Managing fatigue following spinal cord injury: A qualitative exploration

Purpose. To identify, from the perspectives of people with spinal cord injury (SCI), (a) appropriate components of a fatigue management programme; and (b) important outcomes or indicators of success.

Method. Collaborative, qualitative methodology comprising four focus groups undertaken simultaneously in Kelowna, Prince George, Vancouver and Victoria, British Columbia, Canada. Participants included a purposive sample of 21 men and women with complete and incomplete SCI of high and low tetraplegia and paraplegia. Two family members, two care-providing assistants and four occupational therapists provided additional information (total n = 29). Interpretive data analysis identified common themes addressing each research question.

Results. Building on those strategies they perceived to facilitate coping with fatigue, the participants identified 10 components of a helpful fatigue management programme. Dimensions of ‘successful’ outcomes from such a programme reflected quality of life concerns: enabling people with SCI to do the things they value, enhancing their sense of control over their lives, reducing pain and helplessness, increasing motivation and enhancing relationships strained by fatigue.

Conclusions. This study identifies many of the necessary elements of a fatigue management programme to meet the specific needs of people with SCI; and ascertains important indicators of a successful programme from the perspectives of those who must live with the outcomes.     

Vocational development following severe spinal cord injury: a longitudinal study

Vocational development of individual with spinal cord injury was studied from shortly after injury to two years after discharge from inpatient rehabilitation. Objectives included examining differences in the course of vocational development by level of functional independence, and predicting vocational outcomes two years after injury. Thirty-three spinal cord injury patients (17 quadriplegics, 16 paraplegics) were followed during the study. The Goldberg Scale of Vocational Development was used to measure changes in vocational development over time. The Barthel Index was used to measure level of functional independence. Results revealed that vocational development was markedly depressed during initial inpatient rehabilitation and for six months after injury. Gradual improvement occurred after six months, but two years after discharge the level of vocational development remained lower than that before injury. Changes in vocational development over time did not differ significantly by level of functional independence. Best predictors of successful vocational outcomes were educational attainment, educational plans made before injury, and origin of interests in work.     

Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs

Purpose: The purpose of this study is to explore the needs of people living with spinal cord injury, receiving formal carer and hospital services.

Materials and methods: This exploratory qualitative study was undertaken with people living with spinal cord injury in metropolitan or regional Victoria. Participants were recruited through the Australian Quadriplegic Association. Twenty-two in-depth interviews were conducted between September and October 2015. Participants were purposely selected based on their age, gender, level of injury, and compensation status. A thematic analysis was undertaken using a framework approach.

Results and conclusions: With respect to hospitalization, the findings highlighted the need for improved access to spinal cord injury specialist care and greater personalization of care delivery for people with spinal cord injury. When receiving formal care services, participants reported the need for carers to be educated in preventing and managing secondary conditions, and for information about managing carers in their life and home. A more reliable and accessible supply of carers was also required to reduce the anxiety associated with an actual or potential absence of their assistance. To improve the independence and quality of care and life for people living with spinal cord injury, more responsive and individualized care is needed in the hospital, rehabilitation, and community settings.

• Implications for rehabilitation

• Understanding the individualized needs of people living with spinal cord injury and their families with respect to carer management is necessary to provide tailored rehabilitation education and ensure appropriate community supports are in place.

• The development of individualized plans by rehabilitation health professionals for obtaining spinal cord injury specialist care post-discharge could reduce anxiety and improve safety and quality of care.

• Integrating peer support into rehabilitation processes could offer benefits in managing carer issues.

• Greater family involvement in the rehabilitation process and follow-up psychological support could assist with adjustment and quality of life post-discharge.

     

Considering how athletic identity assists adjustment to spinal cord injury: a qualitative study

Objectives

To establish how sport, and access to an athletic identity, has been used when adjusting to a spinal cord injury.

Design

Qualitative study using semi-structured interviews.

Setting

Private athletic club.

Participants

Eight (six males and two females) athletes from a wheelchair badminton club participated in the study. The individuals had finished rehabilitation, and were aged between 20 and 50 years.

Main outcome measures

A single semi-structured interview was undertaken with each participant.

Results

Following the thematic analysis, two final themes were presented: (1) adjustment and paradox of chronic illness; and (2) the role and value of an athletic identity.

Conclusions

Badminton provided participants with an opportunity to continue and develop a positive athletic identity. Identity may be used as a factor that can promote recovery, and is considered as a way to encourage and maintain positive long-term adjustment to disability.     

