Data were collected May to July 2021. Participant demographic and health characteristics are reported in Table 2.
Table 2 Participant demographic and health characteristics
Participant characteristics
|
N=19 (%)a
|
Female
|
13 (68)
|
Age (years)
|
54 (SD 14.2)
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Ethnicity
|
|
|
New Zealand Māori
|
5 (26)
|
|
Pacific (Tongan)
|
1 (5)
|
|
Filipino
|
1 (5)
|
|
Bangladeshi
|
1 (5)
|
|
New Zealand European
|
11 (58)
|
Work status
|
|
|
Paid
|
13 (68)
|
|
Unpaid
|
2 (11)
|
|
Retired
|
4 (21)
|
Income
|
|
|
Low or insecure
|
10 (53)
|
|
Not low or insecure
|
6 (32)
|
|
Unsure
|
3 (16)
|
Rural domicile
|
9 (47)
|
Mean duration of symptoms (years)
|
5 (SD 6.0)
|
Care characteristics
|
|
|
Carpal tunnel surgery in past 12 months
|
6 (32)
|
|
No treatment beyond referral with or without medication prescription
|
7 (37)
|
|
Other careb
|
6 (32)
|
Care funder
|
|
|
Public
|
9 (53)
|
|
Private (self-funded) and Public
|
2 (11)
|
|
Private (self-funded and/or health insurance)
|
2 (11)
|
|
ACC (including accredited employer)
|
4 (21)
|
|
ACC initially, later declined and transferred to Public
|
2 (11)
|
BCTQ
|
|
|
Symptom Severity Scale (11-55)
|
|
|
|
Asymptomatic (11)
|
3 (16)
|
|
|
Mild (12-22)
|
2 (11)
|
|
|
Moderate (23-33)
|
5 (26)
|
|
|
Severe (34-44)
|
7 (37)
|
|
|
Very severe (45-55)
|
2 (11)
|
|
Functional Severity Scale (8-40)
|
|
|
|
Asymptomatic (8)
|
4 (21)
|
|
|
Mild (9-16)
|
3 (16)
|
|
|
Moderate (17-24)
|
8 (42)
|
|
|
Severe (25-32)
|
2 (11)
|
|
|
Very severe (33-40)
|
2 (11)
|
ACC, Accident Compensation Corporation; BCTQ, Boston Carpal Tunnel Questionnaire
a Percentages may not sum to 100 due to rounding
b Other care = one or more of education and advice, exercises, physiotherapy, hand therapy, chiropractor, splint, corticosteroid injection, acupuncture.
|
[Insert Table 2 here]
Thematic analysis
Five major themes were identified: Significant Impact, Waiting and Paying, Occupation and Onset, Information Scarcity, and Negotiating Telehealth Perspectives. Interpretation using NPT identified participant experiences relating to each of the four domains (Figure 3).
1) The theme of ‘Significant Impact’ was characterised by the severity of symptoms, waking at night, worry about what will happen, yet finding it hard to be taken seriously. Participants found CTS to be a condition for which it was hard to make sense of the symptoms – if these would be temporary or lead to permanent harm, and how bad these might get. It was therefore often not evident that care should be sought early, yet also a cause for alarm about the future in terms of livelihood and the degree of impairment. Charlene was a 54-year-old shop owner who had experienced CTS for over 30 years since being pregnant with her first son. Although she had seen her GP many times, as well as other health providers, she remained uncertain about what was going on in her hands. Over the past year, symptoms had worsened: her hands were numb all of the time and pain kept her awake half the night, yet referral for care required multiple GP visits. There were financial and social impacts of having to employ someone to do part of her job and enlisting help from whānau [family], but it was her declining physical state and symptom severity that concerned her most.
“What's going to happen, are they just going to shrivel up and fall off?”
Viewed using the NPT domains, two types of work: sense-making (Coherence) – trying to understand the condition and deciding when to get care, as well as relational (Cognitive Participation) – compelling clinicians to provide care and to garner help from others, were seen to be high.
