Participant characteristics
Thirty four stroke referrals were accepted by the ReACH team within the study period. Of these, four patients did not require on-going rehabilitation input, six patients required short interventions that were not underpinned by goal setting and one patient refused team input. The G-AP framework was implemented with the remaining 23 patients of which 15 were invited to participate in the study (eight were excluded as they were either being treated by DMcL (n = 6) or were not medically stable (n = 2). Eight patients provided informed consent to participate in the interview and have their case notes reviewed (see Table
1: Patients included in the study). The remaining seven chose not to participate.
Table 1
Patients included in the study
1
| M | 64 | White Scottish | Unemployed | Lives alone | moderate | yes | PT, OT, SALT |
2
| F | 59 | White Scottish | Bank clerk | Lives with husband | moderate | no | PT, OT |
3
| M | 53 | White Scottish | Engineer | Lives with wife | moderate/ severe | yes | SALT, OT, N, D |
4
| M | 78 | White Scottish | Retired | Lives with wife | moderate | yes | OT, SALT |
5
| F | 43 | White Scottish | Clerical worker | Lives with husband | moderate | yes | SALT, OT, PT |
6
| M | 65 | White Scottish | Retired | Lives with wife | moderate | no | PT, OT |
7
| M | 56 | White Scottish | Driver | Lives alone | mild | yes | SALT, OT, PT |
8
| F | 29 | White Scottish | Nursing auxiliary | Lives with husband | mild | yes | SALT, OT, PT |
Eight health professionals were invited to participate - two occupational therapists; two physiotherapists, one dietician, one nurse and two speech and language therapists. All agreed and provided informed consent to participate in the interview.
Practical experience of the G-AP stages
Patient and heath professional views suggested that each stage of the G-AP framework had a distinct purpose and made a useful contribution to the overall process.
Goal negotiation and goal setting
Although the goal negotiation and goal setting stage had a distinct purpose, they often unfolded as a continual process in practice with problems identified in the former informing specific goals set in the later. For example, Patient 5 talked about how forgetting household chores (for example, ironing her son’s shirt for work) led to a goal about using specific memory strategies to remember daily tasks. Health professional 5 described how a discussion with one patient about her frustration at people completing her sentences for her led to a goal about being able to finish sentences in day to day conversation.
Health professionals said they found the process of identifying general problem areas and goals in the goal negotiation stage relatively straight forward, but refining these into a specific problems and goals in the goal setting stage was more challenging and influenced by factors such as the patient’s recovery expectations and their cognitive and communication status.
Health professionals described a variety of tools and strategies to facilitate the process of negotiating and setting goals. Of particular importance was the use of Talking Mats® with people who had aphasia as one health professional explained:
Health professional 2 “M’s got severe communication problems, both receptive and expressive, so just sitting talking to him we would’ve got nowhere … So we used the ‘mats’ [Talking Mats®] quite early on and got some idea of the areas that he was particularly concerned about and then tried to use it in conjunction with this, the G-AP framework. He could certainly identify what mattered to him using symbols.”
Other useful tools at this stage included the work sheet entitled “Coming up with the goals” included in the G-AP record (see Additional file
3) and using a blank sheet of paper to develop a visual representation of goal priority areas. Patients and health professionals also reported useful questions or ‘stock phrases’, for example:
“Think about what you would like to be able to achieve by ……. (Future date)
” (Health Professional 2) or
“What sort of things did you enjoy prior to having the stroke?” (Patient 4, Patient 8) or
“Think of something very specific to do with that activity (e.g. cooking)
you would like to work on” (Health Professional 2). Giving patients examples of potential goals to consider was also seen as useful.
Action planning
Patients and health professionals described action plans as a series of ‘stepping stones’ or ‘targets’ that created a manageable route to achieving specific goals. For example;
Patient 2 “A. [rehabilitation assistant] used to take me down to [name of a shop] and then she’d come round with me, and then she’d take me down, and then she’d stand and watch me, then she’d take me down [pause 3 secs] and, and sit in the car, and let me come back. And then I got a taxi and met A. And then the last time I went down and came back in a taxi [myself].”