Employment participation following spinal cord injury: Relation to selected participant demographic,injury and psychological characteristics

Purpose. To determine the relationship between selected demographic, injury and psychological characteristics and the extent of employment undertaken following spinal cord injury (SCI).

Method. Data were collected from 289 persons with SCI who found employment post-injury. A survey was administered to patients of a specialist spinal cord injury unit located in South-Eastern Australia. A variety of demographic, injury and psychological variables were assessed for their relationship to the extent of employment undertaken following SCI. Extent of employment, was defined as time spent employed as a proportion of the time available for employment, and is hereafter referred to as "workrate."

Results. On average, participants reported having been employed for almost two-thirds of their available time. Study variables explained 22% (18% adjusted) of the variance in post-injury workrate. Individually, demographic and psychological variables, but not injury variables, were found to relate to the outcome measure.

Conclusions. Using a novel measure of employment outcome, this study yielded findings consistent with other research using alternate employment measures. Results suggest that demographic and psychological variables are more related to this measure of employment participation than are injury variables. The addition of environmental variables may allow for the explanation of more variance in outcome.     

Life satisfaction following spinal cord and traumatic brain injury: a comparative study

The current study was designed to examine the predictive validity of several factors that are common to spinal cord injury (SCI) and traumatic brain injury (TBI) populations to overall life satisfaction. We examined several demographic and functional predictors (1) within each group separately and (2) using both groups while controlling for unique predictors within groups. Participants included 190 and 57 individuals with SCI and TBI, respectively. To minimize the influence of injury duration, we assessed life satisfaction at 1-year postinjury in both groups. Functional disability (Functional Impairment Measure [FIM]) was the only common predictor within groups. For the TBI group, marital status was also a significant predictor of life satisfaction. None of the other predictors examined was significant among the SCI group. After functional disability and marital status were controlled, overall life satisfaction did not differ between groups. Total explained variance in life satisfaction was low in both groups, 9% and 25% in the SCI and TBI groups, respectively. Future directions are discussed.     

Employment participation following spinal cord injury: relation to selected participant demographic, injury and psychological characteristics

Purpose. To determine the relationship between selected demographic, injury and psychological characteristics and the extent of employment undertaken following spinal cord injury (SCI).

Method. Data were collected from 289 persons with SCI who found employment post-injury. A survey was administered to patients of a specialist spinal cord injury unit located in South-Eastern Australia. A variety of demographic, injury and psychological variables were assessed for their relationship to the extent of employment undertaken following SCI. Extent of employment, was defined as time spent employed as a proportion of the time available for employment, and is hereafter referred to as “workrate.”

Results. On average, participants reported having been employed for almost two-thirds of their available time. Study variables explained 22% (18% adjusted) of the variance in post-injury workrate. Individually, demographic and psychological variables, but not injury variables, were found to relate to the outcome measure.

Conclusion. Using a novel measure of employment outcome, this study yielded findings consistent with other research using alternate employment measures. Results suggest that demographic and psychological variables are more related to this measure of employment participation than are injury variables. The addition of environmental variables may allow for the explanation of more variance in outcome.     

Activity and participation after spinal cord injury: state-of-the-art report

The importance of activities and community participation for persons with spinal cord injury (SCI) has been recognized for decades and yet theoretical and empirical advances have been limited. This report summarizes the recommendations for researchers on the topic of measuring activity and participation among persons with SCI formulated by the Spinal Cord Injury workgroup at the State-of-the-Art Conference on Outcome Measures in Rehabilitation held in January 2010. Activity and participation were defined as independent constructs ideally measured in reference to personal values and environmental influences. Measures of activity, participation, and factors influencing activity and participation are reviewed and critiqued. Gaps in available measures are described, measures in development are discussed, and suggestions for future research are made.     

Wheelchair-specific fitness of persons with a long-term spinal cord injury: cross-sectional study on effects of time since injury and physical activity level

Purpose: To study the impact of time since injury (TSI) and physical activity (PA) on fitness of persons with spinal cord injury (SCI). Method: Cross-sectional study. Persons with SCI (N?=?158) in three TSI strata: 10–19, 20–29 and ≥30 years after SCI and divided in an active and inactive group. Fitness [peak power output (POpeak) and peak oxygen uptake (VO2peak)] was assessed. Results: In persons with tetraplegia, no significant relationship was found between TSI and fitness after controlling for confounders, while a higher activity level was related to a higher POpeak in this group. Active people with tetraplegia also showed less decline in POpeak with an increase in TSI compared to inactive people. In persons with paraplegia, after controlling for confounders, it was shown that TSI had a negative effect on POpeak, while PA was not significantly associated with fitness in people with paraplegia. Conclusions: In people with paraplegia, fitness was significantly lower in those with a longer TSI. Persons with a long TSI might need more attention to remain fit and PA might be an important element in that respect as shown by the results of the group with a tetraplegia.

