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Exercising Choice and Control: A Qualitative Meta-synthesis of Perspectives of People With a Spinal Cord Injury

Open AccessPublished:February 19, 2019DOI:https://doi.org/10.1016/j.apmr.2019.01.011

      Abstract

      Objective

      To systematically search the literature and construct a meta-synthesis of how choice and control are perceived by people with spinal cord injury (SCI).

      Data Sources

      Medline, Academic Search Premier, CINAHL, Cochrane, EMBASE, HealthSource, ProQuest, PsychInfo, SAGE, and SCOPUS were searched from 1980 until September 2018 including all languages. Reference lists of selected studies were also reviewed.

      Study Selection

      Eligible qualitative studies included perspectives about choice of control as reported by people with an SCI. Studies were excluded if they included perspectives from other stakeholder groups. A total of 6706 studies were screened for title and abstract and full text of 127 studies were reviewed resulting in a final selection of 29.

      Data Extraction

      Characteristics of the studies were extracted along with any data (author interpretations and quotes) relating to perspectives on choice and control.

      Data Synthesis

      First-order analysis involved coding the data in each study and second-order analysis involved translating each segment of coded data into broader categories with third-order analysis condensing categories to 2 broad overarching themes. These themes were experiencing vulnerability or security and adapting to bounded abilities.

      Conclusions

      Perspectives of choice and control are influenced by interrelated environmental, interpersonal, and personal contexts. From a personal perspective, participants reported a readiness for adaptation that included turning points where emotional and cognitive capacity to make choices and take control changed. Health professionals need to be responsive to this readiness, promote empowerment and foster, rather than remove, hope.

      Keywords

      List of abbreviations:

      SCI (spinal cord injury)
      Spinal cord injury (SCI) occurs in both traumatic and nontraumatic ways with the most common causes of traumatic SCI being motor vehicle accidents, falls, violence and sport.
      • Van den Berg M.E.
      • Castellote J.M.
      • Mahillo-Fernandez I.
      • de Pedro-Cuesta J.
      Incidence of spinal cord injury worldwide: a systematic review.
      Nontraumatic SCIs are more insidious such as development of spondylosis causing compression, vascular issues, tumors, and inflammation affecting the neural tissues in the spinal cord.
      • Van den Berg M.E.
      • Castellote J.M.
      • Mahillo-Fernandez I.
      • de Pedro-Cuesta J.
      Incidence of spinal cord injury worldwide: a systematic review.
      Injuries can occur at different levels of the spinal cord and may be incomplete or complete resulting in different experiences and classifications of resulting disability.
      • Kirshblum S.C.
      • Burns S.P.
      • Biering-Sorensen F.
      • et al.
      International standards for neurological classification of spinal cord injury (revised 2011).
      • Roberts T.T.
      • Leonard G.R.
      • Cepela D.J.
      Classifications in brief: American Spinal Injury Association (ASIA) Impairment Scale.
      Across the variable classifications of disability, all individuals with SCI experience considerable change to their lives from disruption of their motor and sensory abilities.
      • Lee B.B.
      • Cripps R.A.
      • Fitzharris M.
      • Wing P.C.
      The global map for traumatic spinal cord injury epidemiology: update 2011, global incidence rate.
      Across the world, the highest population affected are men in the 15- to 32-year-old age group
      • Lee B.B.
      • Cripps R.A.
      • Fitzharris M.
      • Wing P.C.
      The global map for traumatic spinal cord injury epidemiology: update 2011, global incidence rate.
      • Norton L.
      Spinal cord injury, Australia 2007-2008.
      who may be more exposed to the occupations that commonly result in traumatic SCI compared to women and other age groups.
      • Turner C.
      • McClure R.
      Age and gender differences in risk-taking behaviour as an explanation for high incidence of motor vehicle crashes as a driver in young males.
      The central goal for a person following SCI is fulfillment of participation in life.
      World Health Organization
      International classification of functioning, disability and health.
      Participation is an important concept in relation to functioning, levels of disability, and maintenance of health and is defined by the World Health Organization as “involvement in a life situation.”
      World Health Organization
      International classification of functioning, disability and health.
      (p10) However, full participation following SCI may be compromised by limited mobility, sensation, and movement issues.
      • Lund M.L.
      • Nordlund A.
      • Bernspang B.
      • Lexell J.
      Perceived participation and problems in participation are determinants of life satisfaction in people with spinal cord injury.
      Participation in life depends on performing tasks such as activities of daily living, having relationships, and engaging in social activities and occupations commensurate with one’s life stage, goals, and values. The capacity to participate relies in part on choice and control over one’s life. Within Western cultures with individualist values there is a strong need for control that is satisfied by having power to make choices as well as access to different choices.
      • Hurst R.
      The International Disability Rights Movement and the ICF.
      People with disabilities (including those with SCI) can frequently have their need for control undermined by physical, cultural, and institutional environments leaving them in a vulnerable position with a chronic lack of power in society.
      Decades ago, the disability movement called for services to holistically approach the needs of people with a disability and to provide support without discrimination to ensure human and health rights were upheld.
      • Hurst R.
      The International Disability Rights Movement and the ICF.
      • Kendrick M.
      • Ward M.
      • Chenoweth L.
      Australia’s national disability insurance scheme: looking back to shape the future.
      As a result, policies were developed with an emphasis on equal access to services, and personalized and consumer-directed care.
      NDIS Independent Advisory Council
      Choice and control: reflections on the implementation of the principle of choice and control under the NDIS2013.
      Lifetime Support Authority
      Lifetime support authority of South Australia's strategy.
      • Ottmann G.
      • Laragy C.
      • Haddon M.
      Experiences of disability consumer-directed care users in Australia: results from a longitudinal qualitative study.
      • Owens J.
      • Mladenov T.
      • Cribb A.
      What justice, what autonomy? The ethical constraints upon personalisation.
      The philosophies, standards, and regulations underpinning these policies and associated legislation are supported by evidence suggesting that choice and control over services enables people to be empowered and self-determining.
      • Dickinson H.
      • Needham C.
      • Sullivan H.
      Individual funding for disability support: what are the implications for accountability?.
      For the promotion of self-management,
      • Lord J.
      • Hutchison P.
      Individualised support and funding: building blocks for capacity building and inclusion.
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      there is a growing policy imperative for shared decision making between health professionals and people with disability.
      • Lord J.
      • Hutchison P.
      Individualised support and funding: building blocks for capacity building and inclusion.
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      However, the translation of policy into practice has been fraught with tensions
      • Kendrick M.
      • Ward M.
      • Chenoweth L.
      Australia’s national disability insurance scheme: looking back to shape the future.
      such as ingenuine consultation with consumers, insufficient funds for need, and difficulty procuring appropriate services.
      • Ottmann G.
      • Laragy C.
      • Haddon M.
      Experiences of disability consumer-directed care users in Australia: results from a longitudinal qualitative study.
      • Owens J.
      • Mladenov T.
      • Cribb A.
      What justice, what autonomy? The ethical constraints upon personalisation.
      • Clarke J.
      Consumers, clients or citizens? Policy, politica and practice in the reform of social care.
      • Fleming P.
      • McGilloway S.
      • Barry S.
      The successes and challenges of implementing individualised funding and supports for disabled people: an Irish perspective.
      Greater understanding of what choice and control means to those with disability may support implementation of policy and equip health professionals with knowledge to be genuine and empathetic with consumers to meet their need for choice and rights for control in individualized and personalized ways.
      • Ottmann G.
      • Laragy C.
      • Haddon M.
      Experiences of disability consumer-directed care users in Australia: results from a longitudinal qualitative study.
      • Lord J.
      • Hutchison P.
      Individualised support and funding: building blocks for capacity building and inclusion.
      • Fleming P.
      • McGilloway S.
      • Barry S.
      The successes and challenges of implementing individualised funding and supports for disabled people: an Irish perspective.
      Therefore, the purpose of this review was to synthesize the knowledge generated through a range of methodologies, samples, and interpretations on how choice and control is conceptualized by people with SCI. The question guiding this review was, “What are the views of people with SCI on their ability to exercise choice and control in their daily life?”

