Influences on Participation in Life After Spinal Cord Injury: Qualitative Inquiry Reveals Interaction of Context and Moderators

Background: Greater understanding of the influences on participation in life after spinal cord injury (SCI) can inform rehabilitation theory and practice. Careful qualitative inquiry can reveal subjective meanings associated with the relevant experiences, strategies, and perceptions of those with lived experience of SCI. A search of literature, followed by a thematic synthesis of qualitative studies, was undertaken to bring together these insights in a meaningful way. Methods: The research question guiding the literature review and synthesis was, What do people with SCI perceive to be the influences on their participation in life? Three critical databases were searched for qualitative studies examining influences on participation in life after SCI. Peer-reviewed studies published after 2006, involving adults with SCI living in countries with advanced economies, were included. Data were extracted from 24 articles and subjected to three-level thematic synthesis—the coding of primary data from the studies, the development of descriptive themes based on an organization of those codes, and the generation of analytical themes. Results: The synthesis yielded five analytical themes, supported by 17 descriptive themes. The analytical themes were (1) external contextual influences, (2) personal physical context, (3) personal psychological context, (4) potential moderators of participation outcomes, and (5) temporal dimensions of participating in life after SCI. Interpretation: These themes highlight the complex interactions that shape participation from the perspective of people with SCI. Closer examination of the potential moderators may provide insights into effective rehabilitation interventions. Conclusions: Synthesis of qualitative inquiry provides valuable insights into the perceptions of influences on participation in life from the point of view of people with SCI. The findings of this synthesis are instructive for rehabilitation theory and practice. It can complement what we learn from using the ICF to understand participatio

Longitudinal effects of time since injury and age at injury on outcomes of people with spinal cord injury in Queensland, Australia

Study design: Longitudinal cohort study. Objectives: To investigate the longitudinal effects of time since injury and age at injury on outcomes of quality of life, physical function, secondary conditions and participation, in people with traumatic spinal cord injury (SCI). Setting: Community resident people with spinal cord injury in Queensland, Australia. Methods: A baseline sample of 270 people with SCI was recruited. Telephone surveys on measures of quality of life (WHOQOL-Bref), secondary conditions (Secondary Conditions Surveillance Instrument, subset), physical functioning (Functional Independence Measure motor subscale) and participation (Community Integration Measure) were conducted each year between 2004 and 2008, and again in 2018. Random-effect within-between models were used to determine the effect of time since injury and age at injury on each outcome variable. Inverse probability-of-censoring weights were used to correct for selection bias. Results: There was an effect of time since injury on secondary conditions, with a one-year change associated with 9% higher odds of having worse Secondary Conditions Surveillance Instrument scores (odds ratio = 1.09, 95% confidence interval = 1.02, 1.17; p = 0.006). We did not find any evidence of a time since injury effect on quality of life, physical function, or participation. Similarly, we did not find any evidence of an age at injury effect on any outcome variable. Conclusions: Secondary conditions may increase with longer time since injury among people with SCI, suggesting appropriate formal and informal supports are required to minimise the impact of these emerging health problems as individuals age

Factors Which Facilitate or Impede Interpersonal Interactions and Relationships after Spinal Cord Injury: A Scoping Review with Suggestions for Rehabilitation

Interpersonal interactions and relationships can influence an individual’s perceptions of health and quality of life in the presence of disability. In the case of people with spinal cord injury (SCI), positive interpersonal interactions and relationships have been shown to contribute to resilience and adaptability. Understanding factors which facilitate or impede the development and maintenance of relationships after SCI may form the basis for proactive relationship support for people with SCI. To gain a broad insight into these factors, a scoping review was undertaken. Databases were searched for English language studies published between 2000 and 2015 that informed the review question. Sixty-two (62) studies were identified. Thematic analysis was conducted on data extracted from the studies and 51 factors which may facilitate relationships and 38 factors which may impede relationships after SCI were noted. The majority of factors could be categorized as environmental or personal according to the domains of the International Classification of Functioning, Disability, and Health (ICF). The facilitating factors included partner and social support, reciprocity in relationships, and presenting oneself positively. Impeding factors included physical environmental barriers, real and perceived social biases, and poor self-image. Factors identified may inform the provision of supportive, holistic rehabilitation for people with SCI

Rehabilitation for participation in life after spinal cord injury–clinician responses to a preliminary conceptual framework

Purpose: To explore face validity of a preliminary conceptual framework for rehabilitation (the HEAR Framework), which is grounded in the narratives of people with spinal cord injury. Methods: Using a quantitative online survey, experienced spinal cord injury rehabilitation practitioners were asked to compare the overall Framework, and its three components and nine elements, against usual practice. Participants rated the helpfulness and ease of implementation of each component. Perceived training needs, to support the implementation of the Framework were also explored. Respondents were given the opportunity to provide qualitative feedback about the Framework. Results: Thirty-four participants completed the survey. Median rating of congruence of the Framework with usual practice was 6 (out of 10). The Help component of the Framework was rated as more like usual practice than the Encourage and Accept components. Median rating of the potential helpfulness to practice, of all the elements of the Framework was 5 (out of 5). Participants rated the elements within the Help component of the Framework as easiest to implement. Teaching assertiveness, promoting flexible thinking and fostering responsive communication were the highest rated training topics related to implementation of the Framework. Conclusions: Face validity testing suggests the preliminary HEAR Framework is promising as a basis for spinal cord injury rehabilitation theory. Broad-based testing is required to progress the promise of the Framework. IMPLICATIONS FOR REHABILITATION Spinal cord injury rehabilitation lacks conceptual frameworks to guide practice. This validity study suggests moderate alignment between the preliminary HEAR Framework and usual practice (based on the perceptions of professionals in a spinal cord injury service). The Framework may be useful to individual rehabilitation practitioners as a basis for clinical reflection. The Framework may be useful as a practice development tool for teams of rehabilitation practitioners

