Palliative Home Care Patients Research Articles

Exploring patient perspectives on electronic patient-reported outcome measures in home-based cancer palliative care: A qualitative study.

Electronic patient-reported outcomes (ePROMs) enhance symptom management and patients' engagement in palliative cancer care. However, integrating them into this setting brings challenges, including patients' familiarity with technological devices and declining health status. Prioritizing the patient's acceptability and feasibility is crucial for their adoption. However, more knowledge is needed about patients' perspectives on the adoption of ePROMs in the community, especially for home-based palliative care. Explore patient viewpoints on utilizing ePROMs for symptom reporting in home-based oncology palliative care. A qualitative interpretative approach was used to evaluate patients' points of view on using ePROMs in this specific care setting. Semistructured interviews were carried out. Data were analyzed using a reflexive thematic analysis. A total of 25 patients receiving oncological home palliative care from the advanced palliative care unit of the Fondazione IRCCS Istituto Nazionale dei Tumori in Milan, Italy, were invited to participate. Twenty interviews were conducted, as five patients declined due to deteriorating health. Four themes were identified: (1) strategic value of ePROMs and subjective appreciation; (2) enhancing patient centeredness through ePROMs; (3) exploring and addressing concerns about the use of ePROMs and (4) intersecting factors influencing the efficacy of ePROMs. Despite initial reticence, home palliative care patients consider ePROMs as potentially valuable allies monitoring symptoms, enhancing their quality of life, and amplifying their voices on less explored aspects of care. Continuous dialog between healthcare professionals and patients is crucial for addressing patient skepticism about ePROMs and their impact on the human aspect of care.

Psychosocial Well-Being of Siblings of Pediatric Patients in Palliative Home Care.

Despite the proposed high burden of siblings of children and adolescents with life-limiting conditions receiving pediatric palliative care (PPC) at home, little is known about their psychosocial well-being. In this prospective, cross-sectional trial siblings of patients of a large pediatric palliative home care team were asked to answer the KINDL survey of health-related quality of life, the strengths and difficulties questionnaire (SDQ) to assess problems and resources of children and adolescents as well as the LARES questionnaire, a potential tool for early screening of distress in siblings of chronically ill children. The results of the KINDL total and subdomains as well of the SDQ-subdomains were compared to recent German normative data using multiple t-tests. In total, 44 siblings (28 female; age 7-18 years, mean 11.8 ± 3.03) of 29 families participated in this study. The subgroup which matches the age range of current normative data of 11-17 years old siblings (n=25) reported a significant lower total quality of life as measured by KINDL in comparison to normative data. Subscale analyses revealed a significant lower physical and psychological well-being and self-esteem. Siblings of PPC patients yielded significant higher scores in the subdomain prosocial behavior compared to normative data as measured by the SDQ. Siblings of children receiving PPC in a home care setting are at risk for a relevant impairment of their health-related quality of life. Future studies should address the potential for possible interventions specific for this population-at-risk.

Are Surprise Questions and Probabilistic Questions by Nurses Useful in Home Palliative Care? A Prospective Study.

Background: Surprise questions (SQs) are used as screening tools in palliative care. Probabilistic questions (PQs) are more accurate than temporal predictions. However, no study has examined the usefulness of SQs and PQs assessed by nurses. Objectives: To examine the accuracy of nurses' SQ and PQ assessments in patients with advanced cancer receiving home palliative care. Design: A prospective single-center cohort study. Setting/Subjects: Adult patients with advanced cancer who received palliative care at home in South Korea between 2019 and 2020. Measurements: Palliative care specialized nurses were asked the SQ, "Would you be surprised if the patient died in a specific timeframe?" and PQ, "What is the probability that this patient will be alive (0 to 100%) within a specific timeframe?" at the 1-, 2-, 4-, and 6-week timeframes at enrollment. We calculated the sensitivities and specificities of the SQs and PQs. Results: 81 patients were recruited with 47days of median survival. The sensitivity, specificity, and overall accuracy (OA) of the 1-week SQ were 50.0, 93.2, and 88.9%, respectively. The accuracies for the 1-week PQ were 12.5, 100.0, and 91.3%, respectively. The 6-week SQ showed sensitivity, specificity, and OA of 84.6, 42.9, and 62.9%, respectively; the accuracies for the 6-week PQ were 59.0, 66.7, and 63.0%, respectively.Conclusion: The SQ and PQ showed acceptable accuracy in home palliative care patients. Interestingly, PQ showed higher specificity than SQ at all timeframes. The SQ and PQ assessed by nurses may be useful in providing additional prognostic information for home palliative care.

