Design

We conducted a systematic literature review. We report on this review according to the updated systematic approach of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement for reviews (Page et al. Reference Page, McKenzie and Bossuyt2021).

Definition

In consultation with palliative care experts, we developed the following definition of effective communication in palliative care:

Search strategy

The search strategy was based on PALETTE, the “Palliative cAre Literature rEview iTeraTive mEthod,” a method to develop search strategies in literature reviews on palliative care focused on complex concepts, such as effective communication (Zwakman et al. Reference Zwakman, Verberne and Kars2018b). We combined different information retrieval techniques, such as contacting experts, a focused initial search, pearl growing (Schlosser et al. Reference Schlosser, Wendt and Bhavnani2006), and citation tracking (Papaioannou et al. Reference Papaioannou, Sutton and Carroll2010; Schlosser et al. Reference Schlosser, Wendt and Bhavnani2006). An initial search and consultation of experts resulted in a set of 7 “golden bullet” articles. The search strategy was further developed in Embase in collaboration with an information specialist from Erasmus MC, University Medical Center Rotterdam, and optimized in an iterative validation process. Keywords were added until all 7 “golden bullets” were identified. The final search was carried out on March 4, 2021 using 5 databases: Embase, MEDLINE (Ovid), Web of Science, Cochrane, and CINAHL (EBSCOhost) (see Supplemental file 1 for search terms).

Inclusion and exclusion criteria

We included articles that met the following criteria: the article described an original empirical study on effective communication between patients and/or relatives with health-care professionals; the study assessed the experiences of patients diagnosed with advanced illness and/or their relatives; the article was published in English between January 1, 2015 and March 4, 2021. We chose the year 2015 as starting point, because from that time a growing patient-centered focus was found in studies on communication in palliative care (Bensing et al. Reference Bensing, Rimondini and Visser2013; De Boer et al. Reference De Boer, Delnoij and Rademakers2013). Studies on communication conducted in non-Western countries, in pediatric palliative care and review articles were excluded.

We started with screening titles and abstracts, and the next step was screening based on full-text articles. All steps were performed by 4 researchers using EndNote X9 (Bramer et al. Reference Bramer, Milic and Mast2017). Differences in the selection of potentially eligible articles were resolved by mutual agreement. When in doubt, an article was reviewed for its full text.

Data extraction and analysis

We developed a data-extraction form that included the aim of the study, the study setting, the study design, the study population, the method of data collection, and the results of the study. Data extraction was performed by 2 researchers (M.E. and M.K.).

Since the research question appeared to be addressed by studies with both qualitative, quantitative and mixed-methods research designs, we took a convergent integrated approach to synthesize and integrate the findings (Stern et al. Reference Stern, Lizarondo and Carrier2021). First, a conceptual overview of the results relevant to the review question was made of each article. In this conceptual overview, we transformed quantitative findings from included studies into a qualitative description. Second, based on the overviews of articles published in 2020 and 2021 (n = 17), a first thematic structure to synthesize study results was developed. Third, remaining articles were then placed along this preliminary structure and if necessary or desirable, themes were added or existing themes were merged. This resulted in the final structure.

Quality assessment

The quality assessment of included articles was performed independently by 2 researchers (M.E. and M.K.). Qualitative articles were assessed using the COnsolidated criteria for REporting Qualitative research (COREQ) checklist (Tong et al. Reference Tong, Sainsbury and Craig2007). Observational studies were assessed using an adapted version of the Cochrane risk-of-bias instrument, which was based on the Cochrane Bias Tool for intervention studies (Fahner et al. Reference Fahner, Beunders and van der Heide2019; Higgins and Green Reference Higgins and Green2011; Sondaal et al. Reference Sondaal, Browne and Amoakoh-Coleman2016). Randomized controlled trials were assessed using the Cochrane tool for assessing risk of bias in randomized trials (Higgins et al. Reference Higgins, Altman and Gøtzsche2011). Given the exploratory nature of this systematic review, all articles were included in the analysis (Dixon-Woods et al. Reference Dixon-Woods, Cavers and Agarwal2006).