Spinal cord injury and family caregivers: A description of care and perception of service need

As survival ratesand life expectancies ofindividuals experiencing acquired disabilities such as spinal cord injury improve, greater demands are placed on health, rehabilitation and longterm care services. Further,family caregivers are assuming much ofthe caring responsibilities. Thispaper examinesfamily caregiuing in relation to individuals with spinal cord injury (SCI) in an Australian context. The paper is based on a descriptive survey conducted with 206 individuals with SCI, referred to a specialist SCI outreach service in Queensland, and 179 family caregivers. The survey collected social and demographic information and details oftbe type ofcare provided byfamily caregivers. It also exploredfamily caregivers' perceptions ofthe types ofservices they require to assist them in tbeir caring roles. Family caregiuing typically involvedphysical, practical, and emotional support, and in many cases this occupied in excess of three hours a day, with no additional source of caregiVing provided. The most frequently reported service types required by family caregivers included respite, personal support, information services, and bealtb professional services. Mapping caregiver needs in this area establishes a critical basisfor service planning and more importantly prouides a guide for the development ofa range ofservicesdedicated to maintaining the health and well-being offamily caregivers ofindividuals with SC

Influences on Participation in Life After Spinal Cord Injury: Qualitative Inquiry Reveals Interaction of Context and Moderators

Background: Greater understanding of the influences on participation in life after spinal cord injury (SCI) can inform rehabilitation theory and practice. Careful qualitative inquiry can reveal subjective meanings associated with the relevant experiences, strategies, and perceptions of those with lived experience of SCI. A search of literature, followed by a thematic synthesis of qualitative studies, was undertaken to bring together these insights in a meaningful way. Methods: The research question guiding the literature review and synthesis was, What do people with SCI perceive to be the influences on their participation in life? Three critical databases were searched for qualitative studies examining influences on participation in life after SCI. Peer-reviewed studies published after 2006, involving adults with SCI living in countries with advanced economies, were included. Data were extracted from 24 articles and subjected to three-level thematic synthesis—the coding of primary data from the studies, the development of descriptive themes based on an organization of those codes, and the generation of analytical themes. Results: The synthesis yielded five analytical themes, supported by 17 descriptive themes. The analytical themes were (1) external contextual influences, (2) personal physical context, (3) personal psychological context, (4) potential moderators of participation outcomes, and (5) temporal dimensions of participating in life after SCI. Interpretation: These themes highlight the complex interactions that shape participation from the perspective of people with SCI. Closer examination of the potential moderators may provide insights into effective rehabilitation interventions. Conclusions: Synthesis of qualitative inquiry provides valuable insights into the perceptions of influences on participation in life from the point of view of people with SCI. The findings of this synthesis are instructive for rehabilitation theory and practice. It can complement what we learn from using the ICF to understand participatio

The Person-Environment Profile: Preliminary Development of a Clinical Tool for Enhancing Goal-Based Rehabilitation Programs

The World Health Organization's International Classification of Functioning, Disability and Health identifies environmental and personal factors as contextually relevant to functioning following disability. Goal setting is also central to rehabilitation practice and enhances functioning. No current assessment exists that recognizes the interaction of environmental factors as they relate to goal setting in rehabilitation. The person-environment profile (PEP) was developed to explore an individual's subjective view of personal and environmental factors on the achievement of rehabilitation goals. A draft PEP underwent initial face validity testing, and the resulting version was then piloted with 13 participants across 34 rehabilitation goals within a goal-based community rehabilitation setting. Results of this pilot suggest that PEP may have the ability to detect differences in perceived barriers and facilitators across personal and environmental factors for different rehabilitation goals. While showing promise as a clinical tool, the pilot identified feasibility concerns over implementation as a standardized assessment. Substantial additional psychometric evaluation and testing needs to be undertaken before the tool can be recommended for clinical use

Development of a participatory process to address fragmented application of outcome measurement for rehabilitation in community settings

Purpose.Outcome measurement is an integral part of delivering rehabilitation services in community settings. However, measurement is of little value if instruments are chosen ad hoc and are not administered consistently. The purpose of this study was to develop and test a participatory process of outcome measure selection which would engender consistent use of robust and appropriate instruments. Method.The ICF provided the conceptual framework for a systematic review of the literature for relevant outcome measures. A summary of the critical appraisal of the clinimetric properties of the identified instruments was created. The summaries were reviewed and vetted by stakeholders including clinicians, researchers, and managers/policy makers. Results.From the 300 identified and appraised measures, 28 were chosen and made available in a Compendium of Clinical Measures for Community Rehabilitation. The Compendium contains three core measures to be used routinely with all rehabilitation clients and a further 25 that cover particular discipline and client needs. This resource is now available to all clinicians working in the participating rehabilitation services. Conclusion.A participatory process combining rigorous review of the literature, expert opinion, and clinician feedback is recommended in the selection and implementation of outcome measures in rehabilitation settings in the community

General practice visits by people with traumatic spinal cord injury: a Queensland longitudinal study

People with traumatic spinal cord injury (SCI), although proportionally fewer in number, are known to be high users of primary health care services; however,details of their visits to GPs are unclear. This study presents information about GP utilisation patterns of 193 people with SCI over a 5-year period. Results demonstrate substantially greater GP service utilisation, particularly for young men with SCI, compared with their counterparts in the general population. Interestingly, people with paraplegia were proportionally higher users of GP services than those with tetraplegia. Results indicate the need for specialist support for GPs to meet the SCI-specific needs of this patient group. Specialist SCI outreach teams may be a useful resource to primary health care practitioners