The social dimension of quality of life following spinal cord injury or disease: an international ICF-linking study.

STUDY DESIGN: International Classification of Functioning, Disability and Health (ICF) linking study. OBJECTIVE: Analyze cognitive interview data using the ICF as an analytic framework, to examine aspects of social life relevant to quality of life (QoL) according to people with spinal cord injury or disease (SCI/D). This study builds upon results of an international study about the cross-cultural validity of the International SCI QoL Basic Data Set (QoL-BDS). SETTING: Four specialized outpatient clinics in SCI/D rehabilitation, from the US, Brazil and Australia. METHODS: Analysis of qualitative data from 39 cognitive interviews with SCI/D patients at least one year post onset. Participants were asked to define their concept of QoL, overall life satisfaction, physical health and psychological health, and other relevant matters. Four independent researchers coded text fragments related to the items, and fragments were linked to ICF chapters d6-d9, following established linking rules. RESULTS: The proportion of text referring to social life was 35.8% (definition QoL), 24.9% (QoL life as whole), 6.0% (physical health) and 34.9% (psychological health). The most frequent ICF categories were d760 Family relationships, d770 Intimate relationships and d920 Recreation and leisure. Most frequent responded social topics to the 'other issues' item were d770 Intimate relationships, d760 Formal relationships, and d870 Economic self-sufficiency. CONCLUSION: The importance of social life aspects to the QoL was highlighted based on responses of SCI/D patients, clearly demonstrated through the ICF linking process. Adding a satisfaction with social life item to the QoL-BDS has made this instrument a more comprehensive measure.

Factors influencing decisions about neurogenic bladder and bowel surgeries among veterans and civilians with spinal cord injury.

OBJECTIVE: This study investigated factors influencing surgical decision-making (DM) to treat neurogenic bladder and bowel (NBB) dysfunction for veterans and civilians with spinal cord injury (SCI) in the United States (US). DESIGN: Semi-structured interviews complemented by survey measures. SETTING: Community-dwelling participants who received treatment at a major Midwestern US medical system, a nearby Veterans Affairs (VA) facility, and other VA sites around the US. PARTICIPANTS: Eighteen participants with SCI who underwent surgeries; completed semi-structured interviews and survey measures. INTERVENTIONS: Not applicable. OUTCOMES MEASURES: Semi-structured interviews were coded to reflect factors, DM enactment, and outcomes, including surgery satisfaction and quality of life (QOL). Quantitative measures included COMRADE, Ways of Coping Questionnaire, Bladder and Bowel Treatment Inventory, PROMIS Global Health and Cognitive Abilities scales, and SCI-QOL Bladder and Bowel short form. RESULTS: Themes identified about factors influencing DM included: recurrent symptoms and complications; balancing dissatisfaction with NBB management against surgery risks; achieving independence and life style adjustments; participant's driven solutions; support and guidance and trust in doctors; and access and barriers to DM. DM enactment varied across surgeries and individuals, revealing no clear patterns. Most participants were satisfied with the surgery outcomes. Some differences in demographics were observed between veterans and civilians. CONCLUSIONS: We have attempted to illustrate the process of NBB DM as individuals move from factors to enactment to outcomes. Attending to the complexity of the DM process through careful listening and clear communication will allow clinicians to better assist patients in making surgical decisions about NBB management.

"It's been a double-edged sword": An online qualitative exploration of the impact of COVID-19 on individuals with spinal cord injury in the US with comparisons to previous UK findings.

OBJECTIVE: The impact of COVID-19 lockdowns and social distancing for persons with spinal cord injury (SCI) are poorly understood. This exploratory online qualitative study collected self-reported COVID-19 experiences from persons with SCI in the United States (US). To enrich understanding, these data were compared to similar previously-published data from a sample of SCI participants from the United Kingdom (UK). DESIGN: Explorative, online qualitative study. Participants completed an online survey of open-ended qualitative questions pertaining to their experiences during the pandemic. Thematic analysis was utilized to generate themes from the US data. These themes were compared to our previously-published thematic analysis of data from the UK. SETTING: Community-based sample of persons with SCI in the US. PARTICIPANTS: Participants were recruited via SCI-focused research registries and social media outlets serving the SCI community, using convenience sampling (n = 36). Key themes identified in the US data were compared to themes identified in a similar sample from the UK (n = 42) collected at the same time and published previously. RESULTS: Analysis resulted in three themes from the US data, each containing positive and negative qualitative reflections. Themes included (1) health and access to care, (2) making sense of the pandemic, and (3) daily life during the pandemic. Each theme captured common facets of life during the pandemic, often shared by those without physical disabilities, but included accounts particularly relevant to persons with disabilities. Comparisons to thematic findings from the UK study revealed similarities (e.g. healthcare access challenges, isolation) and differences (e.g. importance of previous SCI experiences). CONCLUSION: We detailed common experiences of COVID-19 pandemic lockdowns and their impact on people with SCI, while contrasting these with sense-making positive reflections and social benefits that appeared to be helpful in managing distress and coping with the pandemic.