Open and honest information

Many patients wanted to be informed openly and honestly about their situation, including their diagnosis, disease, condition, treatment, side effects, disease course (metastases), and prognosis (Abdul-Razzak et al. Reference Abdul-Razzak, Sherifali and You2016; Brom et al. Reference Brom, De Snoo-Trimp and Onwuteaka-Philipsen2017; Goebel and Mehdorn Reference Goebel and Mehdorn2018; Masefield et al. Reference Masefield, Cassidy and Ross2019; Rohde et al. Reference Rohde, Soderhamn and Vistad2019; Seccareccia et al. Reference Seccareccia, Wentlandt and Kevork2015; Villalobos et al. Reference Villalobos, Coulibaly and Krug2018). In a few studies, patients stated that they also appreciated to be rapidly informed of results of diagnostic examinations (Goebel and Mehdorn Reference Goebel and Mehdorn2018; Rohde et al. Reference Rohde, Soderhamn and Vistad2019; Seccareccia et al. Reference Seccareccia, Wentlandt and Kevork2015).

Several articles describe the impact of open communication. Some studies show that patients’ satisfaction with communication improved when they could openly talk about the details of the disease, prognosis, or the dying process (Curtis et al. Reference Curtis, Downey and Back2018; Houben et al. Reference Houben, Spruit and Schols2015). Open communication contributed to a stronger connection (rapport) between patient and health-care professional, which increased patients’ trust (Abdul-Razzak et al. Reference Abdul-Razzak, Sherifali and You2016; Fenton et al. Reference Fenton, Duberstein and Kravitz2018; Freytag et al. Reference Freytag, Street and Xing2018; Paladino et al. Reference Paladino, Koritsanszky and Nisotel2020). In addition, some patients experienced more control and thus a stronger feeling of safety: being well informed about treatment options enabled them to make well-considered treatment or care decisions (Brom et al. Reference Brom, De Snoo-Trimp and Onwuteaka-Philipsen2017; Chen et al. Reference Chen, Roldan and Nichipor2021; Epstein et al. Reference Epstein, Duberstein and Fenton2017; Paladino et al. Reference Paladino, Koritsanszky and Nisotel2020). The relationship between open communication and perceived safety was also demonstrated by the experiences of patients who (partially) missed open information. Several studies show that patients felt isolated when they had the impression that health-care professionals did not inform them adequately (Hilário Reference Hilário2020; Kitta et al. Reference Kitta, Hagin and Unseld2021; Rohde et al. Reference Rohde, Soderhamn and Vistad2019). Patients indicated that open and honest communication could help them to be better prepared to make informed decisions (Masefield et al. Reference Masefield, Cassidy and Ross2019).

When it came to feeling invited and safe to share their needs and concerns, the experiences and needs of relatives were broadly similar to patients (Ahmed et al. Reference Ahmed, Lobchuk and Hunter2015; Caswell et al. Reference Caswell, Pollock and Harwood2015; Gilad et al. Reference Gilad, Goldblatt and Zeilig2022; Ibañez-Masero et al. Reference Ibañez-Masero, Carmona-Rega and Ruiz-Fernández2019; Kim et al. Reference Kim, Bradway and Hickman2018; Masefield et al. Reference Masefield, Cassidy and Ross2019; Steinhauser et al. Reference Steinhauser, Voils and Bosworth2015). However, there were also differences between the needs and preferences of relatives and patients. Although relatives might also struggle with coping with open and honest information and might also need to hold on to hope (Applebaum et al. Reference Applebaum, Buda and Kryza-Lacombe2018), they generally indicated having a greater need for information than patients (Applebaum et al. Reference Applebaum, Buda and Kryza-Lacombe2018; Masefield et al. Reference Masefield, Cassidy and Ross2019). To provide optimal care and to be prepared for future care needs, relatives indicated that they needed timely, detailed prognostic information or information about the process of dying (Ahmed et al. Reference Ahmed, Lobchuk and Hunter2015; Awdish et al. Reference Awdish, Buick and Kokas2017; Bauman et al. Reference Bauman, Schleicher and Nipp2018; Caswell et al. Reference Caswell, Pollock and Harwood2015; Cohen-Mansfield et al. Reference Cohen-Mansfield, Skornick-Bouchbinder and Cohen2017; Collins et al. Reference Collins, McLachlan and Philip2018b; Im et al. Reference Im, Mak and Upshur2019; Krawczyk and Gallagher Reference Krawczyk and Gallagher2016; McGinley and Waldrop Reference McGinley and Waldrop2020; Seccareccia et al. Reference Seccareccia, Wentlandt and Kevork2015; Steinhauser et al. Reference Steinhauser, Voils and Bosworth2015).

