practice who completed e-mail surveys in 2014 (n = 1171, 19% response rate) and 2016 (n = 1823, 15% response rate). Patient-reported access (timely access when sick, access after hours) and patient-centredness (opportunity to ask questions, involvement in care decisions, enough time with provider). Performance for all measures improved between 2014 and 2016, with the greatest absolute improvement seen in access after hours (61% in 2014; 75% in 2016). Patients residing in low-income neighbourhoods reported worse patient experiences than those in high-income neighbourhoods did, as did patients with poor versus excellent self-rated health, even after adjustment for other variables. For example, in 2016, 60% of patients residing in low-income neighbourhoods reported timely access when sick versus 70% in high-income neighbourhoods (adjusted odds ratio of 0.67, 95% CI 0.47 to 0.95); 60% of patients with poor or fair self-rated health reported timely access when sick versus 72% with excellent self-rated health (adjusted odds ratio of 0.54, 95% CI 0.35 to 0.84). Comparing across demographic groups, patients with excellent self-rated health and poor or fair self-rated health reported the best and worst experiences, respectively, for all measures. In 2016, the average disparity between subgroups was largest for access after hours. In this setting, patient experience was worse for patients in lower-income neighbourhoods and those with poor or fair self-rated health. Access after hours demonstrated the greatest overall absolute improvement but also the greatest widening of disparities.

Quality of and barriers to routine childbirth care signal functions in primary level facilities of Tigray, Northern Ethiopia: Mixed method study.

Efforts to expand access to institutional delivery alone without quality of care do not guarantee better survival. However, little evidence documents the quality of childbirth care in Ethiopia, which limits our ability to improve quality. Therefore, this study assessed the quality of and barriers to routine childbirth care signal functions during intra-partum and immediate postpartum period. A sequential explanatory mixed method study was conducted among 225 skilled birth attendants who attended 876 recently delivered women in primary level facilities. A multi stage sampling procedure was used for the quantitative phase whilst purposive sampling was used for the qualitative phase. The quantitative survey recruitment occurred in July to August 2018 and in April 2019 for the qualitative key informant interview and Focus Group Discussions (FGD). A validated quantitative tool from a previous validated measurement study was used to collect quantitative data, whereas an interview guide, informed by the literature and quantitative findings, was used to collect the qualitative data. Principal component analysis and a series of univariate and multivariate linear regression analysis were used to analyze the quantitative data. For the qualitative data, verbatim review of the data was iteratively followed by content analysis and triangulation with the quantitative results. This study showed that one out of five (20.7%, n = 181) mothers received high quality of care in primary level facilities. Primary hospitals (β = 1.27, 95% CI:0.80,1.84, p = 0.001), facilities which had staff rotation policies (β = 2.19, 95% CI:0.01,4.31, p = 0.019), maternal involvement in care decisions (β = 0.92, 95% CI:0.38,1.47, p = 0.001), facilities with maternal and newborn health quality improvement initiatives (β = 1.58, 95% CI:0.26, 3.43, p = 0.001), compassionate respectful maternity care training (β = 0.08, 95% CI: 0.07,0.88, p = 0.021), client flow for delivery (β = 0.19, 95% CI:-0.34, -0.04, p = 0.012), mentorship (β = 0.02, 95% CI:0.01, 0.78, p = 0.049), and providers' satisfaction (β = 0.16, 95% CI:0.03, 0.29, p = 0.013) were predictors of quality of care. This is complemented by qualitative research findings that poor quality of care during delivery and immediate postpartum related to: work related burnout, gap between providers' skill and knowledge, lack of enabling working environment, poor motivation scheme and issues related to retention, poor providers caring behavior, unable translate training into practice, mismatch between number of provider and facility client flow for delivery, and in availability of essential medicine and supplies. There is poor quality of childbirth care in primary level facilities of Tigray. Primary hospitals, facilities with staff rotation, maternal and newborn health quality improvement initiatives, maternal involvement in care decisions, training on compassionate respectful maternity care, mentorship, and high provider satisfaction were found to have significantly increased quality of care. However, client flow for delivery service is negatively associated with quality of care. Efforts must be made to improve the quality of care through catchment-based mentorship to increase providers' level of adherence to good practices and standards. More attention and thoughtful strategies are required to minimize providers' work-related burnout.

