Step 1: Identifying a Broad Problem Area
Timely palliative care referral in a cancer setting was the problem area identified. In adults and children, timely palliative care referral is associated with improved quality of life, symptom control, communication, treatment decision-making, advance care planning, end-of-life care, and reduced costs (36-41). However, oncologists in a cancer care setting may act as gatekeepers, and their gatekeeping behaviour might facilitate or hinder referral to palliative care (42, 43). Studies have shown gatekeeping behaviours include waiting till the end of a potentially curative treatment to make a palliative care referral or making a referral when there is an explicit request from the family (44-46). Furthermore, studies also showed that oncologists preferred to gatekeep the referral process and liked to control and coordinate the care process of their patients at all stages of their illness trajectories (47-52). Therefore, understanding their palliative referral behaviour in a cancer setting could facilitate better engagement and early integration of services.
Step 2: Defining a Problem Statement
The problem statement: Referral behaviour of oncologists underpins timely palliative care referrals. The study aimed to explore this phenomenon. Socio-cultural context and the perspectives of involved social actors influence referrals in healthcare (43). Knowing their views on what helps or hinders referral can influence policies and practices that could have a transformative impact and might overcome health inequity (53). Social exchange theory has been previously used to explain physician referral behaviours in a few healthcare settings (25-29). In all these studies, the exchange behaviour during referral correlated well with aspects of social exchange theory described later. However, none of these studies was conducted in a cancer care setting. In this study, we tested the utility of social exchange theory as a framework for explaining oncologists' referral behaviour in a cancer palliative care setting using a systematic review (54) and original research (55) conducted by the authors of this paper.
Step 3: Develop a Hypothesis
Hypothesis: Social exchange theory is useful for explaining oncologists' palliative care referral behaviour in a cancer setting.
In a healthcare setting, the referral is a social event. It can be perceived as a social exchange behaviour (28), where there is a temporary or permanent sharing of responsibility for patient care between the referrer and the referee (29). Social exchange theory theorises the social behaviour of exchange where people are motivated to engage in an exchange where they may gain or forfeit something of value (56). It is often viewed in terms of social actors interacting to meet their needs, in which the interaction aims to seek reward and avoid the cost (56). The components included in the social exchange process are detailed in Table 1.
Steps 4,5, and 6: Determining measures for Hypothesis Testing, Data Collection and Analysis
In this step, the hypothesis was tested using a systematic review (54) and original research (55) conducted by the authors of this paper. The data collection and analysis of these two measures are described below.
A systematic review (54) was conducted with a review question: "What are the views of oncologists and haematologists on palliative care referral"? Studies published in English involving human subjects from 01/01/1990 to 31/12/2019 were accessed. Studies exploring the views of the oncologists, haematologists, and cancer specialists about palliative care referral in a cancer care setting were included. All studies were scored for methodological rigour using Hawker's tool (65). Studies with Hawker's methodological quality score of 19 or above were included. Screening, quality appraisal and data extraction were conducted independently by two reviewers. The typology of evidence informing this review was a heterogeneous mixture of surveys, qualitative studies, and mixed-method studies. Popay's narrative synthesis method was chosen as the review approach as it is appropriate for synthesising textual data from surveys and qualitative studies into themes (66). Furthermore, it facilitated using a theoretical framework for interpreting study findings (66). Out of 9336 initial database citations, 23 studies were included for synthesis. Five themes were developed during synthesis. They were a) presuppositions of oncologists and haematologists, b) power relationships and trust issues, c) Making a palliative care referral: A daunting task, d) cost-benefit of a palliative care referral, and e) strategies to facilitate a palliative care referral (54).
The subsequent qualitative study (55) was conducted with a research question: What are the views of oncologists and haematologists on what facilitates or hinders the referral of a child with advanced cancer to palliative care? Twenty-two eligible oncologists and haematologists managing children with cancer were purposively recruited from 13 tertiary cancer centres. The cancer centres were selected based on three essential criteria: a. sites where paediatric oncology and haematology services were offered, b. the availability of oncologists and haematologists managing children with cancer, and c. the availability of palliative care services. Research data were collected through individual, face-to-face, semi-structured qualitative interviews. Research data were analysed using Braun and Clarke's Reflexive Thematic Analysis method (67). Four themes and their subthemes were generated during the thematic analysis of the data. The four themes developed were: 1) presuppositions about palliative care and palliative care referral, 2) the task of making a palliative care referral, 3) cost-benefits of making a palliative care referral, and 4) strategies for developing an integrated palliative care model in paediatric oncology (55).
Step 7.1: Data Interpretation and Theory Evaluation
The findings of the systematic review (54) and the original research (55), used to test the hypothesis, were interpreted using the tenets of social exchange theory.
