This is a cross sectional questionnaire study.
In Norway, a municipality is a council area that can be a city, town or other district, possessing corporate existence and its own local government. The Norwegian municipalities (n = 422)  are responsible for providing homecare services for the population (n = 5.3 million) . Homecare services include homecare nursing and practical assistance to meet the needs of each patient . Palliative care is organised in specialised and non-specialised services, where mainly the latter serve patients in the municipalities . This means that the healthcare professionals care for all patients who need homecare, including those who require palliative care.
The participants in this study were recruited from an urban municipality with about 30,000 inhabitants in the southeast of Norway. The homecare is organized in self-directed work teams (SDWT) on day and evening shifts. The basic idea behind a SDWT is that the team members are empowered and organize the service to meet the needs of the patients and their relatives, while ensuring optimal utilization of resources, continuity of care and appropriate competence [33,34,35]. A SDWT consists of a small group of healthcare professionals, including one who has the role of primary contact, which means that she/he provides daily care to “her/his” patient, including planning, evaluation and documentation.
There are three palliative SDWTs in the municipality, each of which cares for an average of 28 patients. They not only cover patients in the early or late palliative phase or terminal phase, but also seriously ill patients who are receiving curative treatment. A SDWT is made up of five registered nurses (RNs), of whom at least one has a specialist education in oncology nursing, two enrolled nurses and one assistant without any health education. A registered nurse (RN) who is responsible for organising the daily care leads each SDWT. The palliative SDWTs are non-specialised because they are not fully staffed by healthcare professionals, thus do not provide a multidisciplinary palliative approach. The patient’s general practitioner or physicians at the hospital deal with medical aspects during the day. In the evening, at night, on weekends and holidays this becomes the responsibility of physicians at the emergency department.
Two RNs specialised in oncology nursing work across the SDWTs to support seriously ill and dying patients and their family members as well as supervising the SDWT members. One of these nurses is entitled cancer care coordinator (100% position) and the other cancer nurse (50% position).
This article is part of a study of 60 patients receiving palliative homecare in Norway and 38 of their relatives.
The present paper includes 32 patient-relative dyads. A patient-relative dyad refers to the patient and the person she/he has named as her/his closest relative. The inclusion criteria for patients and relatives were: 1) ≥ 18 years, 2) documentation showing that the patient was in a late palliative phase (with an advanced malignant or non-malignant illness) and that patient and relative were informed about the situation, 3) ability to understand spoken Norwegian and 4) competent to make decisions (in the opinion of the SDWT leader). Moreover, the patients should 5) receive help from the cancer care coordinator or the palliative SDWT and 6) the healthcare professionals should answer “no” to the 1 year life expectancy question: “Would you be surprised if this patient dies within the next year”? . Relatives were included when 7) proposed by the patient, 8) the patient had given her/his consent for the relative to participate and 9) the relative should be able to read and write Norwegian.
It was difficult to estimate the eligible sample, but the cancer care coordinator who keeps track of patients in the palliative phase in all SDWTs reckoned about 180 eligible patients. The patients were consecutively sampled by the SDWT leaders. About 95 were excluded due to not meeting inclusion criteria 2, 3, 4, 6 and because the SDWT leaders reported a heavy workload and thus forgot to invite patients to participate. Of the 85 patients who were asked to participate, four refused immediately, 16 failed to return the written consent and five died before the interview took place. Forty-three patients gave their consent to ask their relatives to participate and 38 relatives returned the questionnaire. Finally, the participants constituted 32 patient-relative dyads.
Characteristics of patients-relatives (29/28 items) consisted of age, gender, language/ethnicity, education, diagnosis, living conditions, support from the healthcare system, family and friends and preferred location of care. Relatives were also asked about their need for respite.
One question (EQ VAS) from the EQ-5D-5 L questionnaire [37, 38] measured the respondent’s self-rated health on a vertical visual analogue scale with endpoints from “Best imaginable health” (100), to “Worst imaginable health” (0). An overview of the demographic and health-related characteristics of the patient-relative dyads is presented in Table 1.
Table 1 Characteristics of patients and relatives dyads in palliative home care (n = 32)
The following information about patients and relatives is not shown in the table. All but one patient and all relatives were ethnic Norwegians. Furthermore, 13 of the patients lived alone, 19 had more than one diagnosis, 17 suffered from cancer, 16 had received palliative homecare for more than 6 months several times a day (n = 11) or daily (n = 6) from RNs (n = 26), enrolled nurses (n = 20) and/or the cancer care coordinator/cancer nurse (n = 15). In the 2 to 3 weeks prior to the interview, 12 patients had received treatment from a general practitioner, 20 had been hospitalized/received polyclinic treatment and 10 spent one or more days each week at a day hospice. Of the relatives, 24 cared for the patient part-time and 17 had no respite from this responsibility.
