The impact of Internet access for people with spinal cord injuries: a descriptive analysis of a pilot study

Purpose : A pilot study was undertaken regarding the effect of Internet access on health-related quality of life (HRQoL) and self-reported impact for people with spinal cord injuries (SCI). This study is unique in providing free Internet access and looking at benefits for people with disabilities.

Method : HRQoL was measured using indicators of global health and social isolation at baseline and after 6 to 19 months of use via telephone interviews on a convenience sample of 23 adults with SCI. Additionally, monthly telephone surveys measured usage patterns, recreation, and self-reported impact. Both quantitative and qualitative analyses were conducted. Bivariate tests for differences in proportions and paired T-tests were conducted. Qualitatively, conceptual categories of impact were created using the Constant Comparative Method.

Results : Qualitatively, the predominant benefit was quality of life, mentioned by 61% of participants 46% of months surveyed, with quantitative trends towards improved emotional health. Ease of access to information, social connection, and quality of information were also frequently reported, with modest support from quantitative data.

Conclusions : The study's persuasive qualitative results suggest the Internet has particular benefit to people with disabilities and that rehabilitation goals should include leisure. Further scientific research is strongly warranted.     

Psychosocial subgroups in persons with spinal cord injuries and chronic pain

Widerström-Noga EG, Felix ER, Cruz-Almeida Y, Turk DC. Psychosocial subgroups in persons with spinal cord injuries and chronic pain.

Objectives

To define adaptational subgroups in people with chronic pain and spinal cord injury (SCI), and to compare these subgroups with respect to demographic factors, level of injury, functional independence, pain disability, depressed mood, social support, and life satisfaction.

Design

Interviews.

Setting

Veterans Affairs medical center and The Miami Project to Cure Paralysis.

Participants

Persons with SCI and chronic pain (N=190).

Interventions

Not applicable.

Main Outcome Measure

The Multidimensional Pain Inventory, SCI version.

Results

Cluster analysis revealed 3 subgroups: (1) dysfunctional (34.6% of all participants), characterized by higher pain severity, life interference, and affective distress scores, and lower levels of life control and activities scores; (2) interpersonally supported (33.0% of participants), characterized by moderately high pain severity, and higher life control, support from significant others, distracting responses, solicitous responses, and activities scores; and (3) adaptive copers (32.4% of participants), characterized by lower pain severity, life interference, affective distress, support from significant others, distracting responses, solicitous responses, activities and higher life control scores. Compared with the dysfunctional subgroup, the interpersonally supported subgroup reported significantly greater social support and life satisfaction and less pain disability and emotional distress, despite moderately high pain severity.

Conclusion

Three subgroups, independent of sex, pain duration, and functional status, were identified. Although severe pain significantly decreases life satisfaction after SCI, its impact is moderated by perceived social support.     

Dimensions of quality of life for Chinese adults with spinal cord injury: a qualitative study

Purpose: The purpose of this study was to explore meaning and components of quality of life (QOL) perceived by Chinese adults with a spinal cord injury (SCI) and to examine the frame of reference that this population used to assess quality of their life.

Method: A qualitative research approach was used. Six focus group interviews were conducted with 40 adults with SCI from a northeastern city in China. A content analysis was conducted on interview data to determine meaning and components of QOL perceived by the participants.

Results: Participants defined QOL as satisfaction with one's life, which might vary from person to person and change when the circumstance changed. They identified 18 QOL components that could be grouped into five domains: physical, psychological, economic, social well-being, and a least restrictive environment. When assessing quality of their life, participants used both internal (comparing with oneself) and external (comparing with others) comparisons.

Conclusions: The results of this study contribute to the understanding of dimensions of QOL for people with SCI in China. Although several domains of QOL identified in the present study were similar to those found in previous studies conducted elsewhere, several unique components of QOL, such as relationship with extended family and neighbours, government support, peace in the world and the nation, were identified by the participants. These components appeared to be related to the Chinese culture and socioeconomic system. Specific QOL measurements that address these unique components are needed when assessing QOL of this population.     

Ageing with spinal cord injury: the impact of spousal support

Purpose: Research has offered ample evidence that spousal support can be seen as an important contributing factor to the ongoing health and well-being of ageing individuals, whether or not they have a spinal cord injury (SCI) or disability. In fact, spouses may be the most important element in successful rehabilitation and long-term home care for people with spinal cord injuries. This longitudinal study, which describes 225 British SCI long-term survivors, offers insight into marital status and its impact on general quality of life, depression, stress and community integration for individuals with SCI. Results: The results demonstrate married individuals having less depression, greater life satisfaction and psychological wellbeing, and having better perceived quality of life. When controlling for age, duration of injury, and gender, marital status was a significant predictor of better perceived life satisfaction and quality of life.     

