Participant experiences of the Knee Care for Arthritis through Pharmacy Service (KneeCAPS): A personalised hīkoi (journey) through care

Abstract

Background

Community-based Osteoarthritis Management Programmes may empower people to self-manage and alter their disease trajectory, reducing burden on individuals and communities, particularly for those with current health inequity such as Māori (Indigenous New Zealanders).

Objective

To explore the perceptions of people with knee osteoarthritis receiving an interprofessional, community pharmacist-led intervention involving personalised education and referral for evidence-based care in community settings.

Design

Cross-sectional design using qualitative methods based on Interpretive Description. Pharmacists, physiotherapists, and dietitians provided the KneeCAPS intervention in a randomised controlled trial in Aotearoa New Zealand, in which people visiting community pharmacies were screened for knee osteoarthritis. Intervention arm participants were offered tailored explanations, goal setting support and referral for land-based exercise, dietary support, and/or medication review. One-to-one interviews explored intervention participants’ perceptions of the service delivery.

Results

Twenty-three participants (Māori = 11, non-Māori = 12) took part in an audio-recorded interview after exiting the trial. Analysis by a team of Māori and non-Māori researchers identified two main themes. Theme 1 captured perceptions of value in receiving goal-orientated, empowering and cohesive collaborative care that led to sustained behaviour changes. Māori participants also reported holistic and culturally responsive care. Theme 2 highlighted unclear processes or missed opportunities in service delivery, unmet expectations, and disruptions in care due to complexities outside of KneeCAPS.

Conclusion

Personalised and culturally responsive care is associated with changes that motivate ongoing self-care. It is important to adapt information and service provision to meet changing needs and external complexities at all points of the care journey.

1. Introduction

Osteoarthritis Management Programmes (OAMPs) are service models for delivering guideline-recommended non-surgical osteoarthritis (OA) care that include education, exercise and/or weight management, and that are implemented in real-world settings with longitudinal reassessment and progression.[1] OAMPs have the potential to empower people to self-manage their OA more effectively and alter their disease trajectory, reducing the high burden of OA on individuals and communities and reducing the need for surgical care. OAMPs are not currently systematically resourced or delivered in Aotearoa New Zealand (NZ); rather, pathways are often fragmented and characterised by unwarranted care variation, particularly with respect to accessing non-surgical care.[2]

Community-based OAMPs can deliver guideline-recommended interventions earlier in the disease course and with fewer barriers to those experiencing socioeconomic disadvantage or health inequity.[[3], [4], [5], [6], [7], [8]] The burden and prevalence of OA is higher in Māori (Indigenous NZers) than non-Māori NZers.[9] Māori report negative OA health care experiences, including marginalisation, racism, and inadequate understanding of priorities by clinicians [10].

The Knee Care for Arthritis through Pharmacy Study (KneeCAPS) was a randomised controlled trial run in two regions of NZ that evaluated the effectiveness and cost-effectiveness of a community-based OAMP for adults living with knee OA.[11] As an equity-relevant trial.[12] KneeCAPS aimed to have equal participation of Māori and non-Māori participants so that Māori contributed equally to trial outcomes, and differential intervention effects for Māori could be explored.[13] Community pharmacy was chosen as an opportunity to initiate equitable OA care due to the accessibility of pharmacies in most communities and the lower access barriers, as well as the competencies and capabilities of pharmacists to contribute to OA care delivery to people with whom they have existing trusted relationships.[14,15]

KneeCAPS comprised up to four potential intervention components (each of which may act independently and interdependently) that were initiated and co-ordinated through community pharmacy. The first component was discussion with a pharmacist who presented a newly developed evidence-based booklet and general explanation about knee OA.[16] followed by a structured individualised consultation that supported the person to make sense of OA and identified participant-derived goals.[14,17,18]. Where appropriate and desired by the participant, the pharmacist made referrals for up to three intervention components: land-based exercise and physical activity prescribed by a physiotherapist, behaviour change-focused nutrition care from a dietitian, and/or medication review by the pharmacist. The pharmacists’ care coordination role included two to three follow-up discussions with participants to support service access and ongoing behaviour change, and review goal attainment. All clinicians were trained to deliver the KneeCAPS service through a structured e-learning programme and interprofessional workshop. Novel to this OAMP, training included a bespoke Cultural Safety module that included information on connecting with Māori users of the service and understanding Māori models of health and wellbeing.[19]

There is currently inadequate understanding of how people with OA experience OAMPs and the barriers and facilitators to OAMP participation in different settings.[1,20,21] Even less is known about OAMP experiences in Māori and other Indigenous populations. This information is vital to inform implementation of OAMPs within the unique NZ health system and context. This study aimed to explore the experiences of Māori and non-Māori people who participated in KneeCAPS and identify opportunities to develop the service provision.

2. Methods

2.1. Design

This cross-sectional qualitative study was embedded within the KneeCAPS trial [11]. This study is reported according to the consolidated criteria for reporting qualitative studies (COREQ; Supplementary 1). The study complied with the Declaration of Helsinki and ethics approval was granted by the Central Health and Disability Ethics Committee (2022-EXP-11725). Written informed consent for participation in the trial included an option to be contacted for an interview upon trial completion. Those who agreed to an interview gave separate informed consent to take part in the interview.

