Quality of life, social participation, appraisals and coping post spinal cord injury: a review of four community samples

Study design:Cross-sectional or psychotherapy, questionnaire.Objectives:To examine the community needs of people with spinal cord injury (SCI) across four European countries and to identify areas of unmet needs. It is intended that this information will be of use to rehabilitation professionals in fostering greater social participation among SCI individuals.Setting:United Kingdom, Germany, Austria and Switzerland.Methods:Self-report questionnaires were sent to 1000 people with SCI resident in the community in the UK, Germany, Austria and Switzerland. Questionnaires measured current needs, community integration, mood, appraisals, coping strategies, functional independence and perceived manageability.Results:Occupation, sexual activity and pain relief were areas indicative of highest community needs in all four countries. Most participants were psychologically well adjusted and socially integrated into the community. Well-addressed needs were skin management, wheelchair needs and accommodation. Some differences that occurred in certain areas across the four countries were found.Conclusion:This study has highlighted that the main areas of unmet needs for a European community sample of people with SCI includes levels of occupation, sexual activity and pain relief. The findings will be of interest to those involved in rehabilitation of newly as well as long-term injured people and demonstrate the need to consistently readdress such issues as part of a person's long-term rehabilitation in order to achieve and maximise effective social participation.

[1]  W. Nielson,et al.  Depression and activity patterns of spinal cord injured persons living in the community. , 1987, Archives of physical medicine and rehabilitation.

[2]  A. Fugl-Meyer,et al.  Vocational rehabilitation in northern Sweden. III. Aspects of life satisfaction. , 1991, Scandinavian journal of rehabilitation medicine.

[3]  W. Katon,et al.  Appraised changeability of a stressor as a modifier of the relationship between coping and depression: a test of the hypothesis of fit. , 1990, Journal of personality and social psychology.

[4]  J P Lubicky,et al.  Long-term outcomes and life satisfaction of adults who had pediatric spinal cord injuries. , 1998, Archives of physical medicine and rehabilitation.

[5]  A. Flint,et al.  Factor structure of the hospital anxiety and depression scale in older patients with major depression , 2002, International journal of geriatric psychiatry.

[6]  G. Whiteneck,et al.  Secondary conditions following spinal cord injury in a population-based sample , 1998, Spinal Cord.

[7]  J. Stanghelle,et al.  Pain and life quality within 2 years of spinal cord injury , 1995, Paraplegia.

[8]  R Philip Snaith The Hospital Anxiety And Depression Scale , 1986, British medical journal.

[9]  Cv. Granger,et al.  Guide for the use of the uniform data set for medical rehabilitation , 1986 .

[10]  D. Amsters,et al.  The need for a multidisciplinary outreach service for people with spinal cord injury living in the community , 2001, Clinical rehabilitation.

[11]  J. Parker,et al.  Multidimensional assessment of coping , 1990 .

[12]  P. Kennedy,et al.  Anxiety and depression after spinal cord injury: a longitudinal analysis. , 2000, Archives of physical medicine and rehabilitation.

[13]  M. Devivo,et al.  Community reintegration and quality of life following spinal cord injury , 1992, Paraplegia.

[14]  M. Sullivan,et al.  Linkages between coping and psychological outcome in the spinal cord lesioned: development of SCL-related measures , 2002, Spinal Cord.

[15]  S. Garber,et al.  Pressure ulcers in community-resident persons with spinal cord injury: prevalence and risk factors. , 1993, Archives of physical medicine and rehabilitation.

[16]  C. Warms,et al.  Chronic pain associated with spinal cord injuries: a community survey. , 2001, Archives of physical medicine and rehabilitation.

[17]  G L MADDOX,et al.  A critical evaluation , 2012 .

[18]  M. Devivo,et al.  Interference due to pain following spinal cord injury: important predictors and impact on quality of life , 2002, Pain.

[19]  P. Kennedy,et al.  Factors associated with acute and chronic pain following traumatic spinal cord injuries , 1997, Spinal Cord.

[20]  M. Fuhrer,et al.  SEXUAL ACTIVITIES, CONCERNS AND INTERESTS OF WOMEN WITH SPINAL CORD INJURY LIVING IN THE COMMUNITY , 1993, American journal of physical medicine & rehabilitation.

[21]  S. Folkman,et al.  Stress, appraisal, and coping , 1974 .

[22]  M. Sullivan,et al.  Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury , 1998, Spinal Cord.

[23]  G. Kleftaras,et al.  Paraplegia from Spinal Cord Injury: Self-Esteem, Loneliness, and Life Satisfaction , 2002 .

[24]  P. Kennedy,et al.  Reported quality of life of people with spinal cord injuries: a longitudinal analysis of the first 6 months post-discharge , 2000, Spinal Cord.

[25]  M. Dijkers,et al.  PREDICTING DEPRESSION AND PSYCHOLOGICAL DISTRESS IN PERSONS WITH SPINAL CORD INJURY BASED ON INDICATORS OF HANDICAP , 1994, American journal of physical medicine & rehabilitation.

[26]  G. Whiteneck,et al.  Quantifying handicap: a new measure of long-term rehabilitation outcomes. , 1992, Archives of physical medicine and rehabilitation.

[27]  H. Znoj,et al.  Regulation of emotion and psychological symptoms in people with spinal cord injury , 2002 .

[28]  A. Meyers,et al.  Predictors of Secondary Conditions in a Sample of Independently Living Adults with High-Level Spinal Cord Injury , 2000 .