Aligning to the process of uptake and coping with information

Although many patients expressed a desire for open and honest communication, many studies also show that patients often found it difficult to cope with information about their deteriorating health (Abdul-Razzak et al. Reference Abdul-Razzak, Sherifali and You2016; Goebel and Mehdorn Reference Goebel and Mehdorn2018; Ibañez-Masero et al. Reference Ibañez-Masero, Carmona-Rega and Ruiz-Fernández2019; Im et al. Reference Im, Mak and Upshur2019; Masefield et al. Reference Masefield, Cassidy and Ross2019; Rohde et al. Reference Rohde, Soderhamn and Vistad2019; Seccareccia et al. Reference Seccareccia, Wentlandt and Kevork2015; Shen et al. Reference Shen, Gonzalez and Leach2020; Weerasinghe and Maddalena Reference Weerasinghe and Maddalena2016). There were many potentially defining moments in the palliative trajectory that could be threatening, such as being diagnosed with a severe illness, the failure of treatment, the transition from curative to palliative or comfort care, transfer to another care organization, etc. (Collins et al. Reference Collins, McLachlan and Philip2018a; Goebel and Mehdorn Reference Goebel and Mehdorn2018; Hilário Reference Hilário2020; Hjelmfors et al. Reference Hjelmfors, Sandgren and Strömberg2018; Im et al. Reference Im, Mak and Upshur2019; Kitta et al. Reference Kitta, Hagin and Unseld2021; Kvåle et al. Reference Kvåle, Haugen and Synnes2020; Masefield et al. Reference Masefield, Cassidy and Ross2019; Melis et al. Reference Melis, Galletta and Aviles Gonzalez2021; Netsey-Afedo et al. Reference Netsey-Afedo, Ammentorp and Osther2020; Pini et al. Reference Pini, Hackett and Taylor2021; Schulman-Green et al. Reference Schulman-Green, Smith and Lin2018; Schulz et al. Reference Schulz, Crombeen and Marshall2017; Tavares et al. Reference Tavares, Hunt and Jarrett2020; Villalobos et al. Reference Villalobos, Coulibaly and Krug2018). Although patients indicated that they preferred open and honest information about these topics, such information confronted patients with their deterioration, their “running out” of treatment options and thus with the threat of increasing dependence and the approaching end of life. This could result in fear, stress, and existential disruption, inducing feelings of insecurity and loss of control. For many patients who thought they were willing to face their end of life and the series of decisions that came with it, arriving at the moment where they had to do so turned out to be a heavy task (Im et al. Reference Im, Mak and Upshur2019; Krug et al. Reference Krug, Bossert and Stooß2021; Masefield et al. Reference Masefield, Cassidy and Ross2019; Netsey-Afedo et al. Reference Netsey-Afedo, Ammentorp and Osther2020; Pini et al. Reference Pini, Hackett and Taylor2021; Rohde et al. Reference Rohde, Soderhamn and Vistad2019; Schulz et al. Reference Schulz, Crombeen and Marshall2017). This tension between wanting to be openly informed and feeling safe, and how patients and relatives found their way in this, looked different for each patient and relative. Some patients were open for detailed information about end-of-life issues while others indicated that they preferred to stay away from the discussion about their prognosis or future care (Bergenholtz et al. Reference Bergenholtz, Missel and Timm2020; Hjelmfors et al. Reference Hjelmfors, Sandgren and Strömberg2018; Kirby et al. Reference Kirby, Lwin and Kenny2018; Krug et al. Reference Krug, Bossert and Stooß2021; Schulman-Green et al. Reference Schulman-Green, Smith and Lin2018; Seifart et al. Reference Seifart, Riera Knorrenschild and Hofmann2020; Shen et al. Reference Shen, Gonzalez and Leach2020). This required customization and a person-centered approach. Patients preferred the physician to assess which and how much information they appreciated (Abdul-Razzak et al. Reference Abdul-Razzak, Sherifali and You2016; Bergenholtz et al. Reference Bergenholtz, Missel and Timm2020; Goebel and Mehdorn Reference Goebel and Mehdorn2018; Lin et al. Reference Lin, Smith and Feder2018). Patients and relatives stated that they sometimes found it difficult to ask for more information: they often did not know what to ask and liked to be explicitly invited to ask questions during or after a conversation with a health-care professional (Awdish et al. Reference Awdish, Buick and Kokas2017; Collins et al. Reference Collins, McLachlan and Philip2018a; Goebel and Mehdorn Reference Goebel and Mehdorn2018; Kitta et al. Reference Kitta, Hagin and Unseld2021; O’Connor et al. Reference O’Connor, Watts and Kilburn2020).

