Volume 28 Number 1

Introduction

Urinary incontinence (UI), as defined by the International Continence Society (ICS), is the “complaint of involuntary loss of urine”¹. In New Zealand, the experience of UI among ethnic groups is poorly researched. Furthermore, when the lens is focused on the Pasifika population, there seems to be even less information.

Pasifika peoples make up around 8% of the total population of New Zealand, with a large proportion of this ethnic group residing in South Auckland². This population group typically includes individuals from Samoa, Tonga, Cook Islands, Niue, Fiji, Tokelau and other islands in the Pasifika region. Despite many of these communities calling New Zealand home, they each have languages, customs and cultural practices unique to their communities that bring about differing perspectives and beliefs from the dominant western ideology rooted in current research literature³.

The scarcity of New Zealand literature suggests that UI is a condition that is relatively unaddressed by those experiencing it nor by healthcare providers⁴. Two studies from the 1990s investigated and reported UI among different ethnic groups in New Zealand^4,5. One study based in central Wellington surveyed 1028 women and found that 29% of Pasifika women indicated that they experienced UI⁵. The other was a qualitative report commissioned by the South Auckland Department of Women’s Health in 1999⁴ and included information on the experiences of Pasifika women with UI. Lennan, Smalldridge and Fa’alau⁴ set out to gain a better understanding of UI for Māori, Pasifika and Pākehā (New Zealander of European decent) women living in south Auckland, with particular focus on what meaning it had to them, the impacts on their lives, and barriers to continence care. The findings identified shared experiences among women of all ethnicities – shame, embarrassment and restricted participation in daily and social activities. However, there were experiences isolated to Pasifika women, including a perception that health practitioners could be untrustworthy and fears that confidentiality would be breached. Barriers that influenced engagement of care were language, transport, finance and cultural competency, and the authors recommended improvement of and provision of information specifically for the Pasifika community.

The notion that perspectives and lived experiences differ among population groups can be observed worldwide, influenced both by cultural and/or religious norms within each society. Indigenous women of Australia, for example, can be hesitant to discuss UI due to the significance of land in their culture and fear that admission of incontinence could lead to separation from land⁶. For Ethiopian women, the cause of incontinence has spiritual attributions and therefore spiritual means are sought for management and restoration⁷. Jewish and Muslim women in Israel encounter a heavy intersect with their religion, with some religious practices requiring cleanliness which incontinence can make difficult⁸. However, little is known on perspectives held by ethnic populations within New Zealand. For instance, UI is relatively unspoken of by Māori women and⁴, much like Pasifika women, there is very limited literature regarding UI within this community. Considering the differences experienced in other cultural groups, similar findings might be observed in Pasifika women.

Despite increased morbidity among Pasifika people their health care needs are still unmet9^,10, an issue that goes beyond the scope of the current study. This highlights the importance of further exploration of the experience of UI in this community. Therefore, the aim of this qualitative study was to explore Pasifika women’s experience with UI with a focus on cultural beliefs and attitudes about UI, the management of UI and help-seeking behaviours.

Methods

Design

A qualitative exploratory design with a singular semi-structured focus group interview was conducted. This method allowed for insight into this important but poorly understood topic while accommodating the sensitivity of UI for Pasifika women. It also allowed for cultural norms related to modes of communication that were familiar to the participants and the focus group; these were was based on talanoa (talking) sessions that occur frequently in informal settings among Pasifika people and is a recognised methodology when researching this population¹¹. The focus group began with a prayer (as per cultural protocols), followed by a short introduction of personnel and context.

Cultural safety and ethics

The focus group was facilitated by two female clinicians with experience in UI research and a third-year medical student, two of whom were Samoan.

Ethics approval was obtained from the University of Auckland Human Ethics Participation Committee reference number 022043.

Sampling and recruitment

Eligibility was extended to women above the age of 18 who identified as Pasifika. A history of UI was not required to participate as the participant’s insight could be from personal experience or through the experience of others, such as observing or caring for women who have symptoms of UI.

A convenience sample was recruited from the staff of a Pasifika health provider in South Auckland. Participants were contacted via email and were provided an information sheet prior to the focus group. The focus group occurred in person at a location convenient to the participants. Participants received a NZ$20 petrol voucher as a mea alofa (gift or donation) to compensate for their time.

