OBJECTIVE: Although the psychometric properties of the Family Satisfaction with End-of-Life Care measure have been examined in diverse settings internationally; little evidence exists regarding measurement equivalence in Hispanic caregivers. The aim was to examine the psychometric properties of a short-form of the FAMCARE in Hispanics using latent variable models and place information on differential item functioning (DIF) in an existing family satisfaction item bank.
METHOD: The graded form of the item response theory model was used for the analyses of DIF; sensitivity analyses were performed using a latent variable logistic regression approach. Exploratory and confirmatory factor analyses to examine dimensionality were performed within each subgroup studied. The sample included 1,834 respondents: 317 Hispanic and 1,517 non-Hispanic White caregivers of patients with Alzheimer's disease and cancer, respectively.
RESULTS: There was strong support for essential unidimensionality for both Hispanic and non-Hispanic White subgroups. Modest DIF of low magnitude and impact was observed; flagged items related to information sharing. Only 1 item was flagged with significant DIF by both a primary and sensitivity method after correction for multiple comparisons: "The way the family is included in treatment and care decisions." This item was more discriminating for the non-Hispanic, White responders than for the Hispanic subsample, and was also a more severe indicator at some levels of the trait; the Hispanic respondents located at higher satisfaction levels were more likely than White non-Hispanic respondents to report satisfaction.
SIGNIFICANCE OF RESULTS: The magnitude of DIF was below the salience threshold for all items. Evidence supported the measurement equivalence and use for cross-cultural comparisons of the short-form FAMCARE among Hispanic caregivers, including those interviewed in Spanish.
PURPOSE: The purpose of this study was to investigate the relationship between social support (from personal and workplace sources) and psychological distress (depression, anxiety, and stress symptoms), as well as to examine the mediating role of satisfaction with work-family balance among hospice nurses.
DESIGN AND METHOD: A cross-sectional study design was utilized with a sample of 90 hospice nurses from the southern United States. Participants completed online surveys, including (a) the Depression, Anxiety, and Stress Scale (DASS-21), (b) loosely adapted items from the Affectivity, Burnout, and Absenteeism Scales, and (c) Satisfaction with Work-Family Balance Scale.
FINDINGS: Workplace social support, not personal social support, was associated with lower psychological distress, and satisfaction with work-family balance mediated the relationship between workplace social support and depression symptoms, a component of psychological distress.
CONCLUSIONS: Hospice nurses' social support in the workplace and their satisfaction with the balance between their work and family lives play a role in supporting their mental health.
CLINICAL RELEVANCE: Hospice nurses may benefit from programs fostering the creation of workplace-based interpersonal relationships.
Objectif de l’étude: Un travail d’évaluation globale de la satisfaction des patients pris en charge par le réseau de soins palliatifs Ensemble a été initié entre 2014 et 2016 à travers trois études simultanées recueillant le point de vue des proches et des professionnels intervenant dans la prise en charge du patient dans une démarche d’amélioration continue de la qualité des soins. L’objectif principal de cette étude était la mise en évidence de critères de satisfaction pour lesquels des réponses significativement différentes ont été observées selon le statut du répondant aux enquêtes et qui soulignerait l’importance des regards croisés dans les études de satisfaction en soins palliatifs.
Matériel et méthode: Les taux de satisfaction pour des critères de qualités validés d’un réseau de soins palliatifs communs à deux études rétrospectives observationnelles quantitatives interrogeant les proches de patients et les professionnels de santé ont été comparés.
Résultats: Soixante-quatorze pour cent des proches et 26 % des professionnels inclus ont répondu. La comparaison des taux de satisfaction a mis en évidence des critères pour lesquels les réponses des proches et des professionnels étaient similaires et des critères plus subjectifs pour lesquels les réponses étaient significativement différentes (perception du réseau comme soutien pour l’entourage [p<0,001], vécu de choses importantes en fin de vie [p< 0,001], respect du choix du lieu de décès [p=0,007]).
