Aboriginal and Torres Strait Islander women’s experiences of living with urinary incontinence

Aim

This research aimed to describe Aboriginal and Torres Strait Islander women’s experiences of living with UI and the health care services they had received.

Positionality and context

The research team acknowledges the sovereignty of the Turrbal and Yuggerra peoples, Custodians of this land where this research was conducted. The team includes Aboriginal and non-Indigenous PHC professionals and researchers employed at the PHC service, led by a female non-Indigenous researcher, with experience in quantitative and qualitative research methods, Indigenous health research and experience as a registered nurse. The senior author is an Aboriginal man, Clinical Director and founder of the PHC service, with experience in Indigenous health research, education and medical administration. A female Aboriginal clinical nurse co-investigator withdrew when she ceased employment at the service. A female Aboriginal Research Assistant joined the team during the data synthesis and has assisted with data synthesis and reviews of the manuscript. A non-Indigenous female clinical nurse and qualified continence nurse specialist, participated in all stages of the research. A non-Indigenous female senior GP, experienced in health care provision for Aboriginal and Torres Strait Islander persons, assisted with concept and design, recruitment, obtaining the research grant, and critical review of the manuscript. Some co-investigators may have provided direct health care to women eligible for participation.

Governance and ethics

This research was approved by the Metro South Human Research Ethics Committee (HREC/2019/QMS/47628) and female members of the Inala Community Jury for Aboriginal and Torres Strait Islander Health Research.²² The research findings were presented verbally to female members of the Jury and a copy of the manuscript provided for comments.

Study design

A qualitative research design was used in the conduct of this research. Semi-structured interviews using an interview guide, were conducted to describe women’s lived experiences of managing UI. As part of this interview, women also evaluated seven brochures about incontinence (not included in this manuscript), described in the first published paper from this research.²³ Further details of the study method, including Indigenous governance, study design, participants and setting, data collection procedure and data synthesis are provided in the first published paper from this research.²³

Participants and setting

A purposive sample of Aboriginal and Torres Strait Islander women aged ≥40 years, attending the Southern Queensland Centre of Excellence (SQCoE) in Aboriginal and Torres Strait Islander Primary Health Care between August 2019 and February 2020, experiencing UI, able to converse in English language and not experiencing any cognitive impairment, were eligible to participate in the research. The SQCoE is an integrated primary and specialist health service, located at Inala, a suburb of Brisbane, Queensland, Australia.

Data collection procedure

Two of the investigators who conducted the interviews were trained in recruitment, interview and data collection procedures. All GPs providing care at the SQCoE during data collection were provided with information about the research, participant eligibility criteria and recruitment procedures.

A two-step recruitment procedure was used to address any power imbalance between GPs and participants who may have been receiving clinical care by the GPs.²³ GPs provided initial brief verbal information to women meeting the inclusion criteria at the end of their scheduled medical consultation, and names of women indicating interest were provided to one of the recruiting co-investigators. In the second step, the co-investigators provided detailed verbal information to women wishing to participate including the voluntary nature of participation and that decisions regarding participation would not affect their ongoing clinical care. A mutually convenient time was arranged for one digitally recorded interview to be conducted at SQCoE. A written copy of the Participant Information and Consent Form was provided that could be completed at this time or on the day of interview.

Fourteen interviews were conducted by the non-Indigenous clinical nurse and co-investigator, one by the Aboriginal clinical nurse and co-investigator, and eight by the non-Indigenous researcher. Each participant was met at the reception desk and accompanied to the interview room. Interviews began with welcoming the participant, the interviewer introducing herself and general social conversation to help her feel relaxed. The conversation transitioned to the brief discussion about the research, its purpose, interview procedure and completion of consent forms. The words ‘yarn’ and ‘chat’ were used to create an informal environment for women to describe their experiences of living with UI and health care services. Three participants chose to have an Aboriginal Health Worker present for the first part of the interviews.

Each interview began with acknowledgement of the sensitive and intimate nature of incontinence. Each participant’s own words to describe UI was used during the interview. The interview commenced with an introductory question about the length of time she had experienced UI, followed by her experiences of living with UI, and health care services. A summary of all the responses was presented to each participant to affirm/correct or provide any additional information. None of the participants wished to read a written copy of their transcript. Recruitment was discontinued when information saturation was reached.

The researchers valued and acknowledged each participant’s time and sharing of their valuable knowledge and reciprocated by providing the National Continence Helpline telephone number and an AU$25 supermarket voucher. If a consultation with a GP was identified, an appointment was arranged with the participant’s permission.