Out-of-pocket costs burden for cancer treatment toxicities and symptoms management in Italy: A prospective, multicenter pilot study.

12105 Background: Financial Toxicity (FT) refers to the financial burden and stress experienced by cancer patients as a result of the high costs associated with their treatment and care. This burden can significantly impact patients and families, affecting not only their financial well-being but also their physical and mental health. With the increasing cost of cancer care, FT has become a primary concern for those affected by the disease. Although there have been plenty of studies on the cost of cancer drugs and policy issues relating to curbing these increasing costs, studies on addressing FT in individual patients for drug-related toxicity and symptom management are still lacking. Methods: From January to October 2022, we conducted a cross-sectional, descriptive study to identify patient-administered drugs used to manage cancer treatment toxicities or cancer-associated symptoms. We recognize six common symptoms (anorexia/cachexia, fatigue, nausea and vomiting, pain, constipation, and diarrhea). All social and demographic data, including information on gender, age, performance status, education, and income, have been gathered and recorded. We collected information about the type of cancer disease and active treatment (on/off). Symptom assessment and financial distress were analyzed by administering the PERSONS and COST questionnaires, respectively, at the time of enrollment. Results: A total of 211 patients were enrolled and completed the questionnaires. 28/211 patients (13%) do not take any medications to control symptoms. Of the remaining 183 taking at least one prescription for managing these symptoms, 90% (165) pay for at least part of these drugs. Most frequently, patients assumed medicines for controlling pain (45%) and constipation (28%). Unlike all the other drug categories, these medicines correlate with financial distress (p > 0.0001 and p > 0.001). None of the following variables (age, type of tumor, and work situation) significantly interacted with COST and PERSONS at the univariate analyses. In contrast, a lower level of education significantly associates with the worst COST and PERSONS scores (p > 0.0001). As expected, patients in palliative home care have a higher mean score for symptom burden than those without home care and, surprisingly, a higher financial distress score. Conclusions: Our results identify cancer pain and constipation as the most incident and challenging problems associated with cancer diagnosis and treatment. Moreover, they ultimately lead to a higher financial hardship due to patient self-prescribing and out-of-pocket purchases of over-the-counter drugs to control them. In our population, a lower education level is an independent risk factor for developing financial distress.

Comfort or discomfort for patients in palliative home care? – a pilot study

Abstract Introduction. Ensuring comfort in patients in palliative home care is a difficult task. Care, in which patient’s comfort is fundamental, was fi rst introduced by Katharine Kolcaba. Aim. Assessing comfort levels of patients in palliative home care, including selected determinants of this condition. Material and methods. The study included 55 palliative care patients in home settings, receiving services provided by the home palliative care team and a group of 63 informal caregivers providing home care. A pilot study, by diagnostic survey, using a survey questionnaire with the PAPI technique was conducted among patients in palliative care treated in home-based settings in the fi rst half of 2022. Results. There was a statistically signifi cant relationship between satisfaction with care, and the level of comfort provided (p<0.05). Those who strongly indicated satisfaction were characterized by signifi cantly higher levels of comfort provided (M=35.43; SD=5.32 vs. M=33.38; SD=4.63), compared to other patients. Conclusions. There is a correlation between the level of comfort perceived by patients, and methods of providing comfort to patients in home settings used by informal caregivers. Individuals, who are characterized by a higher feeling of comfort provision, at the same time achieve higher degree of comfort provided by the caregiver.