Action plans were often viewed as ‘homework’ by patients. Typically, they would be completed by the patient independently (for example, practicing a peg board activity to work on finger dexterity – Patient 3) or with support (for example, supervised practice using the bus – Patient 1). Health professionals reported numerous instances where progress depended on them completing an action plan rather than the patient for example, arranging a prescription for a supplement to improve nutritional state (Heath professional 4). Patient and health profession reports suggested patient adherence to action plans was usually high, with some exceptions.
Coping Planning and measuring confidence to complete plans
For all health professionals, these two aspects of the framework were a new and unfamiliar addition to their clinical practice. Those health professionals who discussed coping plans (only two of the eight health professionals interviewed) viewed them as useful. For example:
Health professional 7 “I have spoken to folk about barriers. (Em), not every time, but I think it is definitely a useful thing to do. If people think through what might get in their way of them achieving these steps [action plans], if they've particular tasks to do, I think (em), you can kind of problem solve if there is a particular barrier.”
Health professional reports suggested that barriers were sometimes considered in a general way rather than in relation to specific action plans. For example, Staff member 8 explained how she had considered the impact of osteoporosis on her patient’s general ability to achieve rehabilitation goals.
Patients did not refer to coping plans per se, but did discuss strategies they had used to overcome anticipated barriers to successful action plan completion. For example, Patient 4 described how he had identified memory issues as a potential barrier to goal completion: He thought he may forget the steps required to access his on-line banking system. In response to this, the health professional developed a coping plan - she wrote down instructions to access the online banking and encouraged him to use the instructions if he got ‘stuck’ whilst trying to complete his action plan.
Health professionals viewed confidence as an important factor that would influence action plan completion; however, many reported they had not got into the ‘habit’ of using the visual analogue scale or preferred to measure confidence in an informal way as reflected in the following excerpt;
-
Interviewer:
“Do you use the confidence scale?”
-
Health professional 4
: “I don’t”
-
Interviewer
: “You don’t?”
-
Health professional 4 : “Bad habit - Not having got into the habit of using it. It’s almost doing it without actually formalising it. So I don’t formalise it in terms of giving the individual [the patient] a score or asking them how they would score themselves, but I do do it.”
Some found measuring confidence it a time consuming step at the end of the planning stage. One health professional reported she did not fully understand the purpose of the scale and so was not inclined to use it.
Appraisal and feedback
Both health professionals and patients viewed this stage as an opportunity to gauge progress; however, some health professional reports suggested that it was implemented intermittently to review goal progress rather than on an action plan by action plan basis.
Patients who judged they were doing well were encouraged. One patient described how she felt after successfully climbing up a step: “Wow, my leg is not as bad as I thought it was!” (Patient 2). Conversely, negative self-appraisal was discouraging as highlighted when another patient described how he felt after not achieving his goal of completing a crossword, “I was just becoming really angry with myself and frustrated.” (Patient 8).
The feedback health professionals gave to patients was reported to serve a variety of purposes, the main one being to enhance confidence (self-efficacy) through praising success. As one patient explained, “Every move I made, she said well done, and indeed things cheer you up, it’s amazing what it does psychologically just to say well done!” (Patient 2). Feedback also provided patients’ with reassurance, for example - “You’ll get there, don’t worry about it” (Patient 7) and advice (often about pacing), for example “You’re giving yourself too much to do, just take your time, take it on a week to week basis and you’ll get there” (Patient 3). Health professionals reported that the feasibility of implementing the appraisal and feedback stage could be compromised by time constraints.
An important acceptability issue raised by health professionals was that the appraisal and feedback stage made it
explicit to patients if they were not making progress, and that this could have a negative impact on their well-being. Different strategies used to manage this were reported including, avoiding or not explicitly addressing goals that had not been achieved, re-framing failure in a positive way or providing support and reassurance. For example:
Health professional 3 “I think you have to be careful about how you deal with that [goal non-attainment] with the patient and how you approach it, that you do it in a positive way saying, ‘well OK, this is what we started, this is what we thought, you know, it’s not quite worked out like that, but we’ll go back and we’ll try something else’.”
Conversely, none of the patients voiced concerns about goal non-attainment or how it might impact on their well-being. Although failure to achieve action plans and goals was said to be disappointing, some patients said they used what they had learned from their experience to re-assess their situation and to consider more realistic goals. For example, one patient worked as a driver and said that getting his driving licence was an important goal for him so he could return to work. However, failing his driving assessment was an important experience that led him to conclude that getting back to work was not a realistic goal.