Perceptions of Family Caregivers of Home-Dwelling Persons with Dementia regarding Access to Information and Involvement in Decisions

ABSTRACTThis cross-sectional study explored factors affecting information about available health services, content of services provided, and involvement in decisions regarding services as perceived by the family caregivers of home-dwelling persons with dementia in Northern Norway. Altogether, 788 family caregivers were invited to participate in a survey, with a response rate of 54.6% (n = 430). The respondents reported modest levels of perceived information and involvement. Few of the expected predictors were associated with the outcomes. Ordinal logistic regression analyses revealed that primary school as the highest level of education and perception of caregiving as moderately or very demanding predicted lower scores on family caregivers’ perceived level of information about available services, information on service content, and involvement in decisions. In addition, medium household income predicted lower scores on information about service content. The results may point to mechanisms that create inequalities in the processing of information and involvement in care decisions regarding care arrangements among different caregiver groups. Health authorities should investigate potential social inequalities in complementary health care for home-dwelling persons with dementia.

Service user, carer and provider perspectives on integrated care for older people with frailty, and factors perceived to facilitate and hinder implementation: A systematic review and narrative synthesis.

IntroductionOlder people with frailty (OPF) can experience reduced quality of care and adverse outcomes due to poorly coordinated and fragmented care, making this patient population a key target group for integrated care. This systematic review explores service user, carer and provider perspectives on integrated care for OPF, and factors perceived to facilitate and hinder implementation, to draw out implications for policy, practice and research.MethodsSystematic review and narrative synthesis of qualitative studies identified from MEDLINE, CINAHL, PsycINFO and Social Sciences Citation Index, hand-searching of reference lists and citation tracking of included studies, and review of experts’ online profiles. Quality of included studies was appraised with The Critical Appraisal Skills Programme tool for qualitative research.ResultsEighteen studies were included in the synthesis. We identified four themes related to stakeholder perspectives on integrated care for OPF: different preferences for integrated care among service users, system and service organisation components, relational aspects of care and support, and stakeholder perceptions of outcomes. Service users and carers highlighted continuity of care with a professional they could trust, whereas providers emphasised improved coordination of care between providers in different care sectors as key strategies for integrated care. We identified three themes related to factors facilitating and hindering implementation: perceptions of the integrated care intervention and target population, service organisational factors and system level factors influencing implementation. Different stakeholder groups perceived the complexity of care needs of this patient population, difficulties with system navigation and access, and limited service user and carer involvement in care decisions as key factors hindering implementation. Providers mainly also highlighted other organisational and system factors perceived to facilitate and hinder implementation of integrated care for OPF.ConclusionsSimilarities and differences in lay and professional stakeholder perspectives on integrated care for OPF and factors perceived to facilitate and hinder implementation were evident. Findings highlight the importance of addressing organisational and system level components of integrated care and factors influencing implementation for OPF. Greater attention needs to be placed on collaboratively involving service users, carers and providers to improve the co-design and implementation of integrated care programmes for this patient population.

The impact of person-centred care on patients' care experiences in relation to educational level after acute coronary syndrome: secondary outcome analysis of a randomised controlled trial.

Research supporting the benefits of person-centred care is growing, still knowledge about patients' experiences of person-centred care is limited. To evaluate the effects of person-centred care on patients' experiences of care, and also in relation to educational level, after an acute coronary syndrome. A total of 199 patients aged less than 75 years, hospitalised for acute coronary syndrome, were randomly assigned to either standard cardiac care ( n=105) or person-centred care plus standard cardiac care ( n=94). Experience of care was assessed at three healthcare settings (hospital, outpatient and primary care) using the 15-item Picker patient experience questionnaire plus two questions concerning information and documentation. No significant difference was found at the three healthcare settings between the two study groups in the Picker patient experience questionnaire total score. Item level analysis showed that the person-centred care group significantly improved at all three healthcare settings on information received and in documentation of care compared with the standard cardiac care group ( P<0.05). In outpatient care, the person-centred care group reported significantly better family-physician communication ( P=0.004) and information for the family ( P=0.007) compared with the standard cardiac care group. In patients without postsecondary education, the corresponding figures were even more in favour of the person-centred care group ( P=0.0005 and P=0.0049, respectively), and they also reported higher involvement in care decisions ( P=0.023). A person-centred care approach after an event of acute coronary syndrome improves patients' care experiences for information, shared documentation and involvement of family and friends. This effect was especially prominent in patients with a low educational level, who were also more involved in care decisions. Swedish registry, Researchweb.org , ID NR 65 791.

Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies.

Parent empowerment is often an expressed goal in clinical pediatrics and in pediatric research, but the antecedents and consequences of parent empowerment are not well established. The objective of this systematic review was to synthesize potential antecedents and consequences of parent empowerment in healthcare settings. The inclusion criteria were (1) studies with results about parent empowerment in the context of children's healthcare or healthcare providers; and (2) qualitative studies, observational studies, and systematic reviews of such studies. We searched the databases of PubMed, Web of Science, and Google Scholar (2006-2017) and reference lists. Forty-four articles met the inclusion criteria. We identified six themes within consequences of empowerment: increased parent involvement in daily care, improved symptom management, enhanced informational needs and tools, increased involvement in care decisions, increased advocacy for child, and engagement in empowering others. Six themes summarizing antecedents of empowerment also emerged: parent-provider relationships, processes of care, experiences with medical care, experiences with community services, receiving informational/emotional support, and building personal capacity and narrative. We synthesized these findings into a conceptual model to guide future intervention development and evaluation. Non-English articles were excluded. Parent empowerment may enhance parent involvement in daily care and care decisions, improve child symptoms, enhance informational needs and skills, and increase advocacy and altruistic behaviors. Parent empowerment may be promoted by the parent-provider relationship and care processes, finding the right fit of medical and community services, and attention to the cognitive and emotional needs of parents. PROSPERO 2017:CRD42017059478.

Experiences of women receiving childbirth care from public health facilities in Kumasi, Ghana

Objectiveto explore women's experiences with childbirth care in Kumasi, Ghana. Designexploratory, qualitative research design using in-depth interviews and content analysis. Settingfour public health facilities in Kumasi, Ghana. Participantsfifty-six women attending either antenatal or postnatal care at the four public health facilities. Measurements and findingsindividual in-depth interviews were used to explore women's experiences with childbirth care. Mothers had both encouraging and discouraging experiences during care, which influenced their willingness to seek assisted health care during childbirth in the future. Participants who had experiences of empathetic support and continuous labour support and attention reported these to be encouraging. Other participants reported discouraging experiences such as disrespectful care and inadequate communication and involvement in care decisions. Key conclusionsWomen in our study wanted to be seen as partners in the care process and not subordinate to care providers. Implications for practiceMidwives and student midwives must be given the tools and support to deliver patient-centred childbirth care.

Lack of patient involvement in care decisions and not receiving written discharge instructions are associated with unplanned readmissions up to one year

This retrospective, cross-sectional study examined the relationship between aspects of inpatient communication and discharge instructions and unplanned, all-cause readmissions using individual-level data up to one-year post-discharge. Patients completed the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) telephone survey within 6 weeks of hospital discharge in Alberta, Canada. Survey data were linked to corresponding inpatient records. Independent variables included selected demographic characteristics, clinical variables, and five survey questions: a) patient involvement in care decisions, b) receiving written information at discharge, c) understanding the purpose of taking medications, d) understanding responsibility for one’s health, and e) discussing help needed when returning home. From April 2011 to March 2014, 24,869 patients with a mean age of 52.8±19.8 years (range=18-100) were included. 18.6% of patients (n=4,821) experienced an unplanned hospital readmission within 43 to 365 days post-discharge. In adjusted, logistic regression models, patients who felt they were not involved in care decisions were more likely to be readmitted (OR=1.34; 95%CI: 1.17-1.53), as were patients who reported not receiving written information about signs and symptoms to watch out for post-discharge (OR=1.24; 95%CI: 1.15-1.35). Odds of readmission did not differ according to understanding of medications, understanding responsibility for one’s health, or discussion of help needed when returning home. This study provides objective data, showing that specific hospital actions are associated with unplanned readmissions. It is an example of how patient-reported measures may be linked to administrative data to drive quality improvement initiatives.