Data collection and data analysis

A semi-structured approach was used for the focus group with prompts created beforehand available for use if required. The prompts included questions regarding the focus areas of cultural beliefs and attitudes about UI, the management of UI, and help-seeking behaviours. The focus group was audio recorded and the recording was transcribed verbatim.

The lead author became familiar with the data by listening to the audio recording, reading the notes gathered at the focus group, and reading the recoding transcript many times. The data were sorted into the different areas  of interest – beliefs and attitudes, management and  help-seeking behaviours – using code made from highlighted words, phrases and comments from the recording transcript and notes. Each area of interest became an overarching concept and data regarding each concept had a separate document. Concepts were further explored to identify categories within and cross analysis of all categories revealed a fourth concept – solutions. Data relevant to solutions were separated to a new document. Categories were then synthesised to form the final themes and quotes  were selected to best display these. During the data analysis process, progress and conclusions made were constantly discussed and checked by the lead authors supervisors.

Results

Participant characteristics

Ten participants ranged in age from 23–63 years and identified as Samoan (n=6), Tongan (n=3) and Cook Islands (n=1). Although the majority of participants identified as New Zealand born, half stated that English was not their first language. The focus group participants revealed a range of different experiences with UI, having experienced UI themselves or having cared for women who had UI symptoms. Two participants had no experience with UI. The range of occupations among the participants were three nurses, five administration-based occupations and two allied health practitioners.

Beliefs and attitudes

The focus group collectively believed that the development of UI symptoms was natural due to the ageing process or heredity. It was perceived that, as women age, UI is guaranteed as it is a natural occurrence. Similarly, through observing the experiences of relatives and other elderly women in the community, it is presumed that they too will inherit UI. This perceived inevitability and normalisation of UI seems to influence whether help is sought:

I think one of the dangers of health issues within pacific families is the assumption that it just runs in the family or it just happens… it’s natural. It’s just a thing that you experience and, you know, you don’t actually go in and get it checked by professionals to get a diagnosis or professional help, you just accept it.

Participant 3

Psychosocial elements also influence attitudes toward UI, such as shame, shyness, stubbornness and the individuality of the issue. Throughout the discussion, a sense of shame or stigma of having such a condition was noted. This was reflected in the management and help-seeking strategies that were shared; specific examples are discussed further on. Participants expressed that some women view UI as an individual issue and would prefer to address the matter privately using their own solutions:

... the whole thing about being ma [embarrassed/ashamed] and not wanting to voice their issues because of what people might think or say, like maybe your lifestyle is not up to par.

Participant 3

Management

The focus group participants shared a range of management strategies, many of which involved adjusting their daily routines to cater for UI. One participant mentioned that she did not drink an hour before she leaves to go somewhere. Another mentioned that women she cared for "hold on" until their stomachs hurt which has become more difficult with age. One participant noted that containment pads supplied during a hospital admission to a woman she cared for were useful. However, it was expressed that these can be a financial burden and quick to exhaust. For both strategies, participants noted that women were extremely self-conscious and embarrassed; they felt that others were watching how many times they went to the bathroom or restocked pads:

It kind of dictates my life. Like an hour before I go, I can’t drink any water in the mornings. I used to drink a lot of water in the morning but now I can’t before I go somewhere. And here [at work] it’s embarrassing because they must notice how many times I go to the bathroom.

Participant 8

Help-seeking behaviors

The involvement of family members in the process of seeking help was a prominent theme among participants. Family members were often relied upon to liaise between the person and the necessary health service, particularly in the care of older women. However, respondents noted the responsibility of care and support is only entrusted to certain family members. Some participants expressed that the women they cared for would delay making appointments until the participants themselves were available to do so on their behalf.

One participant recalled a situation that highlighted the sensitivity that certain health conditions such as UI have. The participant’s mother went to the doctors accompanied by her granddaughter. They returned home not having addressed the issue with the doctor because the participant's mother did not want her granddaughter to know about her health:

So I have to take her again. And I said, the girls asked you? She said but then the girls would see… she didn’t want the girls to know.

