Expectations and barriers to the utilization of specialist palliative care services among persons living with cancer in Ghana: an exploratory qualitative study

Abstract

Background:

The need for palliative care among patients living with cancer is increasing globally. This need is far greater in resource-constrained settings like Ghana where there is a high unmet need for palliative care services. Consequently, there are lapses in the current palliative care regime, thus, resulting in suboptimal utilization.

Objective:

The study aims to explore patients living with cancer’s expectations of palliative care services and examine the barriers that impede palliative care utilization.

Design:

Descriptive exploratory qualitative design.

Methods:

A total of 15 patients living with cancer and receiving treatment in a tertiary health facility were purposively sampled to participate in this study. Semi-structured interviews were conducted. The data were transcribed and inductively analysed following Collaizi’s qualitative analysis framework.

Results:

From the analysis, the findings were grouped under two main categories: perceived expectations and barriers to utilizing palliative care. The participants expected to receive meaningful communication about their condition and prognosis; they also expected to be actively involved in palliative care decision-making. Regarding the barriers, the following themes emerged: financial constraints, unfavourable health appointment schedules, problems with the distance to the health facility, poor referral and follow-up from oncology specialists and being unaware of the availability of palliative care services.

Conclusion:

In conclusion, there is a need to actively involve patients and their families in all decision-making along the continuum of palliative care service delivery. The study underscores the need for Ghana to implement an integration of palliative care services in primary healthcare facilities to avert the challenges that distance to tertiary healthcare facilities poses to palliative care utilization. Service providers must implement awareness programmes to enable patients to better comprehend palliative care services.

Keywords

cancer healthcare services palliative care qualitative research utilization

Background

Palliative care is recognized as a human right that should be accessible to all persons who may require it throughout the illness course.^1,2 This approach to health care seeks to improve the quality of life of persons and families living with life-threatening health conditions through the prevention and management of pain and suffering.³ Hence, palliative care plays a critical role in cancer management. Available evidence suggests that the need for palliative care is increasing across the globe.⁴ This increasing need for palliative care has been attributed to the aging of populations and the rising burden of non-communicable diseases and some communicable diseases.⁵ Yet, there is a high unmet need for palliative care utilization.

According to the World Health Organisation, 56.8 million people are estimated to be in need of palliative care services each year; however, only 14% of these people receive them.⁶ Half of this estimated need for palliative care is reported among those living in Africa.⁶ Ghana, a country located in Africa, is among the 20 countries that are classified as having an isolated palliative care service provision.⁷ This means that there are bound to be significant challenges that will impede both service provision and care utilization. The concept of palliative care is evolving in Ghana and its services are now available to patients and families diagnosed with cancer, mainly on an outpatient basis. Currently, only three hospitals in Ghana are providing palliative care services: Korle Bu teaching hospital, Greater Accra regional hospital (Ridge) and Komfo Anokye Teaching Hospital (KATH).

Earlier theories of healthcare utilization have shown that healthcare utilization is influenced by multiple factors. For instance, Andersen and Newman’s healthcare utilization theory posits that a combination of predisposing factors (i.e. characteristics of the individual), enabling factors (i.e. systemic or structural factors) and need factors (i.e. type and severity of illness) intersect to influence an individual’s uptake of a health intervention.⁸ Previous studies^1,9 have shown that predisposing factors such as age, income level, level of education, and ethnicity contribute substantially to palliative care access and utilization. Also, enabling factors such as rural residency has been found to be a common barrier to palliative care utilization.¹⁰ Some studies have also revealed that individuals with haematological malignancies tend to have less access to and utilization of palliative care compared to those with solid malignant tumours.^1,11 While these studies provide some insights, there are concerns about the role of the patient’s expectations about palliative care and other culturally rooted factors that serve as barriers to palliative care utilization, particularly within the context of a developing country like Ghana.