Synthesis of interview data

The consolidated criteria for reporting qualitative research (COREQ)²⁴ was followed in this research. The interviews were transcribed verbatim by a transcription company. The inductive thematic analysis method was used for data synthesis. Interview transcripts were coded by two investigators. One non-Indigenous investigator (PL) used NVivo (ver. 12) to code all interview contents into main headings, collapsed into fewer broader themes. The Aboriginal Research Assistant and co-investigator (KS) manually coded each transcript independently and identified similar main ideas and themes. Both investigators discussed and mutually agreed on the naming of each theme.

Describing UI

Participants’ understanding of UI varied and reflected their individual experiences. Incontinence was described as a loss of control and leaking of urine or ‘wee’; a progressively worsening condition; a normal part of life especially when associated with coughing and sneezing; worse either in the early morning or during the day; unpredictable or resulted from a sudden urge, without any triggering factor, and unable to get to the toilet in time; or resulted from a disconnection between the brain and bladder function. One participant described it as a disruption to the normal three-step process of being continent (having the sensation, followed by urgency and having voluntary control of passing urine), with an insufficient time between the sudden urge to void and reaching the toilet. Examples of different meanings of UI are described by the following participants.

… you have three stages of when you need to go to the toilet. You’ve got the urge you need to go, and you have to go. I always miss the first two and its always the have to go and nine out of ten I just don’t make it. [Participant 1].

Four or five times through the night… driving me mental…Like, it’s an urge … oh, I’ve got to go to the toilet, by the time I get up out of bed, too late. [Participant 18].

… the brain and the bladder don’t seem to work together… when I know I’ve got to go to the toilet … as soon as I start to move to get up … it starts giving away. [Participant 17]

Participants also described the factors or activities that were associated with UI. A combination of factors (coughing, sneezing and laughing, lifting heavy items and physical exercise) was the most common; followed by other contributing factors such as unable to get to the toilet in time; childbirth; or spinal injury. One participant described her confusion in determining if she had UI. She did not consider she was experiencing UI when she was unable to reach the toilet in time for 2 weeks following her first hip surgery. However, when it persisted for longer than 2 weeks following her second hip surgery, she sought medical advice and was diagnosed with UI.

Managing incontinence

Participants described three main strategies that they used in the management of UI. These included the management of leakage of urine, reducing the frequency of UI, and seeking assistance from GPs and family members. The most common strategy to manage leakage was the use of containment aids, such as pads and pull-up pants. Some disadvantages of containment aids were described including skin irritability, bulkiness associated with thicker pads, longer time required in pulling down pull-up pants resulting in leakage, and unsuitablility for swimming or aqua aerobics. A few participants were either unaware of incontinence pads and pants and were using menstrual sanitary pads or were unaware of the availability of different types and sizes of containment aids, resulting in incorrect size and type being purchased online. Other strategies to manage leakage included selection of suitable clothing such as coloured clothes that would hide any instances of any accidental leakage when in public places; being prepared for managing any accidental leakage when away from home, such as taking spare pads or pull-up pants, disposal cleansing wipes and bags, and a change of clothing; and protection of furniture and mattress with special waterproof covers or towels used by women who were unaware of the waterproof aids.

Participants described many strategies to reduce the frequency of UI. Easy access to the toilet was identified as an important strategy in reducing episodes of UI such as knowing the location of toilets when away from home or using a toilet map for long distance travel and only walking in those parks with toilets located on-site. Suitable clothing, such as wearing dresses and loose-fitting trousers were useful in reducing episodes of UI when visiting a toilet.

Frequent emptying of the bladder prior to leaving home and restricting the intake of fluids were also used to reduce the frequency of UI by some participants. Other participants did not use these strategies, based on recommendations of health professionals, as described below.

If … I’ve been out and … not had anything to eat or drink … probably about five or six hours later and that’s when I go to the toilet. But if I’m having a lot to drink, … it just goes straight through me… even… within that half an hour of finishing my coffee I need to go to the toilet … So then it’s just, like, oh, well, if I don’t drink, I won’t pee myself, that’s the way I see it.. it’s a hard situation, you’ve got to keep up your fluids but if I drink too much I pee a lot more, if I don’t drink I don’t pee and only have little bits. [Participant 2]

… I’m very frugal about how much water or fluid intake… I won’t leak as much if I’m racing to the toilet. [Participant 6]

So if I know I’m going out like, to a shopping centre, I don’t drink too much fluid before I go… I just drink a little bit, but then when I’m coming home or when I’m leaving the shopping centre, I’ll have a drink of water because I know [I am] on the way home. [Participant 20]