Qualitative interview data were collected and analysed using Interpretive Description.[22] Analysis aimed to develop broad themes and ideas for improving or implementing KneeCAPS, rather than in-depth analysis of participants’ lived experiences. Interpretive Description is a theoretically flexible methodology useful for enhancing clinical understanding while producing practical, actionable outcomes for health service implementation. Grounded in an inductive philosophy and an interpretivist stance, it recognises the constructed and contextual nature of patient-participants’ experiences while acknowledging the subjectivity of clinician-researchers in identifying patterns and meaning within the clinical context of the study.[23,24]

2.2. Sampling frame

KneeCAPS intervention arm participants (n = 121) were eligible if they had not taken part in the longitudinal case study interviews (n = 97 remaining). Following completion of their 12-month outcomes survey and trial exit, MB used maximum variation sampling to ensure diversity across key characteristics: 1) demographic and clinical features (ethnicity, age, gender, pain duration, existing diagnosis or diagnosed within the study) and 2) free-text survey responses indicating favourable or unfavourable views, experiences, or outcomes. Interview sampling aimed to include equal numbers of Māori and non-Māori participants to ensure that Māori perspectives were equally represented in the qualitative analysis and any differences in experiences or perceptions could be explored.[13]

2.3. Data collection

A semi-structured interview schedule was co-designed and iteratively refined based on feedback of the lived experience research partners and the interdisciplinary research teams, both of which comprised Māori and non-Māori team members (Supplementary 2). Open-ended questions explored participants’ experiences and perceptions of knee OA, information and treatment received within or outside of KneeCAPS, health behaviour changes, and perceived changes in knee or general health. The interview schedule was kept flexible to allow participants to focus on and raise issues they considered important. Māori participants were given the option of a Māori interviewer. All interviews were conducted in English, and the meanings of Māori terms used by participants were checked with Māori members of the research team. Participants were interviewed via telephone or web-based video-conferencing (participant’s choice) by one of three experienced qualitative researchers: a female Māori pharmacist (LV), male Māori general practitioner (RK), and female non-Māori non-clinician researcher (MB). Interviewers were unknown to participants prior to the study and introduced themselves as researchers who were not involved in delivering KneeCAPS care and who were interested in the participant’s views and experiences. Interviewers emphasised there were no right or wrong answers and all feedback was valuable for improving the KneeCAPS service in the future. Enrolment into the qualitative study, data collection, and data analysis occurred concurrently to allow insights from earlier interviews to inform subsequent ones. Enrolment stopped when no new themes were identified. Interviews were audio-recorded and transcribed verbatim; field notes were also kept for capturing contextual details. Participants did not review transcripts or validate findings, and no repeat interviews were conducted.[23] Data were managed using NVivo 12 software (QSR International Pty Ltd, Melbourne, Australia).

2.4. Data analysis

Qualitative data were analysed by researchers who were blinded to the main trial findings.[25] In addition to the main coding analysis of all transcripts that was undertaken by three researchers (MB, BD, SD), the transcripts from Māori participants were analysed independently by one of three Māori researchers (RK, SS, LV) who were blinded to the main coding structure, meaning that Māori transcripts were analysed twice (Figure 1). This was to ensure that the findings were culturally- clinically- and contextually-relevant. The coding framework was inductively developed by MB who performed line-by-line coding, allowing multiple codes to be applied to single segments of data and using a constant comparative process to gain insights into similarities and differences across the transcripts. Coding and early theme documentation was cross-checked and discussed with BD and SD following the first 13 consecutive interviews to further develop the emerging analysis (3 Māori and 10 non-Māori participants, reflecting the early trial recruitment profile). Following this, MB coded the remaining transcripts and explored relationships between and within emerging categories with increasingly higher levels of conceptualisation. Māori transcripts were analysed in parallel. RK, SS, and LV each analysed three or four transcripts, then met to discuss emergent codes and themes. Codes derived from the non-Māori and Māori analyses were discussed between the analysis teams during a face-to-face workshop. Codes were reorganised into new groups based on repeated patterns identified across the dataset and as the researchers discussed the emerging themes, proposed new codes, resolved areas of non-consensus, and revised coding frameworks. Following this, MB reassessed all data against the revised coding framework to ensure the Māori researchers’ views were incorporated. The final thematic framework was discussed at a workshop with the wider research team to ensure that themes represented the data and highlighted instances where Māori and non-Māori views differed.

Figure 1.

Analytic process including parallel analysis of transcripts from Māori participants.

2.5. Reflexivity and rigour

Researcher bias reflexivity included keeping memos and an audit trail whilst acknowledging the value of insights gained by interpreting data through the lens of clinician-researchers; this lens enabled a focus on clinically relevant information and practical outcomes for KneeCAPS service implementation. Interviews were analysed and interpreted by a professionally and culturally diverse team, and explicit steps were taken to ensure Māori data were analysed from a Māori lens. The Māori (LV/RK/SS) and non-Māori (MB/BD/SD) analytic teams each consisted of one male and two female researchers, with backgrounds in family medicine, pharmacy, physiotherapy, health psychology, health coaching, Māori health, and Kaupapa Māori [Māori approach and ideology; see Glossary] research. Sense-checking of the emerging thematic framework with the wider research team included additional backgrounds in dietetics, nursing, and rheumatology. Negative case analysis was used to broaden understandings and challenge initial interpretations of the data. In an iterative and reflexive process, earlier interview data were reanalysed as new information and codes emerged from later interviews and from research team members’ feedback.