The following questions remain unanswered in the current body of knowledge on palliative care utilization in Ghana: (a) What are the expectations of patients living with cancer receiving palliative care services in Ghana? and (b) What factors serve as barriers to palliative care utilization among patients living with cancer in Ghana? Some studies including Salifu et al.,¹² Clark et al.¹³ and Bonsu and Ncama¹⁴ have attempted to answer aspects of this question. For instance, in Salifu et al.’s study,¹² it was revealed that lack of access to professional care and a lack of resources constituted barriers to the utilization of palliative care services. However, Salifu et al.’s study¹² was limited to home-based palliative care. This means that the findings may not reflect the situation of specialist palliative care provided at the healthcare facility on an outpatient basis. In Clark et al.’s study,¹³ the authors identified barriers to the provision of palliative care in developing countries (i.e. allocation of government funding for palliative care, availability of palliative care services and access to opioid pain relief). These barriers are at the provider or national level; however, this study is at the micro level that is looking at what will not make women go for palliative care services. Moreover, the two studies did not explore patients’ expectations of palliative care. Thus, presenting a knowledge gap that must be filled.

This study, therefore, aims to explore patients living with cancer’s expectations of palliative care services and examine the barriers that impede the utilization of palliative care services. The findings from this study provide valuable insights that better support the implementation of policies and interventions to improve palliative care utilization among people living with cancer in Ghana.

Methods

Operationalization of term

In the context of this study, palliative care refers to hospital-based specialist palliative care services. That is, care is provided by a multidisciplinary team consisting of a physician, palliative care nurse specialist, clinical psychologist, social worker, chaplain and pharmacist who work collaboratively to provide holistic care and support on an inpatient and outpatient basis. The palliative care team also conducts home visitation to clients who request for it.

Design

We employed a descriptive exploratory qualitative design. The study includes patients living with cancer from different socio-economic, demographic and ethnic background. Moreover, the design did not limit the study to patients with a particular type of cancer.

Setting

The study was conducted at the oncology directorates of the KATH. The oncology unit at KATH is an outpatient department that provides care to patients in areas ranging from primary, secondary and tertiary care.¹⁵ The directorate is composed of 22 nurses, 8 doctors, 6 healthcare assistants, 2 pharmacists, 2 pharmacy technicians, 5 physicists and 3 radiotherapists. On average, 80–100 patients are seen a day, with about 50% presenting with advanced or late-stage disease. Health services provided range from chemotherapy, scheduled reviews, radiotherapy, basic palliative care services and referrals to specialist palliative care clinics. Healthcare professionals, specifically doctors, refer patients to the specialist palliative care unit, which is under the family medicine directorate. The unit was established in 2015 to provide symptom management, emotional and spiritual support and advanced life planning. The specialist palliative care team consists of specialist nurses (n = 5), a general nurse, palliative care doctors (n = 3), consulting social worker (n = 1), chaplain (n = 1), and clinical psychologist (n = 1). This team receives an average of 10 referrals per week and about 40 patients per month; 90% of these patients are referred by the oncology unit. There are also occasional home visits done at the request of the patients.

Sampling and sample size

A purposive sampling technique was used to recruit the participants based on a set of inclusion criteria: (a) they must be adults, that is, 18 years or older and (b) patients with histology-confirmed cancer diagnosis receiving treatment for at least 6 months at the oncology unit. Individuals who did not meet the inclusion criteria were automatically excluded during the screening process. A total of 27 patients were screened for their eligibility to participate in the study. The screening result showed that only 21 of them met the inclusion criteria. Hence, six of the patients were excluded from the first phase of the recruitment process. By the 11th interview, there was no new analytical information emerging from the interview. Thus, marking the point of data saturation. Four additional interviews were conducted to confirm that the point of saturation had indeed been reached. Therefore, a total of 15 patients with histology-confirmed cancer diagnoses receiving treatment for at least 6 months at the oncology unit participated in this study (see Table 1).

Table 1.

Summary of emerging themes and sub-themes.

Themes	Sub-themes
Perceived expectations of palliative care services	Expecting meaningful communication about their condition and prognosis
Perceived expectations of palliative care services	Expecting to be actively involved in palliative care decision-making
Barriers to palliative care service utilization	Poor referral to the palliative care clinic
	Financial constraints
	Problem with the distance to the health facility
	Unfavourable appointment schedule and multiple visits
	Being unaware of the availability of palliative care services

Recruitment process

The researchers gained gatekeeper permission from the study setting with an introductory letter and copies of an ethical approval letter, following which a pre-interview interaction with the cancer care team on the study was conducted. The second author (AAP) met the patients at the KATH Oncology Department to assess eligibility and invite them to participate in the study. Specifically, AAP read to each potential participant the study information sheet, which included the goals of the study, what is required of each participant and a reminder that participation was voluntary. Participants were given 1 week to consider participation. The interviews were carried out between September 2021 to February 2022. Oral and written consent were obtained from each participant before the interview.