Participant 1

Participants expressed that age can influence help-seeking behaviours. In younger women, symptoms must be severe before medical help is sought. Reasons suggested for this included shame, distrust and the perception that accessing healthcare for a condition involving this organ system could have wider implications. A younger participant expressed that some in the Pasifika community could misinterpret healthcare interactions regarding UI as a sign of underlying sexual activity or treatment of sexually transmitted infections. Therefore, some Pasifika onlookers may view this as shameful or dishonourable, deterring young women from medical care. It was also discussed that alternate solutions such as traditional natural healing options may be explored prior to seeking medical advice. Specific examples of traditional or natural healing options were not suggested.

A participant who had knowledge and experience in UI care expressed that when approached for treatment and management assistance, difficulty is often experienced, as communicating therapeutic interventions such as pelvic floor exercises is a particularly unfamiliar topic. It was attributed to the pelvic floor muscles being unseen and therefore difficult to target for strengthening.

Solutions

There was a strong desire among focus group participants to help their community and to tease out solutions to the challenges faced. The themes discussed above highlighted that UI has many different interpretations and is understood in a non-uniform manner. The participants agreed that there is a need for Pasifika people to have a more thorough and accurate understanding of this health condition:

I don’t think some are aware of it. They are dealing with it but they don’t know what it is. They don’t know the information, they don’t know what it’s called.

Participant 5

Participants emphasised that a culturally appropriate approach is vital for improving education regarding UI. Of particular importance was the choice of words and language when creating or improving UI resources. Participants suggested that the use of colloquial, lay terms could ensure ease of understanding. This is important as messages regarding health can sometimes become lost in complexity. In conjunction with the use of simplified terminology, education must be communicated in a respectful manner. Resources would also need to be tailored to each individual Pasifika ethnicity as each islander community has its own language and culture that would need to be considered:

It’d be great if more of it could be advertised in Pasifika languages.

Participant 4

Participants advised better ways to distribute information such as at community and church events. These are unique spaces occupied and frequently accessed by Pasifika communities. Churches in particular play a pinnacle role in the connectedness and relationships fostered in Pasifika communities. Due to this, in-person events such as meetings or presentations on UI held in the community or at churches could acknowledge the importance of UI and encourage discussion. The other form of distribution discussed was via online channels such as the internet or social media. The participants spoke of how these would be the primary spaces women would use when searching for answers. Participants emphasised that, whichever method of distribution was used, the space must be safe, noting that UI as a discussion topic among Pasifika people was already difficult; therefore, it is paramount that the spaces inviting women to be vulnerable and forthcoming were comfortable, confidential and confidence enhancing.

Participants noted that the age of the intended audience must be considered. Discussions revealed that those who were older would be more receptive to respectful language delivered in person. Younger women, however, may respond better to information offered via social media that was presented in a more casual format. This could be due to both cultural and technological aspects such as younger women being better equipped and more familiar with digital spaces. Engaging younger women could normalise UI as a condition for all ages, not just older women. Social media and internet guidance could encourage younger women to seek help earlier or at least be better informed about UI when making decisions.

Discussion

This exploration of the experience of UI among Pasifika women in South Auckland, New Zealand revealed a complex experience heavily rooted in perceptions that are dictated by beliefs and attitudes including cultural barriers. Such beliefs and attitudes can influence when or if women seek medical assistance, can avert discussion of the issue among women, and can lead women to find ways to manage the condition and ‘suffer silently’. The insight provided on how to improve the current situation suggests that solutions to adversities faced by Pasifika women with regard to UI lie within the very population that they challenge.

The perception held by Pasifika women in this study regarding UI being a natural occurrence is one that is shared with women of all ethnicities^4,6–8,12. So too are the psychosocial elements of shame, shyness and embarrassment discussed by the focus group. Women in the Middle East, India, specific African territories and Pākehā women are found to hold similar beliefs^4,6–8,12. Despite these commonalities, how each ethnicity experiences shame, shyness or embarrassment is quite different. Specific to Pasifika women, shame stems from cultural norms that do not allow UI as a common topic of discussion. These findings are consistent with that of Lennan and colleagues who partially attributed feelings of shame to UI being a private matter and a potential breach of confidentiality amongst those it may be discussed with⁴.

Other findings consistent across different qualitative ethnic studies is a lack of UI education in non-Pākehā women^4,6–8,12. For example, non-Pākehā women appear to have limited knowledge of the condition, risk factors and possible solutions. This could be partially attributed to health literacy (being able to access, read and interpret health-related information to make informed decisions about health) as health literacy can contribute to the health of individuals¹⁵. It is suggested that Pasifika women have inadequate health literacy¹⁵ and therefore it is vital that the recommendations regarding the communication of UI information, discussed by the participants, are incorporated in the future.

