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.

     

Success in the workplace following traumatic brain injury: are we evaluating what is most important?

Purpose:?Vocational outcome, and in particular full-time paid work, is considered an important indicator of successful rehabilitation following traumatic brain injury (TBI). However it has not been established that these outcomes adequately or accurately represent the values of the people with TBI. This paper describes a study exploring the experiences of individuals who attempted returning to work following TBI, with emphasis on factors that related to perceptions of ‘success’ or ‘failure’.

Method:?A phenomenological study, interviewing seven people with moderate to severe TBI was conducted. The interview data were analysed for themes relating to experiences of success or failure in the workplace. Community consultation provided additional perspectives in the interpretation and validation of results.

Results:?The results of this study support in part the assumption that paid employment is indicative of success following TBI. Equally prevalent were findings that challenged this assumption, including situations where: (1) return to employment contributed to catastrophic personal events, (2) feelings of success were achieved even though paid employment was not, and (3) success in the workplace was associated with factors other than hours worked or pay earned.

Conclusions:?This research suggests that the use of work placement as a measure of successful rehabilitation might misrepresent the perspective of individuals with TBI. A multi-factorial approach to evaluating vocational rehabilitation is recommended, which incorporates the subjective experience of work.     

Women on sickness absence—views of possibilities and obstacles for returning to work. A focus group study

Purpose:?The aim was to learn how women on sickness absence due to work related strain perceive and describe their possibilities and obstacles for returning to work.

Method:?The focus group method was used. Five groups were conducted and each group met at one occasion. Twenty women participated in total.

Results:?Three different themes were found. In ‘The process of losing control’ the participants describe the process from controlling every day living, to total loss of control of private and working life. The second theme, ‘Not finding alternatives’, deals with the difficulties of finding an alternative way back to work. ‘Mastering life as a whole’ contains strategies for regaining control over daily activities and life as a whole. The results show that personal as well as environmental factors have an impact for returning to work.

Conclusions:?In this study we have received an understanding of the complex situation of being on sickness absence due to work related strain. We have learned the importance of recognizing the context of the individual and understanding the interplay between the person and the environment. As professionals in rehabilitation we can use this knowledge to create a rehabilitation programme supporting people back to work.     

Contents of physical therapy,occupational therapy,and sports therapy sessions for patients with a spinal cord injury in three Dutch rehabilitation centres

Purpose.?To describe the contents of interventions to improve self-care and mobility for patients with spinal cord injury (SCI) in early post-acute rehabilitation, using the Spinal Cord Injury-Interventions Classification System (SCI-ICS), and to compare these interventions between rehabilitation centres. The SCI-ICS describes therapy to improve self-care and mobility at three levels of functioning and consists of 25 categories with a total of 139 different interventions.

Methods.?Fifty-three physical therapists, occupational therapists and sports therapists of three Dutch SCI rehabilitation centres recorded interventions with the SCI-ICS for patients with SCI in early post-acute rehabilitation for four consecutive weeks.

Results.?Therapists recorded 1640 treatment sessions of 48 patients with a SCI. The mean number of treatment sessions per patient per week (8.9 overall) differed between centres (p?<?0.05), unlike the mean therapy time in minutes per patient per week (259 overall). Highest frequencies for individual categories were found for ‘Muscle Power’, ‘Walking’, and ‘Hand rim wheelchair propulsion’.

Conclusions.?We described the specific contents of therapy of patients with a SCI in three Dutch rehabilitation centres. The largest proportion of time was spent on interventions to improve muscle power, walking, and hand rim wheelchair propulsion.     

Comparing the experience of outpatient therapy in home and day hospital settings after traumatic brain injury: patient,significant other and therapist perspectives

Purpose.?To explore how therapy in a home and day hospital setting impacts on rehabilitation processes and outcomes from the perspective of the patients, their significant others and their treating occupational therapists.