Data collection tool and process

A semi-structured interview guide was used to facilitate the face-to-face interviews conducted. The guiding questions were based on previous literature^9,12,13 and were adapted for use in the sociocultural context of Ghana. Experts in palliative care reviewed the interview guide to ensure that it captured expectations and barriers to the utilization of palliative care in Ghana (additional files). The first author (ABBM), a Ghanaian qualitative researcher with clinical experience in oncology and palliative care, reviewed the guiding questions for sociocultural appropriateness. Before the actual study, the interview guide was piloted with patients diagnosed with cancer (n = 3) at a private cancer centre to ensure the appropriateness of the guiding questions. The outcome of the pilot study was used to address practical concerns of the guiding questions accordingly. The results of these pilot interviews were not included in the main results of this study. The interview guide asked questions about the background characteristics of the participants, their perceived expectations of receiving palliative care and the barriers that they had experienced in relation to the utilization of palliative care service. The interviews were conducted by the second author (AAP), a nurse with extensive clinical and academic experience in oncology and palliative care practice. As a researcher, AAP speaks and writes both ‘Twi’ and English languages. SAB does not work at KATH; hence she had no direct influence on the study setting and the participants. For interviews conducted in local language (n = 13), the researcher used vignette technique in the form of a story to present a hypothetical situation/scenario around palliative care, to which participants responded thereby revealing their experiences of expectations and barriers to the utilization of palliative care. The vignette technique is a method that can elicit experience, perceptions, opinions, beliefs and attitudes from responses or comments to stories depicting scenarios and situations.¹⁶ Using vignette, reference was made to palliative care and the term was explained. The participants decided on the time and venue for the interview. Venue for the interviews were hospital office (n = 14) and home (n = 1) and were based on participants’ preference. Interview languages were Twi (n = 13) and English (2). The date and time for the interviews were based on participants’ preferences, and interviews lasted for an average of 40 min. All of the interviews were recorded using an audio-tape recorder. Prior to each interview, the rights of the participants were reiterated to obtain their oral consent, although they had already provided written consent.

Analysis

The process of analysis began with the verbatim transcription of both the English and local language audio-recorded data. For the interviews conducted in Twi, two expert translators were independently contracted to translate verbatim using back translation process. The two transcribers signed an undertaking to not disclose the information contained in the transcript with members outside of the research team. Upon the completion of the transcription, the transcripts were imported into QSR NVivo-12 (manufactured by QSR International – Lumivero, Massachusetts, US) for data management and coding. Collaizi’s framework for qualitative analysis was followed.¹⁷ The authors read the transcript several times to familiarize themselves with it. JO then conducted the preliminary inductive coding using the ‘nodes’ function in QSR NVivo-12. The results from the inductive coding were discussed among the authors to categorize the common emerging patterns as themes under the major categories of perceived expectations and barriers to palliative care utilization. Key quotations were extracted to reflect the various themes (Figure 1).

Figure 1.

Data analyses flow chart.

Rigour and trustworthiness

Ensuring rigour and trustworthiness is essential to the quality and authenticity of qualitative research.¹⁸ None of the authors had any competing interests. This helped the team to maintain a high level of reflexivity to prevent any personal biases and interests from influencing the responses of the participants. Also, the authors conducted member checking with three of the participants 1 week after the completion of the transcription and initial analysis of the data. This was done to ensure the confirmability of the findings. From the member checking, none of the participants reported any new information or counter the initial responses. To ensure credibility, verbatim responses from the participants were used. Also, the authors maintained an audit trail of the information sheet, signed consent forms and study instruments for confirmability purposes. A detailed description of the methodology and study setting was provided to ensure the transferability of the study to similar contexts and potential replication of the study by future researchers. We followed O’Brien et al.’s Standards for Reporting Qualitative Research.¹⁹

Results

From the analysis, the findings were grouped under two main categories: perceived expectations and barriers to utilizing palliative care. The participants expected to receive adequate information about their condition and prognosis; they also expected to be actively involved in palliative care decision-making. Regarding the barriers, the following themes emerged: financial constraints, unfavourable health appointment schedules, problems with the distance to the health facility and being unaware of the availability of palliative care services (see Table 1).