In New Zealand resources are available through the Continence NZ website which includes information on UI available in two Pasifika languages – Tongan and Samoan^13,14. However, access to this information is still dependent on women knowing the resource is available and how to access it. Although these resources were not discussed and the underlying reason for not using these specific resources was not explored, in itself, it is suggestive that a barrier to accessing these resources exists.

Access as a barrier to UI care and support was also mentioned by Lennan and colleagues. In conjunction with the lack of culturally appropriate provisional information regarding UI, Lennan et al.⁴ report that there were barriers specific to the experience of Pasifika women. These included issues with finance, transport, language, health literacy and referral for further treatment – similar to issues discussed in this study. The consistency across the two studies concerning access is not unexpected as this phenomenon is experienced by Pasifika peoples across many areas of the New Zealand healthcare system and inequities faced by this community are disproportionate to that of the majority of the New Zealand population. This can be attributed to the design and structure of a healthcare system that consistently fails to serve and engage the needs of Māori and Pasifika peoples; therefore, it is not surprising that some Pasifika women may seek other avenues of care, avoid and delay medical advice, or experience distrust as mentioned by the focus group.

This research affirmed that the downfalls of mainstream healthcare can be rectified by solutions lying within communities and can contribute to more holistic approaches of UI care through a Pasifika lens. The suggestions from the participants of this focus group may help to improve existing resources, improve Pasifika health literacy and increase the accessibility of UI support.

This study also introduced the impact that age may have on a Pasifika women’s perception of and experience with UI. Across many of the themes, age appeared to have an influence. The results illustrate that help-seeking behaviours, management strategies and potential solutions vary depending on the age of a Pasifika women. Although not discussed, it is suggestive that, despite congruence amongst many of the attitudes and beliefs underpinning certain themes, there may also be different perspectives that alter across the age of the population. Furthermore, these results begin to explore the dynamics between different generations within Pasifika communities. Cultural protocols regarding Pasifika women of different generations could dictate the nature of interactions and dialogue around UI as these communities begin to navigate this new, sensitive topic. Therefore, further expansion of age and generation would be a valuable to explore in future works.

Despite the limited research exploring the perceptions of UI in Pasifika women, this study strengthens the findings of the existing paper⁴. There were many similarities in the findings that further explored, if not affirmed, some of the key points Lennan, Smalldridge and Fa’alau made. It also introduced new themes that can be built upon, specifically the influence that age has on the approach to UI, generational implications, and further exploration of the underlying beliefs and attitudes given the significant impact it has on Pasifika women’s perception.

However, the findings from this study must be kept in context. As an exploratory qualitative study, these findings – which represent the perceptions of 10 women who all work for a healthcare provider – may not cover the range of perceptions of the wider population of Pasifika women. A strength is that we had three different groups within the Pasifika peoples ethnicities (Tongan, Samoan, Cook Islands) represented. However, due to the individuality of each community, more research is needed with other Pasifika women (e.g. Fiji, Solomon Islands, Tokelau).

Conclusion

A multifaceted approach is required to wholly appreciate the experience of UI in a Pasifika context and implement solutions. From this small study it was found there is a need for increased and appropriate education on UI for Pasifika women. The delivery of information must meet a multitude of factors that this small preliminary work has already uncovered. New Zealand’s healthcare system is currently under review, with emphasis being placed on the obvious inequities of delivery. Further research will help to inform those who are making the decisions to make the right decisions for the most benefit.

Conflict of interest

The authors declare no conflicts of interest.

Funding

The authors received no funding for this study.

Author(s)

Angelique TuiSamoa*
Medical Student
The University of Auckland School of Medicine, Auckland, New Zealand
Email atui097@aucklanduni.ac.nz

Maryann Heather
Senior Lecturer – Medical
The University of Auckland, School of Population Health, Faculty of Medical and Health Sciences, Pacific Health Section, Auckland, New Zealand

Jennifer Kruger
Senior Researcher
University of Auckland, Auckland Bioengineering Institute,
Auckland, New Zealand
Editor, Australian and New Zealand Continence Journal

*Corresponding author

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