2.6. Lived expert involvement

Two people with lived experience of OA contributed to this study. JC was a core KneeCAPS research team member and MN was a Lived Experience Research Partner. Both JC and MN contributed to the workshop where the thematic framework and interpretations were discussed. Details according to the Guidance for Reporting Involvement of Patients and the Public Short-Form (GRIPP2-SF) are in Supplementary 3.

3. Results

In total, 36 potential interview participants were approached; of these, 23 were interviewed (11 Māori, 12 non-Māori) (Table 1). Two Māori and two non-Māori potential participants declined to be interviewed (reason unknown), one Māori potential participant was unable to be contacted, and eight participants (Māori =7, non-Māori =1) agreed but the interview did not occur because of death in family (n=3), busy with new job (n=1), or an unknown reason (n=4). The mean duration of interviews was 42 min (range 24 to 71 min). Of those who declined or did not attend an interview, there were equal numbers sampled for favourable or unfavourable reasons.

Table 1.

Participant demographic and knee pain details.

Code	Gender	Age range	Ethnicity	Prior OA diagnosis	Duration of knee pain (years)	Free-text survey answers indicating overall favourable or unfavourable views, experiences, or outcomesa
01_N	Man	60–69	NZE, Dutch	Yes	2.75	Unfavourable
02_N	Man	60–69	NZE	Yes	2	Favourable
03_N	Man	80–89	NZE	No	2.25	Unfavourable
04_N	Woman	60–69	South African	Yes	7	Favourable
05_N	Man	60–69	NZE	Yes	30	Favourable
06_N	Woman	70–79	NZE	Yes	2	Favourable
07_M	Man	60–69	Māori, NZE	Yes	2	Unfavourable
08_M	Man	70–79	Māori	Yes	5	Unfavourable
09_N	Woman	50–59	NZE	No	20	Favourable
10_N	Man	60–69	NZE	No	8	Unfavourable
11_N	Man	40–49	NZE, Dutch	Yes	2	Unfavourable
12_M	Man	70–79	Māori	Yes	4	Favourable
13_N	Woman	50–59	NZE	Yes	2.5	Unfavourable
14_M	Woman	40–49	Māori	No	27	Favourable
15_N	Woman	40–49	NZE, Chinese	No	4	Favourable
16_M	Man	50–59	Māori	No	2.5	Favourable
17_M	Woman	60–69	Māori, NZE	Yes	2	Favourable
18_M	Woman	60–69	Māori, NZE	Yes	10	Unfavourable
19_M	Man	50–59	Māori	Yes	4	Unfavourable
20_M	Woman	60–69	Māori	No	4	Unfavourable
21_M	Woman	60–69	Māori	No	3	Favourable
22_N	Woman	60–69	NZE	No	2	Unfavourable
23_M	Woman	70–79	Māori	Yes	10	Favourable

Code: M = Māori, N = non-Māori; Ethnicity: NZE = New Zealand European.

^aDichotomous classification made by one researcher based on overall impression gained through review of a participant’s free text responses across the 3, 6, 9, and 12 months surveys (to help guide maximum diversity sampling).

Participants talked about KneeCAPS as a personal hīkoi [journey], from initiation of care planning and navigating, through to a transition to self-care with ongoing support (Figure 2). Two key themes were identified with roughly equal contribution to each theme by Māori and non-Māori; occurrences where Māori expressed differing or additional views to non-Māori are explicitly highlighted. Examples of verbatim data extracts are presented in Table 2, Table 3.

Figure 2.

Themes 1 and 2 and sub-themes (1.1, 1.2, 1.3, 2.1, 2.2) relate to participant experience of the Knee Care for Arthritis through Pharmacy Service (KneeCAPS), aligned with stages of the care hīkoi (journey).

Table 2.

Participant verbatim quotes supporting Theme 1: Surprisingly valuable and empowering journey, presented with subthemes and key points frequently mentioned by participants.

