How does it feel to be a problem? Patients’ experiences of self‐management support in New Zealand and Canada

Abstract Background The impact of long‐term conditions is the “healthcare equivalent to climate change.” People with long‐term conditions often feel they are a problem, a burden to themselves, their family and friends. Providers struggle to support patients to self‐manage. The Practical Reviews in Self‐Management Support (PRISMS) taxonomy lists what provider actions might support patient self‐management. Objective To offer providers advice on how to support patient self‐management. Design Semi‐structured interviews with 40 patient‐participants. Setting and participants Three case studies of primary health‐care organizations in New Zealand and Canada serving diverse populations. Participants were older adults with long‐term conditions who needed support to live in the community. Main outcome measures Qualitative description to classify patient narratives of self‐management support according to the PRISMS taxonomy with thematic analysis to explore how support was acceptable and effective. Results Patients identified a relationship‐in‐action as the mechanism, the how by which providers supported them to self‐manage. When providers acted upon knowledge of patient lives and priorities, these patients were often willing to try activities or medications they had resisted in the past. Effective self‐management support saw PRISMS components delivered in patient‐specific combinations by individual providers or teams. Discussion and conclusions Providers who establish relationships with patients can support them to self‐manage and improve health outcomes. Delivery of taxonomy components, in the absence of a relationship, is unlikely to be either acceptable or effective. Providers need to be aware that social determinants of health can constrain patients’ options to self‐manage.


| INTRODUC TI ON
Health systems risk being overwhelmed by the significant impact of long-term conditions-the "healthcare equivalent to climate change." 1 Ongoing illness is affecting a growing number of older people, especially those who are poor and belong to ethnic minorities. Many experience multiple concurrent conditions that require complex care with different treatments and involve a range of various health-care providers. 2 People with long-term conditions often feel they are a problem, a burden to themselves, their family, friends and even health providers. Patients, and providers, often struggle to "control" long-term conditions and "failed management" is repeatedly cast as a patient problem, 3 even though providers can have deficits in knowledge and confidence, face time constraints and find care coordination a challenge. 4 There is an urgent need to transform how community-based primary health care supports people with long-term conditions to self-manage, take more control over their health and improve their health outcomes. Providers must be aware of patients' needs and preferences 5 to be effective in improving patients' health, defined as the "ability to adapt and to self-manage." 6 A recent systematic review of reviews summarized evidence on interventions that support people to self-manage their long-term conditions. 7 In the process of their review, the authors constructed a taxonomy of provider activities to support patient self-management (14 components, see Appendices 1 and 2). Pearce et al 8 presented the rationale and development of the taxonomy, which they called PRISMS (from the overall project: Practical Reviews in Self-Management Support), and tested it against an existing support manual for patients who had survived cancer. The authors clearly distinguished between "direct" patient support by providers, and "indirect" support that providers themselves might receive from the organizations in which they work. They explicitly excluded indirect support from the taxonomy.
We subsequently assessed whether we could identify each category of provider activity within narratives from patients with longterm conditions. 9 We argued that the patient is the ultimate arbiter of whether self-management support has occurred and been acceptable and effective. We identified 11 of the 14 components in patient narratives and found evidence for the others in narratives from their health service providers.
This study extends our previous work on the PRISMS framework 9 using data from a wider range of patients. Our objective was to offer providers advice, from patients, on how to effectively support self-management (the PRISMS framework advises on what providers might do).

