Further development in measuring communicative participation: identifying items to extend the applicability of the communicative participation item bank.

BACKGROUND: The ability to communicate is a prerequisite for participation in today's society. To measure participation in adults with communication disorders, the Communicative Participation Item Bank (CPIB) was developed in 2006. Since then, several new PROMs have been developed to measure communication and the impact of communication disorders on participation. Moreover, the CPIB items do not all appear to be relevant to certain populations with communication problems and context of communicative participation is changing rapidly, given the increased use of digital communication forms. The purpose of this study was to identify new PROMs developed since 2006 that aim to measure (aspects of) communication, in order to select items that are suitable for expanding the Communicative Participation Item Bank to make the item bank more widely applicable (e.g., to the hearing-impaired population) and tailored to the current societal context. METHODS: Medline and Embase were used to search for PROMs that aim to measure (aspects of) communication. Each new PROM as well as the CPIB, was evaluated to determine to what extent it contains items that measure communicative participation and to what extent these items capture all communicative participation domains by linking each item to the ICF Activities and Participation domains. RESULTS: This study identified 31 new PROMs, containing 391 items that were labelled as measuring communicative participation. The majority of the 391 items measure aspects of ICF Activities and Participation domain 'communication', followed by the domain 'interpersonal interactions and relationships'. The other ICF Activity and Participation domains were less often addressed. Analysis of the CPIB showed that items do not cover all domains of participation as defined in the ICF, such as the 'major life areas' domain. CONCLUSIONS: We found a potential pool of 391 items measuring communicative participation that could be considered for extending the CPIB. We found items in domains that are already present in the CPIB, but also items that relate to new domains, such as an item on talking with customers or clients for the 'major life areas' domain. Inclusion of new items in other domains would benefit the comprehensiveness of the item bank.

Everyday Barriers in Communicative Participation According to People With Communication Problems.

PURPOSE: The purpose of this study was to gain a comprehensive understanding of participation situations that are challenging for people with communication problems, to provide input for the further development of potential items for the Communicative Participation Item Bank (CPIB). METHOD: A purposive sampling strategy was used to include a diverse group of people with communication problems. Diaries were used as a sensitizing exercise for inductive in-depth interviews. In these interviews, elements of communicative participation situations (concepts) were elicited that participants themselves experienced as difficult because of their communication problem. A thematic content analysis was used to identify overarching themes. In addition, new items were formulated based on the raw codes of the transcripts and linked to the International Classification of Functioning, Disability and Health Activity and Participation domains to examine the distribution of items across the breadth of the construct of communicative participation. RESULTS: Eighteen interviews yielded 44 different concepts. They were clustered in six themes, which capture the person, location, topic, mode, moment, and pace of communication. In total, 103 new items measuring communicative participation were formulated. Most of these items relate to International Classification of Functioning, Disability and Health Activity and Participation domains "interpersonal interactions and relationships," "major life areas," and "community, social, and civic life." CONCLUSIONS: This study resulted in an overview of self-reported barriers in daily communicative participation experienced by people with communication problems. These communicative participation situations can be captured within 44 concepts, which are covered by six themes. Future work should investigate if the newly written items can be added to the CPIB. The concepts and the themes can be used in designing and delivering a participation-focused intervention for this population.

Speech language therapists' experiences with subjective well-being in people with aphasia.

BACKGROUND: Subjective well-being (SWB) and quality of life (QOL) are intricately related constructs. Recent research shows both constructs share some facets, but are distinct entities. It is unclear, both internationally and in the Netherlands, if and how SLTs address SWB in clinical practice. The current study was set up to explore Dutch SLTs' perceptions of SWB in relation to the management of people with aphasia. AIMS: To describe how Dutch SLTs, working with people with aphasia in a private practice or a healthcare setting, address patient's SWB during diagnosis and treatment, and to identify barriers and facilitators they experience when addressing SWB. METHODS & PROCEDURES: A qualitative research design with a phenomenological approach was used. SLTs from private practices and healthcare settings were invited to participate in individual interviews and a focus group. The data were analysed thematically using a combination of inductive and deductive methods. OUTCOMES & RESULTS: Eight SLTs participated in the study. The SLTs' experiences were captured in four themes that emerged from the data: (1) SWB is a multifaceted concept and depends on patient-specific factors: premorbid factors, life priorities and time post-stroke; (2) SLTs experience more responsibility for patients' SWB than their profession allows; (3) collaboration between SLTs and patients, patients' network and other healthcare professionals is required to address SWB during diagnosis and treatment; and (4) misinterpretations are inevitable when SLTs or the patients' network address patients' SWB. CONCLUSIONS & IMPLICATIONS: The results showed that SLTs feel responsible for addressing SWB in the management of people with aphasia. Their perception of the concept of SWB is similar to the definition used in the literature and is multifaceted. They feel responsible for the part of SWB that is related to communicative functioning, but less so for the more heuristic aspects of SWB. This is related to their experienced limitation of influence on SWB, which for some leaves them feeling out of depth and uncertain about boundaries between professionals. Addressing SWB in a multidisciplinary team is therefore considered important in order to adequately and fully capture someone's SWB and reduce to clinicians' experienced burden and responsibility. What this paper adds What is already known on this subject Recent studies suggest that quality of life measures may lack facets related to subjective well-being (SWB). Aphasia is likely to impact on SWB of a stroke survivor, but it is unclear if and how SWB is addressed by speech and language therapists in diagnosis, and treatment of Dutch PWA. What this study adds This study provides insight into the operationalization of SWB in Dutch clinical practice, including barriers SLTs experience when addressing SWB. Clinical implications of this study Monitoring and influencing SWB of people with aphasia is a complex process, that SLTs consider only possible in multi-disciplinary teams. Clear guidelines on roles and responsibilities between various disciplines involved are necessary to improve care for people with aphasia.

Psychometric properties of the Dutch SAQOL-39NL in a generic stroke population.

BACKGROUND: The psychometric properties of the Dutch version of the Stroke and Aphasia Quality Of Life-scale (SAQOL-39NL) have previously been assessed for people with aphasia after stroke, but not yet for stroke survivors without aphasia. OBJECTIVE: The objective is to evaluate the psychometric properties of the SAQOL-39NL in a stroke sample with and without aphasia. METHODS: The SAQOL-39NL was administered to survivors of stroke (N = 141) who received rehabilitation in specialized rehabilitation facilities, 3 and 6 months after the start of rehabilitation. Acceptability was explored by assessing floor and ceiling effects and missing items. For internal consistency, Cronbach's alpha and item-total correlations were computed. For internal validity, intercorrelations between domains, and between domains and total score, were assessed. Convergent validity was evaluated by correlation with EuroQoL-5D scores. Responsiveness to change was investigated using d' and SRM-scores. RESULTS: Mean age was 60.4 years (SD = 11.1), 62.4% were male. Mean total SAQOL-39NLg score was 3.94 (SD = 0.68, scale 1-5). No floor or ceiling effects and 2.4% missing data were found. Internal consistency was excellent (Cronbach's alpha = 0.96). Intercorrelations between domains and total scale were moderate to excellent (r = 0.57-0.88). Intercorrelations between domains were low to moderate (r = 0.22-0.63). The correlation with the EQ-5D was moderate (r = 0.57). Only small changes in SAQOL-39NLg scores were found between 3 and 6 months. CONCLUSIONS: These data provide further evidence for the acceptability, internal consistency, and initial promising data on validity of the SAQOL-39NLg. Further research on structural validity and responsiveness to change is needed.