A cross-cultural mixed methods validation study of the spinal cord injury quality of life basic dataset (SCI QoL-BDS).

STUDY DESIGN: Mixed methods inquiry using cognitive interviews and thematic content analysis. OBJECTIVES: Cross-validation of the concept of quality of life (QoL) and of the International Spinal Cord Injury Quality of Life Basic DataSet (SCI QoL-BDS) items across five sites in four countries: United States, Australia, Brazil, and the Netherlands. Analysis aimed to uncover patterns, differences, and similarities suggesting conceptual equivalence for overall QoL and the three SCI QoL-BDS items. SETTING: International, community. METHODS: Semi-structured cognitive interviews with 51 participants across five sites and four countries. Participants with spinal cord injury/disease (SCI/D) completed the SCI QoL-BDS items and one additional question. Interviews were audio recorded and transcribed. Transcripts were coded using NVivo software. Coded data were analyzed using thematic content analysis. Seventeen themes were identified. Responses by sites were compared for conceptual equivalence. RESULTS: Across the five sites, equivalence in the conceptual meaning of QoL was found based on the frequent commonalities in terminology employed to describe it. Despite sample differences in terms of demographic and SCI characteristics, participants across all sites replied to the SCI QoL-BDS items in a similar way, suggesting good item equivalence. Qualitatively, the differences noted with respect to the use of themes for each question suggest some variability on how participants with SCI/D describe QoL. In spite of these contextual differences, there is a high degree of commonalty not explained by participants' demographic or injury/disease characteristics. CONCLUSIONS: The SCI QoL-BDS shows good cross-cultural validity among the international sites included in this study.

Isolated and anxious: A qualitative exploration of the impact of the COVID-19 pandemic on individuals living with spinal cord injury in the UK.

OBJECTIVE: People living with spinal cord injury (SCI) are often immunocompromised, and at increased risk of respiratory infection. Given the restrictions in response to the COVID-19 pandemic, those with SCI may be at increased risk of health deterioration, though how this is experienced is poorly understood. This study explored the experiences of people living with SCI during the COVID-19 pandemic. DESIGN: Participants completed an online survey consisting of demographic questions, and open-ended qualitative questions pertaining to their experiences during the pandemic. Thematic analysis was utilized for the analytical approach. SETTING: Community-based sample in the UK. PARTICIPANTS: Participants were recruited via social media outlets of UK-based SCI-specific support charities, and snowball sampling (N = 42, F = 34, M = 8). RESULTS: Key themes included: (1) lost access to health services and support, capturing concerns surrounding barriers to healthcare and rehabilitation, which intensified secondary consequences of SCI such as spasm and pain; (2) health anxiety, which was perpetuated by perceived heightened vulnerabilities to respiratory complications; (3) social isolation, with significantly reduced social contact, even with care providers, compounding health experiences. CONCLUSION: People living with SCI during the COVID-19 pandemic experienced a variety of personal physical, psychological, and social challenges, each of which could disrupt daily functioning and quality of life. Increased utilization of telehealth is recommended to support continued engagement in rehabilitation, and foster connection and community amongst others with SCI and health professionals.

Linguistic indicators of chronic pain acceptance in individuals with spinal cord injury.

OBJECTIVE: Pain acceptance is a robust predictor of adjustment to chronic pain, including pain in those with spinal cord injury (SCI). This preliminary study aimed to identify linguistic patterns indicative of chronic pain acceptance to gain new insights into the underlying cognitive-emotional process of this construct. METHOD: Individuals with SCI and chronic pain (N = 30) completed the Chronic Pain Acceptance Questionnaire (CPAQ) and a semistructured interview about their pain. Linguistic Inquiry and Word Count software was used to quantify linguistic categories of interest in transcribed interviews. RESULTS: Results of hierarchical linear regressions (controlling for pain intensity, age, and education) showed that personal pronouns explained an additional 26.9% of the variance in CPAQ activity engagement, which was associated with a lower frequency of first-person plural pronouns and a higher frequency of third person pronouns. Conjunction words explained an additional 12.8% and 19.2% of the variance in CPAQ total and pain willingness scores, respectively; frequency of conjunction words was negatively associated with acceptance. Perceptual processes words accounted for an additional 39.9% of the variance in pain willingness, which was associated with a lower frequency of seeing words and a higher frequency of hearing and feeling words. CONCLUSIONS: Findings suggest that pain acceptance is associated with unique linguistic patterns that can be identified in natural word use among individuals with SCI and chronic pain. Future research to further investigate linguistic indicators of pain acceptance and other clinically relevant pain constructs is warranted and could advance theoretical models of pain adaptation and clinical approaches to treating pain. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Narratives of long-term resilience: two cases of women aging with spinal cord injury.