      Methods

      Our review was registered with the International Prospective Register of Systematic Reviews, PROSPERO, in May 2016. As the research was about perspectives, we chose to only include data from qualitative research.

      Search strategy

      Electronic databases searched were Medline, Academic Search Premier, CINAHL, Cochrane, EMBASE, HealthSource, ProQuest, PsychInfo, SAGE, and SCOPUS from 1980 until May 2016. The search was rerun from 2016 to September 2018 with EMCARE replacing CINAHL and no search in SAGE or ProQuest as these databases were no longer available to us. Papers published prior to 1980 were situated in an institutionalized context and therefore unlikely to be relevant. The operational definitions of choice and control are based on a psychological perspective that understands choice as the opportunity to make decisions when presented with 2 or more options, while control is the opportunity to influence an action by initiating, maintaining, ceasing, or changing form, strength, or rate.
      • Gerrig R.
      • Zimbardo P.G.
      • Campbell A.J.
      • Cumming S.R.
      • Wilkes F.J.
      Psychology and life.
      (p5) We used the search terms of decision making, autonomy, personal autonomy, and agency for choice; and personal control, power, and self-determination for control. These search terms were initially established in Medline (supplemental appendix S1, available online only at http://www.archives-pmr.org/), were peer reviewed by an academic librarian, and then adapted for use in each database. There were no limits on language of studies, and reference lists of relevant studies were hand searched to source additional papers.

      Study selection

      Selection began with removal of duplicates followed by double review of each title and abstract and full text using Covidencea software. A third reviewer resolved any conflicts that arose. Selection of references for inclusion in the meta-synthesis were based on the following inclusion criteria: (1) participants over 18 years, had SCI of any sort and lived in the community; (2) data from people with SCI could be separated from other participant groups (ie, health professionals, caregivers); (3) included perspectives about choice and control; and (4) qualitative research design. Exclusion criteria included (1) data from people with SCI could not be extracted from other participants and (2) did not include any data about choice and control or did not provide enough detail to inform our understanding of the concepts of choice and control.

      Critical appraisal of selected papers

      A critical appraisal using the McMaster criteria
      • Letts L.
      • Wilkins S.
      • Lam M.
      • Stewart D.
      • Bosch J.
      • Westmorland M.
      Critical review form – qualitative studies version 2.0.
      was conducted. Two reviewers critically appraised all the selected papers and the appraisal findings were compared and discussed to reach agreement about interpretation. Appraisal decisions were based on what was included in the journal articles which may have been subject to reporting limitations.

      Data analysis

      The process of analysis and synthesis followed Noblit and Hare
      • Noblit G.W.
      • Hare R.D.
      Meta-ethnography: synthesising qualitative studies.
      and enabled us to arrive at findings with greater conceptual clarity than single studies alone.
      • Murray C.
      • Stanley M.
      Meta-synthesis de-mystified: connecting islands of knowledge.
      This process is well recognized in health and accounts for all data rather than just common data across studies.
      • Thorne S.
      Metasynthetic madness: what kind of monster have we created?.
      First-order analysis
      • Murray C.
      • Stanley M.
      Meta-synthesis de-mystified: connecting islands of knowledge.
      involved 2 reviewers reading all the studies in full and identifying findings that related to the concepts of choice and control. Any differences in understanding of concepts were discussed and resolved by consensus. Identified data were then extracted into a single spreadsheet and each segment of data coded. Participant quotes were included against the relevant piece of coded text. The second-order analysis compared and sorted coded data from the spreadsheet into broad categories and was conducted independently by 2 authors. Third-order analysis included discussion among all authors to compare the 2 sets of categories and further synthesize and reduce the data into broad overarching themes with subthemes.