Conclusion: Cette étude a mis en évidence des critères pour lesquels il semble pertinent de multiplier les points de vue dans les enquêtes de satisfaction en soins palliatifs afin d’obtenir des réponses au plus proche du vécu des patients en fin de vie.
This work aims to integrate previous research perspectives on terminal well-being decline and partner bereavement by investigating the codevelopment of life satisfaction in the years preceding the death of one partner. We analyzed longitudinal data from the German Socio-Economic Panel Study (N = 1,450 couples) and applied dyadic multilevel models to estimate both partners' trajectories of life satisfaction and to reveal the pathways of well-being transmission in couple members approaching [partner] death. Findings were compared with a propensity-score-matched control sample of couples in which neither partner died during the study. We found that to-be-deceased and to-be-bereaved partners experienced increasing disparities in their trajectories of life satisfaction in the years before [partner] death: Although both partners exhibited significant and accelerated declines in life satisfaction, these declines were more pronounced in to-be-deceased individuals. In the control sample, we also identified significant and accelerated declines in life satisfaction but these declines were less intense and they did not differ between partners. Regarding between-partner correlations, we observed that couples approaching [partner] death experienced weaker interdependencies in their declines of life satisfaction. Finally, and concerning the pathways of well-being transmission, we found that life satisfaction was significantly transmitted between partners and the strength of this effect did not differ between the samples. These findings suggest that the years before [partner] death are characterized by distinctive patterns of change and interdependence in life satisfaction. Future studies may explore the sources of increasing between-partner disparities in life satisfaction in an end-of-life relationship context.
Context: Despite the preference to pass away at home, many dementia patients die in institutions, resulting in a paucity of studies examining end-of-life care outcomes in the home setting.
Objective: To identify modifiable factors associated with the comfort of dementia patients dying at home and families’ satisfaction with care.
Methods: This is a prospective cohort study conducted from October 2014 to April 2019 in Singapore. Dementia patients at Stage 7 on the Functional Assessment Staging Scale, with albumin<35g/L, enteral feeding or pneumonia were recruited from a palliative homecare programme. Independent variables included demographics, medical information and care preferences. The Comfort Assessment in Dying with Dementia scale assessed dying patients’ comfort while the Satisfaction with Care at the End-of-Life in Dementia scale evaluated family caregivers’ satisfaction two months post-bereavement. Gamma regression identified factors independently associated with comfort and satisfaction.
Results: The median age of 202 deceased patients whose comfort was assessed was 88 years. Anti-cholinergic prescription (60.4% of patients) [ß(95% CI)=1.823(0.660 – 2.986), p=0.002] was positively associated with comfort, while opioid prescription (89.6%) [ß(95% CI)=-2.179(-4.107- -0.251), p=0.027] and >1 antibiotic courses used in the last 2 weeks of life (77.2%) [ß(95% CI)=-1.968(-3.196 – -0.740), p=0.002] were negatively associated. Independent factors associated with families’ satisfaction with care were comfort [ß(95% CI)=0.149(0.012 – 0.286), p=0.033] and honouring of medical intervention preferences (96.0%) [ß(95% CI)=3.969(1.485 – 6.453), p=0.002].
Conclusion: Achieving comfort and satisfaction with care for dementia patients dying at home involves an interplay of modifiable factors. Honouring medical intervention preferences, such as those with palliative intent associated with patients’ comfort determined families’ satisfaction with care.
A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver’s suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.
OBJECTIVES: To determine the satisfaction of relatives of deceased patients with the care received in a palliative care unit (PCU) and compare it with cases in which a team with specific psychological care were not involved.
MATERIAL AND METHODS: An anonymous survey (n=202) was administered to the relatives (response rate, 42.1%), which evaluated 9 issues related to the process of dying and the overall assessment of the care.