Measurement equivalence of the paper-based and electronic version of the Integrated Palliative care Outcome Scale (IPOS): A randomised crossover trial

Background: The Integrated Palliative Care Outcome Scale (IPOS) validly and reliably measures symptoms and concerns of those receiving palliative care. Aim: To determine the equivalence of the paper version with an electronic version of the IPOS (eIPOS). Design: Multicentre randomised crossover trial (NCT03879668) with a within-subject comparison of the two modes (washout period 30 min). Setting/Participants: Convenience sample of specialist inpatient and palliative home care patients aged over 18 years with cancer and non-cancer conditions was recruited. Scores were compared using intraclass correlation coefficients (ICC), Bland-Altman plots and via a mixed-effects analysis of variance. Results: Fifty patients were randomised to complete paper-electronic (n = 24) and electronic-paper (n = 26) IPOS with median age 69 years (range 24–95), 56% male, 16% non-cancer. The ICCs showed very high concordance for the total score (ICC 0.99, 95% CI 0.98–1.00), lowest ICCs being observed for symptoms ‘Appetite loss’ and ‘Drowsiness’ (ICC 0.95, 95% CI 0.92–0.97). Nine of seventeen items had ICCs above 0.98, as did all subscales. No statistically significant mode, order, age, and interaction effects were observed for IPOS total score and subscales, except for ‘Communication’ (Fmode = 5.9, p = 0.019). Fifty-eight percent preferred the electronic version. In the group 75+ years, 53% preferred the paper version. Only three entries in the free-text main problems differed between the versions. Conclusion: The very high equivalence in scores and free text between the IPOS and the eIPOS demonstrates that eIPOS is feasible and reliable in an older palliative population.

GPs’ involvement in specialised palliative home care: A mixed methods study in Germany

Background General practitioners (GPs) are important providers of palliative home care (PHC). To deliver adequate palliative care, cooperation with specialised PHC teams is necessary. Specialised PHC is a type of care for severely ill patients by specialised providers. Little is known about the involvement of German GPs in specialised PHC. Objectives To analyse GPs’ experience with realised and desired involvement in specialised PHC. Realised involvement means GPs took part in specialised PHC patients’ care. Desired involvement is GPs’ hoped-for cooperation with specialised PHC teams: GPs could state whether they want to stay involved, be informed, or provide medical services themselves after referral to specialised PHC. Methods Mixed methods design (focus group with 6 GPs; survey of 445 GPs in North Rhine, Germany, about their experiences in PHC/specialised PHC): Qualitative data was interpreted using content analysis. The authors developed a questionnaire and performed descriptive analysis based on qualitative results. Results GPs are mostly satisfied with specialised PHC teams’ care, although they report cooperation is not always optimal. GPs describe a high satisfaction with quality of care by specialised PHC teams. However, physicians with higher PC knowledge are less satisfied with specialised PHC. Also, GPs are often less involved in specialised PHC than they wish, especially when they have a higher PC qualification. Conclusion In general, GPs are satisfied with the quality of care provided by specialised PHC teams but GPs do not always perceive cooperation as optimal. Involvement of GPs in specialised PHC needs to be improved.

Pain problem in patients in palliative home care

Aim of the study: The aim of the study is to determine the intensity and nature of pain and treatment methods, as well as to assess the patient's sense of comfort in palliative care in the home environment. Material and methods: Research using the diagnostic survey method, using the PAPI (Paper & Pen Personal Interview) technique, was carried out among patients in palliative care provided by the home care team in March and April 2022. The study included 55 palliative patients under the care of the home palliative care team in the following cities: Warszawa, Kraków, Sosnowiec and the poviats of Stalowa Wola, Tarnobrzeg and Sandomierz. Results: Of the 55 patients studied, the majority of 50.9% (n = 28) were men. The vast majority of 90.9% (n = 50) of people replied that pain was present, but patients were taking pain medications. Pain in the majority of patients, 65.5% (n = 36), it was felt at any time during the day. On the NRS scale, pain intensity ranging from 4 to 7 points was assessed by 61.8% of patients. Among the symptoms associated with pain, patients indicated the following as very severe: fatigue and weariness (63.6%), drowsiness (41.8%), nervousness (40.0%), depression (38.2%), difficulty concentrating (32.7%), lack of energy, weakness (30.9%), worry (36.4%), apathy (36.4%), dry mouth (34.5%). The average result on the comfort scale in the group of patients is M = 34.50; SD = 5.04. There was a statistically significant correlation between satisfaction with care and the level of perceived comfort (p = 0.014). Conclusions: In the group of palliative patients treated at home, "pain" is one of their main ailments. Most patients take painkillers to reduce or completely eliminate the pain. However, the symptoms associated with it remain. Patients who strongly indicated satisfaction with care had a significantly higher level of comfort compared to other patients

A Comparison of the Survival, Place of Death, and Medical Utilization of Terminal Patients Receiving Hospital-Based and Community-Based Palliative Home Care: A Retrospective and Propensity Score Matching Cohort Study.

