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Chronic kidney disease (CKD), and the need for healthcare services to manage CKD, are increasing internationally.1 The Global Burden of Disease 2010 study identified chronic kidney failure as one of the three causes of death with the highest increase from 1990 to 2010.2 In New Zealand, the incidence of new patients entering the renal replacement programme is increasing by 10–12% per annum.3 Māori and Pacific peoples are over-represented among those diagnosed with CKD. For example, from the Australia & New Zealand Dialysis and Transplant Registry (ANZDATA), 2,649 people were referred for renal replacement therapy in New Zealand between 2009 and 2013. Of these, 512 (19%) reported at least one Pacific ethnicity. This is at least 2.5 times the proportion of Pacific peoples in the total population (7%).3,4

Information about the impact of CKD (not just mortality, but health impact on the individual and their family) on the Pacific community is limited. Currently, a longitudinal cohort study is underway in New Zealand.1 This study has recruited participants from three DHB regions (Counties Manukau, Hawkes Bay and Southern DHB). Of these, more than 18% report one or more Pacific ethnicities. This study has found that Pacific participants are more likely than non-Pacific participants to report having the “same or better health status” after one year of dialysis treatment than at baseline.5 It could be that the Pacific peoples’ access to nephrology services is timely and well-integrated, or that Pacific peoples’ view of health and health outcomes are different to those of non-Pacific people. Alternatively, Pacific peoples present for healthcare later, are less well and have more symptomatic relief and gain with initiation of treatment.

This research aimed to describe the pathways followed by Samoan patients into, and within, nephrology services in New Zealand.

Aim

To describe the perspectives of health professionals and Samoan patients on access pathways to nephrology services in New Zealand.

Methods

The research project was a collaborative descriptive and exploratory multiple-case study, with data collected from three participating sites though the collaborating institutions (the University of Otago, Middlemore hospital nephrology unit and the Manukau super-clinic).

Multiple sources of data from each site allowed for within-site data triangulation. Data was collected in Dunedin and Auckland from available organisational documents, interviews with a range of health professionals, Samoan patients, and a review of the literature.

Participants were recruited using the rolling snowball method.6 Participants were approached by the hospital clinicians on the research team’s behalf. Those who agreed to meet with the researcher (RF) collecting the data were provided with further information through an information sheet. Each participant signed a consent form prior to their interview. All patients were interviewed at the renal satellite clinics. Health professionals were interviewed in the hospital setting.

The researcher received training on cultural protocols and conducting interviews with Samoan participants. All interviews were conducted face-to-face, either in English or in the Samoan language, determined by the preference of the interviewee. All interviews were audio-recorded with field notes taken. The data set was de-identified to maintain confidentiality of participant responses. Data were analysed to determine emerging themes and pathways identified were used to develop a mapped pathway for access to services.

Ethics approval was obtained from the University of Otago Human Research Ethics Committee (H15/101).

Results

Six health professionals (two nephrologists and four renal specialist nurses) and four patients were interviewed. All who were approached to be involved accepted the invitation. Seven interviews were conducted in English, and three patients were interviewed in Samoan. Interviews were on average approximately 45 minutes each.

Health professionals perspectives

Stage 1: Monitoring

Health professionals described the pathways to nephrology services being followed by Samoan patients as usually beginning with the patient consulting their primary healthcare service provider, a general practitioner (GP) (see Figure 1). If the GP discovers that they have chronic kidney disease according to e-criteria,7 they would refer them to the nephrologist where indicated.8 Nephrologists prefer to see patients at least a year or two before they require renal replacement therapy (RRT). The patient would then have a number of follow-up appointments with the nephrologist to monitor the progression of their kidney functions.

Figure 1: Summary diagram of Samoan patients’ pathways and access to renal services.

c

Stage 2: Planning

When a patient starts experiencing symptoms relating to CKD (nausea, pruritus, restless legs and dyspnoea)7 a decision is made between the patient and the renal team as to whether they would want to have RRT. If the patient declines, they will continue to have an active supportive care pathway offered by the renal team and the GP, to manage uraemic symptoms. If the patient decides to accept treatment, they will then be referred to a pre-dialysis educator. It is at this stage that the patient discusses with the educator about the management of end-stage kidney disease (ESKD), including advance care planning, what RRT is and what options for dialysis are available. More meetings are arranged for the patient with the renal team, to discuss these issues, including the type of modality they prefer. Early referral clearly helps to facilitate the education and awareness of renal replacement therapy. After choosing the type of dialysis (peritoneal or haemodialysis) they wish to receive, surgery is arranged for either the formation of an arterial-venous (AV) fistula (for haemodialysis) or insertion of a peritoneal dialysis catheter (for peritoneal dialysis). After access has been established, the pre-dialysis educator will refer the patient to the primary dialysis nurse (who is responsible for training the patient). They also continue to be reviewed by their nephrologist.

Stage 3: Dialysis

Once an agreed start time for dialysis is confirmed, dialysis training commences at the dialysis unit. The training is comprehensive, and the duration is tailored to the patient’s ability to perform dialysis independently. This is easier to establish with peritoneal dialysis. The preference is for patients to be trained for home haemodialysis. There are a number of factors that influence the decision around haemodialysis, including socio-economic factors, availability of a helper, the individual’s comorbidities and ability to learn and undertake dialysis safely on their own. Not all patients who undertake dialysis training programme end up with home-based dialysis. Some remain in the hospital for their dialysis, while others are transferred to a satellite unit.

Stage 4: Follow up

Individuals dialysing in-centre (hospital or satellite units) continue to have regular nephrology (medical) reviews as well as ongoing monitoring by the dialysis staff. This option is only available for those on haemodialysis, and not for peritoneal dialysis. For those who go home (home dialysis), the dialysis nurse is present for the first home session. There are regular home visits by the dialysis nurse as well as regular reviews with their nephrologist.

Although these are ideal, or preferred, pathways for entering renal replacement programmes, these are not always the pathways followed for Samoan patients. Some health professionals have encountered Samoan patients coming into their nephrology service, directly from Samoa with end-stage kidney disease requiring urgent dialysis. There are patients who live in Samoa, who are admitted straight to the hospital through Accident and Emergency after arriving into New Zealand. Some patients who live in Samoa have New Zealand-based general practitioners, and would come over annually for routine primary care check-ups. During these healthcare checks, some concerns are picked up and are referred urgently to the renal team.

For those who are referred with CKD, but not yet requiring dialysis, it is not uncommon for health professionals to see them lost from the nephrology service at the pre-dialysis phase, or not attending further review. Occasionally, a patient can become lost in the system (through miscommunication between the nephrologist and the GP). Some patients seek Fofo Samoa (traditional alternative medicines) and herbal remedies, and elect to exit the planned pathway. Whichever alternative route they choose, some can present acutely requiring urgent dialysis.

Samoan patients’ perspectives

Stage 1: Monitoring

Most patients followed the pathways described by the health professionals where patients see their GPs, as their first point of contact for healthcare, prior to being referred to the nephrologist. Some patients change their GPs before being referred to the nephrologist. For others, their CKD was identified during a hospital admission related to another clinical presentation.

Stage 2: Dialysis

All participants interviewed, commenced dialysis therapy acutely rather than as a planned transition from CKD to dialysis. The pathways they took before commencing dialysis acutely varied between each person. Some were lost to follow-up after being referred to nephrology services by their GPs, while others had multiple acute admissions (either referred by their GP or self-refer). Others refused treatment until it became the only option for survival. As they did not have vascular access for haemodialysis, dialysis access was initially via insertion of a central venous dialysis catheter.