Patients indicated that they needed time to process the information provided (Abdul-Razzak et al. Reference Abdul-Razzak, Sherifali and You2016) and wanted health-care professionals to give them time and space to do so and to acknowledge their suffering (Melhem and Daneault Reference Melhem and Daneault2017; Schulman-Green et al. Reference Schulman-Green, Smith and Lin2018). Most patients and relatives wanted health-care professionals to share the information sensitively to the life-changing impact a diagnosis or prognosis could have (Adamson et al. Reference Adamson, Choi and Notaro2018; Caswell et al. Reference Caswell, Pollock and Harwood2015; Goebel and Mehdorn Reference Goebel and Mehdorn2018; Krawczyk and Gallagher Reference Krawczyk and Gallagher2016; Kvåle et al. Reference Kvåle, Haugen and Synnes2020; Netsey-Afedo et al. Reference Netsey-Afedo, Ammentorp and Osther2020; Rohde et al. Reference Rohde, Soderhamn and Vistad2019; Schulz et al. Reference Schulz, Crombeen and Marshall2017). Aligning information to the process the patient was going through, connecting to where the patient was in terms of information uptake, and offering understanding and room for questions were found to be helpful strategies. Patients and their relatives experienced that physicians, after giving bad news, often rapidly turned to positive aspects or to proposing another examination (Kitta et al. Reference Kitta, Hagin and Unseld2021). Patients sometimes felt pressured to quickly agree to a (non-)treatment decision (Abdul-Razzak et al. Reference Abdul-Razzak, Sherifali and You2016). Patients indicated that they preferred health-care professionals to show that they saw and understood what bad news meant for the patient and for his life (Masefield et al. Reference Masefield, Cassidy and Ross2019; Netsey-Afedo et al. Reference Netsey-Afedo, Ammentorp and Osther2020; Seifart et al. Reference Seifart, Riera Knorrenschild and Hofmann2020). They should see the patient as a person, not as their disease. Some patients experienced that conversations with the physician were bound by rules, that the focus had to be on symptoms and treatment, and that there was little room for talking about impending death (Collins et al. Reference Collins, McLachlan and Philip2018a). Various studies also show that patients found it important that health-care professionals at the end of a conversation offered them the opportunity for a follow-up contact (Goebel and Mehdorn Reference Goebel and Mehdorn2018; Kvåle et al. Reference Kvåle, Haugen and Synnes2020).