Patient satisfaction and early geriatric follow-up after discharge in older acute medical patients

Objective: “Early geriatric follow-up after discharge” is a care model designed to create a safe transition from hospital to home by adding a follow-up visit in the patient’s home within 24 hours after discharge. Patient satisfaction is of major importance to evaluate health care services. Therefore, the aim of this study was to compare patient satisfaction after early geriatric follow-up with that of usual follow-up after discharge. Materials and methods: The study is a cross-sectorial quantitative questionnaire survey. The target population was 75+ years’ medical patients acutely admitted to an emergency department (ED) and enrolled in a quasi-randomized controlled trial. A 14-item satisfaction questionnaire, based on semi-structured interviews, was mailed to all cognitively well-functioning patients in both groups 2-4 weeks after discharge during three defined time periods. The themes of importance were: feeling safe, receiving sufficient information, experiencing good communication between health care professionals, involvement in care decisions, and relatives’ involvement. Each question was evaluated by a 5-point Likert scale. The patients, who did not respond within 14 days, were reminded by phone and offered assistance to fill out the questionnaire. Results: In total, 173 out of 272 patients (64%) returned their questionnaire. Baseline characteristics of the groups were similar. More patients in the intervention group (receiving early geriatric follow-up after discharge) were “satisfied with treatment and care after discharge” and were “satisfied with the continuity of care at home” compared to the patients in the control group (receiving usual follow-up). More women were non-responders than men. Conclusions: Older medical patients acutely admitted to hospital were more satisfied with early geriatric follow-up than usual follow-up after discharge.

Healthcare staffs’ experiences and perceptions of caring for people with dementia in the acute setting: Qualitative evidence synthesis

BackgroundDementia is a global issue, with increasing prevalence rates impacting on health services internationally. People with dementia are frequently admitted to hospital, an environment that may not be suited to their needs. While many initiatives have been developed to improve their care in the acute setting, there is a lack of cohesive understanding of how staff experience and perceive the care they give to people with dementia in the acute setting. ObjectivesThe aim of this qualitative synthesis was to explore health care staffs’ experiences and perceptions of caring for people with dementia in the acute setting. Qualitative synthesis can bring together isolated findings in a meaningful way that can inform policy development. SettingsA screening process, using inclusion/exclusion criteria, identified qualitative studies that focused on health care staff caring for people with dementia in acute settings. ParticipantsTwelve reports of nine studies were included for synthesis. Data extraction was conducted on each report by two researchers. MethodsFramework synthesis was employed using VIPS framework, using Values, Individualised, Perspective and Social and psychological as concepts to guide synthesis. The VIPS framework has previously been used for exploring approaches to caring for people with dementia. Quality appraisal was conducted using Critical Appraisal Skills Programme (CASP) and NVivo facilitated sensitivity analysis to ensure confidence in the findings. ResultsKey themes, derived from VIPS, included a number of specific subthemes that examined: infrastructure and care pathways, person-centred approaches to care, how the person interacts with their environment and other patients, and family involvement in care decisions. The synthesis identified barriers to appropriate care for the person with dementia. These include ineffective pathways of care, unsuitable environments, inadequate resources and staffing levels and lack of emphasis on education and training for staff caring for people with dementia. ConclusionsThis review has identified key issues in the care of people with dementia in the acute setting: improving pathways of care, creating suitable environments, addressing resources and staffing levels and placing emphasis on the education for staff caring for people with dementia. Recommendations are made for practice consideration, policy development and future research. Leadership is required to instil the values needed to care for this client group in an effective and personcentred way. Qualitative evidence synthesis can inform policy and in this case, recommends VIPS as a suitable framework for guiding decisions around care for people with dementia in acute settings.

Assessing patient experience in an outpatient multidisciplinary clinic setting.