A patient ignored warnings from multiple health professionals in New Zealand and Samoa about his kidney condition. Even after being admitted acutely for dialysis, he did not return to continue treatment, until he was readmitted as unconscious. After regaining consciousness, he said “I asked him (doctor) how long I would have to do this (dialysis) for, and the doctor told me it was for life” (translated from Samoan). “Reflecting on what has happened from the beginning… I thought it was not something serious, and that the medicines I was given would fix it and not have to worry about it anymore. Whenever I hear ‘kidneys’, it was not something serious or important to me. I thought it was just like any other illnesses of the body, that it could be treated and done” (translated from Samoa).Once patients are stabilised, they are referred to the vascular surgeons to have an arteriovenous fistula. Once established, they either receive haemodialysis in a satellite centre, or undergo training for home dialysis.

Stage 3: Alternative pathways

Samoan patients identified alternative pathways for accessing healthcare that were not identified by the health professionals. Those who lived in Samoa would fly back and forth to New Zealand, receiving medical treatment from health professionals in both countries. Sometimes health information is not shared between the different health professionals for continuity of care. This includes communication among health professionals between Samoa and New Zealand and within New Zealand.Although the health professionals mentioned patients dropping out of follow up and seeking alternative medicines and herbal remedies, sometimes patients accessed Fofo Samoa first before seeing a GP. Once a community heard that their well-known and respected member was ill, they all visited him and offered multiple Fofo Samoa and herbal remedies. Some offered to take him to try Chinese medicine, and to see an African healer who had a spiritual approach, all of which did not work. “Even though I felt that I shouldn’t go, but I could not reject their respect… Even though I had enough of the Fofo, I could not stop their good will…I accepted what they told me to do, because of their love for me so that I may get well” (translated from Samoan). Once he went to visit his GP, he was immediately sent to A&E. “After my first dialysis, I can feel all of my suffering disappear” (translated from Samoan).

Most Samoan patients interviewed did not go through the pre-dialysis education before commencing dialysis. Instead, after being referred to the nephrologist, they were lost to follow up, did not attend clinics, and presented acutely for dialysis. One patient said “I was scared to do dialysis, I didn’t want to do it, until my health worsened”. Another said “I am a person who loves physical activity. I never thought that when I had this disease (CKD), I never thought that I would end up here (dialysis)… Do not rely on your own strength… Do not think that as long as you exercise you won’t get caught” (translated from Samoan). Only one patient interviewed had gone through the pre-dialysis phase and had an AV fistula formed prior to commencing dialysis. However, this individual did not want to start dialysis until he was critically ill and therefore presented acutely. He said “I didn’t know anything about dialysis, at first, until things got really bad”.

In summary, the most common reasons Samoan patients mentioned why they discontinued follow up, was because they did not think their kidney condition was serious. Some considered their illness to be temporary, which would disappear or be resolved with medications. Other reasons included a misunderstanding on how best to manage their illness, and a fear of having dialysis.

Discussion

There is a preferred pathway (traditional) described by the health professionals (see Figure 1). For example, from GP to nephrologist to Predialysis Educator before proceeding to dialysis. However, this was not always the pathway Samoan patients followed. Discussed below are key areas that impacted on Samoan patients access to health services.

Complex access pathways

There are barriers that Pacific peoples experience within the health sector that often result in non-traditional or complex pathways when accessing services, with the top three being cost, transport and language issues.9 Our data showed that instead of progressing through the preferred pathway, some are lost to follow up at different stages of the journey (ie, GP, nephrologist or pre-dialysis stage). For different reasons, some do not accept the need for dialysis. Many reported finally agreeing to dialysis when critically unwell. One patient was admitted multiple times to the hospital and declined dialysis. He was finally admitted unconscious and was given dialysis treatment with the family’s consent. The complexity of the issues involved means that a coordinated approach between health professionals, communities, families and support networks is required to ensure that patients can access health services in timely manner.

Fofo Samoa and herbal remedies

A number of Samoan patients valued the Fofo Samoa and herbal remedies, and incorporated this into their pathway of choice for treatment. A study in American Samoa found that majority of healthcare providers felt that most American Samoans used traditional medicine to complement hospital treatment.10 Although many accepted the use of Fofo Samoa and its benefits, the same was not true for herbal medicines. This was also found in our study, where a health professional acknowledged how Samoan patients would not return for follow up, seeking Fofo Samoa and herbal remedies, before presenting acutely. One participant tried multiple Fofo Samoa, alternative medicines and herbal remedies before being reviewed by his GP. The GP diagnosed severe CKD prompting an urgent referral to hospital. Health professionals need to be aware that traditional medicines are still being used and when encountering Samoan patients, they need to explore this with them in a non-judgmental manner.

Lack of awareness and knowledge of CKD

Studies have identified that the main reasons why people delay seeking treatment after onset of symptoms was because it was not considered as serious, or they thought the symptom was normal and thought it would go away.11,12 This study showed that many patients did not see CKD as a serious illness, and despite experiencing CKD symptoms8 people delayed getting help due to reasons mentioned above. A report mentioned that when there is limited understanding, it is easy to get incorrect messages from partial information from family and social sources.13 Many of them did not understand what CKD and dialysis was. A health professional mentioned that patients were apprehensive and frightened about dialysis. They had family members on dialysis who had died quickly with very poor quality of life. This perception of dialysis was exacerbated by the late referrals and reluctance of patients to consider dialysis until they were critically unwell. Some Pacific people believe or assume that you only go to see the doctor when you feel ill; this can be an issue when needing to manage risk conditions and markers on a regular, preventive basis.13

Christianity

A number of health professionals acknowledged the influence church ministers had on the Pacific community. One participant commented that Samoan patients were often more open and happy to talk about their faith compared to patients from other ethnic groups. Health professionals in the Pacific islands have accepted the role of religion and faith in conjunction with current treatments for their patients.10 It was acknowledged that church ministers can have a role, and some suggested actively involving them in promoting kidney health and awareness to their own people. Another health professional suggested involving a Samoan pastor to support the health and wellbeing of these patients in the hospital.

Miscommunications

Miscommunications within the health profession, and between health professionals and patients, were issues identified from the interviews. A health professional felt that Samoan patients would sometimes answer questions in a way they thought the staff wanted to hear. This can cause difficulties in understanding the real needs of the patient. Another found Samoan patients can be shy and reticent to ask for clarification of information they did not understand. Ludeke et al reported that Pacific people in New Zealand had difficulty articulating ‘descriptive words’ expected by physicians.14 Participants in this study acknowledged that they would rather voice agreement than ask for clarification. The same was not true for health professionals in our study who were of Pacific ethnicity, as they felt the Samoan patients were more comfortable to talk to them openly. Some miscommunication occurred when patients were lost during the referral process between the nephrologist and the GP. For patients who travelled between countries, there was often limited communication between the health professionals in Samoa and New Zealand. It is clear that good communication is really important in the provision of optimum healthcare for patients, and health professionals, patients and their families need to work together to achieve this.

Conclusion

There are comprehensive services available for all patients who need renal healthcare services in New Zealand. Although there is an ideal pathway, health professionals prefer patients to follow to optimise access to renal services, Samoan patients often had complex pathways for accessing renal health services. Access to services also included traditional medicines such as Fofo Samoa and herbal remedies. Miscommunications or cultural misunderstanding between the health professionals, and between health professionals and patients, also contributed to the ‘disrupted’ pathways patients took. In addition, patients reported not being aware of the seriousness of their illness. Raising early awareness of chronic kidney diseases and addressing barriers to accessing services in a timely manner is likely to enable timely interventions and improved outcomes for Samoan patients.

Summary

Abstract

Aim

Information about Pacific patients access to renal services is limited. This research aims to describe Samoan patients access to nephrology services in New Zealand.

Method

Interviews were conducted with six health professionals and four Samoan patients about access to renal services in 2016. Participants were recruited using the snowball method. Interviews were audio-recorded and transcribed. Field notes were also taken. Data were analysed and coded to identify emerging key themes about how Samoan patients access renal services in New Zealand.