Empathy

Most patients and relatives expressed the need for empathic communication (Abdul-Razzak et al. Reference Abdul-Razzak, Sherifali and You2016; Adamson et al. Reference Adamson, Choi and Notaro2018; Awdish et al. Reference Awdish, Buick and Kokas2017; Bergenholtz et al. Reference Bergenholtz, Missel and Timm2020; Caswell et al. Reference Caswell, Pollock and Harwood2015; Chen et al. Reference Chen, Roldan and Nichipor2021; Cohen-Mansfield et al. Reference Cohen-Mansfield, Skornick-Bouchbinder and Cohen2017; Garden and Seiler Reference Garden and Seiler2017; Gilad et al. Reference Gilad, Goldblatt and Zeilig2022; Goebel and Mehdorn Reference Goebel and Mehdorn2018; Ibañez-Masero et al. Reference Ibañez-Masero, Carmona-Rega and Ruiz-Fernández2019; Kim et al. Reference Kim, Bradway and Hickman2018; Kvåle et al. Reference Kvåle, Haugen and Synnes2020; Masefield et al. Reference Masefield, Cassidy and Ross2019; McGinley and Waldrop Reference McGinley and Waldrop2020; Melhem and Daneault Reference Melhem and Daneault2017; Netsey-Afedo et al. Reference Netsey-Afedo, Ammentorp and Osther2020; O’Connor et al. Reference O’Connor, Watts and Kilburn2020; Rohde et al. Reference Rohde, Soderhamn and Vistad2019; Scherrens et al. Reference Scherrens, Cohen and Mahieu2020; Schulz et al. Reference Schulz, Crombeen and Marshall2017; Seccareccia et al. Reference Seccareccia, Wentlandt and Kevork2015; Steinhauser et al. Reference Steinhauser, Voils and Bosworth2015; Timmermann et al. Reference Timmermann, Uhrenfeldt and Birkelund2017; Villalobos et al. Reference Villalobos, Coulibaly and Krug2018; Voruganti et al. Reference Voruganti, Husain and Grunfeld2018; Washington et al. Reference Washington, Craig and Parker Oliver2019). Patients emphasized that effective communication required that health-care professionals had the right skills and empathy (Garden and Seiler Reference Garden and Seiler2017; Rohde et al. Reference Rohde, Soderhamn and Vistad2019; Scherrens et al. Reference Scherrens, Cohen and Mahieu2020; Seccareccia et al. Reference Seccareccia, Wentlandt and Kevork2015). They indicated that empathy was reflected in the behavior and attitude of health-care professionals and that it was partly unrelated to the content of what was being discussed (Awdish et al. Reference Awdish, Buick and Kokas2017; Garden and Seiler Reference Garden and Seiler2017; Goebel and Mehdorn Reference Goebel and Mehdorn2018; Kvåle et al. Reference Kvåle, Haugen and Synnes2020; Melhem and Daneault Reference Melhem and Daneault2017; O’Connor et al. Reference O’Connor, Watts and Kilburn2020; Rohde et al. Reference Rohde, Soderhamn and Vistad2019; Seccareccia et al. Reference Seccareccia, Wentlandt and Kevork2015; Steinhauser et al. Reference Steinhauser, Voils and Bosworth2015; Timmermann et al. Reference Timmermann, Uhrenfeldt and Birkelund2017; Villalobos et al. Reference Villalobos, Coulibaly and Krug2018; Voruganti et al. Reference Voruganti, Husain and Grunfeld2018; Washington et al. Reference Washington, Craig and Parker Oliver2019). Body language suggesting that professionals were busy made patients feel ignored and as if they were a burden (Timmermann et al. Reference Timmermann, Uhrenfeldt and Birkelund2017). For most patients and relatives, the informative side of effective communication was inextricably linked to the empathic side (Goebel and Mehdorn Reference Goebel and Mehdorn2018; Kvåle et al. Reference Kvåle, Haugen and Synnes2020; Melhem and Daneault Reference Melhem and Daneault2017; Rohde et al. Reference Rohde, Soderhamn and Vistad2019; Scherrens et al. Reference Scherrens, Cohen and Mahieu2020; Seccareccia et al. Reference Seccareccia, Wentlandt and Kevork2015; Voruganti et al. Reference Voruganti, Husain and Grunfeld2018). In addition, patients appreciated continuity of care providers, which allowed them to develop rapport with and trust in health-care professionals (Middleton-Green et al. Reference Middleton-Green, Gadoud and Norris2019; Voruganti et al. Reference Voruganti, Husain and Grunfeld2018).