224 Background: Cancer Treatment Centers of America (CTCA), a national network of five hospitals, implemented a new survey instrument and methodology to gather patient experience data in the outpatient setting. While borrowing many questions from its vendors’ client base, the network also added questions considered pivotal to understanding the critical dimensions of care deemed most relevant to the oncology patient. Surveying includes 100% of all patients first contacted via the U.S. mail and subsequently using e-surveys. Methods: Data is collected, with the ability to be segmented by cancer type; for medical, surgical and radiation oncologists with respect to confidence and likelihood of recommending. For each specialty, an open ended question has been added for the patient to elaborate upon his/her rating. Further, several questions have been added to reflect key dimensions of care specific to the oncology such as emotional needs, family involvement and information, sensitivity to personal difficulties associated with treatment, drawing blood and IV discomfort, and involvement in care decisions, to name a few. Results: The revised approach has resulted in greater than a 200% increase in responses, at a cost reduction, cognizant of the growing sophistication of the population served in using technology as part of the patient experience feedback process. Results at three months post-implementation have yielded the findings in the Table. Conclusions: Since implementation, not only have completed surveys increased with respect to easily accessible discrete quantitative data, qualitative information has grown exponentially. This has resulted in more meaningful and robust data around which to focus, including specialty data at the disease and provider levels. The revisions also substantially support CTCA centers’ Magnet journey, including question dimensions and unit level reporting. [Table: see text]

Filling the Gaps in a Fragmented Health Care System: Development of the Health and Welfare Information Portal (ZWIP)

BackgroundCurrent health care systems are not optimally designed to meet the needs of our aging populations. First, the fragmentation of care often results in discontinuity of care that can undermine the quality of care provided. Second, patient involvement in care decisions is not sufficiently facilitated.ObjectiveTo describe the development and the content of a program aimed at: (1) facilitating self-management and shared decision making by frail older people and informal caregivers, and (2) reducing fragmentation of care by improving collaboration among professionals involved in the care of frail older people through a combined multidisciplinary electronic health record (EHR) and personal health record (PHR).MethodsWe used intervention mapping to systematically develop our program in six consecutive steps. Throughout this development, the target populations (ie, professionals, frail older people, and informal caregivers) were involved extensively through their participation in semi-structured interviews and working groups.ResultsWe developed the Health and Welfare Information Portal (ZWIP), a personal, Internet-based conference table for multidisciplinary communication and information exchange for frail older people, their informal caregivers, and professionals. Further, we selected and developed methods for implementation of the program, which included an interdisciplinary educational course for professionals involved in the care of frail older people, and planned the evaluation of the program.ConclusionsThis paper describes the successful development and the content of the ZWIP as well as the strategies developed for its implementation. Throughout the development, representatives of future users were involved extensively. Future studies will establish the effects of the ZWIP on self-management and shared decision making by frail older people as well as on collaboration among the professionals involved.

Parent’s Perceptions of Health Care Providers Actions Around Child ICU Death

To describe parents' perspectives of health care provider actions that helped or did not around the time of infant/child's intensive care unit (ICU) death. Semistructured interviews with 63 parents (Black, White, and Hispanic) 7 months post infant/child death were audio-recorded, transcribed, analyzed, and themes identified. What helped most: compassionate, sensitive staff; understandable explanations of infant's/child's condition; experienced, competent nurses; providers did everything to help infant/child; and parents' involvement in care decisions. What did not help: insensitive, nonsupportive staff; conflict between providers and parents; communication problems around the death; inexperienced nurses and doctors; parents not understanding child's disease, care, complications. Compassionate, sensitive staff and understandable explanations of children's conditions were most helpful; insensitive, nonsupportive staff least helpful by gender, racial group, or care setting. Conflict between providers and parents was most problematic for minority parents and mothers.