| Setting
Data were collected in 2015 by interviews with patients in three case studies that were part of a programme of investigation into implementing community-based primary health-care services in New Zealand and Canada. We did not specifically seek a countrycomparison, but sought patient populations that differed by age and gender, as well as ethnicity and culture, geography (urban and rural) and model of primary care delivery. The organization (case study) is described only to give context to patient-provider interactions. The unit of analysis is the individual patient, not the provider or the organization. The overall study and the case studies are described in more detail elsewhere. 10,11 Based in northern New Zealand, case study one was a not-forprofit community trust that for more than 20 years has delivered services to a rural population of approximately 20 000 of whom 5000 are indigenous Māori. Services include primary medical and nursing care, public health, mobile nursing and programmes in schools and marae (traditional meeting places). Care is delivered in clinics, or in patients' homes, by a small multidisciplinary team that includes a nurse practitioner, doctor, nurses and community health workers. The Trust provides Kaupapa Māori Services, which emphasize Māori culture and values.
Based in southern New Zealand, the second case study is a network that was extended following the 2011 Christchurch earthquake when services needed to be rebuilt and redesigned. Organized by the local district health board and primary health organizations the network serves a population of approximately 540 000 and includes urban and rural general practices, nurses, pharmacists, homecare providers and allied health professionals. Specific programmes and funding are dedicated to reducing hospital admissions, including programmes that "pull" patients from hospital to home for shortterm intensive services, home medication management programmes and care coordination.
Based in Ontario, Canada, the third case study was a longstanding not-for-profit community care organization serving a population of 6500 whose services included meals on wheels, day programmes, homemaking, supportive housing and a multidisciplinary primary health-care team. The organization was originally designed for, and continues to predominantly serve, the Chinese migrant population.
Additional interdisciplinary assessment and care including collaboration between primary care and community services is provided for patients with complex care needs.

| Participants and interviews
Participants were all patients within the case studies, had two or more long-term conditions, and lived in the community (ie, not residential care). We defined a long-term condition as ongoing or recurring and which could have a significant impact on a person's life. The definition included disability and mental health conditions. The age for inclusion was 50 years or older to accommodate Māori who have poorer health outcomes and a higher burden of multi-morbidity than non-Māori of the same age, often compounded by relative poverty. 12 Participants were selected for variation by ethnicity (primarily Māori, European, and Chinese) and gender. Patient interviews have been described elsewhere. 11 Briefly, discussions were guided by patients' responses to validated questionnaires about patient perceptions of managing everyday activities; 13 assessment of health services for chronic illness care; 14 culturallymediated experiences of health 15 and the impact of their material standard of living. 16 The majority of patients volunteered in response to posters in primary care practices. Nine patients were identified as potentially eligible to take part in the study by a nurse or care manager who asked their permission to pass contact details to the research team. Participants were interviewed at a place of their choice and were able to bring a family member or support person. All participants gave written consent to their interview being recorded.

| Analysis
The PRISMS taxonomy-a summary of extensive literature on provider self-management support to patients-offered a framework for analysis of patient data in relation to their own selfmanagement experiences. Thus transcripts were read for evidence of delivery of PRISMS components as experienced by patients (deductive coding), and we collated the data under codes relating to provider activities in the PRISMS framework. An inductive thematic analysis sought insight into how self-management support was provided, what made it effective and acceptable to patients, and what they wanted, but did not get. This coding and analysis resulted in our grouping PRISMS components for reporting, because patients' narratives described combined components. The coding was undertaken by AF and verified by NS and TK. Quotes were confirmed by consensus of all authors to illustrate issues patients perceived as most important.

| RE SULTS
Forty patients were interviewed across the three case studies (see Table 1). They were aged between 50 and 94 years and 25 were women. The majority of participants in case one were Māori, in case two were New Zealand European, and in case three were Canadian Chinese.
PRISMS component 1 (provision of information to explain the patient's long-term condition) was the most frequently identified.
Provision of easy access to support or advice when needed (com- When interpreting the data, we were struck by a sole emergent unifying theme: relationships as the primary and pervasive method to enable providers to deliver effective self-management support and that patient self-management is intermediary between relationships and improved patient outcomes. While we document multiple examples of what providers did (Appendix 1), we focus here on how patients wanted to be supported because this offers actionable guidance to providers. First, we expand on the importance of relationships, and how these are manifest, followed by a series of provider actions and patient experiences in relation to specific PRISMS components.