Quality from the patient’s perspective instrument – a modified version
Perceptions of security in palliative homecare were measured by a modified version of the Quality from the Patient’s Perspective (QPP) instrument. This patient-centred instrument was developed from a theoretical model of quality of care and research about patients’ perceptions of care quality [39, 40]. The theoretical framework includes four quality of care dimensions: the medical-technical competence of the caregiver (MT), the physical-technical conditions of the care organisation (PT), identity-orientation in caregivers’ attitudes and actions (ID) and the socio-cultural atmosphere of the care organisation (SC) (56 items full version) [39, 41]. The QPP has been found to be of a high standard , with robust psychometric characteristics in different languages and settings [41, 43,44,45].
A modified version of the QPP was developed in this study, based on results from research about security in palliative homecare [18, 21] and the researchers’ knowledge of the field. It consists of 44 items, of which 26 were chosen from the original QPP: MT (7), PT (1) and ID (18). Eighteen new items were added as context-specific security-related scales representing the following four aspects: competence (4 items), continuity (4 items), coordination/cooperation (4 items) and availability (6 items). Theoretical support for the chosen four security-related aspects and their content was found in all dimensions and their respective items as shown in Appendix.
Each item consists of a statement about the perception of security in palliative homecare in terms of the perceived reality (PR): “This is what I experience/what I think the patient experiences” and the subjective importance (SI): “This is how important it is to me/how important I think it is for the patient”. The statements were rated on a four-point Likert type scale. For the PR statement the scale was 1 (totally insecure), 2 (fairly insecure), 3 (fairly secure), 4 (totally secure) and for the SI statement the scale was 1 (of no importance), 2 (of some importance), 3 (of great importance), 4 (of very great importance). A non-applicable response alternative was available for both statements.
In a more formal sense, with the exception of Cronbach alpha calculations, no systematic test of the psychometric properties of the modified version has so far been performed because of the burdensome work involved in collecting additional data. This obviously also applies to the modified version of the QPP in the present study and the four newly constructed context-specific security-related scales. However, this study provides a detailed presentation of reliability coefficients (Cronbach’s alpha, see Table 2). In addition, visual inspection-based comparisons have been made with results obtained in a previous study from Norway using the modified QPP . Fairly similar results were obtained, although the mean scores reported in the present study are slightly higher.
Table 2 Reliability test (Cronbach’s α) of the modified sense of security QPP scale in palliative home care
A pilot study was conducted in October 2013 including a dyad of five patients in a palliative phase/five relatives recruited from one SDWT. The participants answered the questionnaire and provided feedback on its length, relevance, complexity and the instructions about filling it in. The data from the pilot study were included in the total material as the feedback only concerned minor changes to the wording. The data collection continued until July 2015.
Two researchers (RH or BB) interviewed all patients in their homes by asking the questions in the questionnaire and filling it in. The response scales were enlarged on a separate sheet to make answering easier. The interviews lasted from 30 to 90 min. Some of the longest interviews included pauses because the patient felt tired.
The researchers (RH or BB) distributed the questionnaire and written information to the respective relatives. The relatives filled in the questionnaire by themselves.
All questionnaires were coded with numbers where the patient-relative formed a matching pair.
Ethical approval adhered to Norwegian regulations and law. The Regional Committee for Medical and Health Research Ethics in South East Norway assessed the study and stated that it did not require their approval (Reg.no 2013/679 A). Therefore, the Data Protection Authority of the Norwegian Centre for Research Data (NSD) approved the study (Reg.no. 34536). The head of the healthcare services in the municipality gave local approval for the study.
All patients provided their informed written consent. They were also asked for permission to request their relatives to participate. If they consented, the relatives received written information and completing the questionnaire was deemed informed consent. Patients and relatives were informed about the integrity, voluntariness and confidentiality of the study and assured that personal identification would be impossible in the published results .
Patients and relatives received the opportunity for extra support after the interview from one of the SDWT nurses.
The EuroQol Group gave permission to use the EQ-5D-5 L questionnaires.
Data were analysed using IBM SPSS Statistics, version 24. Characteristics of patients and relatives and self-rated health were analysed by means of descriptive statistics. Potential differences between the age and educational level of the patients and relatives were analysed by the T-test, while gender and the preferred care location were analysed by the Chi-squared test (X2). The Wilcoxon’s signed rank test was used to examine the potential differences in perceptions of security between PR and SI for patients and relatives and the patient-relative dyads. The mean value in each dimension and aspect was calculated by adding the item scores and dividing by the number of items answered.
The Cronbach’s α coefficient was used to test internal consistency except for the PT dimension as it only contained one item. The Cronbach’s α coefficient is given for each dimension and aspect (Table 2) and ≥ 0.7 was regarded as desirable . The Cronbach’s α coefficient ranged from 0.57 to 0.92, with < 70 for the context-specific scale, aspect competence (α = 0.64, patient PR), coordination/cooperation (α = 0.62, patient PR) and availability (α = 0.57, patient SI).