Method.?Fourteen participants with severe traumatic brain injury received a one-to-one, goal-directed, client-centred outpatient occupational therapy programme (a) in their home for 6 weeks and (b) in a day hospital clinic for 6 weeks. The experience of rehabilitation in both settings was explored using semi-structured interviews with the participants, their significant others and their treating occupational therapists.

Results.?Participants and their significant others described the two environments as disparate with home-based therapy perceived as more relaxing, normal, satisfying and effective. The approach to therapy at home was commonly described as ‘real-life’ whereas the therapy approach in day hospital was characterised as ‘simulation of real life tasks’ and ‘remedial exercises’. Participants' experience of therapy relationships at home was characterised as ‘friendship’, in which the therapist was a ‘visitor’, whereas in the hospital, participants were characterised as ‘patients’ and therapists as ‘bosses’ and ‘teachers’.

Conclusion.?The experience of home-based therapy was perceived as more convenient, positive and preferred by patients and their family members. Therapists described more therapeutic benefits and the ability to work more effectively on activity and participation level goals in the client's real-life environment.     

‘It was hard but you did it’: the co-production of ‘work’ in a clinical setting among spinal cord injured adults and their physical therapists

Purpose. This paper focuses on what takes place during the rehabilitation of spinal cord injured (SCI) adults. It analyses the cardinal rehabilitation task of transforming the compromised, limited and injured corporeal style of newly injured adults (best described phenomenologically as an ‘I cannot do’ or ‘ I no longer can’) into a new style of embodiment, one in which ‘I am newly abled’. This transformation is not a passive, surrendering experience. Rather, as informants repeatedly noted, ‘rehabilitation is hard work’. This paper examines that ‘work’.

Method. This paper draws from observational and interview data collected over an 18-month period in a metropolitan rehabilitation centre in the Midwestern United States. It presents an exemplar case of a clinical setting, that between a physical therapist and her SCI client.

Results. The interactional and meaning-making nature of clinical encounters are explicated, revealing the collaborative and situational constitution of rehabilitation work.

Conclusions. Experience-near, phenomenologically informed, research is shown to be a valuable way of understanding rehabilitation practices and how they might affect inpatients and staff.     

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.     

Encountering staff in the home: Three older adults' experience during six months of home-based rehabilitation

Purpose. The purpose of the present study was to explore and describe how older adults who received home-based rehabilitation perceived the staff during a period of 6 months when they received rehabilitation. Specifically, the study focused on how the participants collaborated with and made use of the services from the staff.

Method. In this case-oriented study, three older adults were interviewed continuously during the 6-month period they received home-based rehabilitation. The interviews were analysed continuously using a grounded theory approach.

Results. Five different modes of perceiving the staff were identified among the participants: as small talk persons, as discussions partners, as instructors and advisors, as teachers and as persons who carry out tasks efficiently. The three conditions that most came to influence the way the participants perceived collaborated with the staff were as follows: ‘experience and encounters with the staff’, ‘expectations for the future daily life’, and ‘the participants’ needs and tasks related to their disability’.

Conclusions. To achieve collaboration and user involvement, the staffs have to encounter each client differently in accordance with the various tasks that must be carried out during rehabilitation. Our findings indicate that this is particularly important for older adults during home-based rehabilitation, since older adults often have changing needs because of comorbidity.     

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.

     

Perceived impacts of a first wheelchair on social participation

Purpose.?To document perceived impacts in users' daily activities and social roles (social participation) following the acquisition of a first manual or powered wheelchair.

Methods.?A qualitative design with a phenomenological approach was used. Semi-structured interviews were conducted. An interview guide was developed based on the 12 social participation categories in the Disability Creation Process (DCP) conceptual model as themes underlying the questions: ‘What has changed in your daily life since you got your new wheelchair?’ and ‘What has not changed in your daily life that you thought you would do differently with your new wheelchair?’