Results

Health professionals and Samoan patients perspectives on pathways for accessing renal services in New Zealand were similar. However, there were differences between perspectives and access. Samoan patients actual pathways or access to services were often complex involving acute presentations to hospital. Patients moving between New Zealand and Samoa also contributed to these complexities. Miscommunications between patients and health professionals, patients lack of understanding about chronic kidney diseases, their beliefs and use of traditional medicine also impacted on their pathways to services.

Conclusion

This study identified factors that affected Samoan patients access to renal services in New Zealand. Raising awareness of chronic kidney diseases and addressing barriers to accessing services is likely to enable timely interventions and improved outcomes.

Author Information

- Ryder Afele Fuimaono, Dunedin School of Medicine, University of Otago, Dunedin; Faafetai Sopoaga, Dunedin School of Medicine, University of Otago, Dunedin; Sarah Derrett, Preventive and Social Medicine, University of Otago, Dunedin; Rob Wa

Acknowledgements

I would like to acknowledge with gratitude all participants who were generous with their time and stories, the Middlemore Hospital renal team, the Department of Preventive and Social Medicine for providing administrative support and the funding of a small gift to study participants, and the Division of Health Sciences Pacific Islands Research & Student Support Unit (PIRSSU) for its cultural oversight and support for this project. This research was conducted as part of a summer studentship project. RAF was the recipient of an OMRF summer studentship. Funding was obtained from Health Research Council New Zealand.

Correspondence

Mr Ryder Afele Fuimaono, Dunedin School of Medicine, University of Otago, Dunedin 9016.

Correspondence Email

fuira93@gmail.com

Competing Interests

All authors report grants from Health Research Council of New Zealand during the conduct of the study. Dr Sopoaga and Dr Fuimaono report grants from Department of Preventive and Social Medicine during the conduct of the study.

  1. Walker R, Derrett S, Campbell J, et al. Dialysis outcomes in those aged ≥65 years. BMC Nephrol. 2013; 14(1):175.
  2. Lozano R, Naghavi M, Foreman K, et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. The Lancet. 2012; 380(9859):2095–2128.
  3. ANZDATA Registry Report 2015. Australia and New Zealand Dialysis and Transplant Registry, Adelaide, South Australia.Editors: Philip Clayton, Kylie Hurst. http://www.anzdata.org.au/v1/report_2014.html
  4. Stats.govt.nz. Major ethnic groups in New Zealand [Internet]. 2015 [cited 7 August 2015]. http://www.stats.govt.nz/~/media/Statistics/Census/2013%20Census/profile-and-summary-reports/infographic-culture-identity/culture-identity-infographic-jpeg.jpg
  5. DerrettS, SamaranayakaA, SchollumJBW, McNoeB, MarshallMR, WilliamsS, WyethES, Walker RJ. Predictors of Health Deterioration Among Older Adults After 12 Months of Dialysis Therapy: A Longitudinal Cohort Study from New Zealand. Am J Kidney Dis. 2017; 70:798–806.
  6. Goodman, Leo A. Snowball Sampling. Ann. Math. Statist. 32 (1961), no. 1, 148–170. doi:10.1214/aoms/1177705148. http://projecteuclid.org/euclid.aoms/1177705148
  7. Bpac.org.nz. (2018). The detection and management of patients with chronic kidney disease in primary care - BPJ66. [online] Available at: http://bpac.org.nz/BPJ/2015/February/ckd.aspx#commentContainer [Accessed 12 Aug. 2018].
  8. Chronic Kidney Disease (CKD) Management in General Practice (Summary Guide). (2013). [ebook] Kidney Health New Zealand, pp.2-8. Available at: http://www.kidneys.co.nz/resources/file/ckd_management_in_general_practice._2014_version.pdf [Accessed 12 Aug. 2018].
  9. Ministry of Health NZ. (2013). Primary Care for Pacific People: A Pacific and Health Systems Approach. [online] Available at: http://www.health.govt.nz/publication/primary-care-pacific-people-pacific-and-health-systems-approach [Accessed 12 Aug. 2018].
  10. ADDIN EN.REFLIST Krosch SL. Perceptions and use of complementary and alternative medicine in American Samoa: a survey of health care providers. Hawaii medical journal. 2010; 69(6 Suppl 3):21.
  11. Almeida C, Skupien E, Silva D. Health care seeking behavior and patient delay in tuberculosis diagnosis. Cadernos de Saúde Pública. 2015; 31(2):321–330.
  12. van der Werf MJ, Chechulin Y, Yegorova OB, et al. Health care seeking behaviour for tuberculosis symptoms in Kiev City, Ukraine. Int J Tuberc Lung Dis 2006; 10:390–5.
  13. Southwick, M., Kenealy, T. and Ryan, D. (2012). Primary Care for Pacific People: A Pacific and Health Systems Approach. [online] Health.govt.nz. Available at: http://www.health.govt.nz/system/files/documents/publications/primary-care-pacific-people-pacific-health-systems-approach.doc [Accessed 17 Aug. 2018].
  14. Ludeke M, Puni R, Cook L, et al. Access to general practice for Pacific peoples: a place for cultural competency. Journal of Primary Health Care. 2012; 4(2):123–130.

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Chronic kidney disease (CKD), and the need for healthcare services to manage CKD, are increasing internationally.1 The Global Burden of Disease 2010 study identified chronic kidney failure as one of the three causes of death with the highest increase from 1990 to 2010.2 In New Zealand, the incidence of new patients entering the renal replacement programme is increasing by 10–12% per annum.3 Māori and Pacific peoples are over-represented among those diagnosed with CKD. For example, from the Australia & New Zealand Dialysis and Transplant Registry (ANZDATA), 2,649 people were referred for renal replacement therapy in New Zealand between 2009 and 2013. Of these, 512 (19%) reported at least one Pacific ethnicity. This is at least 2.5 times the proportion of Pacific peoples in the total population (7%).3,4

Information about the impact of CKD (not just mortality, but health impact on the individual and their family) on the Pacific community is limited. Currently, a longitudinal cohort study is underway in New Zealand.1 This study has recruited participants from three DHB regions (Counties Manukau, Hawkes Bay and Southern DHB). Of these, more than 18% report one or more Pacific ethnicities. This study has found that Pacific participants are more likely than non-Pacific participants to report having the “same or better health status” after one year of dialysis treatment than at baseline.5 It could be that the Pacific peoples’ access to nephrology services is timely and well-integrated, or that Pacific peoples’ view of health and health outcomes are different to those of non-Pacific people. Alternatively, Pacific peoples present for healthcare later, are less well and have more symptomatic relief and gain with initiation of treatment.

This research aimed to describe the pathways followed by Samoan patients into, and within, nephrology services in New Zealand.

Aim

To describe the perspectives of health professionals and Samoan patients on access pathways to nephrology services in New Zealand.

Methods

The research project was a collaborative descriptive and exploratory multiple-case study, with data collected from three participating sites though the collaborating institutions (the University of Otago, Middlemore hospital nephrology unit and the Manukau super-clinic).

Multiple sources of data from each site allowed for within-site data triangulation. Data was collected in Dunedin and Auckland from available organisational documents, interviews with a range of health professionals, Samoan patients, and a review of the literature.

Participants were recruited using the rolling snowball method.6 Participants were approached by the hospital clinicians on the research team’s behalf. Those who agreed to meet with the researcher (RF) collecting the data were provided with further information through an information sheet. Each participant signed a consent form prior to their interview. All patients were interviewed at the renal satellite clinics. Health professionals were interviewed in the hospital setting.

The researcher received training on cultural protocols and conducting interviews with Samoan participants. All interviews were conducted face-to-face, either in English or in the Samoan language, determined by the preference of the interviewee. All interviews were audio-recorded with field notes taken. The data set was de-identified to maintain confidentiality of participant responses. Data were analysed to determine emerging themes and pathways identified were used to develop a mapped pathway for access to services.