Ageing with spinal cord injury: the impact of spousal support

Purpose: Research has offered ample evidence that spousal support can be seen as an important contributing factor to the ongoing health and well-being of ageing individuals, whether or not they have a spinal cord injury (SCI) or disability. In fact, spouses may be the most important element in successful rehabilitation and long-term home care for people with spinal cord injuries. This longitudinal study, which describes 225 British SCI long-term survivors, offers insight into marital status and its impact on general quality of life, depression, stress and community integration for individuals with SCI. Results: The results demonstrate married individuals having less depression, greater life satisfaction and psychological wellbeing, and having better perceived quality of life. When controlling for age, duration of injury, and gender, marital status was a significant predictor of better perceived life satisfaction and quality of life.     

Is social participation associated with quality of life of older adults with physical disabilities?

Purpose: To explore the relationships between subjective quality of life and social participation of older adults with physical disabilities.

Method: A cross-sectional design was used with a convenience sample of 46 people aged 60 to 90 living in the community. Subjective quality of life was estimated with the Quality of Life Index and social participation with the Assessment of Life Habits.

Results: Only a weak relationship was found between total scores of quality of life and social participation. Interpersonal relationships, responsibilities, fitness and recreation were the categories of social participation most associated with quality of life. Social roles were more associated with quality of life than daily activities. Finally, satisfaction with the accomplishment of life habits was also more associated with quality of life than the performance itself.

Conclusions: The importance of social participation in regard to the quality of life of older persons with physical disabilities living in the community is partially supported by these findings. Other studies are needed to clarify how social participation influences quality of life in this population.     

Ageing with spinal cord injury: the impact of spousal support.

PURPOSE: Research has offered ample evidence that spousal support can be seen as an important contributing factor to the ongoing health and well-being of ageing individuals, whether or not they have a spinal cord injury (SCI) or disability. In fact, spouses may be the most important element in successful rehabilitation and long-term home care for people with spinal cord injuries. This longitudinal study, which describes 225 British SCI long-term survivors, offers insight into marital status and its impact on general quality of life, depression, stress and community integration for individuals with SCI. RESULTS: The results demonstrate married individuals having less depression, greater life satisfaction and psychological well-being, and having better perceived quality of life. When controlling for age, duration of injury, and gender, marital status was a significant predictor of better perceived life satisfaction and quality of life.     

Is social participation associated with quality of life of older adults with physical disabilities?

Purpose:?To explore the relationships between subjective quality of life and social participation of older adults with physical disabilities.

Method:?A cross-sectional design was used with a convenience sample of 46 people aged 60 to 90 living in the community. Subjective quality of life was estimated with the Quality of Life Index and social participation with the Assessment of Life Habits.

Results:?Only a weak relationship was found between total scores of quality of life and social participation. Interpersonal relationships, responsibilities, fitness and recreation were the categories of social participation most associated with quality of life. Social roles were more associated with quality of life than daily activities. Finally, satisfaction with the accomplishment of life habits was also more associated with quality of life than the performance itself.

Conclusions:?The importance of social participation in regard to the quality of life of older persons with physical disabilities living in the community is partially supported by these findings. Other studies are needed to clarify how social participation influences quality of life in this population.     

社区慢性阻塞性肺疾病患者生存质量及其与社会支持的相关性

目的调查社区慢性阻塞性肺疾病患者生存质量及其与社会支持的相关性。方法采用生存质量和社会支持问卷,对61例社区慢性阻塞性肺疾病患者进行问卷调查。结果慢性阻塞性肺疾病患者的日常生活能力、社会活动状况因子分较高,提示这两个维度状况较差;慢性阻塞性肺疾病患者社会支持总分和主观支持得分分别与生存质量总分、日常生活能力、社会活动状况评分呈负相关(P0.01或P0.05)。结论社区护理人员应加强对社区慢性阻塞性肺疾病患者的管理,重视社会支持,以提高其生存质量。     

An outcome in need of clarity: building a predictive model of subjective quality of life for persons with severe mental illness living in the community.