Results and discussion.?The average age of the ten participants was 64.3 years (±16.3) and 90% had received a manual wheelchair. Four main themes emerged from the detailed analysis: changes in daily activities, expectations not met, impacts on social roles and emotional changes. The participants considered the changes in daily activities to be generally positive. Expectations not met mainly related to outdoor mobility. The participants had not anticipated the impacts on social roles and emotional changes, which demonstrate the complexity of human occupation.

Conclusion.?Getting a wheelchair is a major and complex event in a person's life.     

Electronic aids to daily living and quality of life for persons with tetraplegia

Purpose.?To compare the satisfaction with quality of life (QOL) of adults with tetraplegia from spinal cord injury (SCI) who use and do not use electronic aids to daily living (EADLs).

Method.?This study used a cross-sectional design. Thirty-six persons with spinal cord injuries or conditions at or above C5/6 level participated. Fifteen participants used EADL at home and 21 formed the comparison group of non-users of EADL; all were living in the community. We used the Quality of Life Profile-Physical Disabilities (QOLP-PD) to examine participant's QOL.

Results.?Both groups rated the levels of importance of all aspects of QOL equally. The EADL users rated their satisfaction with QOL significantly higher for total QOLP-PD scores and for four of the nine domains, including all three domains of belonging. The groups did not differ in age, FIM scores, level of education, and hours of paid attendant care. The EADL user group had significantly more males than females, and had higher levels of SCI.

Conclusions.?EADLs appear to contribute to the experience of greater subjective QOL for persons with severe physical disability from high SCI. Prospective cohort studies designs that employ methods and analytic plans to study the causal effect of EADLs on QOL are recommended. The QOLP-PD was found to be a valid measure of QOL for this population.     

Satisfaction with sexual life among persons with traumatic spinal cord injury and meningomyelocele

Purpose. To study satisfaction with sexual life and self-assessed sufficiency of sexual counselling in persons with traumatic spinal cord injury (SCI) and meningomyelocele (MMC).

Method. A postal questionnaire on aspects of health and functioning was answered by 190 persons with traumatic SCI who had been treated in the Spinal Injuries Unit in Sahlgrenska University Hospital, Göteborg, Sweden and 41 persons with MMC who were admitted to the Young Adult Teams in Göteborg, Borås and Skövde, Sweden.

Results. On a numerical scale from 0 (dissatisfied) to 10 (satisfied) the median of satisfaction with sexual life was 3 for the men and 4 for the women among the persons with traumatic SCI. In the MMC group the median of satisfaction with sexual life was 5 for the men and 8 for the women. Sexual dissatisfaction increased with increasing age in both groups. Inconvenience caused by urinary and faecal incontinence, as well as neuropathic pain increased sexual dissatisfaction in the men with traumatic SCI. A total of 69% of the men with traumatic SCI and 56 – 59% of the participants in other subgroups reported that the sexual counselling they had received was sufficient.

Conclusions. The results corroborate findings from earlier studies that satisfaction with sexual life is rather low among persons with SCI. Especially ageing men with traumatic SCI who have sustained injury at an older age are a challenge for rehabilitation. The high satisfaction with sexual life in the women in comparison with the men with MMC is a finding not reported earlier. Our results suggest that adequate treatment of incontinence and pain might improve even sexual satisfaction. Sexual counselling should be given to all individuals with SCI and to their partners. Sexual counselling for young adults with MMC is an important part of the rehabilitation process.     

Return to work in the context of everyday life 7–11 years after spinal cord injury – a follow-up study

Abstract

Purpose: The aim of this follow-up study was to explore experiences of return to work in the context of everyday life among adults 7–11 years after spinal cord injury (SCI).

Methods: This study used in-depth interviews and observations in a qualitative design with eight persons who had previously been interviewed in 2008. A narrative approach was used during data gathering and analysis.

Results: Return to work was experienced as something constantly needing to be negotiated in the context of everyday life. Several years after SCI expectations for work and perceptions of possibilities for meaningful work had changed. Five main themes were identified through the analysis, (1) negotiating the possibilities of working, (2) hope for future work tempered with concern, (3) education as a possible path to employment, (4) paths toward return to work in light of unmet support, and (5) unpaid occupations grounded in interest and competence.