      Rigor

      A team of researchers were involved in this review to strengthen the findings.
      • Lee R.P.
      • Hart R.
      • Watson R.
      • Rapley T.
      Qualitative synthesis in practice: some pragmatics of meta-ethnography.
      We followed the reporting guidelines for enhancing transparency in the synthesis of qualitative research proposed by Tong et al.
      • Tong A.
      • Flemming K.
      • McInnes E.
      • Oliver S.
      • Craig J.
      Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ.
      The update of the search yielded 9 new papers for analysis and synthesis. The findings from these papers were consistent with our existing themes and subthemes and we, therefore, reached data saturation with no new findings emerging.

      Findings

      Search outcomes

      Following removal of duplicates, there were 6706 studies for title and abstract screening which then left 127 articles for full text retrieval and review. Full text review reduced the number of included studies to 29. Reasons for exclusion are detailed in the flow chart provided in figure 1. One study was in Spanish and needed interpretation.
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      Figure thumbnail gr1
      Fig 1Flow chart of search and screening process.

      Study characteristics

      Studies included in the meta-synthesis originated in 11 different countries. The oldest study
      • Bell P.
      • Hinojosa J.
      Perception of the impact of assistive devices on daily life of three individuals with quadriplegia.
      was American from 1995 and the most recent
      • Braaf S.C.
      • Lennox A.
      • Nunn A.
      • Gabbe B.J.
      Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs.
      was published in 2018 from Australia. Overall, the studies included perspectives from 801 participants. Two studies drew their data from the same group and so their 11 participants (men) were only counted once.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      Similarly, another 2 studies also drew their data from the same group and their 7 participants were only counted once.
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      • Munce S.E.P.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
      Further details of the studies are available in table 1 with expanded information in supplemental appendix S2 (available online only at http://www.archives-pmr.org/).
      Table 1Characteristics of included studies
      AuthorNo. of Participants (N=801)Study Aim
      Bell and Hinjosa
      • Bell P.
      • Hinojosa J.
      Perception of the impact of assistive devices on daily life of three individuals with quadriplegia.
      3To explore perceptions of 3 men with SCIs regarding the effect of assistive devices on their daily lives.
      Braff et al
      • Braaf S.C.
      • Lennox A.
      • Nunn A.
      • Gabbe B.J.
      Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs.
      22To explore the needs of people living with an SCI receiving formal caregiver and hospital services in Victoria, Australia.
      Carr et al
      • Carr J.J.
      • Kendall M.B.
      • Amsters D.I.
      • et al.
      Community participation for individuals with spinal cord injury living in Queensland, Australia.
      8To determine factors associated with community participation for individuals with an SCI.
      Crewe
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      259To describe what work means to the lives of people with an SCI.
      Day
      • Day M.
      The role of intial physical activity experiences in promoting posttraumatic growth in Paralympic athletes with an acquired disability.
      1To explore Paralympics athletes’ lived experiences of becoming physically active after disability.
      Dickson et al
      • Dickson A.
      • Allan D.
      • O'Carroll R.
      Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis.
      8To explore experiences of loss after an SCI.
      Duggan et al
      • Duggan C.
      • Wilson C.
      • DiPonio L.
      • Trumpower B.
      • Meade M.A.
      Resilience and happiness after spinal cord injury: a qualitative study.
      231To identify factors associated with resilience among individuals with an SCI.
      Fadyl and McPherson
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      13To report influences on decisions about seeking employment/resuming employment following an SCI.
      Gifre et al
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      18To identify the factors that can facilitate or hinder the quality of life for people with an SCI.
      Goodwin et al
      • Goodwin D.
      • Peco J.
      • Ginther N.
      Hiking excursions for persons with disabilities: experiences of interdependence.
      4To understand the experience of participating in a group assisted outdoor hiking excursion.
      Guilcher et al
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      14To understand the journey of care in the prevention and management of secondary health conditions following an SCI.
      Hammell
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      15To explore perceptions of quality of life for people living with an SCI in the community.
      Hill et al
      • Hill J.N.
      • Balbale S.
      • Lones K.
      • LaVela S.L.
      Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
      9To understand how individuals with an SCI define function, facilitators, and barriers to function and adaptations to support function.
      Ide-Okochi et al
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      29To explore perceptions, roles, and meanings of self-care for people with a cervical SCI.
      Lindberg et al
      • Lindberg J.
      • Kreuter M.
      • Taft C.
      • Person L.O.
      Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury.
      10To explore the meaning of patient participation in care and rehabilitation from the perspective of patients with an SCI.
      Lucke
      • Lucke K.T.
      Outcomes of nurse caring as perceived by individuals with spinal cord injury during rehabilitation.
      22To describe rehabilitation outcomes of “nurse caring” for people with an SCI.
      Molton and Yorkston
      • Molton I.R.
      • Yorkston K.M.
      Growing older with a physical disability: a special application of the successful aging paradigm.
      13To identify aspects of aging in the context of disability.
      Munce et al
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      7To explore facilitators and barriers to self-management to prevent secondary complications.
      Munce et al
      • Munce S.E.P.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
      7To identify the meaning of self-management for people with an SCI.
      Nunnerley et al
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      9To understand the lived experience of the transition from rehabilitation to community participation.
      O’Connor et al
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      7To examine the experience of living in the community with paraplegia and conceptualize this private experience in a sociopolitical context.
      Pearcey et al
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      14To examine the changes that occur in personal relationships after an SCI injury and the importance of participating in relationships.
      Rohatinsky et al
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      23To explore how the empowerment process is expressed by persons with an SCI.
      Sand et al
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      19To describe the experiences of the rehabilitation process for people with an SCI.
      Scheel-Sailer et al
      • Scheel-Sailer A.
      • Post M.W.
      • Michel F.
      • Weidmann-Hügle T.
      • Baumann Hölzle R.
      Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—a qualitative interview-based study.
      22To retrospectively explore patients’ views on their participation in decision making during their inpatient rehabilitation after an SCI.
      Van de Velde et al
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      11To explore the experiences of autonomy in the transition period from hospital to home.
      Van de Velde et al
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      11To explore “person-perceived participation” in individuals with an SCI.
      Van de Velde et al
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      12To explore the experiences of men with paraplegia with regard to how they choose activities.
      Verdonck, Nolan, and Chard et al
      • Verdonck M.
      • Nolan M.
      • Chard G.
      Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
      5To explore the subjective meaning of an environmental control unit.