PURPOSE: The study purpose was to construct a predictive model of subjective quality of life for persons with severe mental illness living in the community with particular attention to participation in occupations. METHOD: Persons with severe mental illness (N=154) rated their subjective quality of life. Several measures for each of the following categories of variables were completed: demographics, clinical, social participation, and self-measured well-being. Regression analysis was used to determine the significant predictors for each category and then to build the predictive model from these significant variables. RESULTS: Symptom distress accounted for the most variance (33%) in subjective quality of life, followed by psychological integration (3%) and physical integration (2%). CONCLUSIONS: The study suggests that occupational therapists should attend to subjective experience of symptoms to influence quality of life. Therapists are also in a good position to address their clients' sense of belonging to their communities and to enable community participation.     

Peer support need fulfillment among adults with spinal cord injury: relationships with participation,life satisfaction and individual characteristics

Purpose: To test the hypothesis among people with spinal cord injury (SCI) that greater fulfillment of peer support needs to be associated with greater participation and life satisfaction. A secondary objective was to identify characteristics of people in great need of SCI peer support. Method: The participants consisted of a population-based sample of 1549 adults with SCI. The participants completed a survey with questions on peer support, participation, life satisfaction and provided demographic and SCI-related information. A secondary analysis of cross-sectional survey data was conducted. A set of regression analyses tested the primary purpose and a partition analysis was conducted to examine the secondary objective. Results: In regression analyses, peer support need fulfillment was positively associated with autonomous-outdoors participation (p?p?p?p?Conclusions: The results provide some evidence that SCI peer support plays an important role in promoting participation and life satisfaction. Individuals with many SCI-related unmet needs are most likely to report a need for peer support.

• Implications for Rehabilitation

• The receipt of peer support after a spinal cord injury (SCI) is positively related to aspects of social participation and life satisfaction.

• Provision of peer support can play an important role in the SCI rehabilitation process.

• Education, injury-related characteristics, and the number of other unmet needs are factors that rehabilitation professionals can use to identify those in particular need of peer support.

• Rehabilitation professionals should encourage patients who have sustained an SCI, to participate in peer support programs.

     

'Finding a good thing': the use of quantitative and qualitative methods to evaluate an exercise class and promote exercise for adults with mobility impairments

Purpose: Physical inactivity in people with severe disabilities is common and has severe consequences. Conditioning classes are one way to increase activity and promote its health related outcomes. This paper reports the results of an evaluation of a community based conditioning class for adults with mobility impairments. Method: The study uses two methods with two samples: a quantitative self-report methodology and a quantitative interview. Results: The quantitative evaluation found no significant increases in standard self-report measures of physical activity, functional status, quality of life, depression, or exercise self-efficacy. The lack of significant quantitative results may be due to limits in study design. The open-ended qualitative interviews with 16 class participants show important physical, social and psychological improvements. The juxtaposition of these two perspectives allows researchers to recognize the limitations in their choice of methods and the challenges faced by researchers evaluating small community based programmes for this limited population. Conclusion: In this case, the qualitative evaluation captured the positive experiences of the exercise class participants.     

‘I Feel Free’: the Experience of a Peer Education Program with Fijians with Spinal Cord Injury

This paper examined the experiences of people with spinal cord injury and related neurological conditions (collectively referred to as SCI) who participated in a peer education program in Fiji and explored their perceptions of its impact on their community participation.The study used an exploratory qualitative design, involving nine people with SCI. Data were obtained via semi-structured interviews, six months after the initial peer education program delivered by the first author and another Australian wheelchair user. Three themes described participants’ experiences and perceptions of the peer education program. The world closes down illustrated the way that physical environments and community attitudes were unsupportive of participants’ fulfilling life roles. Seeing the possibilities described the participants’ experiences of learning from peers and beginning to imagine new possibilities. The final theme, Opening up the world, identified their perception of the peer education program’s impact, as their worlds opened up, and they resumed previously abandoned responsibilities and activities. Participants valued contact with peer educators as much as they did the content taught. Their greater sense of confidence, communication skills and wheelchair use contributed to participants’ increased sense of community participation.     

'Finding a good thing': the use of quantitative and qualitative methods to evaluate an exercise class and promote exercise for adults with mobility impairments

Purpose: Physical inactivity in people with severe disabilities is common and has severe consequences. Conditioning classes are one way to increase activity and promote its health related outcomes. This paper reports the results of an evaluation of a community based conditioning class for adults with mobility impairments. Method: The study uses two methods with two samples: a quantitative self-report methodology and a quantitative interview. Results: The quantitative evaluation found no significant increases in standard self-report measures of physical activity, functional status, quality of life, depression, or exercise self-efficacy. The lack of significant quantitative results may be due to limits in study design. The open-ended qualitative interviews with 16 class participants show important physical, social and psychological improvements. The juxtaposition of these two perspectives allows researchers to recognize the limitations in their choice of methods and the challenges faced by researchers evaluating small community based programmes for this limited population. Conclusion: In this case, the qualitative evaluation captured the positive experiences of the exercise class participants.     