Association of Patient Recognition of Inpatient Physicians with Knowledge and Satisfaction

Patient recognition of hospital providers is low and may affect patient knowledge and satisfaction with care. Our study aimed to determine the association between patient knowledge of their inpatient providers' face, name, or role with knowledge of their diagnosis, satisfaction with care, and 30-day readmission rate. We conducted a cross-sectional survey of inpatients discharged from medicine housestaff teams from 2008 to 2009. Patients identified providers by face, name, and role and stated their reason for hospitalization. The Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey assessed patient satisfaction with care. Eighty-nine of 95 patients (94%) participated. Seventy-five percent of patients recognized one provider face, 28% knew at least one provider name, and 21% correctly stated provider roles. Fifty-seven percent of patients knew their diagnosis. Satisfaction with care via HCAHPS varied: 78% always felt treated with courtesy and respect; 75% felt doctors always listened; and 67% felt complete involvement in care decisions. In bivariate and multivariate analyses, knowledge of providers by face, name, or role was not associated with knowledge of diagnosis, satisfaction, or 30-day readmission rates (all p>.05). Thus, patient recognition of providers was not associated with their knowledge, satisfaction, or readmission.

No cancer health without mental health

The clinical oncologists of all stripes have, for too long, overlooked or ignored the psychological factors that may, for all we know at present, play a surprisingly large role in individual susceptibility to neoplasia. They are certainly influential in affecting the course of treatment, the adaptation to the illness, and hence, in some ways, not all of which are yet understood, affect the outcome of treatment. Lewis Thomas in the foreword to the Handbook of Psychooncology, 1989 1 he publication of the Handbook of psychooncology, 1 later to grow into the substantial textbook Psycho-oncology, 2 heralded the beginning of the field of psychooncology. Psychological factors had long been linked with the cause or progress of much human illness, and yet were being increasingly ignored because of a lack of substantial evidence and a strengthening of the biological understanding of disease. The work represented by the publication of these volumes identified the beginning of both a clinical and research interest that continues strongly to this day. Cancer is the first field of medicine where psychosocial factors have been taken seriously. This was partly because of the potency of cytotoxic drugs and the severity of adverse effects. This led to a need to consider “quality of life”, and to balance this with gains in longevity of life. Quality of life is a subjective matter that requires consideration of complex psychosocial and relational matters and values. These cannot be measured by blood tests. In addition, cancer, more than any other disease, confronts us all with serious existential issues. It challenges the sense of control we might think we have over our lives, and raises the possibility of the purposelessness and futility of life, as well as raising questions about what is a good life and a good death. The field of psychooncology has contributed much over the years. We have seen serious attention given to communicating “bad news” to patients and to “truth telling”, maximising patients’ involvement in care decisions and maintaining dignity. Various behavioural and psychological interventions have been shown to be effective in relieving patients’ anxiety and depression. Attention has been given to the stress that carers and loved ones experience through the cancer journey, and how strained the support networks can be at times; at other times and for other people, the cancer journey can be a “growth” experience. 3 The articles in this Medical Journal of Australia supplement showcase the quality of work currently being done in this area. They range from the use of a large epidemiological survey to tease out the connections between cancer and depression, 4 to descriptions of systemic interventions of screening and psychosocial care. 5

Family Experiences With Outpatient Care: Do Adolescents and Parents Have the Same Perceptions?

Providing healthcare for adolescents involves balancing parents' and adolescents' needs, and little research addressing, measuring, and achieving this balance has been conducted. A first step for healthcare providers toward achieving this balance is to understand the differences between parents and adolescents regarding perceptions of outpatient care experiences. This study was to explore and compare the experiences of care between parents and adolescents in a primary care setting. As part of an institution-wide system to measure patient satisfaction, 170 pairs of adolescent patients aged 11-17.9 years and their parents/guardians who had an outpatient visit at a Teen Health Center located within a large pediatric hospital were interviewed by telephone using both closed- and open-ended questions. Overall, perceptions of care between adolescents and parents were very similar. However, adolescents reported less involvement in decisions about medical care and were less likely to receive understandable answers to questions. A qualitative analysis of responses to open-ended questions indicated that aspects of care important to both adolescents and parents are communication followed by interpersonal skills and technical competence. Parents and adolescents did not always view confidentiality in the same way. These findings suggest that more time should be spent focusing on the adolescents' needs concerning communication. Healthcare providers should focus on the adolescents' needs by involving them in decisions and providing understandable answers to questions. Both parents and adolescents should be surveyed to measure their experience of care, especially with respect to involvement in care decisions, communication, and confidentiality.