      Critical appraisal findings

      The findings from the appraisal are available in table 2. A consistent methodological limitation across the studies was a lack of explanation of the role of the researchers, their motives for conducting the research, and whether there were existing relationships with the participants.
      Table 2Critical appraisal against McMaster criteria
      CriteriaBell and Hinjosa
      • Bell P.
      • Hinojosa J.
      Perception of the impact of assistive devices on daily life of three individuals with quadriplegia.
      Braff et al
      • Braaf S.C.
      • Lennox A.
      • Nunn A.
      • Gabbe B.J.
      Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs.
      Carr
      • Carr J.J.
      • Kendall M.B.
      • Amsters D.I.
      • et al.
      Community participation for individuals with spinal cord injury living in Queensland, Australia.
      Crewe
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      Day
      • Day M.
      The role of intial physical activity experiences in promoting posttraumatic growth in Paralympic athletes with an acquired disability.
      Dickson et al
      • Dickson A.
      • Allan D.
      • O'Carroll R.
      Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis.
      Duggan et al
      • Duggan C.
      • Wilson C.
      • DiPonio L.
      • Trumpower B.
      • Meade M.A.
      Resilience and happiness after spinal cord injury: a qualitative study.
      Fadyl and McPherson
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      Gifre et al
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      Goodwin et al
      • Goodwin D.
      • Peco J.
      • Ginther N.
      Hiking excursions for persons with disabilities: experiences of interdependence.
      Guilcher et al
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      Hammell
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      Hill et al
      • Hill J.N.
      • Balbale S.
      • Lones K.
      • LaVela S.L.
      Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
      Ide-Okochi et al
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      Lindberg et al
      • Lindberg J.
      • Kreuter M.
      • Taft C.
      • Person L.O.
      Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury.
      Lucke
      • Lucke K.T.
      Outcomes of nurse caring as perceived by individuals with spinal cord injury during rehabilitation.
      Molton and Yorkston
      • Molton I.R.
      • Yorkston K.M.
      Growing older with a physical disability: a special application of the successful aging paradigm.
      Munce et al
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      Munce et al
      • Munce S.E.P.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
      Nunnerley et al
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      O'Connor et al.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      2004
      Pearcey et al.
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      2007
      Rohatinsky et al.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      2017
      Sand et al.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      2006
      Scheel-Sailer et al.
      • Scheel-Sailer A.
      • Post M.W.
      • Michel F.
      • Weidmann-Hügle T.
      • Baumann Hölzle R.
      Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—a qualitative interview-based study.
      2017
      Van de Velde et al.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      2012
      Van de Velde et al.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      2010
      Van de Velde et al.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      2013
      Verdonck et al.
      • Verdonck M.
      • Nolan M.
      • Chard G.
      Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
      2017
      Study purpose:

      1. Was the purpose and/or research question stated clearly?
      Literature:

      2. Was relevant background literature reviewed?
      Study design:

      3. Was the design appropriate for the study question? (ie, rationale)
      ID
      4. Was a theoretical perspective identified?ID
      5. Are the methods congruent with the philosophical underpinnings and purpose?
      Sampling:
      6. Was the sampling method appropriate to the study purpose or research question?ID
      7. Was sampling done until redundancy in data was reached?IDIDIDIDIDIDXIDIDIDIDIDIDXXXXX
      8. Was informed consent and ethical approval obtained?IDIDIDIDIDID
      Data collection:

      Descriptive clarity
      9. Clear and complete description of site?IDIDIDIDID
      10. Participants? (demographics)IDID
      Discrepancy between demographic data in text and table.
      ID
      11. Role of researcher and relationship with participants?XXIDIDXIDIDIDIDIDIDXXIDIDIDIDIDXXXID
      12. Identification of assumptions and biases of researcherXXXXXXXXXXXXXIDXXXXIDXXXXXID
      Procedural rigor
      13. Procedural rigor was used in data collection strategies?IDIDIDID
      Data analyses:

      Analytical rigor
      14. Data analyses were inductive?X
      15. Findings were consistent with and reflective of data?
      Auditability
      16. Decision trail developed?IDIDIDIDID
      17. Process of analyzing the data was described adequately?
      Theoretical connections
      18. Did a meaningful picture of the phenomenon under study emerge?
      Overall rigor
      19. Was there evidence of the four components of trustworthiness?
       -CredibilityIDIDIDIDIDID
       -TransferabilityIDIDIDID
       -DependabilityIDIDID
       -ConfirmabilityIDIDIDIDIDIDID
      Conclusions and implications
      20. Conclusions were appropriate given the study findings?IDIDID
      NOTE. ✓=Sufficient detail provided to meet a criterion; X=McMaster question not met; ID=Insufficient detail in regard to questions in evaluation tool.
      Discrepancy between demographic data in text and table.