Life satisfaction in people with spinal cord injury during the first five years after discharge from inpatient rehabilitation

Purpose: To describe the course of life satisfaction in persons with spinal cord injury (SCI) during the first 5 years after discharge from inpatient rehabilitation and to examine its determinants. Methods: Multi-centre prospective cohort study with four measurements, the first at discharge from inpatient rehabilitation, the last 5 years after discharge. Data of 162 persons with SCI were analyzed. Life satisfaction was measured as the sum score of ‘current life satisfaction’ and ‘current life satisfaction compared to life satisfaction before SCI’. Lesion characteristics, functional independence, secondary impairments, pain, social support and self-efficacy were analyzed as possible determinants of life satisfaction. Random coefficient analysis was used for the analyses. Results: No significant changes in life satisfaction were found between discharge and 2 years later, however there were significant increases from two to 5 years post discharge. High functional independence, low pain, high everyday social support and high self-efficacy were significant determinants of a positive course of life satisfaction after discharge. Conclusions: Increases in life satisfaction were found in persons with SCI in the long run. High functional status, low pain, good social skills and high self-efficacy were related to high life satisfaction.

Implications for Rehabilitation

• A spinal cord injury (SCI) is a major life event leading to serious physical disability and secondary medical problems, which has important consequences for the life satisfaction of the persons involved.

• No changes in mean life satisfaction ratings were found between discharge and two years later, but slight increases in life satisfaction were reported from two to five years post-discharge in persons with SCI.

• High functional independence, low pain, high everyday social support, and high self-efficacy were significant determinants of a positive course of life satisfaction after discharge.

• A combined model of physical (functional independence and pain) and psychosocial factors (social support and self-efficacy) explained 66% of the variance in life satisfaction.

     

The affective aspect of subjective well-being among Chinese people with and without spinal cord injuries

Purpose. The purpose of this study was two-fold: (a) To examine differences in affective aspects of subjective well-being between people with and without spinal cord injuries (SCI), and (b) to explore relationships among perceived health, social support, self-efficacy beliefs, and the affective aspect of subjective well-being in these groups.

Method. A cross-sectional survey was conducted in China. A total of 119 out-patients with SCI and 109 college students without a disability participated in the study. Main outcome measures included: (a) The Index of Psychological Well-Being, (b) the Self-Rated Health Status Scale, (c) the Self-Efficacy Scale, and (d) the Social Support Scale.

Results. A multiple analysis of the variance indicated that participants with SCI had lower affective subjective well-being, social support, social self-efficacy beliefs, and poor health compared to participants without SCI [F (5, 211) = 22.37, p < 0.001]. A hierarchical multiple linear regression analysis was conducted separately for each SCI and non-SCI group. Results indicated that the combination of perceived health, social support, and social self-efficacy accounted for 25% of the variance in affective subjective well-being [F (8, 104) = 4.22, p < 0.001] among participants with SCI. For participants without SCI, social support and social self-efficacy were related to the affective subjective well-being [F (7, 97) = 4.77, p < 0.001]. They accounted for 27% of the variance in affective subjective well-being.

Conclusions. People with SCI may have lower affective subjective well-being than those without SCI, and the perceptions of one's health, social skills, and social support may play important roles in achieving affective subjective well-being in people with SCI.     

Contributions of music to aging adults' quality of life

The purpose of this study was: (a) To evaluate and to compare the impact of three music programs (choir, music appreciation and preventive music therapy sessions) on the quality of life of healthy older adults, and (b) to identify the motivations and the difficulties that seniors encounter when participating in activities of this type, in order to come up with recommendations and strategies for the design of appropriate programs for older adults. A pre-posttest quasi-experimental design without equivalent control group was used in this project. The sample included 83 persons over 65 years of age. The data collection was carried out through an ad hoc questionnaire that included the four aspects of the construct of quality of life (physical health, subjective health, psychological well-being and interpersonal relations), a questionnaire on motivation and another on satisfaction about the program. This questionnaire on quality of life was administered twice: at the beginning of the programs (pretest) and at the end (posttest). The results of this study indicate that the participants perceived improvements in some aspects of their quality of life. In addition, the main reasons which motivate participation in these musical activities are to broaden the social network and to acquire new knowledge. The results are discussed in the light of the challenges of active and satisfactory aging.