I just drink normally… the dietician told me too, not to cut back just because I’ve got incontinence, because drinking water … it’s good. [Participant 23]

No, I don’t [empty bladder frequently], because I spoke to a physio ages ago, and she said … ‘don’t just go to the toilet because you’re going out. Hold it as long as you can … it helps strengthen your muscles’… [Participant 23]

Other strategies used to reduce the frequency of UI included emptying the bladder when it was only a quarter full, avoiding being away from home (and toilet) for long periods and performing PFMEs to ‘hold-on’ as long as they could when having the urge to void. The PFME strategy was only useful when the toilet was close by and when the bladder was not too full, as described below.

Sometimes … I’ll just get that … urge feeling, and then I try to hold on for as long as I possibly can …sometimes it works, and sometimes it doesn’t work. And when it doesn’t work I have to go to the toilet, or I have an accident. [Participant 4]

When I’m exercising … I’m usually quite good, I can hold on and because the toilet’s just around the corner, I can get there fast enough. [Participant 6]

But sometimes when I’ve drank fair bit of fluid, and then I don’t make it to the toilet because I have no control … and I tighten up those muscles there, trying to hold on until I get to the toilet, when there’s a lot of fluid … I can’t control the muscles. But I try. [Participant 20]

Seeking assistance and support from GPs was the third strategy used by some participants to manage UI. Some participants felt comfortable having discussions with male and female GPs, others preferred female GPs. Assistance sought from GPs included information about containment aids and completion of applications to access subsidised aids; referral to specialist services; genetic causes of UI and likelihood of worsening UI with older age, described below.

… very informative [information from GP]… if it was genetic or age-related … I [am] going, ‘Okay, something to look forward to, in a not so negative nice way.’ … good to know that I could be prepared when I get older … [Participant 11]

Support from close friends and family members was not sought by many participants, as UI was considered private, described below

… it’s too intimate – I’m not normally a person who shares my life with friends … and I just share it with my daughter mostly and my sister… But they are very sensitive about all that sort of stuff as well. It’s not something that I share with everybody. [Participant 23]

Treatments for incontinence

Pelvic floor muscle exercises (PFMEs) were the most common treatment, performed by some participants especially when taught by a physiotherapist or exercise physiologist. Reasons for not performing PFMEs included insufficient information; feeling embarrassed about seeking help from a physiotherapist; and lack of time or difficulty performing them following childbirth. For example, one participant found it difficult to follow the instructions provided on a YouTube video while simultaneously performing PFMEs. A few participants questioned the effectiveness of PFMEs, as described below.

It’s not hard to do the pelvic floor … but it’s hard when it’s not working. I did my pelvic floor [PFE] nearly all the time… [Participant 2]

Some participants were referred to the local hospital’s pelvic floor physiotherapist or other specialists for investigation and treatment, although some had difficulty attending appointments during work hours. Two participants had attempted and discontinued using pessaries because of experiencing cramps and pain or difficulty with its regular removal and re-insertion. Although two participants were aware of surgical treatment, they did not pursue it either because of intolerance to anaesthesia or preference to manage with containment aids. One participant questioned whether meditation would be useful in treating UI.

Reasons for not seeking any treatment included the belief that UI would resolve itself; that it was a normal part of childbirth, older age or a prolapse; it had not advanced to the stage of requiring treatment; or other health conditions had a higher priority.

Challenges of living with incontinence

Participants described experiencing many negative impacts of UI in their daily lives including various financial and psychological challenges, with some participants describing it as being constantly in her thoughts and had taken over her life or that it had become ‘beyond a joke’. Some participants also described the impact of UI in their daily lives by selecting a number from 0 to 10 with ‘0’ being no impact and ‘10’ being very significant impact. Fourteen participants rated the impact of UI on their everyday living with scores ranging from 0 (no impact) to 10 (very significant impact). Ten of these participants experienced moderate to very significant impact (scores between 7 and 10). One participant selected a score of 12, which was greater than the maximum score of 10, indicating the enormous and excessive burden of living with UI, two mild (score of 4), and two did not experience any impact (score of 0). Of the nine participants who did not provide a score, five did not experience any impact, and four experienced a moderate or significant impact. The main reasons for not experiencing any impact included accepting and using strategies to lead a normal and socially active life such as containment aids; knowing location of toilets when away from home; or light humour to explain frequent visits to toilet when dining with friends, described below.