      Meta-synthesis findings

      Moving between first-, second-, and third-order analyses enabled reduction and synthesis of the data into 2 interrelated themes. The 2 themes and their subthemes are explained below. Source documents for each theme and subtheme can be found in table 3 and supporting quotes for each theme are provided in supplemental appendix S3 (available online only at http://www.archives-pmr.org/).
      Table 3Themes with source documents
      Themes and SubthemesNo. of StudiesStudies
      Theme 1: Experiencing vulnerability or security
       Enforced passivity17(27, 28, 30, 31, 33, 36, 38, 40-43, 47-51, 53, 54)
       Frustrating environmental and service barriers13(27-29, 33, 38, 40-42, 46-50)
       Social (in) visibility9(27, 30, 34, 36, 38, 43, 48, 49, 53)
       Valuable relationships15(17, 29, 31, 36-38, 40, 41, 43, 44, 48-51, 53)
       Responsive professionals10(27, 29, 34, 35, 40, 44, 45, 47, 51, 52)
      Theme 2: Adapting to bounded abilities
       Reconciling loss13(27, 28, 30, 34-36, 40, 43, 46-48, 51, 53)
       Finding purpose11(28, 30, 31, 33-35, 38, 41, 48, 50, 53)
       Expressing self15(17, 29-31, 36, 38, 39, 41-43, 45-47, 50, 53)
       Learning10(28, 34-37, 41, 47, 49, 50, 53)
       Planning10(27, 29, 32, 33, 36, 38, 41, 48, 50, 51)
       Prioritizing11(17, 35, 36, 38-40, 43, 47, 48, 51, 54)
       Seeing the turning points15(27, 30, 31, 34, 35, 38, 41, 43, 45, 46, 49-53)
       Keeping hope12(17, 32, 34, 35, 37, 38, 41, 46, 49, 51, 53, 54)

      Theme 1: experiencing vulnerability and security

      The first theme captures data about environmental and societal factors which generate vulnerability or create security following SCI. Reliance on others to feel secure at times limited choices and undermined control. Social networks including health professionals influenced opportunities and facilitated roles available to participants. The balance of power and trust between those with SCI and their paid and unpaid caregivers, their health professionals, and their friends or family were key determinants as to how vulnerability and security were experienced. To enable people with SCI genuine control over their lives, health professionals needed to listen and be responsive.

      Enforced passivity

      Participants were forced into passivity by social expectations of compliance, overprotection, being given choices that were not genuine, and environmental barriers. Worry about being an imposition on others
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      or potential retribution if they were not friendly
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      diminished their power and, hence, decreased control over their life. Some participants described their experience in institutional care as being at the “mercy of staff”
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      (p611) and because of their reliance on caregivers
      • Bell P.
      • Hinojosa J.
      Perception of the impact of assistive devices on daily life of three individuals with quadriplegia.
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      they placed their needs secondary and did not complain. Caregivers were sometimes overprotective
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      and gave or offered unnecessary assistance.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      However, to ensure security, participants could also make a conscious choice to be passive and accepting.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Hill J.N.
      • Balbale S.
      • Lones K.
      • LaVela S.L.
      Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      Passivity was encouraged when participants found themselves obligated to permanently adopt roles they were “steered”
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      (p652) toward by well-meaning family members or health professionals.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      When participants were not properly included in decisions about role choices, they were perceived as ingenuine.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      Assumptions made by health professionals could lead to the underestimation of need for services,
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      poor design of buildings,
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      or lack of access to technology
      • Verdonck M.
      • Nolan M.
      • Chard G.
      Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
      and forced participants to be dependent when they otherwise would have been autonomous. To change their environment, or to access services,
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      participants were required to “fight,”
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      (p613),
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      (p774) “revolt,”
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      (p655) and be “stubborn.”
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      (p496) Respect for privacy was often ignored
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      with an assumption that being exposed and vulnerable was part of their new life.
      • Dickson A.
      • Allan D.
      • O'Carroll R.
      Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis.
      Similarly, there were accounts of wheelchairs limiting function
      • Hill J.N.
      • Balbale S.
      • Lones K.
      • LaVela S.L.
      Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
      and the environmental design in institutions diminishing dignity, enhancing vulnerability, and negatively affecting their ability to socialize.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.

      Frustrating environmental and service barriers

      Vulnerability was exacerbated by limited access to their workplace, home, or transport.
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      • Hill J.N.
      • Balbale S.
      • Lones K.
      • LaVela S.L.
      Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
      If modifications were done poorly or ramps not available, choices were diminished for accessing the community,
      • Bell P.
      • Hinojosa J.
      Perception of the impact of assistive devices on daily life of three individuals with quadriplegia.
      • Carr J.J.
      • Kendall M.B.
      • Amsters D.I.
      • et al.
      Community participation for individuals with spinal cord injury living in Queensland, Australia.
      • Hill J.N.
      • Balbale S.
      • Lones K.
      • LaVela S.L.
      Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
      • Molton I.R.
      • Yorkston K.M.
      Growing older with a physical disability: a special application of the successful aging paradigm.
      performing roles at home,
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      and going to work or socializing.
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      Those participants living rurally were particularly affected by access issues, which resulted in having to work harder
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      or even leaving support networks to seek marginal improvements in community mobility in the city.
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      • Hill J.N.
      • Balbale S.
      • Lones K.
      • LaVela S.L.
      Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      Participants needed systems to be working in their favor to get the necessary equipment and resources to have control over reconstruction of their lives.
      • Braaf S.C.
      • Lennox A.
      • Nunn A.
      • Gabbe B.J.
      Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs.
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      However, “paternalistic” policies
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      (p899) limited choice in service providers and equipment.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      Notable inequities were observed between those who had insurance and those who relied on public services.
      • Braaf S.C.
      • Lennox A.
      • Nunn A.
      • Gabbe B.J.
      Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs.
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.