Clear and understandable language

Both patients and relatives indicated that they wanted information to be presented in clear and understandable language (Awdish et al. Reference Awdish, Buick and Kokas2017; Caswell et al. Reference Caswell, Pollock and Harwood2015; Collins et al. Reference Collins, McLachlan and Philip2018b; Garden and Seiler Reference Garden and Seiler2017; Krawczyk and Gallagher Reference Krawczyk and Gallagher2016; Krug et al. Reference Krug, Bossert and Stooß2021; O’Connor et al. Reference O’Connor, Watts and Kilburn2020; Steinhauser et al. Reference Steinhauser, Voils and Bosworth2015). If health-care professionals used veiled terms, for example avoiding the word cancer (Villalobos et al. Reference Villalobos, Coulibaly and Krug2018), this could lead to patients feeling insecure or isolated (Hilário Reference Hilário2020; Kitta et al. Reference Kitta, Hagin and Unseld2021; Rohde et al. Reference Rohde, Soderhamn and Vistad2019). For relatives, unclear language could lead to tension and uncertainty (Caswell et al. Reference Caswell, Pollock and Harwood2015; Collins et al. Reference Collins, McLachlan and Philip2018b; Krawczyk and Gallagher Reference Krawczyk and Gallagher2016). Because they could not properly interpret the signals from the health-care professionals they could feel overwhelmed by the seriousness of the situation (Collins et al. Reference Collins, McLachlan and Philip2018b; Krawczyk and Gallagher Reference Krawczyk and Gallagher2016). The use of euphemisms could also hamper patients’ and relatives’ understanding of the patient’s condition (Caswell et al. Reference Caswell, Pollock and Harwood2015; Collins et al. Reference Collins, McLachlan and Philip2018a, Reference Collins, McLachlan and Philip2018b; Villalobos et al. Reference Villalobos, Coulibaly and Krug2018). For example, using terms like “seriously (ill)” could provide patients with a limited understanding of the time they had left (Masefield et al. Reference Masefield, Cassidy and Ross2019). An example of a signal from health-care professionals in a hospital that pointed to a patient’s impending death, but was not understood as such by the relatives of the patient was: moving the patient to a room for 1 person during hospitalization (Caswell et al. Reference Caswell, Pollock and Harwood2015). Relatives indicated that it was important that the patient and the relative, by using clear language to inform the patient, were offered the opportunity to discuss and finalize things with each other (Caswell et al. Reference Caswell, Pollock and Harwood2015; Krawczyk and Gallagher Reference Krawczyk and Gallagher2016; Steinhauser et al. Reference Steinhauser, Voils and Bosworth2015).

Leaving room for positive coping strategies

In several studies, it was suggested that both patients and relatives needed positive thinking and a perspective of hope, in addition to honest information (Applebaum et al. Reference Applebaum, Buda and Kryza-Lacombe2018; Doorenbos et al. Reference Doorenbos, Levy and Curtis2016; Goebel and Mehdorn Reference Goebel and Mehdorn2018; Im et al. Reference Im, Mak and Upshur2019). Many patients and relatives indicated that they felt more secure when the physician showed understanding that they hold on to what was still important in life, despite bad news (Abdul-Razzak et al. Reference Abdul-Razzak, Sherifali and You2016; Applebaum et al. Reference Applebaum, Buda and Kryza-Lacombe2018; Curtis et al. Reference Curtis, Downey and Back2018; Houben et al. Reference Houben, Spruit and Schols2015; Ibañez-Masero et al. Reference Ibañez-Masero, Carmona-Rega and Ruiz-Fernández2019; Masefield et al. Reference Masefield, Cassidy and Ross2019).