Ethics approval was obtained from the University of Otago Human Research Ethics Committee (H15/101).

Results

Six health professionals (two nephrologists and four renal specialist nurses) and four patients were interviewed. All who were approached to be involved accepted the invitation. Seven interviews were conducted in English, and three patients were interviewed in Samoan. Interviews were on average approximately 45 minutes each.

Health professionals perspectives

Stage 1: Monitoring

Health professionals described the pathways to nephrology services being followed by Samoan patients as usually beginning with the patient consulting their primary healthcare service provider, a general practitioner (GP) (see Figure 1). If the GP discovers that they have chronic kidney disease according to e-criteria,7 they would refer them to the nephrologist where indicated.8 Nephrologists prefer to see patients at least a year or two before they require renal replacement therapy (RRT). The patient would then have a number of follow-up appointments with the nephrologist to monitor the progression of their kidney functions.

Figure 1: Summary diagram of Samoan patients’ pathways and access to renal services.

c

Stage 2: Planning

When a patient starts experiencing symptoms relating to CKD (nausea, pruritus, restless legs and dyspnoea)7 a decision is made between the patient and the renal team as to whether they would want to have RRT. If the patient declines, they will continue to have an active supportive care pathway offered by the renal team and the GP, to manage uraemic symptoms. If the patient decides to accept treatment, they will then be referred to a pre-dialysis educator. It is at this stage that the patient discusses with the educator about the management of end-stage kidney disease (ESKD), including advance care planning, what RRT is and what options for dialysis are available. More meetings are arranged for the patient with the renal team, to discuss these issues, including the type of modality they prefer. Early referral clearly helps to facilitate the education and awareness of renal replacement therapy. After choosing the type of dialysis (peritoneal or haemodialysis) they wish to receive, surgery is arranged for either the formation of an arterial-venous (AV) fistula (for haemodialysis) or insertion of a peritoneal dialysis catheter (for peritoneal dialysis). After access has been established, the pre-dialysis educator will refer the patient to the primary dialysis nurse (who is responsible for training the patient). They also continue to be reviewed by their nephrologist.

Stage 3: Dialysis

Once an agreed start time for dialysis is confirmed, dialysis training commences at the dialysis unit. The training is comprehensive, and the duration is tailored to the patient’s ability to perform dialysis independently. This is easier to establish with peritoneal dialysis. The preference is for patients to be trained for home haemodialysis. There are a number of factors that influence the decision around haemodialysis, including socio-economic factors, availability of a helper, the individual’s comorbidities and ability to learn and undertake dialysis safely on their own. Not all patients who undertake dialysis training programme end up with home-based dialysis. Some remain in the hospital for their dialysis, while others are transferred to a satellite unit.

Stage 4: Follow up

Individuals dialysing in-centre (hospital or satellite units) continue to have regular nephrology (medical) reviews as well as ongoing monitoring by the dialysis staff. This option is only available for those on haemodialysis, and not for peritoneal dialysis. For those who go home (home dialysis), the dialysis nurse is present for the first home session. There are regular home visits by the dialysis nurse as well as regular reviews with their nephrologist.

Although these are ideal, or preferred, pathways for entering renal replacement programmes, these are not always the pathways followed for Samoan patients. Some health professionals have encountered Samoan patients coming into their nephrology service, directly from Samoa with end-stage kidney disease requiring urgent dialysis. There are patients who live in Samoa, who are admitted straight to the hospital through Accident and Emergency after arriving into New Zealand. Some patients who live in Samoa have New Zealand-based general practitioners, and would come over annually for routine primary care check-ups. During these healthcare checks, some concerns are picked up and are referred urgently to the renal team.

For those who are referred with CKD, but not yet requiring dialysis, it is not uncommon for health professionals to see them lost from the nephrology service at the pre-dialysis phase, or not attending further review. Occasionally, a patient can become lost in the system (through miscommunication between the nephrologist and the GP). Some patients seek Fofo Samoa (traditional alternative medicines) and herbal remedies, and elect to exit the planned pathway. Whichever alternative route they choose, some can present acutely requiring urgent dialysis.

Samoan patients’ perspectives

Stage 1: Monitoring

Most patients followed the pathways described by the health professionals where patients see their GPs, as their first point of contact for healthcare, prior to being referred to the nephrologist. Some patients change their GPs before being referred to the nephrologist. For others, their CKD was identified during a hospital admission related to another clinical presentation.

Stage 2: Dialysis

All participants interviewed, commenced dialysis therapy acutely rather than as a planned transition from CKD to dialysis. The pathways they took before commencing dialysis acutely varied between each person. Some were lost to follow-up after being referred to nephrology services by their GPs, while others had multiple acute admissions (either referred by their GP or self-refer). Others refused treatment until it became the only option for survival. As they did not have vascular access for haemodialysis, dialysis access was initially via insertion of a central venous dialysis catheter.

A patient ignored warnings from multiple health professionals in New Zealand and Samoa about his kidney condition. Even after being admitted acutely for dialysis, he did not return to continue treatment, until he was readmitted as unconscious. After regaining consciousness, he said “I asked him (doctor) how long I would have to do this (dialysis) for, and the doctor told me it was for life” (translated from Samoan). “Reflecting on what has happened from the beginning… I thought it was not something serious, and that the medicines I was given would fix it and not have to worry about it anymore. Whenever I hear ‘kidneys’, it was not something serious or important to me. I thought it was just like any other illnesses of the body, that it could be treated and done” (translated from Samoa).Once patients are stabilised, they are referred to the vascular surgeons to have an arteriovenous fistula. Once established, they either receive haemodialysis in a satellite centre, or undergo training for home dialysis.

Stage 3: Alternative pathways

Samoan patients identified alternative pathways for accessing healthcare that were not identified by the health professionals. Those who lived in Samoa would fly back and forth to New Zealand, receiving medical treatment from health professionals in both countries. Sometimes health information is not shared between the different health professionals for continuity of care. This includes communication among health professionals between Samoa and New Zealand and within New Zealand.Although the health professionals mentioned patients dropping out of follow up and seeking alternative medicines and herbal remedies, sometimes patients accessed Fofo Samoa first before seeing a GP. Once a community heard that their well-known and respected member was ill, they all visited him and offered multiple Fofo Samoa and herbal remedies. Some offered to take him to try Chinese medicine, and to see an African healer who had a spiritual approach, all of which did not work. “Even though I felt that I shouldn’t go, but I could not reject their respect… Even though I had enough of the Fofo, I could not stop their good will…I accepted what they told me to do, because of their love for me so that I may get well” (translated from Samoan). Once he went to visit his GP, he was immediately sent to A&E. “After my first dialysis, I can feel all of my suffering disappear” (translated from Samoan).

Most Samoan patients interviewed did not go through the pre-dialysis education before commencing dialysis. Instead, after being referred to the nephrologist, they were lost to follow up, did not attend clinics, and presented acutely for dialysis. One patient said “I was scared to do dialysis, I didn’t want to do it, until my health worsened”. Another said “I am a person who loves physical activity. I never thought that when I had this disease (CKD), I never thought that I would end up here (dialysis)… Do not rely on your own strength… Do not think that as long as you exercise you won’t get caught” (translated from Samoan). Only one patient interviewed had gone through the pre-dialysis phase and had an AV fistula formed prior to commencing dialysis. However, this individual did not want to start dialysis until he was critically ill and therefore presented acutely. He said “I didn’t know anything about dialysis, at first, until things got really bad”.

In summary, the most common reasons Samoan patients mentioned why they discontinued follow up, was because they did not think their kidney condition was serious. Some considered their illness to be temporary, which would disappear or be resolved with medications. Other reasons included a misunderstanding on how best to manage their illness, and a fear of having dialysis.