| Relationships-how to support selfmanagement
Patients perceived self-management support as effective when they had a relationship with their nurse, nurse practitioner, doctor or community worker, no matter what component was delivered.
When patients did not have a relationship with such a person they were less likely to disclose information that could prompt providers to recognize opportunities for appropriate self-management support. One hallmark of a good relationship was that the provider was able to elicit and receive information from patients that reflected their needs. Yeah… they're interested in your whole well-being.
(case 1, female, 62 years) Relationships and self-management support enabled some patients to extend that support to family and friends; a useful outcome marker of effective provider support.
So, I've talked to all the kids, and we have mayonnaise but we'll have aioli now, we'll have that. We thought that Edam cheese was the best for us, but we've found out that cheddar cheese is better than Edam…there's a whole lot of things that we have found out, and my daughter has gone from 110kgs down to 70kgs.

| Information giving (components 1, 2, 14)
Providing information was seen as the most basic requirement of self-management support. To be effective, some patients needed the clinician to take more time explaining, perhaps repeating it several times before they properly understood.
I don't know if I'd be able to go back to a regular doc-tor…. I'll just get hoha (irritated) and everything will just go out the window again… they haven't got the time to explain what your medication's for, and why.

| Service access and coordination and social support (components 7, 8, 13)
Multiple examples revealed that people were left feeling disempowered and frustrated after poor service coordination, which often occurred over many weeks. For example, the direct action of providing equipment was not enough. The timing of equipment provided, and the follow-up once equipment had been provided were identified as important dimensions of care. A frail elderly woman needed a hospital bed to remain living independently. There was confusion when the bed was delivered unexpectedly, the mattress was not correct, and the contractor did not install the bed.

| D ISCUSS I ON
This study sought to identify, from the narratives of a diverse and has been linked to improved patient outcomes. 21 This may be because relationships determine the quality and completeness of information that is elicited and understood 22 and better information given and received in turn enhances health outcomes. 23 We are also suggesting that patient self-management is the intermediary step between relationships and improved health outcomes.
We have previously asserted that the onus to facilitate communication and relationships with patients lies with health providers. This is essential when patients experience powerlessness as a result of the compounding jeopardy from chronic conditions, poverty, minority status and age. 5 Providers always cite lack of time as a primary limitation on their ability to offer ideal care, including a lack of time to convey information and explanation (or translation) in a way that patients understand. 24 Some authors suggest it is not the actual time available that matters, but what is done within that time, 23  "health coaching." 34 What these models have in common is their use of well-structured open questions that help to "elicit" patient knowledge so that the provider can "provide" what is missing following an "elicit-provide-elicit-provide" pattern. 35 Example questions are given in Table 2. Each of these models requires specific training for providers.
What these models also have in common is that they seek to build a relationship for a health-enhancing purpose, that is they lead to provider action. We found that providers combined PRISM taxonomy categories. This was a practical way to organize care to meet patients' specific needs. We discuss provider actions under four groups: information giving; clinical planning, review and feedback; service access, coordination and social support; and practical help with medication.
Information giving related to condition diagnosis, prognosis, management, resources and lifestyle advice. It was often partial and often one-directional, in which case it could be paternalistic. It was perceived as acceptable and useful only if delivered in the context of knowledge about the person, which comes only through two-way dialogue. Clinical planning, review and feedback included agreeing on an action plan that would enable a patient to self-assess and adapt their own actions, if needed. This could be achieved only by working with the patient, checking their understanding, allowing people the autonomy to select strategies that are practicable while meeting their personal needs and priorities. We assigned practical help with medication to its own group given its importance in management of long-term conditions. Medication has great potential for benefit, or for harm. It is frequently used improperly and frequently not taken regularly by the patient even when benefit is likely. In this context, the World Health Organization has described improving medication adherence as the biggest single changeable factor to improving outcomes for patient with long-term conditions, and probably in reducing health inequities for groups who are socially disadvantaged. 36 Patients repeatedly commented with gratitude when providers im- components, disconnect between components when several were delivered, and not all patients with the same need receiving the same self-management support (as required by equity). What was offered to patients seemed provider-dependent, and perhaps timeand chance-dependent, rather than patient-dependent. The overall impression was of reactive and partial response to current patient need for self-management support, with limited coordination to ensure complete delivery. There was no evidence of long-term planning for long-term conditions.
While these groupings reflect the narratives of patients' in these cases, other patients narratives might have prompted other groupings. Nevertheless, we think that any combination of activities reflect the fact that the clinical and personal needs of any one patient are rarely met by just one provider action, and for that reason, selfmanagement support is typically delivered in a way that meets several taxonomy categories at the same time. The taxonomy, as a list, is not sufficient by itself to define what must be done to support selfmanagement; and it has nothing to say about how self-management support needs to be delivered.
One limitation of much of the self-management literature is that most participants are highly self-selected as interested, motivated and able to develop self-management skills. 37  We acknowledge that organizations can offer "indirect" support to providers who work in them; however, the PRISMS categories were constructed explicitly excluding the effect of organization on provider self-management support. Indirect support has been outside the scope of our analysis, but is an important area for future inquiry. How important is it to you to change (specific behaviour or activity)?