RESULTS: The overall satisfaction was high (mean score of 9.22); the score for the full team was 9.40, while that of the team without the psychologist was 8.40 (P=.005). The items that scored highest were "team availability", "information received" and "assistance for facing the disease", followed by "pain control", "peaceful death", "assistance for patient-family communication", "grief support" and "quality of life".
CONCLUSIONS: Based on the relatives' assessment, the hospital PCU teams help increase the quality of care at the end of life.
BACKGROUND: Many hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient's hospitalization.
OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults.
DESIGN: Observational study at three hospitals in a Midwest metropolitan area.
PARTICIPANTS: Hospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study.
MAIN MEASURES: Communication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4-6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems).
KEY RESULTS: The mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate–severe anxiety); 29% reported depression, (14.0% moderate–severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001).
CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.
Several studies have highlighted the significant role of families in end-of-life care. Carers' well-being may depend on how they experience the care and support provided to their loved ones. This study was conducted to investigate family caregivers' assessment of specialized end-of-life care in a sample of 119 close family members in Iceland. The response rate was 58.8% (n = 70). Furthermore, the aim was to assess the psychometric characteristics of the Icelandic version of Family Assessment of Treatment at the End of Life (FATE). Descriptive statistics were used to describe the characteristics of the data. Results indicate that good communication and understanding of all parties concerned are the foundation for family caregivers' satisfaction with end-of-life care. Participants were generally satisfied with the care provided, whereas some important aspects of care were rated as excellent. Evaluation of management of symptoms reported in this study should be given specific attention in future studies considering its unsatisfactory outcomes. Nurses need to be aware of the impact that physical suffering of the patient might have on the family caregivers. The Icelandic version of the Family Assessment of Treatment at the End of Life instrument is a psychometrically sound instrument useful for measuring caregivers' satisfaction with service provided at the end of life, although modifications would improve the instrument for use on this population.
Job satisfaction among hospice and palliative nurses is important as turnover and a dissatisfied workforce impact the work environment and the care provided to seriously ill patients and their families. This article reports the results of a nationwide survey of 633 hospice and palliative nurses evaluating job satisfaction, intent to leave, job stressors, suggested work improvements, and self-care strategies. Statistically significant correlations were found between the Home Healthcare Job Satisfaction Scale and subscales and the individual’s self-rating of overall job satisfaction, likelihood of leaving the job, and thoughts of quitting. Multiple regression revealed a significant positive association between salary and overall job satisfaction, relationship with the organization, professional pride, autonomy, and control. A grounded theory approach was utilized to analyze qualitative data. Top job stressors identified were workload and problems with administration. Physical activities were cited as the most popular for self-care. Results indicate that most participants were highly satisfied with their work, but almost half think of quitting some or all of the time, indicating dissatisfaction with the work environment. Respondents suggested that employers increase recognition and salary, create a more positive work environment, decrease workload, and focus on patient needs rather than profits.
OBJECTIVE: How do caregivers' life satisfaction shift upon the recovery of an ill spouse? Paradoxically, there is a greater increase in life satisfaction upon death than recovery of a spouse. Our analysis explores this paradox.
METHOD: We follow the two groups of exiting caregivers longitudinally for four years from when the partner is still in need of care until the death (N= 152) or recovery (N= 112) of a previously ill partner, comparing their trajectory of life satisfaction. We use the years 2001-2016 of the German-Socio-Economic Panel Study and a growth-curve analysis.
RESULTS: Contrary to our expectations, bereaved caregivers experience a significantly stronger increase in life satisfaction than spouses whose partners recover from a serious illness, even when we stratify by age, gender and initial life satisfaction to account for significantly different subsample composition. Surprisingly, life satisfaction remains unchanged when the partner recovers. Only if a heavy burden in terms of unpaid care and housework hours or prior care need is lifted, do we observe an increase in life satisfaction among spouses with recovering partners, which is like the one experienced by bereaved caregivers.
OBJECTIVES: To explore the expressions of gratitude (EoG) received from patients and relatives and their influence on palliative care professionals (PCPs).