INTRODUCTION: Spinal cord injury (SCI) is a life-changing event that drastically affects a person's sense of identity, ability to participate, and quality of life (QOL). Researchers studying the coping process have often focused on identifying maladaptive behaviors and barriers, and less on positive psychology approaches emphasizing individual strengths. More recently, positive psychology constructs, such as resilience, have received greater attention from SCI researchers. Early and ongoing recognition of resilience in patients with SCI may provide important information to clinicians about adjustment and long-term management. Our purpose is to document patterns and indicators of resilience, using a narrative approach, during various stages of adjustment following SCI. CASE PRESENTATIONS: Narrative case presentations are deriving from in-depth qualitative interviews with two women aged 63 and 52, living with SCI. Both had complete motor neurological injuries that incurred at 27 and 35 years, respectively. Each woman was interviewed twice, approximately 10 years apart (age 63 and 52, and age 54 and 42). Each demonstrated high levels of resilience through evolving roles of family and caregivers, inner personal strength, and participation in their respective communities. We highlight differences, similarities, and evolution of resilience factors in and between each case. DISCUSSION: These cases illustrate examples of long-term resilience, adding richness to the resilience construct. Results provide knowledge that can be used to target rehabilitation interventions toward successful coping styles. In sharing these cases, we hope to assist clinicians and researchers to better recognize patterns of resilience in their own patients and study participants.

Contextualizing the lived experience of quality of life for persons with spinal cord injury: A mixed-methods application of the response shift model.

Objective: The objective of this study was to gain greater insight into individuals' quality of life (QOL) definitions, appraisals, and adaptations following spinal cord injury (SCI). Design: A mixed-methods design, applying the Schwartz and Sprangers response shift (RS) model. RS is a cognitive process wherein, in response to a change in health status, individuals change internal standards, values, or conceptualization of QOL Setting: Community-dwelling participants who receive medical treatment at a major Midwestern medical system and nearby Veterans' Affairs hospital. Participants: A purposive sample of participants with SCI (N = 40) completed semi-structured interviews and accompanying quantitative measures. Interventions: Not applicable. Outcome Measures: Qualitative data were analyzed using content analysis to identify themes. Analysis of variance were performed to detect differences based on themes and QOL, well-being, and demographic and injury characteristics. Results: Four RS themes were identified, capturing the range of participant perceptions of QOL. The themes ranged from complete RS, indicating active engagement in maintaining QOL, to awareness and comparisons redefining QOL, to a relative lack of RS. Average QOL ratings differed as a function of response shift themes. PROMIS Global Health, Anxiety, and Depression also differed as a function of RS themes. Conclusion: The RS model contextualizes differences in QOL definitions, appraisals, and adaptations in a way standardized QOL measures alone do not.

How do social-psychological concerns impede the delivery of care to people with HIV? Issues for dental education.

Oral health is an essential aspect of the overall medical care for patients with HIV. However, fear of status disclosure is a significant barrier to access to care. Preparing future oral health care providers to maintain all aspects of confidentiality and to understand the role stigma plays in the lives of HIV-positive individuals are critical issues that must be addressed by dental education. To provide important perspectives regarding HIV-related stigma and confidentiality, data from the HAART (Highly Active Antiretroviral Therapy) Project is presented. This study is a five-year National Institute of Allergy and Infectious Disease (NIAID)-funded longitudinal qualitative study of sero-positive African Americans' adherence to antiretroviral therapy (N=137). The current literature regarding HIV patient confidentiality and student attitudes regarding HIV/AIDS is also reviewed. Findings suggest that dental student attitudes may be improved by providing more comprehensive experiences and information and that procedures in place in dental clinics should be continuously monitored to ensure that patient confidentiality is maintained. Strategies for addressing these important issues in dental education are presented. Ensuring that dental school graduates are well prepared to maintain confidentiality with sensitivity to the role stigma plays in HIV disease has the potential to enhance access to health care.