- Human Cognition and Emotions
Human cognition is an essential motivation for social exchange that goes beyond the process or outcome of the exchange (68). The social actors are emotive and cognising, and the emotions experienced by the social actors act as an internal reinforcement for the exchange behaviour (57). However, sentiments go beyond emotions, representing an affective state or feeling where emotions are linked to a social object or social unit (69). It is a social construct that leads to an affective response, which is the psychological state of the social actor (70). The presupposition is an implicit assumption or belief about a phenomenon (71). Presuppositions trigger cognitive responses that impact decision-making and social behaviour (72).
In both the review (54) and research (55) findings, oncologists expressed presuppositions about the trustworthiness of palliative care providers. Trust is a cognitive process in which one social actor expects another to be trustworthy (73). Trustworthiness refers to the belief in another person's ability, reliability, integrity, resourcefulness and benevolence (74). In both review and research findings, oncologists highlighted the role of competence-based trust while making a referral to expect another person or team to perform a task effectively (75).
The study (55) brought out benevolence as a facet of trustworthiness. Benevolence corresponds to doing good and being kind (76). In the study (55), oncologists felt that some palliative care providers were less benevolent due to a perceived lack of empathy and a lacklustre approach. The study (55) also highlighted the role of the social identities of social actors on trustworthiness, cognition and exchange behaviour (69).
In the review (54), oncologists expressed self-efficacy in catering to palliative care needs. However, the study (55) found that oncologists had mixed feelings about their ability to respond appropriately to these needs. Perceived self-efficacy is a person's belief about their capabilities to produce a level of performance to accomplish a task that meets the expectation of the self and others (77). The perception of self-efficacy influences cognitive and affective processes and impacts social behaviour and action (77). In the study (55), only a small number of oncologists perceived self-efficacy in providing palliative care. Most oncologists valued the benefit of palliative care referral and acknowledged their constraints regarding the limits to their skills and knowledge needed to provide palliative care. The equipoised appraisal of perceptions of their limitations and self-efficacy formed the presuppositions that impacted the referral behaviour.
Emotions triggered by task activities are central to social exchange behaviour (57). The exchange process can trigger a host of emotions. Some are general feelings like pleasure or dissatisfaction, while others are specific feelings like anger, shame, trust, confidence, gratitude or pride (78). The exchange outcomes also produce emotions that influence the social actor's commitment to the exchange process (78). A positive emotion triggered will encourage the social actor to repeat the experience, whereas a negative emotion may deter future participation in the exchange process (78). The review found that (54), referral to palliative care caused some oncologists to experience therapeutic failure, abandonment, and a break in the therapeutic alliance. Moreover, these felt emotional and experienced a loss of hope. Emotions triggered by the task of referral could hinder future engagement. Conversely, the study (55) found oncologists believed that family feedback provided an opinion about the quality of palliative care services and that positive family feedback was a reinforcement for future referrals.
- Power, Status and Expectations
In social exchange, the social actor making the referral retains the reward power, whereas another social actor is rewarded with the referral if they meet the expectations of the referrer (62). In the study (55), oncologists made a referral to palliative care if those services met referrer expectations and agreed with the line of management advised by referring oncologists. This one-sided dependency leads to asymmetrical relationships where the person receiving the referral must comply with the person's wishes for making the referral (62). and can lead to coercive power, in which a social actor obtains compliance from another (62). This phenomenon was observed in our review (54) and research (55) findings. Oncologists preferred to control and coordinate the care at all stages of the illness trajectory. They wished to retain control over the patient even when the palliative care providers managed them. In an exchange relationship, a social actor's status or superior attributes allow them to command others' compliance (59).
Expert power is where the social actor believes they have expert skills and knowledge in a domain not possessed by another social actor, and legitimate power is derived from the virtue of their position (79). In the study (55), the qualifications and experience of the palliative care provider influenced referral. Oncologists thought they had higher qualifications because of their training and were more experienced than palliative care providers. Furthermore, the oncologists felt they had expert and legitimate power or authority to control and coordinate all referral activities (62). These observations were supported by the review findings (54) where oncologists could gatekeep the referral process and perceived palliative care referral as a loss of control and interference in the care process.
- Symbolism and Stigma
Exchange behaviour also has a symbolic perspective where social actors interact and communicate about a phenomenon using symbolic inferences (70). In the review (54), oncologists felt that palliative care referral symbolised the loss of hope, a break in therapeutic relationships and abandonment. In the study (55), oncologists thought that the relationship between oncologists and patients is akin to a family relationship where palliative care referral was equated to handing over the family member to another person symbolising therapeutic failure and failing the child. Oncologists felt that families equated palliative care referral as a change in the child's condition, the intent of treatment or that the child would not survive.