Perceived expectations of palliative care services

Patients receiving palliative care have some expectations about the nature of the care that they receive. This theme describes the perceived expectations of the participants in detail. Mainly, the participants had two expectations; that is, the expectation of receiving meaningful information and communicating about their condition and the prognosis, and an expectation for them and their families to be actively involved in all decisions relating to palliative care service delivery.

Expecting meaningful communication about their condition and prognosis

A recurring pattern was the expectation to receive meaningful information and communicating about the disease condition and the prognosis. The participants acknowledged that they lacked a comprehensive understanding of their condition. Hence, they struggled to manage their symptoms at home. Therefore, they expected that receiving palliative care services would offer them a deeper understanding of their situation and prognosis to assist them to make informed decisions and plans about treatment choices. In their perspective, they lacked information about the stage of their cancer and whether it was treatable. Hence, the participants alluded to the point that it was their expectation that palliative care service providers would maintain open communication with them throughout the course of their condition. This assertion is reflected in the quote of one of the participants: ‘For me, I expect the health providers to have an open discussion with me about the stage and progress of my disease. As I speak to you, I don’t fully understand my condition. I don’t know whether it is curable or not. Sometimes, after the palliative chemotherapy, I experience some discomforts which I think are the side effects. So, it is my expectation that they will provide me with adequate information so that I know what to expect at the point of the treatment and care’ (Participant 3, advanced breast cancer patient).

Some of the participants also stated that the family caregivers are often confused about what to do when they [the patients] are experiencing symptoms at home. Therefore, it was expected that palliative care would provide an opportunity for the family caregivers of patients to be provided with adequate information about the patients’ condition and the caring role that must be delivered. One of the participants expressed this view: ‘I wish my son could be educated on how to manage my condition at home because he does not know what to do when I am in crises. So, for me if you ask me about my expectations, I will say that I expect the palliative care people to divulge all relevant information to me and my son’ (Participant 13, head and neck cancer patient).

Expecting to be actively involved in palliative care decision-making

The study revealed that the participants expected to be actively involved in every phase of healthcare decision-making. From the perspective of the participants, palliative care should be about them; that is, the care provided must be person centred. The participants, expect to be involved in discussions regarding the treatment options to enable them to make an informed decision. According to the participants, actively involving them in palliative care decision-making is a sign of respect for their rights and dignity as patients. For instance, one of the participants narrated that: ‘I wish the doctors will involve me when making the decisions about the treatment. I do not know what informs the prescribed treatment. They do not talk to me about the treatment. They will only write and say go and see the nurses. Whether I can afford it or I may prefer an alternative treatment, they do not know and care. They only decide and I think it is wrong. I have no say in my own treatment? . . .This is about me and I should be respected as an individual who also has a choice. At least, they should give me the chance to choose the treatment I want’ (Participant 3, advanced breast cancer patient).

Another participant also stated that they expected to be actively involved in palliative care decision-making because not all patients can afford certain treatment regimens. Therefore, dialoguing with patients to understand their financial strength to afford treatment options emerged as an essential expectation. This perspective is typified in a quote from one of the participants:

The doctors only write the prescription for me to go and buy the chemotherapy drugs without asking if I can afford or not. They do not even discuss the treatment options. Nothing. . .I am not considered at all when it comes to decisions about my own treatment. I want to be part of this process. (Participant 1, metastatic follicular carcinoma)

Barriers to palliative care service utilization

This theme is an embodiment of the emerging barriers that hinder or impede patients living with cancer’s utilization of palliative care services in Ghana. The emerging barriers included financial constraints, unfavourable appointment schedules, problems with the distance to the health facility, poor referral and follow-up from oncology specialists and being unaware of the availability of palliative care services.

Financial constraints

The participants identified financial constraints as a major barrier to the utilization of palliative care services. Mainly, this financial constraint was attributable to the high cost of transportation to the healthcare facility for care and treatment. Some of the participants had to visit the healthcare facility more than once a week. This situation exacerbated their health expenditure thereby discouraging them from utilizing palliative care services: ‘I go there another day in the week. The distance I travel is far and I have to pay lorry fare to Kumasi twice a week. It is expensive for me so I have gone there [palliative care clinic] only twice since I was referred some months ago’ (Participant 2, advanced breast cancer patient).