SUBTHEME 1.1: STEPPING STONES TO THE RIGHT PATH FOR ME Participants described choices, care that suited them, and tools to keep going
The ability to choose (and to access) desired and required care that matched needs and preferences
The right person for me	I’ve often thought about going to see a nutritionist… I asked a doctor about weight management several years ago and she was really rude… [The pharmacist consultation] was really useful. Even their suggestion to choose the personal best nutritionist, ‘this is the one that’s closest to you with the best parking’ [was] just really helpful. 15_Na
Choice that aligns with my beliefs and world view	I could choose what I wanted to choose to suit myself… Often a lot of the time, from a Māori perspective not a lot of consideration is given to belief systems [and] being able to choose has always been huge with me... [KneeCAPS] was really wide open for me, it was a really positive thing in terms of me being able to choose what I [wanted], but I would think that this would apply to anyone not just Māori. 12_M
Choice that aligns with what I need and how I need it	The first thing that I realised once I got onto the programme and started to get some information [from the pharmacist] was resting them [my knees] wasn’t really going to help… [so] for me, I chose the physio programme because I felt that that was probably what I would gain the most from… [because] it’s all very well to go online and have a look at everything, but to get it from a physiotherapist, that was more important to me. And to know that I was doing the exercises the correct way. 02_N
Care that suited my needs and what is important to me
Modified to match my response and progress	I have arthritis in my back, and that sort of hampered me in some of the exercises [the physiotherapist] had me doing, but we got over that… she showed me another way of doing it… She was able to pinpoint what exercises were the best for me… [And] she gave me some exercises to help with my back as well. 24_M
Met my cultural and condition needs	My beliefs in Kaupapa Māori [Māori ideology and approach], it’s everything. Everything in your whare [house (metaphorical)] has to align with one another… You want to be welcomed, you want to make sure that the service provider’s mind is open that we’re not all the same …. It’s asking the questions that need to be asked so that they can do the best possible job that they can do, and so people are feeling like ‘oh yeah I want to be here, I feel important when I’ve come here’. … That’s how that [non-Māori physiotherapist] made me feel when I went to physio. He made me feel better, he made me want to go back and I’ve got to keep going back, because he was engaging me in the mahi [work] that he was in, and he believed in, to help me... How [clinicians] receive people, in general not just Māori but also Pākehā, it’s the same. We all need the help and it doesn’t matter if you’re black or white, you deserve a good service. 14_M
Developed relationships that grew my confidence and trust	The important part is that engagement right at the beginning… I felt confident enough to trust [the pharmacist], trust the discussion we had, and continue… If you find somebody who’s going to be cold and, you know, just deliver the goods etc, there’s no relationship. 22 _M
Tools to keep going fit my lifestyle and help me to help my knee, my whole wellbeing, and my future
Approaches that I could integrate into my lifestyle	I already go to the gym… [the physiotherapist] gave me very good exercises that I could include in my gym routine. 01_N
Aligned with my worldview and wider goals	At the end of the day I could do for myself what I had studied, and ways of helping myself …. So, overall hauora [health] was my goal, but now it came to the knee because for me to be able to run and walk I needed to look at how can I help myself. 21_M
Ongoing support and motivation	Every time I went [to the pharmacy] she always kept saying, ‘Are you still doing the exercises? Are you making sure you're-?’ and she kept a check on me as well. I found that really helpful… It kept me accountable… It was just those general type questions which made me think to myself well actually I'm feeling a lot better because I do it. 03_N

SUBTHEME 1.2: PROCESS OF CHANGE Participants described interrelated mindset and behaviour changes
Changing the way I think about osteoarthritis	[Before KneeCAPS] doing exercise with the pain, I thought ‘oh no you don’t want to do anything, you know. You’ve got to look after your knee.’ So it was an educational process as well, and a mind changing one. 02_N Some of the wording in the pamphlet, I didn’t quite understand what it was about... It was a little bit overwhelming. Kind of took me a bit to sit down and read... [then] my first initial visit to physio, he explained a little bit more [and] that’s where I started oh yeah, okay, cool. 16_M [The information] was interesting enough, in its own right it was fine. But it didn’t appear that it was going to do much for me, it wasn’t clear as to what the steps were going to be... I thought, am I supposed to be going to get [physiotherapy and dietetics] or what’s going to happen? 01_N
Changing the way I think about treatment options and what I can do	Before it was like, oh another winter, I wonder how many more winters I'll go through before I actually have to have a knee replacement done? Whereas now it's like I'm not even thinking about knee replacements. It's not even on my agenda. So I guess it's just a mindset switch. 004 _N
Motivating me to do something about my knee	The KneeCAPS study kicked in at the time when I was experiencing the pain but wasn’t keen to ask for help. But I knew that the pain was there and wondering well maybe one day it gets so bad, do I leave it until then?... [KneeCAPS] led me to think oh shucks, well hey I better do this because it showed signs of not improving. 21_M
Having knowledge and confidence to change behaviours	With the confidence that I have from the knowledge now that I’m not going to do myself any damage by remaining really active, or even increasingly active, I’m just going to go for it as hard as I can. 22_N
Growing self-reliance and self-motivation to continue behaviours	Not relying on other people… it just gives me more motivation to do it because I can do it by myself rather than having to always go and ask. 16_M It’s helped me immensely, and with my mental health as well… Thank you so much for allowing me that opportunity to be big and brave… it boosted my confidence to no end. 18_M

SUBTHEME 1.3: I PUT IN THE MAHI (WORK), AND IT WORKED Participants described reinforcement of change through experiential learning and recognising changes in their symptoms and functional ability
Learning through doing	[Doing KneeCAPS physiotherapy exercises] it kind of made me realise that I don’t have to do much to continue to support the health of my knees. Sometimes I guess you think sometimes it might be just all too hard, but it’s not. 09_N
Putting in the effort and recognising the rewards	I put the mahi in because I was really, really wanting this pain to go away… I’ve given myself a pat on the back because I made it. I did it. I did it. Yeah I did. I’m really, really proud of myself. 18_M
Learning through reflecting on progress	It’s all very well getting that information then [from the pharmacist], but having gone through it [KneeCAPS service] from the beginning to where I am at now, I have no doubt that that is totally correct… I believe it because it’s happened to me. 02_N
Progress motivating maintenance of behaviour changes	I’ve just sort of stuck to a pretty simple programme that seems to still work. 02_N

^aParticipant codes identify the participant identification number (01–23) and their ethnicity (M = Māori; N = non-Māori).