Evidence shows that community-based palliative home care (PHC) provision enhances continuous care and improves patient outcomes. This study compared patient survival, place of death, and medical utilization in community- versus hospital-based PHC. A retrospective cohort study was conducted of patients aged over 18 referred to either community- or hospital-based PHC from May to December 2018 at a tertiary hospital and surrounding communities in Southern Taiwan. A descriptive analysis, Chi-square test, t-test, and Log-rank test were used for the data analysis of 131 hospital-based PHC patients and 43 community-based PHC patients, with 42 paired patient datasets analyzed after propensity score matching. More nurse visits (p = 0.02), fewer emergency-room visits (p = 0.01), and a shorter waiting time to access PHC (p = 0.02) were found in the community group. There was no difference in the duration of survival and hospitalization between groups. Most hospital-based patients (57%) died in hospice wards, while most community-based patients died at home (52%). Community-based PHC is comparable to hospital-based PHC in Taiwan. Although it has fewer staffing and training requirements, it is an alternative for terminal patients to meet the growing end-of-life care demand.

Poster Presentation

Poster Presentation

Palliative home care patients’ emergency department visits near end of life: decision making and outcomes

Introduction & Aims 
 Some palliative patients have one or multiple ED visits near their end of life. People who stay home are more likely to die at home or in hospice compared to those admitted to acute care. This study was to describe decisions and outcomes of palliative home care patients who go to Emergency (ED) within the last 6 weeks of life in one metropolitan zone of Alberta Health Services.
 Description 
 In the 2017-2018 fiscal year, there were 1874 palliative home care patients in the Edmonton Zone, of whom 646 (34.4 %) patients went to ED in the last 6 weeks of life. Of these, home care and emergency charts were reviewed for 194 deceased patients, selected by CTAS score, urban and suburban/rural, and unusual events: died in the ED, left the ED, admitted to critical care.
 Key Findings Patients who went to ED were more likely to be male (59%) and older than 65 years (65 %). Most had cancer as a primary diagnosis (82.6%). More than 50 % went to ED more than once. For the majority (74.3%), the final ED visit was within 2 weeks of death; almost half were within 7 days (49.2%). Primary presenting concerns were pain (24.9%) and dyspnea (21.5%). There was no known goal of care reported or documented in either chart for 28.2%. In ED 85% had documentation that their goals or wishes for care were reviewed or discussed, of whom 9% had their first order written and 47.8% had their order changed to align care with their wishes and illness. 44.6% spent 8 hours or less in ED; 21 patients died in the ED. Most patients (73.8%) identified a preference to die at home or hospice; some wishes were unknown (7.2 %), others had not been discussed (17%); 77.5% died in hospital.
 Conclusions and Implications
 This study highlights the ongoing opportunity to meet palliative care needs, including communication and collaboration between ED and home care. Some patients presented urgently to home care near end of life; others were diagnosed in ED and then referred. Additional anticipatory guidance may benefit those who present to the ED near end of life but prefer to die at home or hospice.

Patients' Experiences of Telehealth in Palliative Home Care: Scoping Review.

BackgroundTelehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care.ObjectiveThe aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care.MethodsA scoping review was conducted using the methodological framework of Arksey and O’Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data.ResultsThe review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home.ConclusionsThe use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.

Complementary Therapy in Home Palliative Care Patients and Their Caregivers

Complementary Therapy in Home Palliative Care Patients and Their Caregivers

Community Palliative Care Initiatives to Reduce End-of-Life Hospital Utilization and In-Hospital Deaths: A Population-Based Observational Study Evaluating Two Home Care Interventions