The distance from my house to the hospital is too far. I have to spend a lot of money on transportation to the hospital. (Participant 13, head and neck cancer patient)

Some of the participants also reported that palliative care services are not captured as part of the benefits package of the National Health Insurance Scheme. Therefore, they had to make some payments for treatments and laboratory tests, which in their view was expensive. This situation places a significant burden on their finances, hence, making it difficult for them to utilize palliative care services. One of the participants shared this view: ‘I cannot afford to come to the facility another day in the week. The cost will be too much for me and my daughter who accompanies me here. The health insurance does not cover the cost of lab test and other treatments of that service [Palliative care]. So, it becomes difficult for me to show up for all of my hospital appointments’ (Participant 6, gastric cancer patient).

Problem with the distance to the health facility

Participants from this study reported that the distance to the health facility was far from where they resided. KATH is the only tertiary health facility within the middle zone of Ghana that provides palliative care services. This means that the participants had no option of receiving palliative care services from primary healthcare facilities that are much closer to their homes. Rather, they had to travel a long distance to utilize palliative care services. This, according to the participant, was inconvenient and also a significant strain on their finances; hence, impeding their uptake of palliative care services. The following quotes reflect this finding:

Distance is challenge. Over here, it is only Komfo Anokye that offer palliative care to us. So, it means that I have no choice because there is no facility closer to me that provides this kind of services. So, I have to travel from Amansie to Komfo Anokye for treatment. It is such an inconvenient situation. With all the pains that I experience, I have to wake up early so that I can get to the hospital on time for my appointment. So, on days that I think I would be late, I will not come to the hospital at all. (Participant 8, cervical cancer patient)

Another participant shared this view:

The distance from my house to the hospital is too far. . . . . . . because of the long distance, I need someone to accompany me else, if I experience any symptoms along the way, I won’t have anyone to help me. Because of that, I do not come to the palliative clinic at all. (Participant 13, head and neck cancer patient)

Unfavourable appointment schedules and multiple visits

Unfavourable appoint schedules and multiple visits emerged as another barrier to the utilization of palliative care among patients living with cancer in Ghana. The participants noted that it is the norm for the health facility to schedule appointments where the patient would report back to the facility for a review, treatment or some other symptomatic and supportive care. However, these multiple appointments and visits were considered to be unfavourable and inconvenient to the patients. This assertion was reflective in a majority of the transcripts (9 out of 15).

My biggest challenge has to do with the multiple appointments and visits. Because they [PC service providers] don’t want us to delay at the facility, they schedule appointments for us. That is good but the challenge is that the schedules add up to our already existing schedules with the oncology clinic as well as other chronic care clinic. These are not convenient to us at all. Like you are always visiting the clinic. Sometimes, you have to come to the facility like three to four times in a month. That is really stressful and creates a lot of inconvenience. (Participant 11, colorectal cancer patient)

The participants expressed that this unfavourable appointment schedules were due to the point that the health service providers fail to include them in palliative care decision-making. Hence, the unfavourable appointment schedules and multiple visits interfered with other daily socio-economic activities that the patient had to perform. This is what one of the participants had to say: ‘They don’t involve us in the decision-making. They just schedule any date and time and tell you to come to the facility. We also have other personal business to do which mostly coincide with these schedules. That is not good because I may not be having money at certain times. So, if I have to be coming to the facility too often, then it is going to affect my readiness to come for care’ (Participant 7, prostate cancer patient).

Poor referral and follow-up from oncology specialists

Another barrier to the utilization of palliative care services among the participants was the problem of poor referral and follow-up from oncology specialists. A review of the electronic medical records of the participants showed that patients were diagnosed with advanced metastatic disease (Stage III/IV) and were managed in palliative approach, however, the medical records showed a formal referral of only three participants to the palliative care clinic. Yet, in the interviews, the three participants expressed that they did not go for the palliative care services. According to the participants, the oncology clinicians did not conduct any follow-ups to know how the patient was faring with respect to the palliative care services that was provided. One participant narrated: ‘I have never been referred to anywhere for any kind of care. I receive all my care her at this Oncology clinic’ (Participant 3, advanced breast cancer patient).