• Implications for Rehabilitation

• Wheelchair-specific fitness seems to diminish over time after paraplegia.

• An active lifestyle is related to wheelchair-specific fitness in persons with tetraplegia.

• Prevention of long-term deconditioning is very important.

     

Psychosocial factors associated with physical activity in ambulatory and manual wheelchair users with spinal cord injury: a mixed-methods study

Purpose: To identify psychosocial factors which explain lower levels of leisure time physical activity (LTPA) in persons with spinal cord injury (SCI) who are ambulatory relative to those who use manual wheelchairs. Method: For the quantitative study component, 347 adults with SCI (78% male; M age?=?47.7) completed baseline measures of LTPA attitudes, subjective norms, perceived behavioural control and intentions. Six months later, LTPA was assessed. The qualitative component involved semi-structured interviews with six ambulant adults with SCI (five male, M age?=?52.8) addressing LTPA experiences with an emphasis on barriers and facilitators. Results: Ambulatory individuals had poorer attitudes towards LTPA than chair users (p?=?0.004). Their attitudes had significant indirect effects on LTPA, through intentions. Perceived behavioural control was a significant negative predictor of LTPA. Qualitative analysis revealed three themes: an underestimated disability, low wheelchair skill self-efficacy and experiencing chronic pain. Conclusions: Poorer attitudes towards LTPA may partially explain why ambulatory individuals are less active. The qualitative and quantitative data suggest ambulators are an often-overlooked subgroup in need of targeted resources to enhance their attitudes, wheelchair skill self-efficacy and awareness of LTPA opportunities.

• Implications for Rehabilitation

• Rehabilitation practitioners must be sensitive to the unique needs of spinal cord injured individuals who are ambulatory, and tailor physical activity promotional strategies to suit the needs of this distinct group.

• Lack of wheelchair skills is a participation barrier for ambulators; ambulators should be introduced to activities that do not require wheelchair use, such as swimming, hand-cycling and adapted forms of circuit training.

• Strategies that encourage wheelchair skill development in non-wheelchair using ambulators, may increase physical activity opportunities for this segment of the spinal injured population.

     

Strategies for autonomy used by people with cervical spinal cord injury: a qualitative study

Purpose. To identify strategies used by people with high cervical spinal cord injury (SCI) to function autonomously. A multidimensional concept of autonomy was used, with four dimensions: independence, self-determination, participation and identification.

Methods. Qualitative methods were used, involving literature study and semi-structured interviews with eight individuals with high SCI who had been discharged from the rehabilitation centre for several years and were members of a sports club.

Results. Strategies for independence included making independent functioning a personal challenge and learning from others with SCI. Strategies for self-determination included keeping oneself informed, setting personal goals and being assertive. Strategies for participation were making challenges out of barriers, planning and organizing, asking and accepting help, and dealing with reactions from others. Strategies for identification involved taking life as it comes and focussing on positive aspects of life.

Conclusions. Different strategies are necessary for different dimensions of autonomy. Some strategies seem contradictory in terms of their effects on different dimensions of autonomy. Patients can be made aware of strategies for autonomy during the rehabilitation phase.     

Return to work following spinal cord injury: a review

Purpose. To review literature on return to work (RTW) and employment in persons with spinal cord injury (SCI), and present employment rates, factors influencing employment, and interventions aimed at helping people with SCI to obtain and sustain productive work.

Methods. A systematic review for 2000 - 2006 was carried out in PubMed/Medline, AMED, (ISI) Web of Science, EMBASE, CINAHL, PsycInfo and Sociological abstracts database. The keywords 'spinal cord injuries', 'spinal cord disorder', 'spinal cord lesion' or 'spinal cord disease' were cross-indexed with 'employment', 'return to work', 'occupation' or 'vocational'.

Results. Out of approximately 270 hits, 110 references were used, plus 13 more found elsewhere. Among individuals with SCI working at the time of injury 21 - 67% returned to work after injury. RTW was higher in persons injured at a younger age, had less severe injuries and higher functional independence. Employment rate improved with time after SCI. Persons with SCI employed ranged from 11.5% to 74%. Individuals who sustained SCI during childhood or adolescence had higher adult employment rates. Most common reported barriers to employment were problems with transportation, health and physical limitations, lack of work experience, education or training, physical or architectural barriers, discrimination by employers, and loss of benefits. Individuals with SCI discontinue working at younger age.