Table 3.

Participant verbatim quotes supporting subthemes 2.1 and 2.2, aligned to steps in the care hīkoi (journey) at which KneeCAPS fell short of its potential.

Step in the care hīkoi (journey)	SUBTHEME 2.1: MISSED STEPS (MISSED OPPORTUNITIES)	SUBTHEME 2.2: MISSTEPS (COMPLEXITY OUTSIDE KNEECAPS)
Initiating the service	[It was] a rushed process and I was almost inconveniencing [the pharmacist]… It has to do with the resources, the people who were available to do it. So, if I didn't kind of feel I was actually wasting their time, or I can do this myself don't worry about me, [then] I probably would have [rated the service more highly]. 04_N	Life is very busy. I’m a nana and a mum, and my sister’s just been newly diagnosed with cancer so I’ve been going back and forth to [location] to support her as well, and work and home. But I must remember myself, to look after myself. 14_M
Navigating options	I said that was ok, I didn’t need a nutritionist… I kind of felt I know what to do, I just don’t do it… Maybe I was a little bit hasty in just assuming I knew stuff because you can always learn something... [later on] I thought I would’ve missed that boat, I couldn’t go back at this point since I’d already said up front what I wanted. 09_N	The KneeCAPS programme, I got told that they don’t talk about bone-on-bone, but in my head, to me, it was bone-on-bone… I’ve been back for more X-rays and they’ve told me it’s bone-on-bone… Definitely, from what I’m told, bone-on-bone and I can feel it. 18_M
Access to care	They were very snobby where I went, and it made me feel uncomfortable because I was already a big girl. The receptionist made me feel uncomfortable there. You walk in and they have beauty products, and they’re very rich product thingy, very expensive… I didn’t find it inviting. I didn’t find the service welcoming. I just felt uncomfortable… I didn’t really want to be going to a place where I didn’t feel okay, so I didn’t go there [I left before seeing the dietitian]. 14_M	I did try and contact a dietitian, but life was so busy that I didn't go ahead with all of that, so it just didn't get utilised… Called, called, called back, missed calls… it might have been coming up to Christmas and then that was the end of that. 11_N
Engaging in care	I went once to her and she gave me these exercises to do… I didn't see any personal value in continuing those regime of exercises because it just made my knee very sore… I just couldn't see how it would improve it without going through a whole lot of pain. And of course, I was also concerned doing more damage, and then I'll have to go and have an operation which I don't want to do. I mean, it was at the back of my mind, I didn't really express that clearly or anything like that, but it was a concern of mine... [but] I can see what they were trying to do, they were really trying to strengthen my knee. The physio was quite a good and astute person, and I don't want to knock her. 10_N	I probably haven’t ended up getting as much out of [KneeCAPS] as I would have liked, or I would have otherwise, because [catching] COVID was a big thing for me. It was a huge interruption of my programme, and I’ve struggled to get back into the routine that I was in prior to COVID… There’s a whole lot of interruptions that have happened, that have sort of been one after the other, that have prevented me. 12_M The physio I didn’t feel was long enough. When the KneeCAPS programme finished I wasn’t finished, if you know what I mean... [When I started physio] I still had reservations, those negative thoughts because I thought well I really want them to fix my leg, and so it took me a little while before I started believing that something was going to-, I was going to come out there with a positive result... [but] oh the physio[therapist] was marvellous, she was wonderful. She’s very, very good at what she was trying to achieve with me. I just remember I had a very good experience with the physio. 18_M
Transition to self-care	[The service ended when I] just left. Said goodbye and was sent on your way, sort of thing. 05_N	Not enough time in the day. I think the things that are challenging for me is that I’m just so busy. But I have to make time. And it’s usually when I’m really in pain and then I stop and think, oh my gosh, I need to do this, but then I’m tired. 14_M
Ongoing support	I didn’t realise, and I don’t think it was very clear, that actually I could go back [to the pharmacist] and discuss my medications, like I did with the physio and the dietician… My relationship with the pharmacist was purely specifically to outline what was going on in the study, and that was it. … The role of the pharmacist, that could havebeenmuch more developed… That probably would have been quite helpful to have got that information right at the beginning. 17_M	I haven’t seen him for a long time because each time I’ve had to go into the pharmacy he doesn’t seem to be there. So whether he’s still there or not, or whether I just happened to go when he’s not working, I don’t know. 06_N

Participant interview code: M = Māori, N = non-Māori.

3.1. Theme 1: Surprisingly valuable and empowering journey

Theme 1 was the largest theme in content, with most participants describing positive perceptions.. Participants talked about choices and care that suited them, perceived progress or benefits, and the tools they had to keep going.

3.1.1. Sub-theme 1.1: Stepping stones to the right path for me

Participants spoke at length about their appreciation of having choices and options, effective care, and self-care tools that aligned with their lifestyle, goals, values and preferences. Key enablers included personalised and cohesive support delivered by capable and motivating clinicians and, particularly for Māori, the cultural responsiveness of care received.

