Experiences of family caregivers of patients with terminal disease and the quality of end-of-life care received: a mixed methods study

Design

We conducted an observational, cross-sectional, descriptive, and analytical mixed methods study (Creswell, 2014) (see Fig. 1), following a concurrent triangulation strategy (Creswell & Plano-Clark, 2007) with data integration in the analysis and interpretation (López-Fernández & Molina-Azorín, 2011; Onwuegbuzie & Collins, 2007).

The mixed methods study was based on the quantitative and qualitative results of a previous multicenter study conducted in family caregivers of patients who died from a terminal illness. They completed a questionnaire to assess the perception of the care received and were invited to provide other details of the experience lived through a complementary interview on the main topics addressed in the questionnaire.

A mixed methods approach is invaluable for studying end-of-life care because of the need to consider all aspects, including the overall quality of care perceived (assessable by quantitative instruments) and the subjective experiences of caregiver relatives (better understood with a qualitative design) (Farquhar, Ewing & Booth, 2011). These two approaches may give similar results but can also markedly differ, providing a more comprehensive view of the reality observed (Curry et al., 2013).

Participants

Participants were selected by intentional sampling, followed by snowball sampling. This method was selected because it can sometimes be difficult to identify an informal caregiver (Barber, 2012) and because relatives are often reluctant to talk about suffering and/or death (Chaturvedi, Loiselle & Chandra, 2009; Pino & Parry, 2019). Participants were initially contacted by the liaison nurse on our team, who briefly explained the nature of the study and invited them to make contact with the research team after obtaining their informed consent (quantitative phase). These participants were invited to a complementary individual interview (qualitative phase) to explore their experience of the end-of-life process. Data collection in the qualitative phase ended when data saturation was achieved.

This study was carried out in Andalusia (Southern Spain), the most populous Spanish Autonomous Community (>8 million inhabitants). The Spanish Healthcare system is a public, universal, and decentralized system in which the Autonomous Communities are responsible for managing and organizing their inhabitants’ health care, including end-of-life care and palliative care‘ (Sociedad Española de Cuidados Paliativos (SECPAL), 2016). According to the latest Atlas of Palliative Care in Europe, Spain is in the third quartile for the number of specialized palliative care services (0.6 per 100,000 inhabitants) and in the first quartile for the consumption of opioids (Arias Casais et al., 2019). Andalusia ranks third among Spanish autonomous regions by the amount of resources for palliative care (Arias Casais et al., 2019).

Procedure

Selected family members were telephoned by the corresponding unit/department to obtain their verbal consent to participation in the study and to make an appointment for the questionnaire administration. The majority of caregiver relatives who agreed to participate in the study opted to complete the questionnaire at home (participants’ residence), where the interviews were always conducted. After completing the questionnaire, two researchers experienced in qualitative research invited them to add information and comments in their own words. Recording of the interview was refused by the majority of participants to avoid the possibility of their identification. Interview data were collected by one interviewer, using pen and paper, while the other researcher conducted the interview.

Data collection

The questionnaire was developed with five sections that covered the main aspects of end-of-life care recognized as basic quality indicators according to the reviewed literature, as follows: the sociodemographic characteristics of the relative; the patient and disease; symptom control during past month; support and information from healthcare professionals; and perception of the end-of-life care provided. It contained dichotomous (Yes/No) items and 5-point Likert-type questions that assessed frequency (1= “Never” to 5= “Always”) or degree of satisfaction (1 = “Very Bad” to 5=“Very Good”). This questionnaire has been used in previous research on end-of-life care (Guardia-Mancilla et al., 2017; Guardia Mancilla et al., 2018). It took between 18 and 25 min to complete the questionnaire.

The complementary interview included eight questions on the experience of the relative at different stages of the end-of-life process, including the emotional response to the diagnosis, prognosis, and death, the information received, and their satisfaction with the healthcare delivered. Interviews were conducted in a single 15–30 min session.

Data analysis

After a descriptive analysis of questionnaire results (means, standard deviations, frequencies), Pearson’s Chi-square or the Student t-test for independent samples was applied, as appropriate. SPSS version 19.0 was used for the data analyses, and p values <.05 were considered significant.