Patient 7 “After I had my, my driving assessment, I knew that the information [information as he was driving the car for example signs and oncoming vehicles] just wasn’t coming quick enough…. I thought it was doable, but I’ve been realising [since] I got through the assessment, and how I done, that I said - this is not going to be doable.”
Decision making
Health professional and patient accounts suggested that appraisal and feedback lead to explicit decisions being made about what to do next the basis of whether satisfactory progress was being made or not. Collectively, appraisal, feedback and decision making performed a regulatory or adjusting function within G-AP. If progress was satisfactory - subsequent action plans were set and/or new goal(s) negotiated as illustrated in this health professionals account of a conversation she had with a patient after a successful visit to the local shop:
Health Professionals 5
“Right, we’ve been to the shop and everything’s gone fine, next time I’m going to get you to walk in [the shop] and I’m going to wait at the door. Are you happy with that?”
If progress was not satisfactory, new re-targeted plans were set or the goal was downgraded or abandoned. When discussing his lack of progress due to deteriorating health, one patient reflected:
Patient 1 “We [the patient and the health professional] sat down and we discussed it all, you know, but the goals have come down [been downgraded] now, know what I mean? It’s just not going to happen, what we thought at first [going into town on the bus].”
Factors that contributed to goal non-attainment included an unexpected deterioration in physical heath, lack of anticipated recovery from stroke related impairments or underestimating the impact impairments would have on achieving a particular goal.
The G-AP patient held record
On the whole, patients and health professionals valued the G-AP patient held record. Most patients’ referred to it and said it was particularly important at the beginning of the rehabilitation input where it guided what they practised and helped them monitor progress. Patient 2 referred to the record as her “
bible” as she looked at it daily to keep her on track with the action plans she had to work on – even taking it on holiday for reference. Some also suggested that the G-AP record allowed family members to find out about the goals and action plans in place, creating an opportunity for them to consider how they could contribute to the process, for example, suggesting new action plans and /or encouraging and supporting their family member to complete them. Those patients who did not use the G-AP record said they preferred to discuss goals and action plans with the health professional and commit them to memory rather than paper. A marginal but important view expressed by one patient with cognitive difficulties was that the G-AP record was confusing and an annoyance;
Patient 8 “ I just feel, feel there is so much paperwork here, here and I get confused with it and tha, that’s me, I’m not a novice to pay, paperwork believe you me, but I feel that there’s just too much there and my, my some, some, sometimes my concentration levels are poor and to sit, I’ve got to sit and really think, (er), right [going through papers] no wait a minute look for [goal] two.”
Health professionals also reported benefits of using the patient held record, for example:
Health professional 5 “I think the folder’s [G-AP patient held record] a great idea … I have always felt very strongly that the people that we work with should have something to refer to.... And they need to have notes of what our expectations are of them so it works extremely well from that point of view. It’s something that they each focus on when we meet at review and whatever, and see the progress they’re making.”
It was seen to prompt implementation of each stage of the G-AP framework and to enhance interdisciplinary working (for example, setting goals in the context of those already set or suggesting action plans under goals set by other professionals). However, some health professionals reported a logistical problem getting information written in the G-AP record back into patients’ department based service records (in spite of using carbon paper sheets within the record). This negatively impacted on team discussion at weekly goal review meetings which was viewed as a significant problem. They also noted that patients with reading difficulties did not benefit from a written record of their goals and action plans. Finally, some health professionals reported that writing goals and action plans in the G-AP record was a new and added task for them which required extra time to complete and had not been habitually integrated into their routine practice.
Views on factors that facilitated and inhibited G-AP implementation
A sub-theme identified from the data was the factors that facilitated and inhibited use of G-AP in clinical practice. These could be grouped under the headings of health professional factors, patient factors and process factors (summarised in Table
2: Factors that facilitated/ hindered use of the G-AP framework). Facilitating factors included: patients having previous experience of goal setting, health professionals being confident in their goal setting abilities and rehabilitation assistant involvement in the process. Inhibitory factors included: patients who felt emotionally overwhelmed with the consequences of stroke, health professionals lacking experience in post stroke recovery and work-load pressures. A particular inhibitory factor identified by health professionals was severe receptive and expressive aphasia. In these instances, professionals said they tended to use G-AP with family members on the patients behalf. All of these factors interacted to create an optimal or less than optimal condition for G-AP implementation.
Table 2
Factors that facilitated/ hindered use of the G-AP framework
Patient factors
| • Previous experience goal setting | • Cognitive impairment e.g. poor insight, executive dysfunction |
• Familiarity with the G-AP process | • Communication difficulties |
• Being in the ‘right frame of mind’ | • Complex emotional/ social/ health issues |
• Unrealistic expectations |
Process factors
| • Rehabilitation assistant involvement | • Individual health professionals’ waiting lists resulting in team members initiating input at different times |
• Goal meetings in the patent’s house | • Time pressures leading to incomplete implementation of the process |
• Consistent use of G-AP record | • Staff absence |
• Explaining the G-AP process to patients at the outset |
HP factors
| • Experience of using goal setting | • Lack of experience using goal setting |
• Experience of post stroke recovery | • Lack of experience of post stroke recovery |
• Confidence in goal setting abilities | • Not habitually using G-AP in routine practice |
• Lack of confidence using G-AP |
Other
| | • HP and patient having differing views about priorities and/or what constitutes improvement |
Partnership working
A second sub-theme within the health professional and patient accounts was the bespoke and dynamic nature of partnerships between health professionals and patients. Respondents talked about differing roles in the partnership. Patients described their main role as informing health professionals about their goal priorities and giving them feedback about what they felt they could and couldn’t achieve. Health professionals described their main role as guiding and encouraging patients through the G-AP stages, for example helping them to tailor unrealistic or general goals into specific, achievable goals and providing education and information that would help them make informed goal choices.
Accounts from patients and health professionals also suggested that a continuum existed in relation to who took the lead during the G-AP process with ‘patient led’ at one end and ‘health professional led’ at the other. When patients preferred health professionals to take the lead, they said that health professionals were the ‘experts’ with experience of dealing with other people in the same situation, or had specialist knowledge that made them better placed to suggest goals that would help them in their recovery. When asked about setting goals, Patient 2 said: “I went along with E (physiotherapist); she was right 100% like you know.” When patients took the lead, they tended to have experience of setting goals, either in a previous life context (for example, in a previous job or hobby) or during their current rehabilitation episode. They also had clear ideas about valued activities they wanted to resume and a belief that recovery, to a large extent, was dependent on their own efforts as Patient 2 explained, “It’s in here, in my head really, my own attitude has got to be right to get myself where I want to be”. Regardless of who led, both groups described each stage of the process as collaborative with agreed goals and action plans reflecting patients’ priorities and unique personal circumstances.
Perceived benefits of G-AP
Patients primarily judged the effectiveness of G-AP on the basis of whether they were able to carry out their goals as planned. When asked to explain how she knew that G-AP had worked for her, Patient 5 said in relation to her goal of returning to getting her shopping at the supermarket: “Because I was doing it, and pleased to be doing it.” Patients described how identifying personal goals and action plans increased their motivation by acting as an incentive – something to aim for. A repeated view was that achieving goals and action plans produced a sense of achievement and an important boost in confidence. For example;
-
Patient 8: “When, when you manage to achieve that goal you think, oh yes well I can go, go, go a wee bit further now.”
-
Interviewer
: “And was that positive?”
-
Patient 8: “yeah, yup because right at the beginning of the process you feel so neg, neg, negative and you feel how am I going to get my life ba, back together again?”
A general view held by patients was that the positive relationship they had established with health professionals was a significant factor that contributed to their recovery.
Health professionals talked about the benefits of G-AP at the patient and practice level. There was a prevalent view that the collaborative nature of the G-AP process helped patients have a greater sense of control and participation in their rehabilitation. Additionally, it was felt that patients were more focused on their goals, which had a positive impact on their motivation and adherence to the goal plan. Health professionals perceived their practice to be more patient centred (with goals set reflecting patient rather than professional priorities), goal focused and efficient (due timely changes being made to the goal plan if progress was not being made).