ContextThe end-of-life period is characterized by increased hospital utilization despite patients' preferences to receive care and die at home. ObjectivesTo evaluate the impact of interventions aimed at planning for a home death (Yellow Folder) and managing symptoms in the home (Symptom Response Kit) on place of death and hospital utilization among palliative home care patients. MethodsThis was an ecologic and retrospective cohort study of palliative home care patients in southeastern Ontario from April 2009 to March 2014. Linked health administrative and clinical databases were used to identify palliative home care patients and their receipt of the interventions, hospitalizations, emergency department visits, and place of death. Bivariable and multivariable regressions were used to evaluate outcomes according to patients' receipt of intervention(s). ResultsThe proportion of patients who died in the community increased after implementation of the interventions, from 42.8% to 48.5% (P < 0.0001). Compared with patients who received neither intervention, patients who received the Yellow Folder or Symptom Response Kit had an increased likelihood of dying in the community, with the largest relative risk observed in patients who received both interventions (relative risk = 2.20, 95% confidence interval 2.05–2.36). Receipt of these interventions was only associated with reductions in hospitalization or emergency department visit rates in the six months before death. ConclusionPatients who received the Yellow Folder or Symptom Response Kit were more likely remain at home at the end of life. This association was stronger when these interventions were used together.

Life situation and participation as experienced by adult patients in palliative home care

Background: Many patients are currently cared for at the end-of-life stage at home, and the number is expected to increase. The patient’s participation is a prerequisite for good care, which also r ...

Prevalence, incidence and associated factors of pressure ulcers in home palliative care patients: A retrospective chart review

Background: Terminally ill patients are at high risk of pressure ulcers, which have a negative impact on quality of life. Data about pressure ulcers’ prevalence, incidence and associated factors are largely insufficient. Aim: To document the point prevalence at admission and the cumulative incidence of pressure ulcers in terminally ill patients admitted to an Italian home palliative care unit, and to analyse the patients’ and caregivers’ characteristics associated with their occurrence. Design: Retrospective chart review. Setting/participants: Patients (n = 574) with a life expectancy ⩽6 months admitted to a palliative home care service were included in this study. Results: The prevalence and incidence rates were 13.1% and 13.0%, respectively. The logistic regression models showed body mass index (p < 0.001), Braden score at risk (p < 0.001), Karnofsky Performance Scale index <30 (p < 0.001), patients’ female gender, patients’ age >70 and >1 caregiver at home as the dichotomous variables predictors of presenting with a pressure ulcer at time of admission and during home palliative care. Conclusion: The notable pressure ulcers’ incidence and prevalence rates suggest the need to include this issue among the main outcomes to pursue during home palliative care. The accuracy of body mass index, Braden Scale and Karnofsky Performance Scale in predicting the pressure ulcers risk is confirmed. Therefore, they appear as essential tools, in combination with nurses’ clinical judgment, for a structured approach to pressure ulcers prevention. Further research is needed to explore the home caregivers’ characteristics and attitudes associated with the occurrence of pressure ulcers and the relations between their strategies for pressure ulcer prevention and gender-related patient’s needs.

Do Symptoms among Home Palliative Care Patients with Advanced Cancer Decide the Place of Death? Focusing on the Presence or Absence of Symptoms during Home Care.

Our goal was to investigate the association between actual place of death among Japanese home end-of-life care patients with advanced cancer and individual, illness, and environmental factors, including the presence or absence of symptoms. Using structured interviews, we asked 44 nurses from 19 home-visit nursing agencies about changes in status of all 123 of their home end-of-life care patients with advanced cancer between April and September 2013. The main outcome variable was actual place of death (Home/Hospital/Still surviving) and independent variables were the patient's symptoms as a time-dependent variable. Competing risk analysis was conducted with adjustment for patient individual factors (demographics, medical factors, caregiver support, and patient's and caregiver's preference for place of death) and environmental factors (availability of physician-visit and policy at discharge). Among all patients, 53 died in the hospital, 52 at home, and 16 still survived. Multivariate analyses revealed the following: 1) patients were more likely to die in the hospital when pain and dyspnea were present (adjusted sub hazard ratio [SHR]: 1.50 [95% confidence interval (CI): 1.23-1.83] and 1.71 [95% CI: 1.36-2.15], respectively); 2) patients were less likely to die in the hospital when delirium was present (adjusted SHR: 0.64 [95%CI: 0.43-0.96]); and 3) other factors associated with hospital death were patient's gender, primary cancer site, caregiver support, health care service, policy at discharge, and congruence between the patient's and family's preference for place of death. To alleviate pain and dyspnea among home end-of-life care patients, development of both a rapid admission system to a hospital/hospice/care facility in the community and specialist-level palliative care at home is needed.