Transcriptions and notes of the interviews were analyzed by two researchers, who prepared the initial and emerging codes by consensus. Following the recommendations for use inductive content analysis of Elo & Kyngäs (2008) these citations were assigned codes by open encoding and creating the main categories.

A content analysis was then conducted by researchers using Altas.ti version 7.2 and was subjected to a triangulation process in which various interviews were independently coded by two different researchers.

Quantitative and qualitative data were integrated using a concurrent triangulation design (Creswell et al., 2003), following a strategy of comparison around the main topic categories addressed in the questionnaires and interviews (Combs & Onwuegbuzie, 2010). Four themes emerged from the integration of quantitative data and qualitative categories. Cross-sectional codes for the type of disease and place of death were considered in the comparative analysis. The components of the triangulation are specified in Table 1.

Ethical considerations

The research project of which this study forms a part was approved and authorized by the Ethics and Clinical Research Committees of the participating hospitals: Virgen de las Nieves Hospital, San Cecilio Clinical Hospital and Baza Hospital. All participants signed their informed consent to participate in the study, which followed the principles of the Helsinki Declaration (2013) and complied with Spanish law (Organic Law 15/1999) on personal data protection, guaranteeing the anonymity of relatives and patients. They were told that they could withdraw from the study at any point. Questionnaires and interviews were identified with an alphanumeric code, removing all references to individuals or places from interview transcripts.

Theme 1: communication and information

According to the results of the quantitative phase, most participants (79.7%) were always or almost always informed on the status and prognosis of their relative and received information on available resources (74.4%), therapeutic options (79.8%), and comfort measures (69.8%) Information on available therapeutic options appears to have been better for relatives of patients with oncological versus non-oncological disease, but no difference between these groups was observed in information about the diagnosis and prognosis or on available comfort measures and resources (see Table 3).

In the qualitative phase, participants described the time they were informed of the diagnosis as traumatic and/or negative, and they described the language used as ambiguous and the information given by professionals as scant. Relatives of oncological patients were better informed and had greater knowledge of the disease severity. Relatives of non-oncological patients reported their distress on receiving the information, which was usually given just before or even after the death (see Table 4).

Theme 2: professional support

In the quantitative phase, the relatives generally reported feeling always or almost always supported by healthcare professionals (especially nurses), and 77.4% of them were always/almost always able to talk about their concerns with professionals.

Professional support was more highly rated by relatives of patients who died in a palliative care unit or at home (Table 5). Likewise, a high percentage of relatives felt able to comment on their concerns with professionals at home, in a palliative care unit, or in a hospital room, whereas this appeared to be rarely or never possible in an emergency department or ICU. Relatives also reported receiving more information at home (see Table 5).

In the qualitative interviews, most relatives of oncological patients described being always or almost always supported by professionals, while most relatives of non-oncological patients described only sometimes receiving this support (see Table 4).

In relation to the end-of-life setting, greater professional support was always or almost always felt by relatives in palliative care units or at home, somewhat less frequently in hospital rooms, and much less frequently in emergency departments or ICUs. In the quantitative phase, a high percentage of participants were always or almost always able to talk about their concerns with professionals at home (93.8%) or in a palliative care unit (81.3%) or hospital room (73.6%), but this was described as rarely or never possible in an emergency department or ICU (see Table 5).

In this phase, domiciliary care was perceived as scant, except in the case of oncological patients during the end-of-life period. However, high satisfaction was expressed by relatives of non-oncological patients who received care at home when their functions became more limited (Table 4).

Theme 3: symptom control

According to results obtained in the quantitative phase, the most frequently reported symptoms of patients were pain (89.9%) and weakness (74.8%), followed by dyspnea (45.3%) and fever (42.3%). When present, pain (66.4%) and fever (53.8%) were the most successfully controlled symptoms.