      Social (in)visibility

      Being different created discomfort both for the people with SCI as well as the wider community.
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      The physical appearance in a wheelchair or using mobility aids negatively affected how others perceived their ability to make their own choices
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      and this stigma resulted in them feeling “invisible,”
      • Dickson A.
      • Allan D.
      • O'Carroll R.
      Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis.
      (p416) not knowing how to behave
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      and potentially being excluded.
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      Lack of control over their own abilities as well as lack of control over community responses to their situation created limitations on choices about social options.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      There were accounts of participants choosing to pursue certain activities to earn respect from others, but instead experiencing disapproval due to the perceived risk of harm.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      Some began to withdraw socially
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      finding it difficult “to see everyone at bum level”
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      (p211) when in the wheelchair. Others found that when they ventured out, they were offered unsolicited assistance by community members and received attention that they felt was unnecessary and at times generated feelings of anger.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.

      Valuable relationships

      Social networks gave participants greater control over their choices and made them feel less vulnerable.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Dickson A.
      • Allan D.
      • O'Carroll R.
      Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis.
      • Duggan C.
      • Wilson C.
      • DiPonio L.
      • Trumpower B.
      • Meade M.A.
      Resilience and happiness after spinal cord injury: a qualitative study.
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      • Lindberg J.
      • Kreuter M.
      • Taft C.
      • Person L.O.
      Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury.
      Having reliable social and community networks provided both tangible (access, opportunity, resources) and nontangible (friendship, encouragement, honesty) means of support.
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Duggan C.
      • Wilson C.
      • DiPonio L.
      • Trumpower B.
      • Meade M.A.
      Resilience and happiness after spinal cord injury: a qualitative study.
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      Loss of roles,
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      such as contributing to housework or childcare,
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      and decline in social networks
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      enhanced their feelings of vulnerability. Preference for family caregivers, paid caregivers, or combinations of these were variable.
      • Braaf S.C.
      • Lennox A.
      • Nunn A.
      • Gabbe B.J.
      Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs.
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      However, there was less guilt associated with relying on paid caregivers rather than family.
      • Braaf S.C.
      • Lennox A.
      • Nunn A.
      • Gabbe B.J.
      Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs.
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      • Lindberg J.
      • Kreuter M.
      • Taft C.
      • Person L.O.
      Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury.
      There were grave concerns expressed about the potential for relationships to break down in the face of shifting responsibilities and participants worried about being an imposition.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      They, therefore, ensured that those affected were included in decision making.
      • Lindberg J.
      • Kreuter M.
      • Taft C.
      • Person L.O.
      Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury.

      Responsive professionals

      The capacity of people with SCI was highly influenced by the power relationships with the health professionals they had contact with. Participants wanted to be able to take responsibility for their care
      • Braaf S.C.
      • Lennox A.
      • Nunn A.
      • Gabbe B.J.
      Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs.
      but to do so required courage to ask questions
      • Scheel-Sailer A.
      • Post M.W.
      • Michel F.
      • Weidmann-Hügle T.
      • Baumann Hölzle R.
      Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—a qualitative interview-based study.
      and self-advocate with health professionals who were willing to listen.
      • Lindberg J.
      • Kreuter M.
      • Taft C.
      • Person L.O.
      Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury.
      There was considerable criticism of the impersonalized approach taken by health professionals who hid behind their “checklists,”
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      (p1168) had a “silo narrow minded lens,”
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      (p900) who did not listen,
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      • Scheel-Sailer A.
      • Post M.W.
      • Michel F.
      • Weidmann-Hügle T.
      • Baumann Hölzle R.
      Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—a qualitative interview-based study.
      introduced work options too early,
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      and were not always flexible and responsive to the needs of people following an SCI.
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      Health professionals were described as giving vague information
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      • Scheel-Sailer A.
      • Post M.W.
      • Michel F.
      • Weidmann-Hügle T.
      • Baumann Hölzle R.
      Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—a qualitative interview-based study.
      about prognosis
      • Lindberg J.
      • Kreuter M.
      • Taft C.
      • Person L.O.
      Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury.
      and participants did not know what to ask
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      and did not have enough information about medical status
      • Scheel-Sailer A.
      • Post M.W.
      • Michel F.
      • Weidmann-Hügle T.
      • Baumann Hölzle R.
      Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—a qualitative interview-based study.
      or equipment.
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      There seemed to be little accounting for changing ability to exercise choice and control. For example, participants may not have felt emotionally able to make decisions or process a lot of information early in their recovery
      • Lindberg J.
      • Kreuter M.
      • Taft C.
      • Person L.O.
      Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury.
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      • Scheel-Sailer A.
      • Post M.W.
      • Michel F.
      • Weidmann-Hügle T.
      • Baumann Hölzle R.
      Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—a qualitative interview-based study.
      making it important for health professionals to judge readiness for decision making and know when to push and when to wait.
      • Scheel-Sailer A.
      • Post M.W.
      • Michel F.
      • Weidmann-Hügle T.
      • Baumann Hölzle R.
      Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—a qualitative interview-based study.
      Unfortunately, opportunities for choice were sometimes offered before the person was ready and then not always reoffered.
      • Day M.
      The role of intial physical activity experiences in promoting posttraumatic growth in Paralympic athletes with an acquired disability.
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      However, this was not always the case, with some participants describing health professionals who were sensitive to their changing needs and to their readiness for both information and control over their choices both in rehabilitation settings
      • Lucke K.T.
      Outcomes of nurse caring as perceived by individuals with spinal cord injury during rehabilitation.
      • Scheel-Sailer A.
      • Post M.W.
      • Michel F.
      • Weidmann-Hügle T.
      • Baumann Hölzle R.
      Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—a qualitative interview-based study.
      and the community.
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.