Stigma is a complex phenomenon characterised by social structures like stereotypes, prejudices and discrimination (80). In the study (55) and review (54) findings, oncologists expressed stigma associated with palliative care due to the negative stereotyped association of palliative care with death. Public stigma refers to stereotyped thoughts based on general opinion (81). Due to the public stigma associated with palliative care, families were disinclined to engage with palliative care. According to the study (55), both families and oncologists had negative views about palliative care. Label avoidance stigma refers to not pursuing a line of management due to the stigma associated with its name (82). In the review (54), oncologists avoided the term palliative care as it induced fear. They felt families were alarmed by mentioning palliative care, requiring oncologists to explain what palliative care is and is not. In the study (55), oncologists avoided the term palliative care, symbolising the loss of hope and negative attributes. The perception of public stigma and label avoidance stigma among some oncologists conferred the social power to exclude palliative care providers from the care process (83).
- Task and Efforts
The effort needed to complete the task affects future exchange (69). The social actor's contribution to the task depends on the perceived fairness of the effort-to-reward ratio (61). If the effort-reward balance is inequitable, the social actor may have diminished interest in the exchange relationship (84). Therefore, social exchange behaviour is moderated by the social actor's perception of the effort-to-reward ratio (85). In both review (54) and the study (55), oncologists felt that efforts needed to make a palliative care referral were significant. Oncologists found it challenging to navigate a complex set of illness-related factors like the course of illness, complications, stage of the disease, presence of symptoms, cure potential, the intent of treatment, prognosis and performance status of the patient underpinning the palliative care referral decision (54, 55).
- Reward, Cost, Profit and Value
Anything that leads to a selective repetition of a previous behaviour is a reinforcer (56). Reinforcement is a central concept in a social exchange relationship, and reinforcement behaviour is strongly linked to rewards, cost, profit and value (58). Socially significant behaviour will not be repeated unless it is reinforced (58). From a social exchange perspective, several rewards are described (60). Moreover, rewards are not restricted to physiological or materialistic benefits but can extend to higher self-actualisation needs (60).
Behavioural rewards are linked to immediate outcomes of activity that determine future exchange (60). Social actors notice these rewards first as they are outcomes of the short-term association (60). In both the review (54) and the study (55), most oncologists appreciated behavioural rewards in the form of pain and symptom management, improvement in the quality of life, better family coping, enabling prognostic discussion, decision-making support, and advance care planning. The study (55) found that they also appreciated the support children received at home from palliative care services during the terminal phase of the illness.
Relational rewards are the long-term benefits of continuous and extended association (60). Social actors may notice these rewards late due to a longer-term relationship (60). Some oncologists participating in the study (55) felt that a collaborative relationship between the oncology and palliative care teams could enhance the productivity of the oncologists by reducing stress, saving time, improving treatment outcomes and sharing the responsibility of care. Saving the oncologists' time was the only relational reward noted in the review (54). Self-actualisation rewards can transform the social actor and bring about personal growth (60). Self-actualisation rewards were only seen in the study findings (55). A few oncologists felt that their association with palliative care had improved their symptom management and prognostication skills and made them more empathetic and compassionate.
In social exchange, the cost is the loss incurred while pursuing rewards (63) and is considered the withdrawal of a positive reinforcer or the application of a negative reinforcer (58). It may cause the social actor to forego the exchange process or choose an alternative (58). The more costly the activity, the less often it is undertaken. Profit is reward minus costs, and the social exchange process may continue when the social actor stands to profit from the exchange (60). In the review (54) and the study (55), oncologists experienced a disadvantage of palliative care referral when the palliative care team provided conflicting information about the patient's clinical condition, prognosis and outcomes causing families to receive mixed messages from the oncology and palliative care teams.
Beyond reward, cost and profit, the social actor also considers the exchange's value (60). Value is the social actor's satisfaction from performing the activity and the positive feelings derived from another social actor during the exchange (58). Beyond the immediate and relational rewards, in the study (55), oncologists felt that early palliative care adds value to patients and their families in terms of rapport building with the palliative care team, smooth transitions of care and an opportunity to receive symptom control and supportive care concurrently during cancer treatment. There is a value addition to oncologists in terms of having a partner in the care process whom they can trust, work together and share responsibilities. According to the reciprocity norm, the benefit should be returned, and one who gives the benefit should not be harmed (62). Oncologists participating in the study (55) felt that palliative care providers should feel valued. According to the oncologists, requesting palliative care providers to be part of the oncology team and inviting them to participate in joint clinics might improve family acceptance of palliative care. Families may identify them as part of the oncology services (55). These align with earlier findings corresponding to power relationships and cost. Inviting palliative care providers to be part of the oncology team represents a form of power relationship to avoid a mixed message delivered to patients and their families, which oncologists identified as a cost of palliative care referral.