[29]  Alan Hurst Personal and Social Implications of Spinal Cord Injury: A Retrospective Study , 1988 .

[30]  P. Kennedy,et al.  A longitudinal analysis of psychological impact and coping strategies following spinal cord injury , 2000 .

[31]  N. Papadakis,et al.  Post traumatic paraplegics living in Athens: The impact of pressure sores and UTIs on everyday life activities , 1998, Spinal Cord.

[32]  M. Dijkers,et al.  The Craig Handicap Assessment and Reporting Technique (CHART): Metric Properties and Scoring , 1998 .

[33]  S. Folkman,et al.  Stress, Appraisal, and Coping. New York, NY: Springer; , 1984 .

[34]  M. Dijkers Community Integration: Conceptual Issues and Measurement Approaches in Rehabilitation Research , 1998 .

[35]  D. Grundy,et al.  ABC of Spinal Cord Injury , 1986 .

[36]  D. Grundy,et al.  ABC of spinal cord injury. Social needs of the patient and his family. , 1986, British medical journal.

[37]  A. Fugl-Meyer,et al.  Happiness and domain-specific life satisfaction in adult northern Swedes , 1991 .

[38]  R. Snaith,et al.  The hospital anxiety and depression scale. , 2013, Acta psychiatrica Scandinavica.

[39]  Tom Cox,et al.  The Appraisal of Life Events (ALE) scale: Reliability and validity. , 1999 .

[40]  P. Manns,et al.  Determining the relation between quality of life, handicap, fitness, and physical activity for persons with spinal cord injury. , 1999, Archives of physical medicine and rehabilitation.

[41]  Michelle E. Cohen,et al.  Characteristics of the Functional Independence Measure in traumatic spinal cord injury. , 1999, Archives of physical medicine and rehabilitation.

[42]  M Sullivan,et al.  Effects of coping on psychological outcome when controlling for background variables: a study of traumatically spinal cord lesioned persons , 2002, Spinal Cord.

[43]  G. Whiteneck Measuring what matters: Key rehabilitation outcomes , 1994 .

[44]  P. Lundmark,et al.  Relationship between occupation and life satisfaction in people with multiple sclerosis. , 1996, Disability and rehabilitation.

[45]  M. Viitanen,et al.  Life satisfaction in long-term survivors after stroke. , 1988, Scandinavian journal of rehabilitation medicine.

[46]  D. Brown,et al.  Continuing care of the spinal cord injured , 1987, Paraplegia.

[47]  M. Dijkers,et al.  Measures of social outcomes in disability research. , 2000, Archives of physical medicine and rehabilitation.

[48]  Michel Hersen,et al.  Comprehensive clinical psychology , 1998 .

[49]  C. Harrison,et al.  Community reintegration of SCI persons: problems and perceptions. , 1989, SCI nursing : a publication of the American Association of Spinal Cord Injury Nurses.

[50]  M E Young,et al.  Relationship of life satisfaction to impairment, disability, and handicap among persons with spinal cord injury living in the community. , 1992, Archives of physical medicine and rehabilitation.

[51]  M. Fuhrer,et al.  Depressive symptomatology in persons with spinal cord injury who reside in the community. , 1993, Archives of physical medicine and rehabilitation.

[52]  James S. Krause Years to employment after spinal cord injury. , 2003, Archives of physical medicine and rehabilitation.

[53]  A. Kohli,et al.  Chronic pain in spinal cord injury: comparison between inpatients and outpatients. , 1985, Archives of physical medicine and rehabilitation.

[54]  P. Laud,et al.  Perceived Barriers to Employment in Individuals with Spinal Cord Injury , 2002 .

[55]  M. Kamm,et al.  Bowel dysfunction in spinal-cord-injury patients , 1996, The Lancet.

[56]  M. McColl,et al.  The effect of aging and duration of disability on long term health outcomes following spinal cord injury , 1995, Paraplegia.

[57]  Macdonald Mr,et al.  Depression and activity patterns of spinal cord injured persons living in the community. , 1987 .

[58]  G. Whiteneck,et al.  Bowel management outcomes in individuals with long-term spinal cord injuries , 1997, Spinal Cord.

[59]  R. Schulz,et al.  Long-term adjustment to physical disability: the role of social support, perceived control, and self-blame. , 1985, Journal of personality and social psychology.

[60]  L. D. de Witte,et al.  Predictors of health status and life satisfaction in spinal cord injury. , 1998, Archives of physical medicine and rehabilitation.

[61]  A. Craig,et al.  A longitudinal investigation into anxiety and depression in the first 2 years following a spinal cord injury , 1994, Paraplegia.

[62]  P. Trafton Spinal cord injuries. , 1982, The Surgical clinics of North America.

[63]  K. Gerhart Spinal cord injury outcomes in a population-based sample. , 1991, The Journal of trauma.

[64]  J. Putzke,et al.  The impact of pain in spinal cord injury: A case–control study. , 2000 .

[65]  T. T. Haug,et al.  The validity of the Hospital Anxiety and Depression Scale. An updated literature review. , 2002, Journal of psychosomatic research.

[66]  N. Endler,et al.  Multidimensional assessment of coping: a critical evaluation. , 1990, Journal of personality and social psychology.

[67]  M Sullivan,et al.  Spinal cord injury and quality of life measures: a review of instrument psychometric quality , 2000, Spinal Cord.

[68]  D. Short,et al.  Mortality, morbidity, and psychosocial outcomes of persons spinal cord injured more than 20 years ago , 1992, Paraplegia.