      Theme 2: adapting to bounded abilities

      This theme reflects the role that the ability to control change and make choices has over the process of adaptation following SCI. This process was reliant on both external resources (support and information) and gathering personal strength.

      Reconciling loss

      Initially participants reported strong feelings of loss,
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Day M.
      The role of intial physical activity experiences in promoting posttraumatic growth in Paralympic athletes with an acquired disability.
      • Dickson A.
      • Allan D.
      • O'Carroll R.
      Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis.
      • Molton I.R.
      • Yorkston K.M.
      Growing older with a physical disability: a special application of the successful aging paradigm.
      mourned missed opportunities,
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      and could not bring themselves to forward plan.
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      There were significant emotional struggles,
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      feeling that life may never be as good as it used to be, and sometimes, even after several years, this feeling would return.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      Some lacked motivation to try new things
      • Bell P.
      • Hinojosa J.
      Perception of the impact of assistive devices on daily life of three individuals with quadriplegia.
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      and some felt despair that their life was over.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      Reliance on others, loss of choices, and difficulty performing formerly valued activities resulted in frustration and a diminished sense of identity.
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.

      Finding purpose

      Participants expressed a desire to contribute to a greater purpose, feel useful, and give to others.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      There was general agreement that the motivation to act needed to be intrinsic
      • Carr J.J.
      • Kendall M.B.
      • Amsters D.I.
      • et al.
      Community participation for individuals with spinal cord injury living in Queensland, Australia.
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      and their choices of activities were expressions of their identity.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      They were careful to pursue challenges that gave them feelings of success
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      and tested their abilities.
      • Day M.
      The role of intial physical activity experiences in promoting posttraumatic growth in Paralympic athletes with an acquired disability.
      Participants chose activities for a sense of achievement such as shopping for bargains on television
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      and playing the stock market.
      • Bell P.
      • Hinojosa J.
      Perception of the impact of assistive devices on daily life of three individuals with quadriplegia.
      Paid work was valued for financial outcomes and self-esteem but was often difficult to find and maintain
      • Bell P.
      • Hinojosa J.
      Perception of the impact of assistive devices on daily life of three individuals with quadriplegia.
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      creating compromises in their work choices.
      • Carr J.J.
      • Kendall M.B.
      • Amsters D.I.
      • et al.
      Community participation for individuals with spinal cord injury living in Queensland, Australia.
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      Participants reported difficulty consistently attending work,
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      only committing to 2 to 4 hours of work a day due to fatigue,
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      predicting early retirement due to changing function, opting for their second choice as this was easier on their body, experiencing chronic pain,
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      and acute and chronic health problems due to work.
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.

      Expressing self

      There were stories of self-expression through wheelchair sports,
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      writing, painting,
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      and music.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      Taking control of when and how activities were done replenished normality,
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      • Hill J.N.
      • Balbale S.
      • Lones K.
      • LaVela S.L.
      Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
      • Molton I.R.
      • Yorkston K.M.
      Growing older with a physical disability: a special application of the successful aging paradigm.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      security,
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Verdonck M.
      • Nolan M.
      • Chard G.
      Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
      and self-confidence
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      and was described as pivotal to being able to self-manage.
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      Control was enhanced when participants had the confidence to express their needs to others
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      • Lucke K.T.
      Outcomes of nurse caring as perceived by individuals with spinal cord injury during rehabilitation.
      and this arose from being equipped with knowledge
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      and awareness of future options.
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      • Braaf S.C.
      • Lennox A.
      • Nunn A.
      • Gabbe B.J.
      Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs.
      Some participants felt that reduction in their personal control did not diminish their identity and personality, while others found the opposite.
      • Dickson A.
      • Allan D.
      • O'Carroll R.
      Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis.
      Eventually, participants became accustomed to and accepted themselves.
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      • Dickson A.
      • Allan D.
      • O'Carroll R.
      Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis.
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      Indeed, those who had lived with SCI for the longest gave the highest appraisals of quality of life.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      They had a sense of themselves as being in control of the help they received
      • Goodwin D.
      • Peco J.
      • Ginther N.
      Hiking excursions for persons with disabilities: experiences of interdependence.
      • Molton I.R.
      • Yorkston K.M.
      Growing older with a physical disability: a special application of the successful aging paradigm.
      and the choices they made
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      even though physical control over their bodies was diminished.

      Learning

      Adaptive responses to their changed abilities included being open to new learning, new roles, and ways of thinking and doing.
      • Bell P.
      • Hinojosa J.
      Perception of the impact of assistive devices on daily life of three individuals with quadriplegia.
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      • Day M.
      The role of intial physical activity experiences in promoting posttraumatic growth in Paralympic athletes with an acquired disability.
      • Dickson A.
      • Allan D.
      • O'Carroll R.
      Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis.
      • Duggan C.
      • Wilson C.
      • DiPonio L.
      • Trumpower B.
      • Meade M.A.
      Resilience and happiness after spinal cord injury: a qualitative study.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      However, the “real world” was more unpredictable and physically challenging
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      (p1167) than hospital environments and tangible support was needed
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      to overcome fear and to learn to trust their abilities.
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      Participants meticulously problem-solved to find new ways to achieve their goals and discover different options.
      • Bell P.
      • Hinojosa J.
      Perception of the impact of assistive devices on daily life of three individuals with quadriplegia.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.