Another participant expressed that: ‘After the doctor gave me the referral to go to the Polyclinic, he has not said anything about it again or asked if I have been there so I have not gone to that clinic [palliative care clinic] again’ (Participant 12, nasal and sinus cancer patient).

Being unaware of the availability of palliative care services

Although all of the participants were receiving palliative care as recorded in their medical records, some of them were unaware that the care that they were receiving constituted palliative care (PC). To them, they were receiving treatment for their disease, hoping for a cure. This is reflective in the quote below:

This is the first time I am hearing of palliative care. They didn’t tell me that was the care that they were providing. I don’t I am receiving treatment to cure the disease. (Participant 12, nasal and sinus cancer patient)

Another participant stated:

Wow! I am surprised because this is the first, I am getting to know of this thing. All this while, I thought it was the usual treatment that I was receiving. No one told me I am been managed in a palliative way. (Participant 14, colon cancer patient)

Discussion

Palliative care service utilization is quintessential to the attainment of universal health coverage. However, in resource-constrained settings like Ghana, there is low utilization of palliative care services. The study explored patients living with cancer’s expectations of palliative care services and examined the barriers that impede the utilization of palliative care services. Mainly, people living with cancer’s expectations of palliative care services bothered issues of communication and decision-making. The study revealed that the participants yearned to be informed about the stage and prognosis of their condition as well as any other relevant information about their disease experience. This result aligns with studies from other contexts that have shown that patients prefer that palliative care service providers fully disclose information about their diagnosis and prognosis.^20,21 Perhaps, the result could be explained from the perspective that adequate information about the prognosis enables the patient to develop realistic expectations about the care outcomes.²² Also, providing patients with adequate information about their condition throughout the palliation process is likely to result in trust building between the patient and the palliative care service provider. This trust is likely to promote the optimal utilization of palliative care services.

Regarding the expectation of decision-making, the study revealed that patients living with cancer expected palliative care service providers to involve them in every decision that must be made in relation to their care and treatment options. This expectation is in consonance with the principle of palliative care as a human right.^1,2 As a human right, the involvement of patients in all decision-making processes in relation to palliative care services signifies respect for the dignity and autonomy of the patient. The results, thus, underscore the importance of a person-centred approach to providing palliative care services. This is imperative to ensure that the needs of the patient are prioritized, and that they are actively involved throughout the disease trajectory. Moreover, actively involving the patient in palliative care decisions would eliminate barriers like unfavourable or inconvenient appointment schedules. Appointments would be based on the needs and preferences of the patient, and not the service provider.

Financial constraint was one of the major barriers to palliative care utilization. The high cost of transportation and other ancillary health expenditures, including the cost of laboratory tests, impeded the utilization of palliative care services among patients living with cancer. Similar findings have been reported in Nigeria,^23,24 Ghana¹² and Malawi.²⁵ The result is further corroborated by a systematic review²⁶ that identified the high cost associated with transportation as a major barrier to palliative care service utilization among older adults. Already, the burden of cancer results in productivity losses that significantly affect the finances of people living with the disease.²⁷ Hence, it becomes difficult for patients to afford the cost of transportation and other palliative care service-related expenditures. Moreover, the current health insurance regime of Ghana does not cover palliative care services. The implication is that patients have to pay for palliative care services through out-of-pocket payments along with paying for other related expenditures like transportation. This situation presents a threat to palliative care service utilization in Ghana.

The study revealed that patients living with cancer who considered the distance to healthcare facilities problematic experienced challenges in relation to palliative care service utilization. Having to cover long distances to access and use palliative care services exacerbated the health expenditure of the patients, and further created inconveniences. The result aligns with a previous study²⁸ that was conducted in rural communities in Canada that showed that having to drive long distances to access palliative care services was a barrier to its utilization. This result highlights the need for Ghana to integrate palliative care service provision at the primary healthcare level since that level of care is in close proximity to patients. Integration of palliative care at the primary healthcare level will reduce, if not eliminate, the contribution of distance as a barrier to palliative care service utilization by enhancing accessibility to palliative care services.