2) ‘Waiting and Paying’ refers to the delays to care associated with under resourcing in the public system, costs, poor quality of care, employment precarity, and burdensome ACC processes, in contrast to quicker, easier access when paying privately or through private health insurance.
“[6 months ago]… he [GP] said well "you'll never get an appointment at the hospital". I don't have um life insurance or medical insurance… you're solely reliant on the public system…, like well I can't sleep at night. I can't lift, you know my hands are, one of them’s absolutely shot. Give us a hand here!” Female <65y
Knowledge of how long the wait might be was important for reducing the added burden of trying to manage life in anticipation of care, and for making decisions about whether to pay – although for several participants private care was out of reach.
Poor quality care including racism, was another cause for delays and extra work by participants. Tui-Helen, a Māori participant living in a rural setting, described the extra effort she put in to avoid delays which she predicted might occur based on past experiences of seeking care in which racism was implicit.
“…at the end of the day I'm not having them throw the excuse at me "you never came" because that seems to be the kaupapa [theme] that “…nobody turns up to the appointments", or "you make an appointment they don't come", and I thought well no I made my appointment, I'm going! You know, …e mana-aki [show respect, generosity], just you know be humble, and a lot a karakia [prayer].” Female, <65yr
Tui-Helen compensated for the unjust presumption made on the part of a health provider that she would be non-adherent or irresponsible, by making extra appointments, attending early, essentially engaging in what was being required of her by the health care providers to legitimate and speed up the route to access care.
Gloria, a 39-year-old manual worker from a rural setting, also experienced poor provider responses. She had symptoms of 3 years that were now interfering with her work and sleep.
“I said to my doctor, over the years on several occasions, "Oh I've got this problem… I’ve got this problem" and she's keep fobbing me off "Oh we'll keep an eye on it, keep an eye on it".”
These experiences reflect the NPT domains of Cognitive Participation (Enrolment, Activation, and Legitimation) and Collective Action (Relational Integration and Contextual Integration – the resourcing of time and consultation fees) to compel clinicians and health services to provide care, as well as Reflexive Monitoring to appraise the quality of care.
For Trina, a 38-year-old mum and part-time labourer, it was precarious employment that led her to decline referral for investigation and delay her care.
“If I actually knew for myself that it is or it isn’t carpal tunnel and then if it is, I mean, job prospects aside, I’d better deal with it before it gets sore again. I know what I’m doing [declining investigation and diagnosis] is not the right choice but life is busy and things are hard.”
Difficult ACC processes were another reason for long delays. The onus of responsibility on the participant to get the ‘proof’ [that symptom onset was work-related] was particularly fraught for those in small or unsupportive employment environments.
“I've got a form from a doctor to go through ACC and he's got [date 18 months ago]… I have to send them on to… whoever is I've been working for to fill out. And then the person at ACC said to me "oh we'll probably reject them"… he [GP] said "oh if they reject them we'll just apply again“… in all honesty I need to take these forms up to get them sorted... I just been so busy,… the [employer] and I don't get on…” Female <65yr
In contrast, a supportive work environment and strong relationships with and between health providers moderated participants’ work to compel ACC or other health services to provide care. Joseph, a 63-year-old who works in a meat processing plant with an active union presence and health providers onsite described his positive experience accessing care:
“It was that letter [health provider] wrote, it was clear evidence the length that I went because the carpal tunnel... the beauty of this, [health provider] knows the surgeon. [Health provider] knows the doctor and he write them… the help they need.”
Social position could also bring advantage, for example Celia, a 54-year-old health professional in a rural town noted that she was lucky because her position as a health sector worker probably contributed to her being offered an appointment (in the private sector) reasonably quickly.
3) Occupation and Onset identified symptoms that were associated with current or previous work in a wide range of industries, yet little acceptance of this by ACC. Melanie, a 25-year-old Māori participant from a rural town, described her onset of symptoms as the intensity of her work in cleaning and kitchen handing increased.