Conclusions: Persons who have no higher education or lack viable employment to return to after SCI seem to be vulnerable in return to work. Early and timely interventions tailored to the person’s interests and competencies, in which the rehabilitation team has a distinct coordinating role, are thus critical in return to work.

• Implications for Rehabilitation

• Tensions between hope and expectations for work and unmet needs of support can lead to barriers in return to work, particularly for those who have no higher education or lack employment to return to after spinal cord injury.

• Rehabilitation after spinal cord injury can benefit from focus on how the balance of work fits into routines in the context of everyday life.

• Early and timely interventions integrating the person’s interests and competencies in return to work after spinal cord injury in combination with having a health care provider who has a distinct coordinating role are critical.

     

Perception of multimodal cognitive treatment for people with chronic widespread pain – Changing one's life plan

Purpose.?The aim of this study was to gain a deeper understanding of chronic widespread pain patients' perception of a multimodal treatment with a cognitive approach.

Methods.?A reformulated grounded theory study based on interviews with 16 participants in the programme was conducted at the end of a 6-month treatment period.

Results.?The result describes a conceptual model of the informants' perception of the treatment. The core category ‘changing one's life plan’ comprised of three categories: ‘changing one's perception of life’, ‘depending on support’ and ‘managing one's life’. Changing one's perception of life could be deep and overwhelming ‘overall life changes’ or more superficial ‘life adjustments’. Support by health professionals and the patient group were of importance. At the end of the rehabilitation program managing one's life was perceived as either ‘reorientation’ or ‘stagnation’. The informants who experienced overall life changes achieved reorientation with support by others, while those who experienced life adjustments did not change their way of managing one's life to any great extent.

Conclusion.?The core category changing one's life plan included the categories; changing one's perception of life, depending on support and managing one's life. Informants experiencing overall life changes were more likely to achieve reorientation than those who experienced life adjustments.     

Life goals and social identity in people with severe acquired brain injury: an interpretative phenomenological analysis

Abstract

Purpose: While there is a growing body of literature exploring life goals in rehabilitation, little research has been undertaken that includes the voice of the end-user. This study examined the views and experiences of people with severe acquired brain injury regarding the place of “life goals” in residential rehabilitation. Methods: Interpretative phenomenological analysis was used to collect and analyze data from five semi-structured interviews with participants in a residential rehabilitation setting. Results: Three inter-related themes emerged from this study. Social connectedness (being ‘part of things’) emerged as a life goal of central importance for all participants (Theme 1). However, in order to achieve this sense of belonging, the participants needed to tentatively balance the opportunities arising within their environmental milieu (Theme 2) with the interpersonal factors relating to their unchanged, changed and changing self-identity (Theme 3). Conclusions: This study suggests that social identity and social connectedness ought to be primary foci of rehabilitation rather than matters only of secondary concern. Consideration needs to be given to both the environmental contexts and the intrapersonal strategies that support people who require residential rehabilitation services to achieve social connection, and thus their life goals, following a severe acquired brain injury.

• Implications for Rehabilitation

• There is a need to better support people with severe acquired brain injury (ABI) in terms of their social relationships and social identity during the delivery of person-centered rehabilitation services.

• Within the clinical setting there should be regular, in depth and open dialogue in which the individuals’ values and preferences are discovered.

• A focus on the coherence between daily activities and the person’s life goals is required for people with severe ABI.

• Clinicians need to consider how life goals for individual people change or are re-prioritized over the life span.

     

Health of people with spinal cord injury in Singapore: implications for rehabilitation planning and implementation

Purpose.?This study aimed to provide a broad overview of the health of people with spinal cord injury (SCI) in Singapore, so as to highlight areas of potential need. These areas could then guide future research and rehabilitation programme development.

