Integrating the perspectives of individuals with spinal cord injuries, their family caregivers and healthcare professionals from the time of rehabilitation admission to community reintegration: protocol for a scoping study on SCI needs

Introduction There is fragmented information about the different needs following a spinal cord injury (SCI). Expressed SCI needs can be met or unmet, they change along the rehabilitation continuum (eg, acute, rehabilitation and reintegration into the community) and can be different for traumatic and non traumatic SCI. The general objective of this scoping study is to evaluate and integrate the needs of individuals with traumatic and non-traumatic SCI, their family caregivers and those reported by rehabilitation professionals from the time of rehabilitation admission to community reintegration. The specific objectives are to: (A) synthesise the needs of individuals with SCI as perceived by themselves, their family caregivers and rehabilitation professionals using two theoretical models, (B) classify needs as met and unmet, (C) explore the evolution of met/unmet needs from the time of rehabilitation admission to community reintegration and (D) provide recommendations to improve SCI care. Methods and analysis (A) identifying the most frequent met and unmet needs reported by adults with traumatic and non-traumatic SCI, their family caregivers and their rehabilitation professionals from the time of rehabilitation admission to community reintegration; (B) identifying relevant studies with a search in electronic databases; (C) charting the data based on categories refined and adjusted with a stakeholder group; (D) collating, summarising and reporting the results using two analytical frameworks (Maslow's hierarchical model of human needs and the Ferrans et al's model of health-related quality of life) and (E) a stakeholder consultation phase. Ethics and dissemination The results of this scoping study will allow understanding SCI needs from the time of rehabilitation admission to community reintegration from the perspective of different stakeholders. An integrated master report combining the needs of individuals with SCI from the perspectives of different stakeholders from the time of rehabilitation admission to community reintegration will follow the consultation meetings.

[1]  J. McGowan,et al.  PRESS Peer Review of Electronic Search Strategies: 2015 Guideline Statement. , 2016, Journal of clinical epidemiology.

[2]  W. Miller,et al.  Caregiving services in spinal cord injury: a systematic review of the literature , 2016, Spinal Cord.

[3]  A. Conti,et al.  Informal caregivers' needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences , 2016, Disability and rehabilitation.

[4]  J. Middleton,et al.  Prospective study of the occurrence of psychological disorders and comorbidities after spinal cord injury. , 2015, Archives of physical medicine and rehabilitation.

[5]  S. LaVela,et al.  Factors related to caregiving for individuals with spinal cord injury compared to caregiving for individuals with other neurologic conditions , 2015, The journal of spinal cord medicine.

[6]  Z. Khazaeipour,et al.  Depression Following Spinal Cord Injury: Its Relationship to Demographic and Socioeconomic Indicators. , 2015, Topics in spinal cord injury rehabilitation.

[7]  S. Sweet,et al.  Understanding Quality of Life in Adults with Spinal Cord Injury Via SCI-Related Needs and Secondary Complications. , 2014, Topics in spinal cord injury rehabilitation.

[8]  Frédéric Dumont,et al.  Spinal cord injury community survey: a national, comprehensive study to portray the lives of canadians with spinal cord injury. , 2014, Topics in spinal cord injury rehabilitation.

[9]  B. Trezzini,et al.  Impact of legal regulations and administrative policies on persons with SCI: identifying potential research priorities through expert interviews , 2014, Disability and rehabilitation.

[10]  Alexander Sasha Rabchevsky,et al.  Autonomic consequences of spinal cord injury. , 2014, Comprehensive Physiology.

[11]  J. Middleton,et al.  Psychological distress, quality of life, and burden in caregivers during community reintegration after spinal cord injury. , 2014, Archives of physical medicine and rehabilitation.

[12]  E. Ely,et al.  Improving patient care through the prism of psychology: application of Maslow's hierarchy to sedation, delirium, and early mobility in the intensive care unit. , 2014, Journal of critical care.

[13]  B. Henwood,et al.  Maslow and Mental Health Recovery: A Comparative Study of Homeless Programs for Adults with Serious Mental Illness , 2013, Administration and Policy in Mental Health and Mental Health Services Research.

[14]  S. Stiens,et al.  The person with a spinal cord injury: an evolving prototype for life care planning. , 2013, Physical medicine and rehabilitation clinics of North America.

[15]  M. Caliri,et al.  [Caregivers of individuals with spinal cord injury: caregiver burden]. , 2013, Revista da Escola de Enfermagem da U S P.

[16]  Tiziana Casciaro,et al.  Secondary health conditions and spinal cord injury: an uphill battle in the journey of care , 2013, Disability and rehabilitation.

[17]  Janet S Carpenter,et al.  Systematic review of health-related quality of life models , 2012, Health and Quality of Life Outcomes.

[18]  M. Verrier,et al.  Direct costs of adult traumatic spinal cord injury in ontario , 2012, Spinal Cord.

[19]  D. Beran Developing a hierarchy of needs for Type 1 diabetes , 2012, Diabetic medicine : a journal of the British Diabetic Association.

[20]  M. Fehlings,et al.  Incidence and Prevalence of Spinal Cord Injury in Canada: A National Perspective , 2012, Neuroepidemiology.

