In this study we followed the overall PSP process described in detail in the JLA Guidebook.15 The PSP comprised two main phases: identification of questions and a prioritisation process. Figure 1 shows a simplified flow chart of the JLA method, illustrating how inputs (such as statements and issues) from the initial survey were processed to form questions and thereafter the top ten priorities defined in the present study.
Insert Fig. 1 about here
Throughout the PSP process, a JLA advisor and an expert group have assisted the research team. The role of the 10-strong expert group was to advise on appropriate language, methods and inclusive engagement strategies to reach a diverse range of people living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI were included.
Identification of uncertainties
An online survey using Microsoft Forms was conducted in November and December 2021 among people living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI were included. Respondents were recruited on social media, at clinics and in networks all over Sweden. The survey took five weeks. After three weeks, we checked the respondents’ characteristics for representativeness; this resulted in extra efforts to reach men with SCI, people with high-level SCI and Stockholmers.
In total, 243 people responded to the survey. Table 1 summarises their personal particulars. The inputs (such as issues and statements) provided by the respondents were first checked to ascertain that they addressed potentially unanswered question. If, for example, the inputs explored needs or involved a quest for information about rules and regulations they were considered beyond the scope of the research. In a content analysis, similar inputs were merged to formulate questions that, in turn, were then categorised according to content.
Table 1
Personal characteristics of respondents in the initial survey.
| | People living with SCI | Relatives | Health professionals | Personal care assistants | Total |
|---|
| | n = 128 (53) | n = 34 (1) | n = 78 (32) | n = 3 (1) | n = 243 |
| Gender | | | | | |
| Male | 70 (55) | 6 (18) | 15 (19) | 0 | 91 (38) |
| Female | 58 (45) | 28 (82) | 62 (81) | 3 (100) | 151 (62) |
| Missing | – | – | 1 | – | 1 |
| Age, years | | | | | |
| Mean (SD) | 54 (11) | 54 (12) | 44(12) | 36 (8) | 51 (13) |
| Median (range) | 55 (28–78) | 54 (28–72) | 45.5 (22–68) | 33 (30–45) | 51 (22–78) |
| < 30 | 2 (2) | 2 (1) | 13 (18) | 1 (33) | 18 (8) |
| 31–45 | 25 (20) | 5 (17) | 24 (32) | 2 (66) | 57 (24) |
| 46–60 | 62 (50) | 15 (50) | 30 (41) | – | 107 (45) |
| 60–75 | 34 (27) | 8 (27) | 7 (9) | – | 49 (21) |
| > 75 | 2 (2) | – | – | – | – |
| Missing | 3 | 4 | – | – | 7 |
| Municipality group | | | | | |
| Large cities and nearby municipalities | 54 (46) | 16 (48) | 28 (39) | 1 (33) | 99 (44) |
| Medium-sized towns and nearby municipalities | 46 (39) | 13 (39) | 26 (36) | 1 (33) | 86 (38) |
| Small towns/urban areas and rural municipalities | 18 (15) | 4 (12) | 18 (9) | 1 (33) | 41 (18) |
| Missing | 10 | 1 | 6 | – | 16 |
| Time post injury (TPI) | | | | | |
| Mean (SD) | 19 (15) | – | – | – | – |
| Median (range) | 16 (0–55) | – | – | – | – |
| 1–5 | 26 (21) | – | – | – | – |
| 6–10 | 17 (14) | – | – | – | – |
| 11–15 | 18 (15) | – | – | – | – |
| 16–20 | 12 (10) | – | – | – | – |
| 21–25 | 5 (4) | – | – | – | – |
| 26–30 | 8 (7) | – | – | – | – |
| > 30 | 37 (30) | – | – | – | – |
| Missing | 5 | – | – | – | – |
| Cause of injury | | | | | |
| Traumatic | 97 (80) | – | – | – | – |
| Non-traumatic | 24 (20) | – | – | – | – |
| Missing | 7 | – | – | – | – |
| Type of injury | | | | | |
| Complete | 55 (45) | – | – | – | – |
| Incomplete | 67 (55) | – | – | – | – |
| Missing | 6 | – | – | – | – |
| Tetraplegia | 61 (49) | – | – | – | – |
| Paraplegia | 63 (51) | – | – | – | – |
| Missing | 4 | – | – | – | – |
| Relative | | | | | |
| Partner | – | 18 (53) | – | – | – |
| Parent | – | 12 (35) | – | – | – |
| Sibling | – | 2 (6) | – | – | – |
| Child | – | 1 (3) | – | – | – |
| Friend | – | 1 (3) | – | – | – |
| Missing | – | – | – | – | – |
| Profession | | | | | |
| Occupational therapist | – | – | 12 (16) | – | – |
| Physiotherapist | – | – | 13 (18) | – | – |
| Social worker | – | – | 2 (3) | – | – |
| Physician | – | – | 9 (12) | – | – |
| Psychologist | – | – | 1 (1) | – | – |
| Rehab assistant | – | – | 2 (3) | – | – |
| Nurse | – | – | 14 (19) | – | – |
| Assistant nurse | – | – | 21 (32) | – | – |
| Missing | – | – | 4 | – | – |
Insert Table 1 about here
Literature review
A literature review was conducted, primarily using PubMed, to determine whether every question was answered or unanswered by the current literature. In line with the JLA guidelines, only reviews were included, but we allowed up to five years of reviews (instead of the three recommended by JLA) so as not to miss any relevant ones. We used two overall blocks of search terms, one for our target group and one for reviews. For each question, those blocks were supplemented with specific blocks derived from Medical Subject Headings (MeSH) terms and their associated entry terms (Appendix 1, sheet 2). Several questions were of a kind that medical journals may not answer; for these, both CINAHL and PsycINFO were also used to assess the status of evidence (Appendix 1, sheet 3).
All reviews found through every search on every question were assessed in Rayyan, an online and mobile browser for literature review.16 The assessors were a clinician, a researcher, a linguist and a person with lived experience. Initially, two of the assessors investigated whether the question was answered or unanswered by the literature, and if they did not agree a third person assisted and/or we discussed it in the research team.
Several reviews partially answered the questions — that is, provided initial evidence, which was noted (Appendix 1, sheets 2 and 3). This step, which goes beyond the JLA guidelines, did not affect whether the questions were included in the ensuing steps.
Interim prioritisation survey
An online survey, using the Swedish University Computer Network (SUNET) Survey tool, was conducted in May and June 2022 among people living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI were included. Respondents were recruited in social media, clinics and networks all over Sweden. The survey was open for seven weeks. In total, 272 people responded. Table 2 shows the respondents’ personal characteristics.
Table 2
Personal characteristics of respondents in the interim prioritisation survey.
| | People living with SCI | Relatives | Health professionals | Personal care attendants | Total |
|---|
| | n = 156 (57) | n = 26 (10) | n = 83 (31) | n = 7 (3) | n = 272 |
| Gender | | | | | |
| Male | 75 (48) | 6 (23) | 18 (22) | 1 (14) | 100 (39) |
| Female | 81 (52) | 20 (77) | 64 (78) | 6 (86) | 171 (63) |
| Missing | – | – | 1 | – | 1 |
| Age, years | | | | | |
| Mean (SD) | 53 (13) | 53 (14) | 47 (12) | 49 (13) | 51 (13) |
| Median (range) | 52 (18–79) | 52 (31–81) | 48 (23–87) | 55 (30–61) | 51 (18–87) |
| < 30 | 11(7) | – | 5 (5) | – | 17 (6) |
| 31–45 | 27 (17) | 7 (28) | 33 (40) | 1 (14) | 68 (25) |
| 46–60 | 73 (47) | 10 (39) | 34 (41) | 1 (14) | 121 (44) |
| 60–75 | 39 (25) | 7 (28) | 10 (12) | 4 (57) | 57 (21) |
| > 75 | 4(3) | 1 (1) | 1(1) | 1 (14) | 6 (2) |
| Missing | 2 | 1 | – | – | 3 |
| Municipality group | | | | | |
| Large cities and nearby municipalities | 66 (43) | 12 (48) | 38 (47) | 3 (50) | 119 (45) |
| Medium-sized towns and nearby municipalities | 50 (32) | 7 (28) | 37 (46) | 1 (17) | 96 (36) |
| Smaller towns/urban areas and rural municipalities | 37 (24) | 6 (24) | 6 (7) | 2 (33) | 51 (19) |
| Missing | 3 | 1 | 2 | 1 | 7 |
| Time post injury (TPI) | | | | | |
| Mean (SD) | 21 (16) | – | – | – | – |
| Median (range) | 16 (1–61) | – | – | – | – |
| 1–5 | 25 (17) | – | – | – | – |
| 6–10 | 27 (18) | – | – | – | – |
| 11–15 | 21 (14) | – | – | – | – |
| 16–20 | 10 (7) | – | – | – | – |
| 21–25 | 7 (5) | – | – | – | – |
| 26–30 | 15 (10) | – | – | – | – |
| > 30 | 42 (29) | | – | – | – |
| Missing | 9 | – | – | – | – |
| Cause of injury | | | | | |
| Traumatic | 103 (70) | – | – | – | – |
| Non–traumatic | 44 (30) | – | – | – | – |
| Missing | 9 | – | – | – | – |
| Type of injury | | | | |
| Complete | 68 (45) | – | – | – | – |
| Incomplete | 82 (55) | – | – | – | – |
| Missing | 6 | – | – | – | – |
| Tetraplegia | 56 (38) | – | – | – | – |
| Paraplegia | 149 (62) | – | – | – | – |
| Missing | 9 | – | – | – | – |
| Relation | | | | | |
| Partner | – | 14 (54) | – | – | – |
| Parent | – | 8 (31) | – | – | – |
| Sibling | – | 3 (12) | – | – | – |
| Child | – | – | – | – | – |
| Friend | – | – | – | – | – |
| Missing | – | – | – | – | – |
| Profession | | | | | |
| Occupational therapist | – | – | 19 (25) | – | – |
| Physiotherapist | – | – | 17 (22) | – | – |
| Social worker | – | – | 2 (3) | – | – |
| Physician | – | – | 11 (14) | – | – |
| Psychologist | – | – | 1 (1) | – | – |
| Rehab assistant | – | – | 1 (1) | – | – |
| Nurse | – | – | 12 (16) | – | – |
| Assistant nurse | – | – | 14 (18) | – | – |
| Missing | – | – | 6 | – | – |
Insert Table 2 about here
The survey was in two parts. In the first, the respondents were asked to tick all the questions they considered important, whereupon a shortlist was produced. In the second part, respondents were asked to select the ten questions they deemed most important.
A frequency table was drawn up to show how often questions were selected, and the questions were then ranked in terms of priority. The rankings were analysed according to subgroup (target group, gender of people with SCI, cause and type of injury) to make sure no high-priority question was eliminated ahead of the final prioritisation workshop. The expert group advised the research group on the selection of questions to proceed to the final prioritisation workshop.
Final prioritisation workshop
The final prioritisation workshop was organised as a hybrid event with 14 participants in person and nine online. Participants were recruited in social media, clinics, and networks all over Sweden. In total, the participants comprised ten people living with SCI, eight health professionals, three people living with SCI who also worked as health professionals and two relatives who also worked as health professionals. The gender balance among those living with SCI was nine men and 14 women, their mean age was 54 years (SD 11.41, median 52, range 35–76) and the mean time post injury for the people living with SCI was 27 (SD, 12.14, median 29.5, range 12–52). The participants also included two representatives from the expert group.
From the interim prioritisation survey, a shortlist of the highest ranked questions was drawn up and sent to the participants in advance. Before the workshop, they were asked to familiarise and reflect on the questions and to compile their own priority ranking.
After an initial introduction, the participants were divided into four groups. The intention was to achieve a balance among the target groups and in terms of geographical distribution in each group, but this was not fully implemented owing to the hybrid format. At this stage, one group comprised participants online, while three groups comprised participants in person. In the first small-group discission, all the participants presented their top three and bottom three priorities in order to identify similarities and differences among the individuals’ rankings. This was followed by merging of individual priorities to form an agreed initial ranking of questions from each individual small group. All the groups’ rankings were then weighted and used to draw up a master ranking list. (Details of the ranking procedure may be found in the JLA Guidebook.15)
In the second small-group session, new groups were formed so that participants were mostly placed with people who were new to them. In the new groups, participants were asked to discuss the rankings and propose changes. Here again, the new ranking of questions from the session was recorded and weighted to produce a further ranking list.
The second ranking list was discussed in a large group, with all participants needing to agree on a final list of priorities.
The workshop facilitators had no connection with SCI or the JLA method, but were trained by our JLA adviser in line with their programme. Observers from the research team provided supplementary technological support for the online group(s) and, where necessary, information about the PSP process in the group discussions.