Discussion

There is a preferred pathway (traditional) described by the health professionals (see Figure 1). For example, from GP to nephrologist to Predialysis Educator before proceeding to dialysis. However, this was not always the pathway Samoan patients followed. Discussed below are key areas that impacted on Samoan patients access to health services.

Complex access pathways

There are barriers that Pacific peoples experience within the health sector that often result in non-traditional or complex pathways when accessing services, with the top three being cost, transport and language issues.9 Our data showed that instead of progressing through the preferred pathway, some are lost to follow up at different stages of the journey (ie, GP, nephrologist or pre-dialysis stage). For different reasons, some do not accept the need for dialysis. Many reported finally agreeing to dialysis when critically unwell. One patient was admitted multiple times to the hospital and declined dialysis. He was finally admitted unconscious and was given dialysis treatment with the family’s consent. The complexity of the issues involved means that a coordinated approach between health professionals, communities, families and support networks is required to ensure that patients can access health services in timely manner.

Fofo Samoa and herbal remedies

A number of Samoan patients valued the Fofo Samoa and herbal remedies, and incorporated this into their pathway of choice for treatment. A study in American Samoa found that majority of healthcare providers felt that most American Samoans used traditional medicine to complement hospital treatment.10 Although many accepted the use of Fofo Samoa and its benefits, the same was not true for herbal medicines. This was also found in our study, where a health professional acknowledged how Samoan patients would not return for follow up, seeking Fofo Samoa and herbal remedies, before presenting acutely. One participant tried multiple Fofo Samoa, alternative medicines and herbal remedies before being reviewed by his GP. The GP diagnosed severe CKD prompting an urgent referral to hospital. Health professionals need to be aware that traditional medicines are still being used and when encountering Samoan patients, they need to explore this with them in a non-judgmental manner.

Lack of awareness and knowledge of CKD

Studies have identified that the main reasons why people delay seeking treatment after onset of symptoms was because it was not considered as serious, or they thought the symptom was normal and thought it would go away.11,12 This study showed that many patients did not see CKD as a serious illness, and despite experiencing CKD symptoms8 people delayed getting help due to reasons mentioned above. A report mentioned that when there is limited understanding, it is easy to get incorrect messages from partial information from family and social sources.13 Many of them did not understand what CKD and dialysis was. A health professional mentioned that patients were apprehensive and frightened about dialysis. They had family members on dialysis who had died quickly with very poor quality of life. This perception of dialysis was exacerbated by the late referrals and reluctance of patients to consider dialysis until they were critically unwell. Some Pacific people believe or assume that you only go to see the doctor when you feel ill; this can be an issue when needing to manage risk conditions and markers on a regular, preventive basis.13

Christianity

A number of health professionals acknowledged the influence church ministers had on the Pacific community. One participant commented that Samoan patients were often more open and happy to talk about their faith compared to patients from other ethnic groups. Health professionals in the Pacific islands have accepted the role of religion and faith in conjunction with current treatments for their patients.10 It was acknowledged that church ministers can have a role, and some suggested actively involving them in promoting kidney health and awareness to their own people. Another health professional suggested involving a Samoan pastor to support the health and wellbeing of these patients in the hospital.

Miscommunications

Miscommunications within the health profession, and between health professionals and patients, were issues identified from the interviews. A health professional felt that Samoan patients would sometimes answer questions in a way they thought the staff wanted to hear. This can cause difficulties in understanding the real needs of the patient. Another found Samoan patients can be shy and reticent to ask for clarification of information they did not understand. Ludeke et al reported that Pacific people in New Zealand had difficulty articulating ‘descriptive words’ expected by physicians.14 Participants in this study acknowledged that they would rather voice agreement than ask for clarification. The same was not true for health professionals in our study who were of Pacific ethnicity, as they felt the Samoan patients were more comfortable to talk to them openly. Some miscommunication occurred when patients were lost during the referral process between the nephrologist and the GP. For patients who travelled between countries, there was often limited communication between the health professionals in Samoa and New Zealand. It is clear that good communication is really important in the provision of optimum healthcare for patients, and health professionals, patients and their families need to work together to achieve this.

Conclusion

There are comprehensive services available for all patients who need renal healthcare services in New Zealand. Although there is an ideal pathway, health professionals prefer patients to follow to optimise access to renal services, Samoan patients often had complex pathways for accessing renal health services. Access to services also included traditional medicines such as Fofo Samoa and herbal remedies. Miscommunications or cultural misunderstanding between the health professionals, and between health professionals and patients, also contributed to the ‘disrupted’ pathways patients took. In addition, patients reported not being aware of the seriousness of their illness. Raising early awareness of chronic kidney diseases and addressing barriers to accessing services in a timely manner is likely to enable timely interventions and improved outcomes for Samoan patients.

Summary

Abstract

Aim

Information about Pacific patients access to renal services is limited. This research aims to describe Samoan patients access to nephrology services in New Zealand.

Method

Interviews were conducted with six health professionals and four Samoan patients about access to renal services in 2016. Participants were recruited using the snowball method. Interviews were audio-recorded and transcribed. Field notes were also taken. Data were analysed and coded to identify emerging key themes about how Samoan patients access renal services in New Zealand.

Results

Health professionals and Samoan patients perspectives on pathways for accessing renal services in New Zealand were similar. However, there were differences between perspectives and access. Samoan patients actual pathways or access to services were often complex involving acute presentations to hospital. Patients moving between New Zealand and Samoa also contributed to these complexities. Miscommunications between patients and health professionals, patients lack of understanding about chronic kidney diseases, their beliefs and use of traditional medicine also impacted on their pathways to services.

Conclusion

This study identified factors that affected Samoan patients access to renal services in New Zealand. Raising awareness of chronic kidney diseases and addressing barriers to accessing services is likely to enable timely interventions and improved outcomes.

Author Information

- Ryder Afele Fuimaono, Dunedin School of Medicine, University of Otago, Dunedin; Faafetai Sopoaga, Dunedin School of Medicine, University of Otago, Dunedin; Sarah Derrett, Preventive and Social Medicine, University of Otago, Dunedin; Rob Wa

Acknowledgements

I would like to acknowledge with gratitude all participants who were generous with their time and stories, the Middlemore Hospital renal team, the Department of Preventive and Social Medicine for providing administrative support and the funding of a small gift to study participants, and the Division of Health Sciences Pacific Islands Research & Student Support Unit (PIRSSU) for its cultural oversight and support for this project. This research was conducted as part of a summer studentship project. RAF was the recipient of an OMRF summer studentship. Funding was obtained from Health Research Council New Zealand.

Correspondence

Mr Ryder Afele Fuimaono, Dunedin School of Medicine, University of Otago, Dunedin 9016.

Correspondence Email

fuira93@gmail.com

Competing Interests

All authors report grants from Health Research Council of New Zealand during the conduct of the study. Dr Sopoaga and Dr Fuimaono report grants from Department of Preventive and Social Medicine during the conduct of the study.