Your life changes - - - and you have to learn to accept, don’t think you can just go out and one pad will do. Always be prepared… [Participant 17]

Some reasons for experiencing significant impacts included constant preparations and planning required before leaving home; keeping visits short when away from home; worrying about becoming incontinent in a public place and unable to meet the hygiene requirements; unable to go to shops, join in social activities (such as ten-pin bowling), or travel long distances interstate and overseas for holidays; and difficulties maintaining intimate relationships with existing or new partners.

Participants also described the significant financial and psychological impacts of UI. Financial impacts resulted from increased laundry costs (frequent washing of bedding, clothes and floor mats); purchase of furniture protection materials, and disposable containment aids for women who were not in receipt of government-based subsidies; and skin barrier creams. Participants also experienced embarrassment in seeking assistance from health professionals, or asking for pads during hospitalisation, especially from male staff. Participants also feared that the associated odour, leakage and wet clothes would result in others becoming aware that they were experiencing UI such as family members, friends and work colleagues, other patients in a shared hospital room and members of the public, as described below.

…sitting next to someone and I’ll be a little bit worried if they accidentally smelt it… just the worry of not knowing when it’s going to happen…it just happens out of the blue and I’m not ready for it. [Participant 12]

Other participants described feeling worried about the chair seat getting wet from accidental leakage when visiting a friend’s residence; developing a urinary tract infection as a side effect of the deodorant used to remove urine odour; and the worsening of UI, as described below.

My main worry is that it will get worse … become more embarrassing… more hard to control. I’d like to do something to help prevent it getting worse. [Participant 16]

Reasons for participants feeling frustrated included frequent washing of clothes, bedding and bathroom mats and cleaning floors and bathroom as well as the unpredictable nature of UI, including occurring soon after attempts to empty the bladder.

Strengthening the delivery of health services

Sixteen participants discussed their experiences of services provided at the Indigenous PHC service and any services they had received at any outpatient department of the local tertiary hospitals. The positive aspects of services provided at the PHC service included health system factors such as referral to specialist services; long-term relationship with staff enabling them to discuss UI; and health professionals’ understanding of the impacts experienced by the participant and her wish to manage UI. The inclusion of four UI questions in the routine health assessment form at the PHC service was described as an useful intervention in providing an opportunity to discuss the presence of UI with any health professional, described below.

… when you’re doing those yearly health checks, and if someone indicates that they do have incontinence, that would be the time to … offer this is what we’ve got. And it’s up to the patient to say, ‘No, I’m okay,’ or ‘Yes, that sounds like a good idea’. [Participant 23]

Some areas for improvement at the PHC service were identified. These included more information to be provided about UI and its management and interventions to increase the identification of women who were experiencing UI. Implementing interventions to increase identification of women experiencing UI would be especially useful since they either did not think to ask GPs about UI; felt embarrassed about discussing UI with male health professionals; or did not understand the causes of UI. Suggested interventions included the availability of a survey form that women could complete prior to GP consultation, or health professionals taking the initiative to ask women at risk (irrespective of age), if they were experiencing UI, as described below.

I didn’t even know I had it [UI]. Do the GPs think, [she] is 63. She’s had two hip replacements. She’s got damaged discs and nerves, will I ask her if she’s got incontinence? [Participant 20]

Information about UI was identified as a priority intervention to increase awareness and conversations to address the silent nature of UI; reduce the feelings of embarrassment and fear of being judged; and promote the many causes of UI such as childbirth, described below.

… make it more aware … that there is help for people … and for people to talk because it’s embarrassing … That’s why a lot of it just goes silent … it’s hard to talk to people that you don’t know … you think they’re going to judge me. [Participant 2]

Information was also required about the effective strategies (instead of restricting fluid intake) to manage and prevent the worsening of UI; the variety and most appropriate containment aids (for example, a containment aids trial service); products to protect bedding, mattress and furniture; eligibility requirements for government subsidised incontinence aids; investigations, treatments and cure for UI; skin protection cream to prevent nappy rash; individualised practical information on performing PFMEs; and other services that assisted with management of UI, described by the following participants.

I wouldn’t know if you could get a special tablet to stop everything… [Participant 1]

I think make it more aware to everyone after they’ve had childbirth to do those [PFMEs] … [Participant 2]

some pad trial service…pads for different levels of continence … shown to ladies to try, see which might be the best ones for them … so they can manage their problem correctly. [Participant 4]

A few participants discussed the positive aspects of health care delivery provided in the local hospitals, including access to physiotherapists who taught PFMEs. Areas identified for improvements included greater assistance with changing pads while awaiting admission and greater recognition of UI as an important health issue when placed on a waiting list for specialist care at the Outpatient department of a hospital.