Early establishment of a trusting relationship was important to making meaningful decisions about care for most participants, and particularly for Māori. Participants felt that the KneeCAPS clinicians developed a good understanding of who they were as people, made them feel valued, gave them choice, and put them in control. This resulted in personalised support that suited them and their whānau [family and extended family]. For many participants, co-creating specific goals with the pharmacist provided the incentive required to accept referral offers and engage in care. For Māori, creating whānau participation goals was clearly important as some Māori participants further remarked that they would not have engaged in care had this not occurred early in the process. One Māori participant emphasised her appreciation, saying that taking control of her own choices aligned with her Māori belief system but rarely occurred in her experiences of health care. Participants expressed surprise and gratitude at being offered funded support to access care previously inaccessible due to lack of awareness or resources. Most participants felt supported to navigate care services. Although physiotherapy group exercise was an option, most participants perceived high value in one-to-one physiotherapy and dietetic consultations, at times contrasting this with prior less favourable experiences of group programmes.

Clinicians’ competence and credibility (built by being approachable, supportive, engaged, trustworthy, knowledgeable, authoritative and solution-focused) sparked motivation and accountability. Some clinicians stood out by showing deep interest in or commitment to the participant’s health and goals, but often it was many small inputs from different clinicians that produced cumulative effects.

Many participants described experiences of care that influenced their broader physical and mental health. Some Māori participants described examples of culturally responsive care that they said positively influenced their “taha hinengaro” [mental and emotional wellbeing] and “overall hauora” [health]. They explained that non-Māori clinicians provided meaningful care by embodying and demonstrating commitment to values intrinsic to Kaupapa Māori [Māori approach and ideology] such as continually strengthening connection, and Hauora Māori [Māori philosophy of health] such as integrating all pillars of health as described in Sir Mason Durie’s Te Whare Tapa Whā model. This commitment inspired engagement in the other care options (physiotherapy, dietetics, medication review) available through KneeCAPS. Some Māori participants expanded on their views of Māori beliefs and values to say that a system that works for Māori will also work for non-Māori because knee pain and good service applies to everyone.

Participants discussed gaining “tools” to use going forward, which included knowing what to do and an intentional plan for ongoing behaviour change (such as progressing knee-specific exercises). Participants recognised that “it’s up to me now” to keep up the lifestyle changes to maintain good results, and some tied this to long-term goals of longevity and avoiding knee operations. Ongoing follow-up discussions with pharmacists were sometimes scheduled but usually opportunistic when visiting the pharmacy. These provided motivation or accountability.

3.1.2. Sub-theme 1.2: Process of change

Interrelated changes in mindset and behaviour occurred iteratively across participants’ care journeys. Some participants described making changes despite only receiving the OA booklet and brief initial explanation from the pharmacist (because they declined or did not attend an in-depth pharmacist consultation and therefore were not referred for care, or the service fell over in some way; see Theme 2). Other participants commented that the booklet and initial explanation were either overwhelming or not enough. Participants valued dietitians and physiotherapists further explaining information and providing additional resources (e.g. pictures, exercise videos) to support their understanding. Participants described subsequent experiential learning as central to solidifying the messages received from clinicians, for example the confidence they gained by noticing that their knee pain did not get worse when they followed advice to increase activity.

Participants described new concepts or reminders of past knowledge as “flicking a switch” or building confidence to make behavioural changes, such as changing food choices, increasing physical or social activity, using less medication, or reaching out for help. Mindset switches particularly related to myths about pain (vs. damage), movement (vs. avoidance), and self-management (vs. inevitable degeneration until surgery). Information and care were described as trustworthy and particularly impactful when timing aligned with the person’s stage of condition (e.g., early-stage OA when they could change their trajectory) or other health issues that spurred them to re-evaluate their lifestyle (e.g., diabetes, heart health, family member’s health). Similar to descriptions of care provision, many participants talked about their mindset and behavioural changes within wider concepts such as empowerment, taha hinengaro [mental and emotional wellbeing] and overall hauora [health]. They reflected on how their knee health journey interfaced more broadly with their bodily health and mental health.

3.1.3. Sub-theme 1.3: I put in the mahi (work), and it worked

Participants described their outcome achievements not only in terms of “seeing rewards” for their knee pain and function (such as increased mobility and strength), but also through a broader lens that included mental wellbeing, social connection, and progress in other health areas such as improved blood glucose or weight management. Many spoke, sometimes with great pride, about their own efforts to put in the mahi [work] necessary to get the job done.

Good outcomes often reinforced mindset changes and fuelled motivation to engage in care and healthy behaviours. In contrast to prior expectations that significant effort or financial commitment would be required (such as joining a gym), many expressed pleasant surprise that relatively small and comparatively low-effort changes could create large benefits because clinicians targeted and adjusted care to fit them and their lifestyle.

3.2. Theme 2: Missteps and missed steps

Although participants talked mostly of positive perceptions and experiences, Theme 2 encompassed occasions when participants had less favourable experiences. This smaller theme captured missed opportunities for KneeCAPS to adapt or adjust to the person, as well as complex interacting features outside of KneeCAPS.