  1. Walker R, Derrett S, Campbell J, et al. Dialysis outcomes in those aged ≥65 years. BMC Nephrol. 2013; 14(1):175.
  2. Lozano R, Naghavi M, Foreman K, et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. The Lancet. 2012; 380(9859):2095–2128.
  3. ANZDATA Registry Report 2015. Australia and New Zealand Dialysis and Transplant Registry, Adelaide, South Australia.Editors: Philip Clayton, Kylie Hurst. http://www.anzdata.org.au/v1/report_2014.html
  4. Stats.govt.nz. Major ethnic groups in New Zealand [Internet]. 2015 [cited 7 August 2015]. http://www.stats.govt.nz/~/media/Statistics/Census/2013%20Census/profile-and-summary-reports/infographic-culture-identity/culture-identity-infographic-jpeg.jpg
  5. DerrettS, SamaranayakaA, SchollumJBW, McNoeB, MarshallMR, WilliamsS, WyethES, Walker RJ. Predictors of Health Deterioration Among Older Adults After 12 Months of Dialysis Therapy: A Longitudinal Cohort Study from New Zealand. Am J Kidney Dis. 2017; 70:798–806.
  6. Goodman, Leo A. Snowball Sampling. Ann. Math. Statist. 32 (1961), no. 1, 148–170. doi:10.1214/aoms/1177705148. http://projecteuclid.org/euclid.aoms/1177705148
  7. Bpac.org.nz. (2018). The detection and management of patients with chronic kidney disease in primary care - BPJ66. [online] Available at: http://bpac.org.nz/BPJ/2015/February/ckd.aspx#commentContainer [Accessed 12 Aug. 2018].
  8. Chronic Kidney Disease (CKD) Management in General Practice (Summary Guide). (2013). [ebook] Kidney Health New Zealand, pp.2-8. Available at: http://www.kidneys.co.nz/resources/file/ckd_management_in_general_practice._2014_version.pdf [Accessed 12 Aug. 2018].
  9. Ministry of Health NZ. (2013). Primary Care for Pacific People: A Pacific and Health Systems Approach. [online] Available at: http://www.health.govt.nz/publication/primary-care-pacific-people-pacific-and-health-systems-approach [Accessed 12 Aug. 2018].
  10. ADDIN EN.REFLIST Krosch SL. Perceptions and use of complementary and alternative medicine in American Samoa: a survey of health care providers. Hawaii medical journal. 2010; 69(6 Suppl 3):21.
  11. Almeida C, Skupien E, Silva D. Health care seeking behavior and patient delay in tuberculosis diagnosis. Cadernos de Saúde Pública. 2015; 31(2):321–330.
  12. van der Werf MJ, Chechulin Y, Yegorova OB, et al. Health care seeking behaviour for tuberculosis symptoms in Kiev City, Ukraine. Int J Tuberc Lung Dis 2006; 10:390–5.
  13. Southwick, M., Kenealy, T. and Ryan, D. (2012). Primary Care for Pacific People: A Pacific and Health Systems Approach. [online] Health.govt.nz. Available at: http://www.health.govt.nz/system/files/documents/publications/primary-care-pacific-people-pacific-health-systems-approach.doc [Accessed 17 Aug. 2018].
  14. Ludeke M, Puni R, Cook L, et al. Access to general practice for Pacific peoples: a place for cultural competency. Journal of Primary Health Care. 2012; 4(2):123–130.

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Chronic kidney disease (CKD), and the need for healthcare services to manage CKD, are increasing internationally.1 The Global Burden of Disease 2010 study identified chronic kidney failure as one of the three causes of death with the highest increase from 1990 to 2010.2 In New Zealand, the incidence of new patients entering the renal replacement programme is increasing by 10–12% per annum.3 Māori and Pacific peoples are over-represented among those diagnosed with CKD. For example, from the Australia & New Zealand Dialysis and Transplant Registry (ANZDATA), 2,649 people were referred for renal replacement therapy in New Zealand between 2009 and 2013. Of these, 512 (19%) reported at least one Pacific ethnicity. This is at least 2.5 times the proportion of Pacific peoples in the total population (7%).3,4

Information about the impact of CKD (not just mortality, but health impact on the individual and their family) on the Pacific community is limited. Currently, a longitudinal cohort study is underway in New Zealand.1 This study has recruited participants from three DHB regions (Counties Manukau, Hawkes Bay and Southern DHB). Of these, more than 18% report one or more Pacific ethnicities. This study has found that Pacific participants are more likely than non-Pacific participants to report having the “same or better health status” after one year of dialysis treatment than at baseline.5 It could be that the Pacific peoples’ access to nephrology services is timely and well-integrated, or that Pacific peoples’ view of health and health outcomes are different to those of non-Pacific people. Alternatively, Pacific peoples present for healthcare later, are less well and have more symptomatic relief and gain with initiation of treatment.

This research aimed to describe the pathways followed by Samoan patients into, and within, nephrology services in New Zealand.

Aim

To describe the perspectives of health professionals and Samoan patients on access pathways to nephrology services in New Zealand.

Methods

The research project was a collaborative descriptive and exploratory multiple-case study, with data collected from three participating sites though the collaborating institutions (the University of Otago, Middlemore hospital nephrology unit and the Manukau super-clinic).

Multiple sources of data from each site allowed for within-site data triangulation. Data was collected in Dunedin and Auckland from available organisational documents, interviews with a range of health professionals, Samoan patients, and a review of the literature.

Participants were recruited using the rolling snowball method.6 Participants were approached by the hospital clinicians on the research team’s behalf. Those who agreed to meet with the researcher (RF) collecting the data were provided with further information through an information sheet. Each participant signed a consent form prior to their interview. All patients were interviewed at the renal satellite clinics. Health professionals were interviewed in the hospital setting.

The researcher received training on cultural protocols and conducting interviews with Samoan participants. All interviews were conducted face-to-face, either in English or in the Samoan language, determined by the preference of the interviewee. All interviews were audio-recorded with field notes taken. The data set was de-identified to maintain confidentiality of participant responses. Data were analysed to determine emerging themes and pathways identified were used to develop a mapped pathway for access to services.

Ethics approval was obtained from the University of Otago Human Research Ethics Committee (H15/101).

Results

Six health professionals (two nephrologists and four renal specialist nurses) and four patients were interviewed. All who were approached to be involved accepted the invitation. Seven interviews were conducted in English, and three patients were interviewed in Samoan. Interviews were on average approximately 45 minutes each.

Health professionals perspectives

Stage 1: Monitoring

Health professionals described the pathways to nephrology services being followed by Samoan patients as usually beginning with the patient consulting their primary healthcare service provider, a general practitioner (GP) (see Figure 1). If the GP discovers that they have chronic kidney disease according to e-criteria,7 they would refer them to the nephrologist where indicated.8 Nephrologists prefer to see patients at least a year or two before they require renal replacement therapy (RRT). The patient would then have a number of follow-up appointments with the nephrologist to monitor the progression of their kidney functions.

Figure 1: Summary diagram of Samoan patients’ pathways and access to renal services.

c

Stage 2: Planning

When a patient starts experiencing symptoms relating to CKD (nausea, pruritus, restless legs and dyspnoea)7 a decision is made between the patient and the renal team as to whether they would want to have RRT. If the patient declines, they will continue to have an active supportive care pathway offered by the renal team and the GP, to manage uraemic symptoms. If the patient decides to accept treatment, they will then be referred to a pre-dialysis educator. It is at this stage that the patient discusses with the educator about the management of end-stage kidney disease (ESKD), including advance care planning, what RRT is and what options for dialysis are available. More meetings are arranged for the patient with the renal team, to discuss these issues, including the type of modality they prefer. Early referral clearly helps to facilitate the education and awareness of renal replacement therapy. After choosing the type of dialysis (peritoneal or haemodialysis) they wish to receive, surgery is arranged for either the formation of an arterial-venous (AV) fistula (for haemodialysis) or insertion of a peritoneal dialysis catheter (for peritoneal dialysis). After access has been established, the pre-dialysis educator will refer the patient to the primary dialysis nurse (who is responsible for training the patient). They also continue to be reviewed by their nephrologist.

Stage 3: Dialysis

Once an agreed start time for dialysis is confirmed, dialysis training commences at the dialysis unit. The training is comprehensive, and the duration is tailored to the patient’s ability to perform dialysis independently. This is easier to establish with peritoneal dialysis. The preference is for patients to be trained for home haemodialysis. There are a number of factors that influence the decision around haemodialysis, including socio-economic factors, availability of a helper, the individual’s comorbidities and ability to learn and undertake dialysis safely on their own. Not all patients who undertake dialysis training programme end up with home-based dialysis. Some remain in the hospital for their dialysis, while others are transferred to a satellite unit.