Family Structure Assessment Of Patients In Palliative Home Care

This study aims to examine the family structure of patients in palliative home care in the light of the Calgary Family Assessment Model (CFAM). This is a qualitative research, conducted in the residences of patients enrolled in the Palliative Care Unit and Pain Treatment (PCUP) of a university hospital located in Recife/Pernambuco, Brazil, in the period from May to July 2014. The sample consisted of five patients enrolled in the PCUP and five family caregivers. Data collection was performed through an interviewing technique using two instruments: the genogram and eco-map. The empirical material was analyzed in the light of the Calgary Model of Family Assessment. The application of the Model demonstrated external family structure relationship with the non-existent neighborhood; support network in diverse health, with very strong relationship with the PCUP highlighting the link with nursing professional; weak relationship concerning Basic Health Unit and strong connection to the church. The obtained data suggest that each researched family has demands to be thought of as focus of nursing care and have faith as a resource for coping with the disease. It follows that the application of CFAM has highlighted the intra-family ties and the relations established with the support networks, signaling strategies to optimize patient care without a therapeutic possibility of cure and their family.

Patient Characteristics Associated With Prognostic Awareness: A Study of a Canadian Palliative Care Population Using the InterRAI Palliative Care Instrument

ContextAwareness of their medical prognosis enables terminally ill patients to make decisions on treatments and end-of-life care/planning, and to reach acceptance. Yet, many patients receiving palliative care (PC) are unaware of their prognosis, even when death is imminent and has been discussed with health care providers. A better understanding of patient characteristics associated with prognostic awareness (PA) is needed to develop interventions aimed at improving it. ObjectivesTo identify patient characteristics associated with PA in a PC population. MethodsThe sample comprised 2090 palliative home care patients in Ontario, Canada, assessed using the interRAI Palliative Care Assessment. Independent variables included sociodemographic, cognitive/physical functioning, mood, psychological well-being, and social support. Using cross-sectional data, an adjusted logistic regression model was developed to identify key patient characteristics associated with PA. A multifaceted definition of PA was assumed and represented dichotomously in the model. Multiple imputation was used to address missing data, generating results similar to the complete case analysis. ResultsThe PA was higher in patients with: a shorter prognosis (odds ratio [OR] 2.90, 95% confidence interval [CI] 1.93–4.33), increased hours of informal care (OR 1.71, 95% CI 1.15–2.52), less cognitive impairment (OR 1.61, 95% CI 1.14–2.28), and in patients at peace with life (OR 1.79, 95% CI 1.27–2.53). Site differences were observed but do not reflect differences in age, gender, prognosis, or diagnosis. ConclusionSome patient characteristics are amenable to clinical intervention to raise PA, such as being at peace, cognitive impairment, and depression. Prognostic communications vary in timing and quality and may underlie our site differences, but further research is required to confirm this.

The Sense of Security in Care—Relatives' Evaluation Instrument: Its Development and Presentation

ContextRelatives' sense of security in their family members' palliative home care is important, and a valid and reliable instrument is needed to measure this. ObjectivesThe aim of this article is to report the development, structure, and psychometric properties of a new instrument, the Sense of Security in Care—Relatives' Evaluation (SEC-R), in palliative home care. MethodsInstrument development was based on a previous study and review of the literature; 213 relatives (55% women) of patients in palliative home care were recruited (response rate 73%) and participated in a structured interview based on a questionnaire. Principal component analysis (PCA) was used to identify subscales. The construction was tested in correlation with other scales and questions representing concepts expected to be related to sense of security in care. ResultsThe PCA resulted in three subscales, namely care interaction, mastery and patient situation, which had an explained variance of 53%. Internal consistency of the subscales ranged from 0.76 to 0.78. The final instrument comprises 17 items. The scales were associated with the quality-of-care process and the relatives' situation, perceived health, quality of life, stress, general sense of security, and general sense of security in care. ConclusionThe SEC-R provides a three-component assessment of palliative home care settings using valid and reliable scales associated with other concepts. The SEC-R is a manageable means of assessment that may contribute to quality-of-care measures and to further research on relatives' sense of security in care.