METHODS: A national online survey was sent to a representative of PCPs of each service listed in the national directory of palliative care (PC) services (n=272) (ie, hospital PC support team, hospice, paediatrics, etc). The questionnaire was pilot tested with experts. It comprised three sections: the overall perspective of receiving gratitude in the service, the personal experience of its influence and sociodemographic questions. A mailing schedule was designed to enhance the response rate.
RESULTS: 186 representatives from all over Spain completed the questionnaire (68% response rate). 79% of service representatives reported that they almost always received EoG. These came mainly from families (93%). These EoG were very often put on display (84%) and shared with other health professionals (HPs) involved in care (45%). EoG evoked positive feelings in the team members. Based on their experience, respondents attributed different functions to these EoG: increased professional satisfaction (89%), a source of support in difficult times (89%), mood improvement, encouragement to continue and rewards for effort (88%). Services, where gratitude was more frequently received, were associated with PCPs who more frequently reported being proud of their work (p=0.039, Pearson's correlation test).
CONCLUSIONS: Gratitude from patients and relatives was frequent and significant to those who work in PC. HPs considered that EoG offer multiple beneficial effects and also a protective role in their practice against distress and an increase in resilience skills.
PURPOSE: Oncologists cope with unique work characteristics that increase their risk of developing compassion fatigue-that is, burnout and secondary traumatic stress-and can result in reduced capacity and interest in being empathetic to the suffering of others (Stamm B. The concise ProQOL manual, 2010). At the same time, oncologists can experience compassion satisfaction-that is, the positive aspects of caring. This study explored the associations of compassion fatigue and compassion satisfaction with oncologists' grief and sense of failure beyond their reported exposure to suffering and death.
METHODS: Seventy-four oncologists completed self-administered questionnaires examining compassion fatigue, compassion satisfaction, grief, exposure to suffering and death, and sense of failure.
RESULTS: The oncologists reported that they face the loss of approximately 50% of their patients, and that their patients suffer from profound emotional and physical pain. High levels of compassion fatigue and grief, and moderate levels of sense of failure, were reported. Findings showed a lack of association between exposure to suffering and death and compassion fatigue and satisfaction. However, grief and sense of failure were found to predict both aspects of compassion fatigue: secondary traumatic stress (p < 0.001, p < 0.003, respectively) and burnout (p < 0.002, p < 0.025, respectively).
CONCLUSIONS: These results highlight the importance of the oncologists' subjective experiences of grief and sense of failure, beyond their reports of exposure to suffering and death, in terms of their levels of compassion fatigue. Implications of these findings include the need to develop interventions for oncologists that will allow them to acknowledge, process, and overcome negative experiences of failure and grief.
BACKGROUND: Early and integrated specialized palliative care is often recommended but has still only been investigated in relatively few randomized clinical trials.
OBJECTIVE: To investigate the effect of early specialized palliative care plus standard care versus standard care on the explorative outcomes in the Danish Palliative Care Trial (DanPaCT).
METHODS: We conducted a randomized multicentre, parallel-group clinical trial. Consecutive patients with metastatic cancer were included if they had symptoms or problems that exceeded a predefined threshold according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Outcomes were estimated as the differences between the intervention and the control groups in the change from baseline to the weighted mean of the 3- and 8-week follow-ups measured as areas under the curve.
RESULTS: In total, 145 patients were randomized to early specialized palliative care plus standard care versus 152 to standard care only. Early specialized palliative care had no significant effect on any of the symptoms or problems. Of the 21 items addressing satisfaction, specialized palliative care improved the item ‘overall satisfaction with the help received from the health care system’ with 9 points (95% confidence interval 3.8 to 14.2, p = 0.0006) and three other items (all p < 0.05).
CONCLUSION: In line with the analyses of the primary and secondary outcomes in DanPaCT, we did not find that specialized palliative care, as provided in DanPaCT, affected symptoms and problems. However, patients in the intervention group seemed more satisfied with the health care received than those in the standard care group.