Stage 4: Follow up

Individuals dialysing in-centre (hospital or satellite units) continue to have regular nephrology (medical) reviews as well as ongoing monitoring by the dialysis staff. This option is only available for those on haemodialysis, and not for peritoneal dialysis. For those who go home (home dialysis), the dialysis nurse is present for the first home session. There are regular home visits by the dialysis nurse as well as regular reviews with their nephrologist.

Although these are ideal, or preferred, pathways for entering renal replacement programmes, these are not always the pathways followed for Samoan patients. Some health professionals have encountered Samoan patients coming into their nephrology service, directly from Samoa with end-stage kidney disease requiring urgent dialysis. There are patients who live in Samoa, who are admitted straight to the hospital through Accident and Emergency after arriving into New Zealand. Some patients who live in Samoa have New Zealand-based general practitioners, and would come over annually for routine primary care check-ups. During these healthcare checks, some concerns are picked up and are referred urgently to the renal team.

For those who are referred with CKD, but not yet requiring dialysis, it is not uncommon for health professionals to see them lost from the nephrology service at the pre-dialysis phase, or not attending further review. Occasionally, a patient can become lost in the system (through miscommunication between the nephrologist and the GP). Some patients seek Fofo Samoa (traditional alternative medicines) and herbal remedies, and elect to exit the planned pathway. Whichever alternative route they choose, some can present acutely requiring urgent dialysis.

Samoan patients’ perspectives

Stage 1: Monitoring

Most patients followed the pathways described by the health professionals where patients see their GPs, as their first point of contact for healthcare, prior to being referred to the nephrologist. Some patients change their GPs before being referred to the nephrologist. For others, their CKD was identified during a hospital admission related to another clinical presentation.

Stage 2: Dialysis

All participants interviewed, commenced dialysis therapy acutely rather than as a planned transition from CKD to dialysis. The pathways they took before commencing dialysis acutely varied between each person. Some were lost to follow-up after being referred to nephrology services by their GPs, while others had multiple acute admissions (either referred by their GP or self-refer). Others refused treatment until it became the only option for survival. As they did not have vascular access for haemodialysis, dialysis access was initially via insertion of a central venous dialysis catheter.

A patient ignored warnings from multiple health professionals in New Zealand and Samoa about his kidney condition. Even after being admitted acutely for dialysis, he did not return to continue treatment, until he was readmitted as unconscious. After regaining consciousness, he said “I asked him (doctor) how long I would have to do this (dialysis) for, and the doctor told me it was for life” (translated from Samoan). “Reflecting on what has happened from the beginning… I thought it was not something serious, and that the medicines I was given would fix it and not have to worry about it anymore. Whenever I hear ‘kidneys’, it was not something serious or important to me. I thought it was just like any other illnesses of the body, that it could be treated and done” (translated from Samoa).Once patients are stabilised, they are referred to the vascular surgeons to have an arteriovenous fistula. Once established, they either receive haemodialysis in a satellite centre, or undergo training for home dialysis.

Stage 3: Alternative pathways

Samoan patients identified alternative pathways for accessing healthcare that were not identified by the health professionals. Those who lived in Samoa would fly back and forth to New Zealand, receiving medical treatment from health professionals in both countries. Sometimes health information is not shared between the different health professionals for continuity of care. This includes communication among health professionals between Samoa and New Zealand and within New Zealand.Although the health professionals mentioned patients dropping out of follow up and seeking alternative medicines and herbal remedies, sometimes patients accessed Fofo Samoa first before seeing a GP. Once a community heard that their well-known and respected member was ill, they all visited him and offered multiple Fofo Samoa and herbal remedies. Some offered to take him to try Chinese medicine, and to see an African healer who had a spiritual approach, all of which did not work. “Even though I felt that I shouldn’t go, but I could not reject their respect… Even though I had enough of the Fofo, I could not stop their good will…I accepted what they told me to do, because of their love for me so that I may get well” (translated from Samoan). Once he went to visit his GP, he was immediately sent to A&E. “After my first dialysis, I can feel all of my suffering disappear” (translated from Samoan).

Most Samoan patients interviewed did not go through the pre-dialysis education before commencing dialysis. Instead, after being referred to the nephrologist, they were lost to follow up, did not attend clinics, and presented acutely for dialysis. One patient said “I was scared to do dialysis, I didn’t want to do it, until my health worsened”. Another said “I am a person who loves physical activity. I never thought that when I had this disease (CKD), I never thought that I would end up here (dialysis)… Do not rely on your own strength… Do not think that as long as you exercise you won’t get caught” (translated from Samoan). Only one patient interviewed had gone through the pre-dialysis phase and had an AV fistula formed prior to commencing dialysis. However, this individual did not want to start dialysis until he was critically ill and therefore presented acutely. He said “I didn’t know anything about dialysis, at first, until things got really bad”.

In summary, the most common reasons Samoan patients mentioned why they discontinued follow up, was because they did not think their kidney condition was serious. Some considered their illness to be temporary, which would disappear or be resolved with medications. Other reasons included a misunderstanding on how best to manage their illness, and a fear of having dialysis.

Discussion

There is a preferred pathway (traditional) described by the health professionals (see Figure 1). For example, from GP to nephrologist to Predialysis Educator before proceeding to dialysis. However, this was not always the pathway Samoan patients followed. Discussed below are key areas that impacted on Samoan patients access to health services.

Complex access pathways

There are barriers that Pacific peoples experience within the health sector that often result in non-traditional or complex pathways when accessing services, with the top three being cost, transport and language issues.9 Our data showed that instead of progressing through the preferred pathway, some are lost to follow up at different stages of the journey (ie, GP, nephrologist or pre-dialysis stage). For different reasons, some do not accept the need for dialysis. Many reported finally agreeing to dialysis when critically unwell. One patient was admitted multiple times to the hospital and declined dialysis. He was finally admitted unconscious and was given dialysis treatment with the family’s consent. The complexity of the issues involved means that a coordinated approach between health professionals, communities, families and support networks is required to ensure that patients can access health services in timely manner.

Fofo Samoa and herbal remedies

A number of Samoan patients valued the Fofo Samoa and herbal remedies, and incorporated this into their pathway of choice for treatment. A study in American Samoa found that majority of healthcare providers felt that most American Samoans used traditional medicine to complement hospital treatment.10 Although many accepted the use of Fofo Samoa and its benefits, the same was not true for herbal medicines. This was also found in our study, where a health professional acknowledged how Samoan patients would not return for follow up, seeking Fofo Samoa and herbal remedies, before presenting acutely. One participant tried multiple Fofo Samoa, alternative medicines and herbal remedies before being reviewed by his GP. The GP diagnosed severe CKD prompting an urgent referral to hospital. Health professionals need to be aware that traditional medicines are still being used and when encountering Samoan patients, they need to explore this with them in a non-judgmental manner.

Lack of awareness and knowledge of CKD

Studies have identified that the main reasons why people delay seeking treatment after onset of symptoms was because it was not considered as serious, or they thought the symptom was normal and thought it would go away.11,12 This study showed that many patients did not see CKD as a serious illness, and despite experiencing CKD symptoms8 people delayed getting help due to reasons mentioned above. A report mentioned that when there is limited understanding, it is easy to get incorrect messages from partial information from family and social sources.13 Many of them did not understand what CKD and dialysis was. A health professional mentioned that patients were apprehensive and frightened about dialysis. They had family members on dialysis who had died quickly with very poor quality of life. This perception of dialysis was exacerbated by the late referrals and reluctance of patients to consider dialysis until they were critically unwell. Some Pacific people believe or assume that you only go to see the doctor when you feel ill; this can be an issue when needing to manage risk conditions and markers on a regular, preventive basis.13

Christianity

A number of health professionals acknowledged the influence church ministers had on the Pacific community. One participant commented that Samoan patients were often more open and happy to talk about their faith compared to patients from other ethnic groups. Health professionals in the Pacific islands have accepted the role of religion and faith in conjunction with current treatments for their patients.10 It was acknowledged that church ministers can have a role, and some suggested actively involving them in promoting kidney health and awareness to their own people. Another health professional suggested involving a Samoan pastor to support the health and wellbeing of these patients in the hospital.