Conclusions. This review confirmed low employment rates after SCI. Future research should explore interventions aimed at helping people with SCI to obtain and sustain productive work.     

大鼠脊髓损伤后神经源性膀胱模型的制备

摘要 目的：提供一套较系统、可重复率高、可变系数低的神经源性膀胱模型的制备方案。 方法：采用Hassan Shaker脊髓横断法并加以改良,在Hassan Shaker法的基础上改用国内动物造模常用的水合氯醛行腹腔麻醉,用牙科钩沿横断椎间隙横向钩出脊髓,手术刀切断脊髓后反复刮扫以确定脊髓完全横断;并将此法运用于不同节段的大鼠脊髓损伤模型的制作,根据骶上和骶髓的分组选择不同的位置（T10/11和L2/3椎间隙）进行手术完全切断脊髓,并配合相应的术前、术后护理方案。 结果：改良后的造模方案提高了造模后大鼠的存活率（骶上组80%,骶髓组90%）、成模率（骶上组70%,骶髓组80%）并降低了并发症的发生率（骶上组70%,骶髓组60%）;造模后大鼠最大膀胱容量较空白组明显升高（P＜0.01）,与脊髓休克期相比,骶上组大鼠休克期后的最大膀胱容量明显降低（P＜0.01）,骶髓组大鼠容量较前无明显变化（P>0.05）,脊髓休克期后骶髓组大鼠最大膀胱容量明显高于骶上组（P＜0.01）;经光镜观察,造模后大鼠的膀胱组织形态均发生了不同程度的病理损害。 结论：采用改良Hassan Shaker法可制备大鼠骶上和骶髓不同节段脊髓损伤后神经源性膀胱模型。     

Return to work following spinal cord injury: a review

Purpose. To review literature on return to work (RTW) and employment in persons with spinal cord injury (SCI), and present employment rates, factors influencing employment, and interventions aimed at helping people with SCI to obtain and sustain productive work.

Methods. A systematic review for 2000 – 2006 was carried out in PubMed/Medline, AMED, (ISI) Web of Science, EMBASE, CINAHL, PsycInfo and Sociological abstracts database. The keywords ‘spinal cord injuries’, ‘spinal cord disorder’, ‘spinal cord lesion’ or ‘spinal cord disease’ were cross-indexed with ‘employment’, ‘return to work’, ‘occupation’ or ‘vocational’.

Results. Out of approximately 270 hits, 110 references were used, plus 13 more found elsewhere. Among individuals with SCI working at the time of injury 21 – 67% returned to work after injury. RTW was higher in persons injured at a younger age, had less severe injuries and higher functional independence. Employment rate improved with time after SCI. Persons with SCI employed ranged from 11.5% to 74%. Individuals who sustained SCI during childhood or adolescence had higher adult employment rates. Most common reported barriers to employment were problems with transportation, health and physical limitations, lack of work experience, education or training, physical or architectural barriers, discrimination by employers, and loss of benefits. Individuals with SCI discontinue working at younger age.

Conclusions. This review confirmed low employment rates after SCI. Future research should explore interventions aimed at helping people with SCI to obtain and sustain productive work.     

Family participation during physical activity in the intensive care unit: A longitudinal qualitative study

PurposeFamily-centered care has been implemented in the ICU to meet relatives' needs concerning information, support, participation and shared decision making. This study explores the needs, beliefs, feelings and behaviors of relatives of patients admitted to the ICU regarding participation during physical activity.MethodsLongitudinal qualitative study design following a grounded theory approach. Relatives were interviewed at 4, 8 and 12 days after the patient's ICU-admission. Data were analyzed using constant comparison.ResultsTwenty-five interviews were conducted in ten relatives. Relatives believed that physical activity in the ICU improves recovery. Participating in physical activity decreased their feelings of powerlessness and uselessness. Relatives mentioned that they would be stimulated to participate if they were invited, guided and informed by healthcare providers. The perceived reticence of healthcare providers, patient's health-changing capacity and the inability to communicate led to a more passive attitude towards participation.ConclusionsThe conceptual model shows how family participation during physical activity changes from a passive role, with negative beliefs and feelings of uselessness and powerlessness, to a more proactive participatory role. Relatives felt more useful and like they were part of the team. Providing relatives with additional information might be a viable strategy to help and stimulate participation.