TRIAL REGISTRATION: NCT01348048.
INTRODUCTION: The analysis of patients' satisfaction with healthcare is recognised as being useful in the evaluation of health outcomes and perceived quality of care. Little is known, however, about how the psychological status of women who experience perinatal complications may affect their perceived satisfaction with care.
METHODS: We assessed healthcare satisfaction in 52 women who had undergone intrauterine surgery during a complicated monochorionic twin pregnancy and examined the influence that fetal loss and sociodemographic, clinical, and psychological factors had on the degree of satisfaction. Data were gathered in an individual interview and through the administration of the Medical Patient Satisfaction Questionnaire, Beck Depression Inventory, and State-Trait Anxiety Inventory. Relationships between variables were analysed using a chi-square test, Spearman's rho, Student's t test, and the Mann-Whitney U test, in accordance with the metric nature of the variables and the assumptions fulfilled.
RESULTS: Age and level of education were not associated with the degree of healthcare satisfaction. Negative but non-significant correlations were observed between the level of satisfaction and symptoms of anxiety and depression. Satisfaction with healthcare was high in the sample as a whole, although it was significantly higher among women who had not experienced fetal loss. There were no differences in satisfaction with services involving direct contact with medical staff, whereas satisfaction with indirect services was lower among women who had experienced perinatal loss.
CONCLUSIONS: Due to the unique characteristics of this population, specialised care teams of both professional healthcare and indirect services are needed. Although administrative aspects of healthcare are regarded as being of secondary importance, this may not be the case with more vulnerable populations.
Période de vulnérabilité, la fin de vie est marquée par une appétence relationnelle des malades, qui concerne l’entourage, les soignants mais aussi éventuellement un animal, celui du malade ou inscrit dans un projet de service de médiation animale. Un tel projet a été mis en place au sein de l’unité de soins palliatifs, dont l’un des volets est relatif à la présence d’un chat résident permanent de l’unité. L’impact de sa présence a été étudié par un questionnaire de satisfaction auprès des patients et des familles. Trente-six questionnaires sur une période de trois mois ont été étudiés. Les résultats montrent que la chatte a fréquenté presque toutes les chambres et circulé dans les parties communes. Patients et entourage ont des eu interactions avec elle, sous forme de caresses. Elle a apporté distraction, détente et réconfort pour plus de la moitié des personnes interrogées, et dans une moindre mesure diminution de l’anxiété. La satisfaction globale a été majeure : 84,4 % des personnes ont estimé la présence de la chatte très satisfaisante et 15,6 % satisfaisante. Les limites étaient notamment la faiblesse de l’échantillon et la brièveté de la période d’étude. D’autres items auraient pu être étudiés : impact sur l’humeur, la fatigue, l’appétit, la perception de l’état de santé. L’impact sur les soignants serait une autre piste de réflexion.
Background: Care teams are increasingly expected to attend to the needs of patient's personal caregivers (e.g., family members). Improving communication among oncologists, patients with advanced cancer, and their personal caregivers might enhance caregivers' experiences of end-of-life (EoL) cancer care and bereavement outcomes.
Objective: To explore the effects of the Values and Options in Cancer Care intervention on caregivers' experiences of EoL care and bereavement outcomes.
Design: We developed a brief behavioral intervention to improve communication among oncologists, patients with advanced cancer, and their personal caregivers. The intervention was designed to help patients/caregivers ask questions, express concerns, and help oncologists respond effectively. We randomly assigned oncologists (and their patients/caregivers) to the intervention or usual care.
Setting/Subjects: Medical oncologists in NY and CA; patients/personal caregivers with advanced cancer.
Measurements: Two months after the patient's death, caregivers completed three instruments assessing their experiences of EoL care. Seven months after the patient's death, caregivers completed the Prolonged Grief Disorder-13 (PG-13; primary prespecified outcome), the Purpose-in-Life scale, and scales assessing mental health function, depression, and anxiety.