Symptom control varied as a function of the place in which the last month of life was spent, being best when at home or in a palliative care unit and worst when in emergency department or ICU. At home, the best controlled symptoms were pain and dyspnea and the worst controlled were confusion and weakness/tiredness. Fever was best controlled in hospital rooms, while more complex symptoms such as weakness/tiredness and confusion were best controlled in palliative care units. Symptoms were worst controlled in ICUs and emergency departments (see Table 6).

The qualitative phase revealed that not all oncological patients were in a specific area for symptom control during the last month of life, and highlighted the suffering caused to relatives by their perception of severe symptoms. Symptom control was perceived in a different manner by relatives of patients with non-oncological diseases, which they described as developing over years, with a progressive worsening of symptoms (see Table 4).

Theme 4: Perceived experience of death and end-of-life process

The perceived experience of death was related to the needs that were attended. Thus, in the quantitative phase, 83.3% of participants who reported a good or very good experience of attention to their patient’s needs felt that all needs were attended to, while half of the relatives did not describe any aspect that required improvement. Needs had been met even when the experience had been poor (45.7%), although those reporting a poor experience felt that attention to needs and professional support should be improved. In fact, this was the aspect most frequently described as requiring improvement: by 52.4% of those reporting a poor or very poor experience and 42.9% of those reporting a good or very good experience. Other aspects needing improvement were bereavement support and conditions to promote end-of-life care.

Regarding the attention to needs and professional support, the interviews revealed the need for improvements in the information provided and, in the language used, which was sometimes considered ambiguous language. Unattended needs were mainly related, by both oncological and non-oncological patients, to the final stage of life. Differences were found between the relatives of oncological and non-oncological patients, with the former having an individual room, offering privacy during the last days of their life and allowing relatives to be with them to the very end. This was not the case for the non-oncological patients (Table 7).

In the quantitative phase, the relatives‘ perception of their experience of death was also related to the place in which it concurred, with the experience considered good or very good when at home by 84.4% or in a palliative care unit by 71.9% and considered poor or very poor in the emergency department/ICU (75%).

The qualitative phase showed that the differentiation by relatives between a good or bad death was not only related to their perception of suffering, pain and symptom control but also to the attitude of the staff and the adequacy of the place of death for accompanying the patient to the end.

With regard to pain and suffering, patients died under sedation to minimize their suffering. In a minority of cases sedation was not initiated until requested by family members. The experience by relatives of the suffering endured by a dying loved one was described as changing their attitude to the quality of death. They considered the idea of dying slowly and painfully as unbearable.

Concerns of relatives about care during the bereavement process were related to the difficulty in expressing their emotions, diagnostic concerns, lack of symptom control, and the fact that the patient did not die in the preferred place, among others (Table 7). Participants expressed concern and regret for not having more time to bid their loved one farewell and for having failed to respect his wish to die at home.

Finally, an integration of the main results in the four main themes is depicted in Fig. 2.

Limitations of the study

One potential limitation of this study was the ad hoc design of the questionnaire, although it was based on a detailed review of the literature (Barbera, Paszat & Chartier, 2006; Earle et al., 2005; Van den Block et al., 2008). Further research is required to verify the usefulness and psychometric properties of this instrument for evaluating the quality of end-of-life care. In addition, it was not possible to study homogeneous samples of oncological and non-oncological patients, and participants in the qualitative and quantitative phase differed in some of the sociodemographic characteristics. This is largely attributable to the difficulty of identifying non-oncological patients in end-of-life processes in our healthcare system (Campos-Calderón et al., 2017). Finally, because most relatives refused to be recorded, analysis of the interviews was based on written notes taken by researchers, and the appropriate caution should be taken in interpreting the results.

Future outcomes

The present research has a number of future outcomes. First, it identifies highly relevant situations for delivering quality care to patients and their families in an end-of-life situation, which have already been reported to the health authorities. Second, it points out differences in end-of-life processes according to the type of disease and place of treatment, highlighting the need for specific measures and even the modification of protocols for health centers and home care. Finally, it promotes dissemination of the experiences and perceptions of caregiver relatives as one element of the triangle sustaining health care and as a means to exteriorize clinical relationships and care management.