[21]  L. Noreau,et al.  Community needs of people living with spinal cord injury and their family. , 2012, Topics in spinal cord injury rehabilitation.

[22]  D. Allan,et al.  Adjustment and Coping in Spousal Caregivers Following a Traumatic Spinal Cord Injury: An Interpretative Phenomenological Analysis , 2012, Journal of health psychology.

[23]  Brian Lenehan,et al.  The Epidemiology of Traumatic Spinal Cord Injury in British Columbia, Canada , 2012, Spine.

[24]  L. Harvey,et al.  A comparison of patients' and physiotherapists' expectations about walking post spinal cord injury: a longitudinal cohort study , 2012, Spinal Cord.

[25]  D. Allan,et al.  The impact of assuming the primary caregiver role following traumatic spinal cord injury: An interpretative phenomenological analysis of the spouse's experience , 2010, Psychology & health.

[26]  D. Levac,et al.  Scoping studies: advancing the methodology , 2010, Implementation science : IS.

[27]  P. New A multidisciplinary consultation team to address the unmet needs of hospitalized patients with spinal cord injury. , 2010, Archives of neurology.

[28]  M. Post,et al.  Care needs of persons with long-term spinal cord injury living at home in the Netherlands , 2010, Spinal Cord.

[29]  Joachim Schöpfel,et al.  Grey Literature in Library and Information Studies , 2010 .

[30]  M. Olde Rikkert,et al.  Integrating unmet needs into dementia health-related quality of life research and care: Introduction of the Hierarchy Model of Needs in Dementia , 2010, Aging & mental health.

[31]  F. Biering-Sørensen,et al.  Employment of persons with spinal cord lesions injured more than 20 years ago , 2009, Disability and rehabilitation.

[32]  C. Lyder,et al.  Pressure Ulcer Prevention and Management in Spinal Cord-Injured Adults: Analysis of Educational Needs , 2008, Advances in skin & wound care.

[33]  T. Kroll Rehabilitative needs of individuals with spinal cord injury resulting from gun violence: the perspective of nursing and rehabilitation professionals. , 2008, Applied Nursing Research.

[34]  E. Day,et al.  The Hierarchy of Needs and care planning in addiction services: What Maslow can tell us about addressing competing priorities? , 2008 .

[35]  P. Manns,et al.  Perceptions of issues associated with the maintenance and improvement of long-term health in people with SCI , 2007, Spinal Cord.

[36]  F. Biering-Sørensen,et al.  Return to work following spinal cord injury: a review , 2007, Disability and rehabilitation.

[37]  R. Zalenski,et al.  Maslow's hierarchy of needs: a framework for achieving human potential in hospice. , 2006, Journal of palliative medicine.

[38]  P. Kennedy,et al.  Quality of life, social participation, appraisals and coping post spinal cord injury: a review of four community samples , 2006, Spinal Cord.

[39]  C. Manigandan,et al.  Leisure satisfaction and psychiatric morbidity among informal carers of people with spinal cord injury , 2006, Spinal Cord.

[40]  J. Wilbur,et al.  Conceptual model of health-related quality of life. , 2005, Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing.

[41]  E. Majercsik Hierachy of Needs of Geriatric Patients , 2005, Gerontology.

[42]  H. Arksey,et al.  Scoping studies: towards a methodological framework , 2005 .

[43]  J. Kreutzer,et al.  A Preliminary Study of Acute Family Needs after Spinal Cord Injury: Analysis and Implications , 2004 .

[44]  N. Tashiro,et al.  Frustration and fulfillment of needs in dissociative and conversion disorders , 2002, Psychiatry and clinical neurosciences.

[45]  Louis E. Calabro “First Things First”: Maslow's Hierarchy as a Framework for Rebt in Promoting Disability Adjustment During Rehabilitation , 1997 .

[46]  C. Glass,et al.  Spinal injury rehabilitation: do staff and patients agree on what they are talking about? , 1991, Paraplegia.

[47]  J. Minshull,et al.  The human needs model of nursing. , 1986, Journal of advanced nursing.

[48]  Ryan Williams,et al.  Prevalence of depression after spinal cord injury: a meta-analysis. , 2015, Archives of physical medicine and rehabilitation.

[49]  Jennifer H. Gao,et al.  Maslow and the motivation hierarchy: measuring satisfaction of the needs. , 2013, The American journal of psychology.

[50]  J. Higgins,et al.  Cochrane Handbook for Systematic Reviews of Interventions, Version 5.1.0. The Cochrane Collaboration , 2013 .

[51]  J. Higgins Cochrane handbook for systematic reviews of interventions. Version 5.1.0 [updated March 2011]. The Cochrane Collaboration , 2011 .

[52]  J. Boore,et al.  Living with a relative who has a spinal cord injury: a grounded theory approach. , 2009, Journal of clinical nursing.

[53]  K Whalley Hammell,et al.  Experience of rehabilitation following spinal cord injury: a meta-synthesis of qualitative findings. , 2007, Spinal cord.

[54]  K. Whalley Hammell Quality of life after spinal cord injury: a meta-synthesis of qualitative findings. , 2007, Spinal Cord.

[55]  M. Meade,et al.  The impact of Spinal Cord Injury on the employment of family caregivers , 2006 .

[56]  A. Maslow Motivation and Personality , 1954 .