“It was from working. I was working one job, doing cleaning and then I started another secondary job, washing dishes and that's when it started, when I was doing both jobs.”
That ACC processes were “too difficult” was a common reason given by participants for either them or their health provider deciding not to lodge a claim. Participants also shared stories of family and friends who had ‘fought’ with ACC and the enormous effort involved, which informed participants’ own experiences and choices.
“[My brother] had surgery when he was about 21. Yes, he had to wait quite a long time to get that surgery. He had to fight a lot for it, because no one would take responsibility for it. So, they were trying to get it under ACC, because of been working in the McDonalds. That didn’t work out. So, he had to go through public… he had to wait on a very, very long waiting list.” Female, <65yr
“I have heard of another case, a friend, she was a fish filleter and she got it and then her claim was turned down, but she had to fight for it.” Male, <65yr
Claims were declined because of insufficient evidence that the occupation has caused the problem… to prove that occupation directly contributed to the problem is incredibly difficult with something of a gradual onset nature. The substantial relational work – Initiation, Enrolment, Legitimation, in addition to Enacting work involved in engaging with ACC was beyond the capacity of most participants.
4) Information Scarcity describes how good information is hard to find and rarely offered unless in the context of an extended private specialist appointment.
Julie-Anne, a 53-year-old mum and small farmlet operator, reflected that over her 10-year history of CTS including one surgery 7 years ago and a second more recently, no one had asked her about the chain sawing and heavy impact work she regularly did, or discussed how this might relate to her condition.
“I think yeah, if I had done that [activity modification and splint] earlier on... At that point, you could have information about what causes it and the things you can do to help yourself.”
Participants were unanimous in their desire for information about CT and its management. However, some who searched online found that the information often lacked relevance.
“A lot of the times the American websites come up and you think, I put New Zealand in, and still American sites come up. You're this and… I don't know, I don't know.” Female, <65yr
Going online introduced additional relational and sense-making work – avoiding unsolicited notifications or advertising and judging what was accurate versus inaccurate information. On the other hand, social media was emphasised to be a highly valued source of health information by the participant from a Pacific community, because of language accessibility, communicative style, and trust in the community.
5) Negotiating Telehealth Perspectives captured a range of views in which the role of telehealth in a future pathway was generally viewed positively and capable of serving the communication purpose, although it was highlighted that this may not work for some such as older relatives or kaumātua (elders) or those with connection difficulties.
“That would work! That would absolutely work… But the kaumātua need to be seen. Kanohi-ki-te-kanohi [face-to-face], and not put on the devices” Female <65yr
On the other hand, it was seen as a complete “cop-out” by a few. Several rural participants preferred to drive several hundred kilometres rather than use telehealth for a specialist assessment, although this also reflected their desperation to get something done.
In-person appointment was preferred by most, in part due to concerns about a virtual consultation being inadequate in the context of a physical problem and a sense that personal validation and important communication may be lost.
“So, if you do that one, if the surgeon will do that one through video, I can fake it or I can how can he touch my… hands?” Male <65yr
“A lot of decisions are made on body language and how you fold your arms or shut yourself off or something. So, that's the things to take into account when you're talking not face-to-face visits.” Male <65yr
Yet all except one participant would use telehealth if it reduced the wait and improved access for all. Financial assistance was pointed out as necessary for telehealth to be accessible – this was available from Work and Income New Zealand (social welfare) for a television but not yet for laptop computers.
The Cognitive Participation (relational work), Collective Action, specifically Interactional Workability and Relational Integration, and Contextual Integration (resourcing) of telehealth requires individual consideration.
A sixth, minor theme, ‘Complexity in Simplicity’ described the incongruency between the simplicity of the surgical procedure (CT release) and the enormous difficulty of accessing the care.
“How bad is this going to get before anyone's gonna, just snip! You know, like.” Female, <65yr