3.2.1. Sub-theme 2.1: Missed steps (missed opportunities to adjust to where the person is at)

Instances of insufficient goal setting or lack of change in participants’ OA knowledge and mindset occurred when participants felt there was inadequate time for explanations and discussion (e.g., short discussions, distracted pharmacists, or unclear processes). This could affect engagement if parts of the information were considered untrustworthy or if the need for care, or care options offered, did not align with how the person made sense of their problem (e.g., how dietitians might help OA). Some participants felt that care options were not explained, whereas others subsequently regretted their initial refusal and were unaware they could revisit this decision.

Service-related issues affected some participants’ commitment to book or attend their first appointment, such as not receiving expected contact from clinics and leaving the participant in limbo, long appointment waiting times, not being offered telehealth as an option, or reception staff not understanding the process. Several participants chose to stop care early because they did not receive the quick results they expected or they experienced pain flares, and two participants described clinicians inadvertently reinforcing the participant’s previous mindset that treatment was futile (e.g., clinician mentioned their own family member was unable to avoid an eventual knee operation). These participants simply did not return for another session and did not give their clinician feedback about their reasons for stopping care. Several participants felt that care “just stopped” without formal transition to self-management. Most participants did not fully comprehend the pharmacist’s intended central coordination and support role and did not realise follow-up discussions were part of the service. In addition, opportunities to re-engage with the pharmacist when visiting the pharmacy for other reasons were missed if the pharmacist was offsite or unavailable.

3.2.2. Sub-theme 2.2: Missteps (complexity outside of the KneeCAPS service)

There were challenges with fitting KneeCAPS into participants’ complex lives. Issues with uptake of, or engagement in, care usually related to other health issues or life getting in the way (e.g., sickness, travel, out of a routine, competing priorities) but also included access issues (e.g., transport costs, inability to take time off work). Some participants said their lack of follow-up was due to them being difficult for clinicians to get hold of over the phone. Conversely, a few participants who used all six physiotherapy appointments felt unprepared for the transition to self-management. Challenges encountered during the self-management phase were “the curse of keeping it up”, which included low energy or motivation (particularly when pain-free), lack of accountability, or barriers (e.g., time, money, technology).

Fitting KneeCAPS care into the wider health system also presented challenges. Many participants reported concurrently receiving care from biomedically focused non-KneeCAPS health professionals who reinforced their previous mindset; for example, being told their knee had degenerated to “bone-on-bone” confirmed their expectations of inevitable surgery.

4. Discussion

The experience of participating in a community-based knee OAMP as part of the KneeCAPS trial was explored with 11 Māori and 12 non-Māori participants. Māori and non-Māori contributed roughly equally to each theme; most participants described personalised care, and several Māori participants specifically described culturally responsive care, that resulted in iterative mindset and behaviour changes, supported by empowerment-based narratives and experiential learning that motivated ongoing mental and physical investment in self-care. Some less positive experiences occurred when the service failed to accommodate aspects of participants’ needs or their complex contexts. However, most of these participants chose to describe unfulfilled needs or less favourable experiences within context of the aspects of their care that they were positive about and thought had gone well. These findings will aid interpretation of KneeCAPS trial results and inform future national OAMP implementation.

Aligned with experiences of health care for other long-term conditions, such as persistent low back pain, participants viewed their KneeCAPS participation as a hīkoi [journey].[17,26] Participants highly valued KneeCAPS’ emphasis on personalised care and choice of options that aligned with their individual needs, goals and preferences [27] and this was particularly valued by Māori participants. This approach was enabled by clinicians prioritising the building of genuine connections and taking time to understand each person holistically.[19] Many Māori participants described increased engagement and motivation when their goals were acknowledged and supported early in the care process. Some Māori participants noted that these culturally important aspects of care, embedded in KneeCAPS, are also applicable to, and valued by, non-Māori. These findings support the integration of clinician Cultural Safety training into other OAMPs, particularly those based in culturally diverse communities, and workforce capability training in OA care generally.[19].

While many participants opted not to use their full care allocation, others felt their care ended prematurely; introducing greater flexibility (such as enabling additional appointments for those requiring extended support, while allowing earlier discharge for those who gain independence) could enhance responsiveness. In contrast to common group-based OAMP delivery.[28,29] most participants preferred one-to-one care, citing prior experiences or expectations that group settings would not meet their needs. Requirements to attend group sessions have previously been identified as a barrier for some people with OA [30]. Similar to other research, participants perceived improvements across a range of aspects of their health [27]. Many were surprised that these changes took less effort than anticipated, suggesting that clinically effective behaviour change may be accessible and scalable for a wide range of people when aligned with the person’s mindset.

Participants described setting goals and learning about OA from physiotherapists and dietitians, illustrating that education and its influence on mindset and behaviour extended well beyond the initial pharmacist consultation. This demonstrates the importance of consistent and cohesive messages and collaborative care across disciplines and practitioners with different skillsets.[[31], [32], [33]] Māori participants’ descriptions of holistic and culturally responsive care aligned with clinician reports that KneeCAPS training, which included a strong focus on cultural safety, encouraged them to build meaningful connections and recognise Māori care needs [19]. This contrasts with experiences of institutional racism, marginalisation, dissatisfaction, and biomedically focused care previously reported by Māori [10,34]. Overall, participants appreciated the service’s focus on empowerment and participation, suggesting that principles embedded in KneeCAPS training translated to improved care experience for Māori and non-Māori with knee OA[19].