It is evident from the study that not all patients living with cancer receiving palliative care services are aware of the care that is being provided to them. The result is in agreement with the findings of a related study from Singapore²⁹ that revealed that people with advanced cancer were unaware of palliative care services. Unawareness of palliative care is likely to exacerbate non-compliance with outpatient appointment schedules.³⁰ This finding suggests a failure on the part of service providers regarding the level of communication they have with the patient. It is, therefore, imperative for palliative care service providers to have an open communication with the patient regarding the type of care being provided. Relatedly, the study showed that poor referral and lack of follow-up from oncology specialists challenged the utilization of palliative care services. Thus, underscoring a need for open and timely discussions with patients who would require palliation.³¹

Strengths and limitations

Using an exploratory qualitative design is one of the strengths of this study as it was able to unearth why patients living with cancer experience suboptimal utilization of palliative care services. Our study sample revealed new insights into an essential yet under-researched subject. Another strength of the study lies in its methodological rigour which allowed the sampling of patients of varied socio-demographic characteristics. Nevertheless, there are some limitations that should be considered in the interpretation of the findings. As a qualitative study, the findings cannot be extrapolated to the entire country. Also, the non-inclusion of caregivers and service providers to corroborate the patients’ perspectives provides a limited understanding of the nuances of palliative care service utilization. Future studies can, therefore, include all key stakeholders in the continuum of palliative care service utilization.

Conclusion

Patients living with cancer experience several barriers that limit their utilization of palliative care services. In conclusion, there is a need to actively involve patients and their families in all decision-making along the continuum of palliative care service delivery. The study underscores a need for Ghana to implement an integration of palliative care services in primary healthcare facilities to avert the challenges that distance to tertiary healthcare facilities poses to palliative care utilization. Service providers must implement awareness programmes to enable patients better comprehend palliative care services. Further research is needed to assess the extent to which patients’ expectations predict the utilization of palliative care services.

Supplemental Material

sj-doc-2-pcr-10.1177_26323524231193042 – Supplemental material for Expectations and barriers to the utilization of specialist palliative care services among persons living with cancer in Ghana: an exploratory qualitative study

Supplemental material, sj-doc-2-pcr-10.1177_26323524231193042 for Expectations and barriers to the utilization of specialist palliative care services among persons living with cancer in Ghana: an exploratory qualitative study by Adwoa Bemah Boamah Mensah, Abena Agyekum Poku, Kofi Boamah Mensah, Joshua Okyere, Maurice Mikare, Felix Apiribu, Emelia Osei Boakye and Joe-Nat Clegg Lamptey in Palliative Care and Social Practice

Supplemental Material

sj-docx-1-pcr-10.1177_26323524231193042 – Supplemental material for Expectations and barriers to the utilization of specialist palliative care services among persons living with cancer in Ghana: an exploratory qualitative study

Supplemental material, sj-docx-1-pcr-10.1177_26323524231193042 for Expectations and barriers to the utilization of specialist palliative care services among persons living with cancer in Ghana: an exploratory qualitative study by Adwoa Bemah Boamah Mensah, Abena Agyekum Poku, Kofi Boamah Mensah, Joshua Okyere, Maurice Mikare, Felix Apiribu, Emelia Osei Boakye and Joe-Nat Clegg Lamptey in Palliative Care and Social Practice

Footnotes

Acknowledgements

We acknowledge all our participants for their time and participation.

Declarations

ORCID iD

Joshua Okyere

Supplemental material

Supplemental material for this article is available online.

References

D’Angelo

Di Nitto

Giannarelli

, et al. Inequity in palliative care service full utilisation among patients with advanced cancer: a retrospective cohort study. Acta Oncologica 2020; 59: 620–627.

Gwyther

Brennan

Harding

Advancing palliative care as a human right. J Pain Symptom Manage 2009; 38: 767–774.

World Health Organization. WHO definition of palliative care, https://www.who.int/cancer/palliative/definition/en/ (2020, accessed December 2022).

Agom

Onyeka

Iheanacho

, et al. Barriers to the provision and utilization of palliative care in Africa: a rapid scoping review. Indian J Palliat Care 2021; 27: 3.

Connor

SR.

The global atlas of palliative care at the end of life: an advocacy tool. Eur J Palliat Care 2014; 21: 180–183.

World Health Organization. Palliative care: Fact sheet, https://www.who.int/news-room/fact-sheets/detail/palliative-care (2020, accessed December 2022).