Implications for delivery of primary health care

Participants in this research identified the positive characteristics of the PHC service, including health professionals’ understanding of the impact of UI and having a long-term trusted relationship with health care providers. Since UI can become a chronic health condition, a close and ongoing relationship with health practitioners will increase women’s confidence in seeking assistance including intimate invasive investigations.^25,31 Factors that could negatively influence nurses and GPs’ ability to manage UI include lack of adequate knowledge; lack of time or confidence in providing personal coaching in performance of PFMEs or bladder retraining.^26,32–34 Training of health professionals in providing culturally appropriate and empathetic continence care to Aboriginal and Torres Strait Islander women is required.^9,20,35

The findings from this and other studies identify the need for a model of care in the PHC setting that is, consistent with recommended clinical guidelines^{1,2,4,14,21,36}. It would assist in raising community awareness about UI and promoting it as a treatable medical condition. An integrated multi-disciplinary team approach would be an essential component of this model of care. The team could include continence nurse advisor, pelvic floor physiotherapist, nurses and midwives, health workers, psychologist, urologist, urogynaecologists and geriatricians. This model of care would assist in the prevention, early identification, provision of appropriate management strategies and treatments, and avoid worsening of the condition.^{9,14,21,26,35}

Primary healthcare professionals need to proactively ask women about UI during routine consultations, advise about treatment options and encourage them to share their experiences, fears and challenges.^16,20,21,29 It is important that health care provided to Aboriginal and Torres Strait Islander women is culturally appropriate and safe, and ideally in collaboration with Aboriginal Health Workers. This includes being aware that UI, urogenital and gynaecological aspects of healthcare may be a sensitive, private, and a ‘shame’ topic for Aboriginal and Torres Strait Islander women, and may not be well understood and cause fear. They may also feel embarrassed and shy, and may not wish to discuss UI with male health professionals.^20,35 Women may also use different terms to describe incontinence and it is important to ask women the words they use rather than just using the term ‘incontinence’. However, letting women know that ‘incontinence’ is a synonymous term helps them become aware of its meaning if it is used by health professionals in other healthcare settings. The use of informal conversation such as ‘yarning’ and non-medical terminology may also help women feel relaxed and safe to discuss conditions like ‘incontinence’. Provision of information on all aspects of UI, in an easy-to-understand language should be an essential component of PHC service delivery.^1,4 The National Continence Telephone Helpline and brochures on various topics developed specifically for Aboriginal and Torres Strait Islander persons are important sources of culturally appropriate information.^20,37

Other initiatives for consideration in the model of care include integration of a pelvic floor incontinence clinic within the Indigenous PHC service, found to be valuable in enabling easier access to conservative treatments and reduction in other specialist referrals.²⁰ Employment of Continence Nurse Specialists in busy PHC services should be considered as they possess empathic and effective interpersonal communication skills, are knowledgeable about many aspects of continence care, and can assist in identification and implementation of conservative management interventions including bladder retraining.^25,31

Strengths and limitations

The in-depth interviews conducted in a culturally safe PHC setting enabled Aboriginal and Torres Strait Islander women to describe their experiences about many aspects of UI management, contributing to the knowledge obtained from one other research study.²⁰ The rich diversity of information on many aspects of UI will be valuable for other women living with UI, health professionals and health service providers in the primary and tertiary health care settings.

The findings of the study may not reflect the experiences of all Aboriginal and Torres Strait Islander women living in different regions of Australia, such as the impact of lack of easily accessible health services; lack of transport and large geographic distances; and limited culturally appropriate services in rural and remote regions.^20,21 Participants’ experiences are also limited to the healthcare services they were receiving, and findings do not cover all aspects health care especially treatments for UI.

Areas for further research

There is an urgent need for collaborative research with Aboriginal and Torres Strait Islander women into the prevalence, incidence and management of UI, models of PHC that promote UI as a preventable and treatable medical condition, and provision of culturally appropriate and accessible continence services. Since UI is a growing health condition, research into the future workforce and training of health professionals is required to ensure the delivery of quality and culturally appropriate continence services.

Conclusion

UI is a common treatable health condition among community-dwelling women, with many negative impacts on the individual and has implications for health service delivery. Aboriginal and Torres Strait Islander women participating in this research provided valuable information about their understanding and experiences of living with UI and highlighted the need for a comprehensive primary health services model of care to increase awareness, dispel myths, identify women at risk of, or experiencing UI and provision of appropriate individualised conservative and specialist treatments.