As a complex health intervention, KneeCAPS faced challenges that could limit its potential impact. Many of these were beyond the control of the service, such as other health challenges experienced by participants, personal life demands, and interactions with health professionals not trained in KneeCAPS that reinstated participants’ prior beliefs about structural degradation or the futility of non-surgical care. Impairment-based narratives are known to negatively impact self- and health-care choices.[17] Greater proportions of clinicians completing KneeCAPS training or becoming exposed to its messages could be a vehicle for shifting the health community OA narrative to more positive, participatory language. Additional barriers arose from the trial being embedded within routine clinical practice across diverse settings, where clinicians or clinic staff were sometimes unclear about processes or unable to provide timely appointments. Other issues revealed opportunities to improve the KneeCAPS service. Initial mindset changes or readiness to explore new perspectives appeared key to engaging in care and initiating behaviour change. Consistent with previous findings [35] when initial explanations were insufficient or information was perceived as untrustworthy, participants struggled to make sense of their care options, which resulted in limited engagement. Some participants discontinued physiotherapy due to pain flares or perceived inadequate progress, without discussing this with their clinician; this prevented programme adjustment or discussion of expectations. This highlights the need to proactively and regularly check in with patients about their care experience and how this aligns with their expectations, values, needs and preferences to minimise early programme exit. Low engagement or premature service exit could be mitigated by: identifying individuals who are ready and able to engage; ensuring adequate time is provided for connection and shared sense-making at service initiation; building shared expectations; continuously checking-in to adapt care and information; creating multiple pathways for re-entry into care; proactively scheduling follow-up discussions; and clearly explaining the service coordinator’s role to provide ongoing support, discuss concerns and navigate challenges.

This qualitative evaluation involved 20 % of KneeCAPS trial intervention arm participants. By including similar numbers of Māori (11) and non-Māori (12) participants, both groups contributed equally to findings.[13] This also allowed Māori participants to share views related to hauora [health], cultural responsiveness, and health system failure. Care was taken to ensure Māori transcripts were interpreted through a Māori lens. Interviews were conducted 12 months after service initiation to ensure that interviews did not influence the trial’s quantitative outcomes; [36] this enabled the participants to reflect on their KneeCAPS journey but may have resulted in recall-related information loss. We aimed for half of participants to be those who overall had less favourable views, experiences or outcomes according to their free-text survey responses, however, most of those selected for apparent unfavourable reasons shared predominantly positive views during the interviews. Thirteen potential participants (of whom ten were Māori) declined, did not attend, or were uncontactable meaning that important perspectives may have been missed.

This study focused on Māori and non-Māori experiences of OAMP participation in NZ. Our findings are potentially relevant to other settings, particularly those with high cultural diversity and/or persisting health-related inequities. Key learnings for successful and inclusive OAMP delivery include the importance of creating connection and shared understanding between patients and providers at OAMP service entry, and providing flexible and personalised care in a culturally-sensitive way that aligns with individuals’ needs, goals, values, and preferences. More broadly, our findings show the importance of integrating empowerment-based narratives and experiential learning across components of care, and providing opportunity for coordinated and collaborative interprofessional care.

5. Conclusion

Māori and non-Māori participants who received the KneeCAPS intervention conceptualised a hīkoi or care journey where they were supported to choose and use care options that matched their needs and preferences. Culturally responsive, empowering, and goal-oriented information and care created mindset and behaviour changes that motivated sustained engagement in self-care. Participants valued cohesive and collaborative messaging from practitioners with different skillsets. Examples of disengagement due to external complexities, unclear processes, or unmet expectations highlight factors that can be proactively considered in any future implementation.

Author contributions

All authors made substantial contributions to study conception or design, or data acquisition, analysis, or interpretation, and reviewed the paper critically for important intellectual content, approved the final version to be published, agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Role of the funding source

This study was supported by a grant from the NZ Health Research Council (HRC21-286). The funder had no role in the writing of the manuscript or in the decision to submit the manuscript for publication. SD’s time is also supported by the National Institute of Health and Care Research Applied Research Collaboration South West Peninsula (PenARC), UK. The views expressed are those of the author(s) and not necessarily those of the National Institute of Health and Care Research or the Department of Health and Social Care, UK.

Conflict of interest

All authors state that they have no conflicts.

Handling Editor: Professor H Madry

Glossary

Hauora

Māori philosophy of health and wellbeing

Hīkoi

Journey

Kaupapa Māori

Māori approach and ideology, incorporating knowledge, skills, attitudes and values of Māori society

Mahi

Work

Taha hinengaro

Mental and emotional wellbeing

Pākehā

New Zealander of European descent

Te Whare Tapa Whā

Māori model of health and wellbeing described by Sir Mason Durie, encompassing four pillars: physical, mental, social and spiritual

Whānau

Family, or family grouping

Whare

House

Appendix A. Supplementary data

The following are the Supplementary data to this article.