| CON CLUS ION
How confident do you feel that you can change (specific behaviour or activity)?
What could be getting in the way of changing (specific behaviour or activity)?
How do you feel about making a plan together next time you come? mutual respect can strengthen effective self-management support, and vice-versa in a virtuous circle. We also suggest that, by routine attention to self-management support for patients with long-term conditions, providers could reasonable expect to save time while increasing effectiveness, but this is for future investigation.

ACK N OWLED G EM ENTS
We wish to acknowledge the patient and carer participants for sharing their experiences and the case study providers for engaging with us for this research project. LTC = long-term condition; components 9-11 not found in our patient data.)

APPENDIX 2
Examples of what providers did to support patient self-management The most basic requirement to support medication adherence, in particular, is to ensure transport and cost barriers do not stop patients obtaining medication. "…they deliver it [medication] because they know that I can't go." (case 3, female, 80 years) "He's a really good, good guy [the pharmacist]. I don't always have the money to get my pills, he'll let me pay it off, he's really good." (case 1, male, 50 years)

Component 7. Provision of equipment
[Nurse practitioner] said, 'Have you got crutches?' I said, 'No.' 'Have you got a wheelchair?' 'No.' And she organized all of that. And they were there that day. (case 1, female, 50-64 years) "I've got this really hard mattress, and the occupational therapist said 'oh, it's probably because of your body weight … because they're all memory foam, and so she said, 'oh, I'll order another one for you, a better one', so I didn't hear from her for about 6-8 weeks" (case 2, female, over 74 years)

Component 8. Provision of easy access to advice or support when needed
"Actually, I know if anything… if I needed anything, needed to know anything, all I need to do is to ring [nurse practitioner]… if she doesn't see me straightaway, she'll make room for me next day." (case 1, male, 73 years) "That's an awful thing for me to say but you have to ring and ring and ring… I rang yesterday and I actually lost all the [battery] power in the phone." (case 2, female, 85 years). This negative example illustrates the basic need to be able to contact a front-line health provider Good primary care is insufficient if more specialized help is unavailable when needed. "They all treat me nice… if I have to be referred to a doctor who is more specialized, you have to wait a long time. This is almost six months. I mean I will be dead by then" (case 3, female, 84 years)

Component 12. Training/rehearsal for psychological strategies
In this negative example, the patient felt dismissed due to his age rather than helped to develop personal goals relevant to his/her age and health. "Yeah, they all [my friends] went on top of one another… My doctor's response was "Well, older people die!" I said "Yeah, but not all at bloody once!" Yeah… older people die, as if I didn't know it…" (case 2, male, 79 years). "Earlier on, I still thought I could [set goals]. But now, you know, even the doctors have told me that there's not much that they can do. It's just mainly up to me." (case 3, female, 84 years). This woman felt that opportunity was lost to set goals relevant to their life and illness. (Continues)