Clark

Baur

Clelland

, et al. Mapping levels of palliative care development in 198 countries: the situation in 2017. J Pain Symptom Manage 2020; 59: 794–807.

Babitsch

Gohl

Von Lengerke

Re-revisiting Andersen’s behavioral model of health services use: a systematic review of studies from 1998–2011. GMS Psycho-Social-Med 2012; 9: 1–15.

Hugar

Lopa

Yabes

, et al. Palliative care use amongst patients with bladder cancer. BJU Int 2019; 123: 968–975.

10.

Elk

Felder

Cayir

, et al. Social inequalities in palliative care for cancer patients in the United States: a structured review. Semin Oncol Nurs 2018; 34: 303–315.

11.

Hui

Kim

Kwon

, et al. Access to palliative care among patients treated at a comprehensive cancer center. Oncologist 2012; 17: 1574–1580.

12.

Salifu

Almack

Caswell

‘My wife is my doctor at home’: a qualitative study exploring the challenges of home-based palliative care in a resource-poor setting. Palliat Med 2021; 35: 97–108.

13.

Clark

Centeno

Clelland

, et al. How are palliative care services developing worldwide to address the unmet need for care? London: WHPCA, 2020.

14.

Bonsu

Ncama

BP.

Recognizing and appraising symptoms of breast cancer as a reason for delayed presentation in Ghanaian women: a qualitative study. PLoS One 2019; 14: e0208773.

15.

Kusi

Boamah Mensah

, et al. Caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer in Ghana. PloS One 2020; 15: e0229683.

16.

Faia

MA.

The vagaries of the vignette world: a comment on Alves and Rossi. Am J Sociol 1980; 85: 951–954.

17.

Morrow

Rodriguez

King

Colaizzi’s descriptive phenomenological method. Psychologist 2015; 28: 643–644.

18.

Okyere

Kissah-Korsah

Opportunities for integrating palliative care in Ghana. SAGE Open Nurs 2022; 8: 23779608221143271.

19.

O’Brien

Harris

Beckman

, et al. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med 2014; 89: 1245–1251.

20.

Rao

Ekstrand

Heylen

, et al. Breaking bad news: patient preferences and the role of family members when delivering a cancer diagnosis. Asian Pac J Cancer Prev 2016; 17: 1779–1784.

21.

Harding

Nair

Ekstrand

Multilevel model of stigma and barriers to cancer palliative care in India: a qualitative study. BMJ Open 2019; 9: e024248.

22.

Ghandourh

WA.

Palliative care in cancer: managing patients’ expectations. J Med Radiat Sci 2016; 63: 242–257.

23.

Kolawole

Sleiman

Olafimihan

KO.

Palliative care in developing countries: University of Ilorin teaching hospital experience. BMJ Supportive Palliat Care 2011; 1: A16.

24.

Ndiok

Ncama

Assessment of palliative care needs of patients/families living with cancer in a developing country. Scand J Caring Sci 2018; 32: 1215–1226.

25.

Mkwinda

Lekalakala Mokgele

Palliative care needs in Malawi: care received by people living with HIV. Curationis 2016; 39: 1–8.

26.

Suntai

Won

Noh

Access barrier in rural older adults’ use of pain management and palliative care services: a systematic review. Am J Hosp Palliat Care 2021; 38: 494–502.

27.

Luengo-Fernandez

Leal

Gray

et al. Economic burden of cancer across the European Union: a population-based cost analysis. Lancet Oncol 2013; 14: 1165–1174.

28.

Duggleby

Penz

Leipert

, et al. ‘I am part of the community but. . .’ The changing context of rural living for persons with advanced cancer and their families. Rural Remote Health 2011; 11: 90–101.

29.

Ozdemir

Malhotra

Teo

, et al. Palliative care awareness among advanced cancer patients and their family caregivers in Singapore. Ann Acad Med Singapore 2019; 48: 241–246.

30.

Porta-Sales

Codorniu

Gómez-Batiste

, et al. Patient appointment process, symptom control and prediction of follow-up compliance in a palliative care outpatient clinic. J Pain Symptom Manage 2005; 30: 145–153.

31.

McCaughan

Roman

Smith

, et al. Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative study. BMC Palliat Care 2018; 17: 1.

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