Results: The intervention did not significantly improve caregivers' scores on the PG-13 (p = 0.21), mental health function, depression, or anxiety, but it did improve purpose-in-life scores (p = 0.018). Cohen's d (95% confidence interval) for all three experiences of EoL care outcomes were promising, ranging from 0.22 (-0.19 to 0.63) to 0.39 (-0.07 to 0.86) although none was statistically significant.
Conclusion: Preliminary findings show promise that scalable interventions in cancer care settings may improve caregiver experiences with cancer care and some bereavement outcomes.
Objective: In the emotionally intense field of healthcare, the ability to peacefully inhabit one's body, maintain good boundaries, and be fully present during care is essential. This study aimed to validate the recently developed Mindful Self-Care Scale (MSCS) among hospice and healthcare professionals and develop a brief version of the 33-item MSCS.
Method: A sample of hospice and healthcare professionals from all 50 states (n = 858) was used. A confirmatory factor analysis was run using a rigorous methodology for validation and item reduction to develop a brief version of the 33-item MSCS. The brief MSCS (B-MSCS) was developed by identifying items for exclusion through examination of conceptual overlap, descriptive statistics by detecting sources of improvement model fit using confirmatory factor analysis. Model modifications were done sequentially and with regard to theoretical considerations.ResultThe existing model, 33-item MSCS with six subscales, had good fit to the data with all indicators in acceptable ranges (chi-square/df = 3.08, df (480), p < 0.01, root mean square error of approximation = 0.059, comparative fit index = 0.915, Tucker and Lewis's index of fit = 0.907). Nine items were excluded on the basis of very low loadings and conceptual and empirical overlap with other items.
Significance of results: The final 24-item, B-MSCS model was consistent with the original conceptual model and had a closer fit to the data (chi-square/df = 1.85, df (215), p < 0.01, root mean square error of approximation = 0.041, comparative fit index = 0.961, Tucker and Lewis's index of fit = 0.955). In addition, the reliability, construct, and concurrent validity of the MSCS and B-MSCS were in the acceptable and good ranges, respectively. Mean and standard deviation of the MSCS and B-MSCS scores were similar; B-MSCS mean scores well approximated the MSCS scores. Informal mindful self-care, in the process of everyday life, was practiced more regularly and associated with increased wellness and reduced burnout risk than formal mind-body practices.
Objective To examine the association of the use of hospice care on patient experience and outcomes of care. Promoting high-value, safe and effective care is an international healthcare imperative. However, the extent to which hospice care may improve the value of care is not well characterised.
Methods A secondary analysis of variations in care was conducted using the Dartmouth Atlas Report, matched to the American Hospital Association Annual Survey Database to abstract organisational characteristics for 236 US hospitals to examine the relationship between hospice usage and a number of variables that represent care value, including hospital care intensity index, hospital deaths, intensive care unit (ICU) deaths, patient satisfaction and a number of patient quality indicators. Structural equation modelling was used to demonstrate the effect of hospice use on patient experience, clinical and efficiency outcomes.
Results Hospice admissions in the last 6 months of life were correlated with a number of variables, including increases in patient satisfaction ratings (r=0.448, p=0.01) and better pain control (r=0.491, p=0.01), and reductions in hospital days (r=-0.517, p=0.01), fewer hospital deaths (r=-0.842, p=0.01) and fewer deaths occurring with an ICU admission during hospitalisation (r=-0.358, p=0.01). The structural equation model identified that use of hospice care was inversely related to hospital mortality (-0.885) and ICU mortality (-0.457).
Conclusions The results of this investigation demonstrate that greater use of hospice care during the last 6 months of life is associated with improved patient experience, including satisfaction and pain control, as well as clinical outcomes of care, including decreased ICU and hospital mortality..
Background: In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users' expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design.
Methods: Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically.
Results: Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients' experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions.
Conclusions: Questionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision.