This study showed that family members of patients with SCI assign high importance to different aspects of patient participation, as do patients. Family members and patients also showed good agreement regarding their experiences of patient participation. Hence, family members’ perspectives on the importance and experiences of central aspects of patient participation in SCI rehabilitation correspond well with those of patients.
Although agreement between patients and family members on the importance of patient participation was high, some minor differences were in evidence. Specifically, family members assigned slightly greater importance to all domains of participation and a statistically significant difference, albeit with a small effect size, was found for the domain Planning and decision-making. It may be speculated that families have a more idealized, ‘outside’ view of patient participation and want only the most optimal standards of care and rehabilitation for their loved ones [30
]. The patients, on the other hand, may have a somewhat more modulated, ‘inside’ view of the relative importance of participation, based on their first-hand experiences of having undergone rehabilitation. As has been shown previously, patients’ preferences and capacities for participation may vary during the course of rehabilitation [20
] and it may be that the patients’ lower importance ratings reflect that optimal care and rehabilitation is one in which participation is not necessarily always expected or desired, but rather tailored to each patient’s unique and varying preferences and capacities [32
]. It should be stressed, however, that patient-family member disagreement was negligible and thus our results fail to corroborate other studies reporting lesser agreement in other patient groups [23
Excepting gender, socio-demographic and clinical variables were not associated with family members’ or patients’ importance ratings on any domain. Our finding that women patients considered patient participation to be more important than did men is in line with some previous studies assessing other importance aspects in relation to care and rehabilitation [32
], whereas other studies have not found a gender difference [35
]. Thus, larger studies are needed to examine the role that gender plays in patient participation in SCI rehabilitation, as well as in care and rehabilitation in general. The fact that the other socio-demographic and clinical variables studied were not associated with importance ratings confirms previous findings that patients’ needs, capabilities and preferences for participation are highly individual, independent of e.g. education level, age, mobility level or cause of injury [18
In rehabilitation in general and in SCI rehabilitation in particular, family members are encouraged to be active members of the rehabilitation team [3
]. The family can help connect the “pre-injury world” with the “post-injury identity” as they see the inner person as “the same person as before” [39
] and thus they play a crucial role in helping the patients cope with his or her injury and in providing them with emotional support [19
]. As discussion partners in planning and decision making [21
], family members may serve as sounding boards for the patient and contribute with information that the patient may have forgotten or missed. They may also serve as advocates for the patient in meetings with the staff. Our results suggest that family members also generally consider their involvement to be very important, and nearly equally important as patient involvement. However, the individual patient’s preferences for involving the family in SCI rehabilitation must be respected regarding which family members are to be involved and the extent of their involvement [18
The importance ratings principally reflect preferences or ideals for care and rehabilitation, whereas experience ratings reflect perceptions of the degree to which opportunities and conditions for participation were actually provided. As was the case with importance ratings, experience ratings of participation were high, indicating that the family members felt that opportunities and conditions for participation were provided often or always. Importantly, patients showed substantial agreement with their family members in this regard, which is in line with another study among cancer
patients showing good agreement on aspects such as receiving information about treatments, progress and self-care; being given opportunities to participate in decisions; and being treated with engagement and understanding by the staff [41
Cronbach’s α coefficients were all above 0.70 for all PPRQ domains in the family member sample and nearly as high as in patients [26
], indicating good internal consistency for group level comparisons [29
] and suggesting that the PPRQ may be used with some confidence in assessing the importance and experiences of patient participation among family members of patients with SCI. Nonetheless, other psychometric
properties of the family member version of the PPRQ need to be evaluated. Moreover, as was the case in the patient version [26
], ceiling effects were present for the importance ratings and therefore more work needs to be done to evaluate the utility of the PPRQ importance ratings both for use in research and clinical settings.
There are some methodological considerations that should be kept in mind when interpreting the results of this study. It is important to point out that patient and family assessments were conducted on average six years after injury. The retrospective nature of the assessments naturally has implications for both the results and the applicability of the PPRQ for use during initial, rehabilitation intense inpatient care. There is a risk that the respondents have changed their internal standards, values and/or meanings, i.e. response shift [42
], and thus that their assessments may not truly reflect their perceptions of patient participation during rehabilitation. There is also a risk for recall bias since retrospective assessments have the disadvantage that people are likely to remember situations that are particularly salient and minimize other aspects [43
]. However, this study did not show any significant correlations between domain scores and time elapsed since injury. The response rate for family members was relatively low and it is not possible to determine if this owed to the fact that family members themselves chose not to respond or that they could not respond because the patient did not give them the questionnaire. Either way, the family member sample may not be fully representative of the target population and potential selection bias due the sampling procedure may have inflated our estimates of patient-family agreement. Furthermore, we cannot exclude the possibility that patients and their family members completed the questionnaires together, which would also naturally inflate our estimates of patient-family agreement.