Methods.?Demographic data, injury information and information about SCI-related secondary impairments, chronic conditions and their associated risk factors, medical and hospital utilisation, participation (Craig Handicap Assessment and Reporting Technique) and life satisfaction (Satisfaction with Life Scale) were collected via interviews from people living with traumatic SCI.

Results.?On average, participants (50 men and 5 women) were aged 48.3 ± 16.54 years and had had their SCIs for 5 years. ?75%% with tetraplegia. The most prevalent SCI-related secondary impairments were pain, spasms, bladder problems, bowel problems and oedema. Chronic conditions and their associated risk factors were prevalent. Participation and life satisfaction scores were lower than those reported for similar populations cross-culturally.

Conclusion.?The study revealed several health areas that may be affecting the overall health of people with SCI in Singapore. By focusing on community reintegration and health promotion, physiotherapists and other rehabilitation professionals may augment health outcomes and improve the quality of life of this population in Singapore.     

Pilot evaluation of a coping-oriented supportive program for people with spinal cord injury during inpatient rehabilitation

Purpose: To report the feasibility and preliminary effects of a psychosocial care program entitled “coping-oriented supportive program” (COSP) for people with spinal cord injury (SCI) during inpatient rehabilitation.

Methods: This was a pilot test of the COSP using a convenience sample of 22 participants with SCI (11 participants per group) with pre- and post-test, comparison group design. The feasibility, acceptability, and preliminary effects of the COSP were examined.

Results: Nine patients with SCI in the intervention group and 11 in the comparison group who completed five or more sessions of the intervention were included in the data analysis. The COSP was feasible with high levels of recruitment, retention and protocol adherence. Good acceptability was suggested by the participants’ feedback on the intervention program. The intervention group had a statistically significant greater improvement in self-efficacy (z?=?–1.978, p?=?0.048), life enjoyment and satisfaction (z?=?–2.801, p?=?0.005), and satisfaction of social support (z?=?–2.298, p?=?0.022) at post-test, when compared to the comparison group. Whereas, no significant improvement was found for coping.

Conclusions: Our findings support the feasibility and acceptability of the COSP, and suggest that this intervention is a promising psychosocial care program to enhance people’s life satisfaction and well-being as well as the satisfaction of social support after SCI. Further testing of this program with a larger-sized and diverse sample of people with SCI is needed.

• Implications for Rehabilitation

• The Chinese culturally-sensitive psychosocial care program (coping-oriented supportive program) is feasible, and has the potential to enhance people’s self-efficacy in coping with spinal cord injury, and improve their psychosocial well-being and life satisfaction.

• The conventional inpatient spinal cord injury rehabilitation services could be improved by providing this “first-line” psychosocial care program in line with the current medical rehabilitation service.

     

Perceived information needs of community-dwelling persons with chronic spinal cord injury: Findings of a survey and impact of race

Objective. To examine the perceived information needs of community-dwelling individuals with chronic spinal cord injury (SCI) and to determine factors that influence these needs.

Design and participants. Cross-sectional survey mailed to 620 persons with chronic SCI who completed acute inpatient rehabilitation.

Results. Of 103 (17%) returned surveys, 82 contained complete information and were useable for this study. Individuals with chronic SCI (M time since injury = 7 ± 6 years) endorsed a multitude of information needs across a broad range of domains. Participant endorsements were most commonly observed in the areas of aging (73%), research (72%), financial aid (66%), and education (63%). Independent variables expected to influence information needs, including Internet use, whether the rehabilitation specialist also served as the primary care physician, and time since injury, showed no significant effect. Race/ethnicity was found to predict perceived information needs, with nonwhite participants endorsing a significantly greater degree of needs than white participants in 11 of 23 (48%) domains.

Conclusions. Perceived information needs of community-dwelling persons with SCI are not fully met years after discharge from acute inpatient rehabilitation, which may have implications with respect to psychological adjustment. Race/ethnicity appears to exert a significant influence on the endorsement of perceived information needs, but this finding must be investigated further considering other possible mediating/moderating variables. Results must be considered in light of the relatively low response rate of eligible participants.