Miscommunications

Miscommunications within the health profession, and between health professionals and patients, were issues identified from the interviews. A health professional felt that Samoan patients would sometimes answer questions in a way they thought the staff wanted to hear. This can cause difficulties in understanding the real needs of the patient. Another found Samoan patients can be shy and reticent to ask for clarification of information they did not understand. Ludeke et al reported that Pacific people in New Zealand had difficulty articulating ‘descriptive words’ expected by physicians.14 Participants in this study acknowledged that they would rather voice agreement than ask for clarification. The same was not true for health professionals in our study who were of Pacific ethnicity, as they felt the Samoan patients were more comfortable to talk to them openly. Some miscommunication occurred when patients were lost during the referral process between the nephrologist and the GP. For patients who travelled between countries, there was often limited communication between the health professionals in Samoa and New Zealand. It is clear that good communication is really important in the provision of optimum healthcare for patients, and health professionals, patients and their families need to work together to achieve this.

Conclusion

There are comprehensive services available for all patients who need renal healthcare services in New Zealand. Although there is an ideal pathway, health professionals prefer patients to follow to optimise access to renal services, Samoan patients often had complex pathways for accessing renal health services. Access to services also included traditional medicines such as Fofo Samoa and herbal remedies. Miscommunications or cultural misunderstanding between the health professionals, and between health professionals and patients, also contributed to the ‘disrupted’ pathways patients took. In addition, patients reported not being aware of the seriousness of their illness. Raising early awareness of chronic kidney diseases and addressing barriers to accessing services in a timely manner is likely to enable timely interventions and improved outcomes for Samoan patients.

Summary

Abstract

Aim

Information about Pacific patients access to renal services is limited. This research aims to describe Samoan patients access to nephrology services in New Zealand.

Method

Interviews were conducted with six health professionals and four Samoan patients about access to renal services in 2016. Participants were recruited using the snowball method. Interviews were audio-recorded and transcribed. Field notes were also taken. Data were analysed and coded to identify emerging key themes about how Samoan patients access renal services in New Zealand.

Results

Health professionals and Samoan patients perspectives on pathways for accessing renal services in New Zealand were similar. However, there were differences between perspectives and access. Samoan patients actual pathways or access to services were often complex involving acute presentations to hospital. Patients moving between New Zealand and Samoa also contributed to these complexities. Miscommunications between patients and health professionals, patients lack of understanding about chronic kidney diseases, their beliefs and use of traditional medicine also impacted on their pathways to services.

Conclusion

This study identified factors that affected Samoan patients access to renal services in New Zealand. Raising awareness of chronic kidney diseases and addressing barriers to accessing services is likely to enable timely interventions and improved outcomes.

Author Information

- Ryder Afele Fuimaono, Dunedin School of Medicine, University of Otago, Dunedin; Faafetai Sopoaga, Dunedin School of Medicine, University of Otago, Dunedin; Sarah Derrett, Preventive and Social Medicine, University of Otago, Dunedin; Rob Wa

Acknowledgements

I would like to acknowledge with gratitude all participants who were generous with their time and stories, the Middlemore Hospital renal team, the Department of Preventive and Social Medicine for providing administrative support and the funding of a small gift to study participants, and the Division of Health Sciences Pacific Islands Research & Student Support Unit (PIRSSU) for its cultural oversight and support for this project. This research was conducted as part of a summer studentship project. RAF was the recipient of an OMRF summer studentship. Funding was obtained from Health Research Council New Zealand.

Correspondence

Mr Ryder Afele Fuimaono, Dunedin School of Medicine, University of Otago, Dunedin 9016.

Correspondence Email

fuira93@gmail.com

Competing Interests

All authors report grants from Health Research Council of New Zealand during the conduct of the study. Dr Sopoaga and Dr Fuimaono report grants from Department of Preventive and Social Medicine during the conduct of the study.

  1. Walker R, Derrett S, Campbell J, et al. Dialysis outcomes in those aged ≥65 years. BMC Nephrol. 2013; 14(1):175.
  2. Lozano R, Naghavi M, Foreman K, et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. The Lancet. 2012; 380(9859):2095–2128.
  3. ANZDATA Registry Report 2015. Australia and New Zealand Dialysis and Transplant Registry, Adelaide, South Australia.Editors: Philip Clayton, Kylie Hurst. http://www.anzdata.org.au/v1/report_2014.html
  4. Stats.govt.nz. Major ethnic groups in New Zealand [Internet]. 2015 [cited 7 August 2015]. http://www.stats.govt.nz/~/media/Statistics/Census/2013%20Census/profile-and-summary-reports/infographic-culture-identity/culture-identity-infographic-jpeg.jpg
  5. DerrettS, SamaranayakaA, SchollumJBW, McNoeB, MarshallMR, WilliamsS, WyethES, Walker RJ. Predictors of Health Deterioration Among Older Adults After 12 Months of Dialysis Therapy: A Longitudinal Cohort Study from New Zealand. Am J Kidney Dis. 2017; 70:798–806.
  6. Goodman, Leo A. Snowball Sampling. Ann. Math. Statist. 32 (1961), no. 1, 148–170. doi:10.1214/aoms/1177705148. http://projecteuclid.org/euclid.aoms/1177705148
  7. Bpac.org.nz. (2018). The detection and management of patients with chronic kidney disease in primary care - BPJ66. [online] Available at: http://bpac.org.nz/BPJ/2015/February/ckd.aspx#commentContainer [Accessed 12 Aug. 2018].
  8. Chronic Kidney Disease (CKD) Management in General Practice (Summary Guide). (2013). [ebook] Kidney Health New Zealand, pp.2-8. Available at: http://www.kidneys.co.nz/resources/file/ckd_management_in_general_practice._2014_version.pdf [Accessed 12 Aug. 2018].
  9. Ministry of Health NZ. (2013). Primary Care for Pacific People: A Pacific and Health Systems Approach. [online] Available at: http://www.health.govt.nz/publication/primary-care-pacific-people-pacific-and-health-systems-approach [Accessed 12 Aug. 2018].
  10. ADDIN EN.REFLIST Krosch SL. Perceptions and use of complementary and alternative medicine in American Samoa: a survey of health care providers. Hawaii medical journal. 2010; 69(6 Suppl 3):21.
  11. Almeida C, Skupien E, Silva D. Health care seeking behavior and patient delay in tuberculosis diagnosis. Cadernos de Saúde Pública. 2015; 31(2):321–330.
  12. van der Werf MJ, Chechulin Y, Yegorova OB, et al. Health care seeking behaviour for tuberculosis symptoms in Kiev City, Ukraine. Int J Tuberc Lung Dis 2006; 10:390–5.
  13. Southwick, M., Kenealy, T. and Ryan, D. (2012). Primary Care for Pacific People: A Pacific and Health Systems Approach. [online] Health.govt.nz. Available at: http://www.health.govt.nz/system/files/documents/publications/primary-care-pacific-people-pacific-health-systems-approach.doc [Accessed 17 Aug. 2018].
  14. Ludeke M, Puni R, Cook L, et al. Access to general practice for Pacific peoples: a place for cultural competency. Journal of Primary Health Care. 2012; 4(2):123–130.

Contact diana@nzma.org.nz
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