Committed health-care professionals taking responsibility

The involvement of numerous health-care professionals could lead to uncertainty among patients and relatives about whether someone felt responsible for them and deprived patients of a fundamental sense of security and trust, i.e. knowing that they were not only in good hands with regard to medical-technical care but also that their health-care professional cared about them as a person (O’Connor et al. Reference O’Connor, Watts and Kilburn2020; Voruganti et al. Reference Voruganti, Husain and Grunfeld2018). Continuity of health-care professionals prevented patients from having to tell the same story over and over again, but also facilitated a human connection, that could appeal to health-care professionals’ sense of responsibility and commitment (Brom et al. Reference Brom, De Snoo-Trimp and Onwuteaka-Philipsen2017; Middleton-Green et al. Reference Middleton-Green, Gadoud and Norris2019; Voruganti et al. Reference Voruganti, Husain and Grunfeld2018). If several health-care professionals were involved, patients indicated that consistent reporting about their illness and test results was important (McGinley and Waldrop Reference McGinley and Waldrop2020; Steinhauser et al. Reference Steinhauser, Voils and Bosworth2015). Patients and relatives further preferred a proactive attitude from health-care professionals (Ahmed et al. Reference Ahmed, Lobchuk and Hunter2015; Tavares et al. Reference Tavares, Hunt and Jarrett2020; Voruganti et al. Reference Voruganti, Husain and Grunfeld2018), unless the patient indicated otherwise (Ibañez-Masero et al. Reference Ibañez-Masero, Carmona-Rega and Ruiz-Fernández2019; McGinley and Waldrop Reference McGinley and Waldrop2020; Steinhauser et al. Reference Steinhauser, Voils and Bosworth2015; Washington et al. Reference Washington, Craig and Parker Oliver2019).

Recognition of relatives in their role as caregiver

In several studies, relatives emphasized that patients often largely relied on their caregiving and that they considered themselves the backbone of the patient’s support system. Many felt heavily burdened and believed that their role as caregiver deserved explicit attention and recognition from health-care professionals (Masefield et al. Reference Masefield, Cassidy and Ross2019; Washington et al. Reference Washington, Craig and Parker Oliver2019). Patients and relatives indicated that health-care professionals should take time to “really” listen to their concerns and needs and where possible provide personalized support (Awdish et al. Reference Awdish, Buick and Kokas2017; Caswell et al. Reference Caswell, Pollock and Harwood2015; Collins et al. Reference Collins, McLachlan and Philip2018b; Masefield et al. Reference Masefield, Cassidy and Ross2019; Seccareccia et al. Reference Seccareccia, Wentlandt and Kevork2015; Steinhauser et al. Reference Steinhauser, Voils and Bosworth2015).

Sometimes, the relative felt the need to protect the patient from threatening information, for example about the prognosis, so that the patient continued to have hope (Melis et al. Reference Melis, Galletta and Aviles Gonzalez2021) and did not suffer too much from knowing the truth (Ibañez-Masero et al. Reference Ibañez-Masero, Carmona-Rega and Ruiz-Fernández2019; Weerasinghe and Maddalena Reference Weerasinghe and Maddalena2016). Although this could be the case especially in non-Western cultures, relatives indicated that they preferred to receive understandable information themselves to be able to care for their family member (Weerasinghe and Maddalena Reference Weerasinghe and Maddalena2016). Applebaum et al. (Reference Applebaum, Buda and Kryza-Lacombe2018) found that relatives did not ask their own questions out of respect for the patient, who might not want to know everything. On the other hand, some patients indicated that they preferred to keep relatives not informed, especially if the disease progressed and the burden or fear and worry of the relatives might increase (Lin et al. Reference Lin, Smith and Feder2018; Melis et al. Reference Melis, Galletta and Aviles Gonzalez2021). Relatives indicated that the key to open communication lied with the health-care professional, she/he could set the example (Ibañez-Masero et al. Reference Ibañez-Masero, Carmona-Rega and Ruiz-Fernández2019).