      Planning

      Participants diligently planned outings to enable feelings of safety and to maintain control over their health. Choices to alter their established routine following their SCI were made with careful consideration due to cognitive and physical effort needed.
      • Carr J.J.
      • Kendall M.B.
      • Amsters D.I.
      • et al.
      Community participation for individuals with spinal cord injury living in Queensland, Australia.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      Attending to daily commitments was a lot more time consuming than prior to the SCI.
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      Some participants grieved over loss of their ability to be spontaneous because everything took longer
      • Munce S.E.P.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      and they needed assistance,
      • Carr J.J.
      • Kendall M.B.
      • Amsters D.I.
      • et al.
      Community participation for individuals with spinal cord injury living in Queensland, Australia.
      • Dickson A.
      • Allan D.
      • O'Carroll R.
      Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      which diminished their fun.
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      Scrupulous attention was given to ensure nothing went wrong
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      and they strove to have vigilant control over maintenance of their body to avoid issues with bowel, bladder,
      • Braaf S.C.
      • Lennox A.
      • Nunn A.
      • Gabbe B.J.
      Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs.
      • Carr J.J.
      • Kendall M.B.
      • Amsters D.I.
      • et al.
      Community participation for individuals with spinal cord injury living in Queensland, Australia.
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      pressure sores, having spasms, or dysreflexia.
      • Munce S.E.P.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
      • Carr J.J.
      • Kendall M.B.
      • Amsters D.I.
      • et al.
      Community participation for individuals with spinal cord injury living in Queensland, Australia.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.

      Prioritizing

      As participants adjusted to their new abilities, there was an accompanying reevaluation of their goals and priorities
      • Lucke K.T.
      Outcomes of nurse caring as perceived by individuals with spinal cord injury during rehabilitation.
      • Nunnerley J.L.
      • Hay-Smith E.J.
      • Dean S.G.
      Leaving a spinal unit and returning to the wider community: an interpretative phenomenological analysis.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      • Verdonck M.
      • Nolan M.
      • Chard G.
      Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
      and decisions were made to prioritize activities that sustained rather than drained their energy.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      • Verdonck M.
      • Nolan M.
      • Chard G.
      Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
      There were new pressures and responsibilities that needed to be accounted for such as the time taken and cost for self-care and maintenance of equipment.
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      • Guilcher S.J.T.
      • Craven B.C.
      • Lemieux-Charles L.
      • Casciaro T.
      • McColl M.A.
      • Jaglal S.B.
      Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.
      Participants prioritized maintaining their health as further loss of abilities, even if temporary, had significant effects on their physical and mental health, and on their caregivers.
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      They came to realize that accepting help was necessary
      • O'Connor D.L.
      • Young J.M.
      • Saul M.J.
      Living with paraplegia: tensions and contradictions.
      to avoid missing out on experiences and life milestones.
      • Goodwin D.
      • Peco J.
      • Ginther N.
      Hiking excursions for persons with disabilities: experiences of interdependence.
      • Lucke K.T.
      Outcomes of nurse caring as perceived by individuals with spinal cord injury during rehabilitation.

      Seeing the turning points

      Perceptions of ability to exert choice and control were influenced by reflective processes where participants drew on their personal resources to find strength or made self-preserving decisions to maintain control over their emotions. For example, some participants initially felt disconnected from and did not like their bodies
      • Ide-Okochi A.
      • Tadaka E.
      • Fujimura K.
      The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study.
      but noticed a point in which their perception shifted. Participants referred to these moments as being crucial for choosing to turn toward hope and restore control through a readiness for action.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Lucke K.T.
      Outcomes of nurse caring as perceived by individuals with spinal cord injury during rehabilitation.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      This was explained in various ways including: “switching” roles from passive to active
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
      (p352),
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      ; experiencing a “reintegration of self”
      • Lucke K.T.
      Outcomes of nurse caring as perceived by individuals with spinal cord injury during rehabilitation.
      (p249) whereby participants explored the significance of the trauma on their lives
      • Day M.
      The role of intial physical activity experiences in promoting posttraumatic growth in Paralympic athletes with an acquired disability.
      ; no longer experiencing a fracture between their physical body and their sense of self thus realizing that their self-worth was not linked to physique
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      ; accepting that adversity was not unique to them
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      ; taking time to overcome grief associated with loss
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      ; deciding to start again with life from the moment of the incident
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      ; deciding to focus on their whole lifespan as one unit rather than preinjury and postinjury
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.
      • Molton I.R.
      • Yorkston K.M.
      Growing older with a physical disability: a special application of the successful aging paradigm.
      ; seeking continuity from their past selves and their current selves to reconstruct their identity
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      ; accepting their “new life” in a wheelchair
      • Scheel-Sailer A.
      • Post M.W.
      • Michel F.
      • Weidmann-Hügle T.
      • Baumann Hölzle R.
      Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—a qualitative interview-based study.
      (p1136); deliberately making activity choices that balanced expectations of others and their personal needs
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      ; deciding to stop focusing on boundaries and think about possibilities
      • Day M.
      The role of intial physical activity experiences in promoting posttraumatic growth in Paralympic athletes with an acquired disability.
      ; and deciding to stop fighting their disability.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      These moments had various triggers including meeting and receiving information from people living with SCI who seemed healthy and content,
      • Rohatinsky N.
      • Goodridge D.
      • Rogers M.R.
      • Nickel D.
      • Linassi G.
      Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      receiving explicit support for reconstruction of their lives,
      • Gifre M.
      • del Valle A.
      • Yuguero M.
      • Gil A.
      • Monreal P.
      [Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      becoming mobile through starting to drive again or getting employment,
      • Crewe N.
      A 20-year longitudinal perspective on the vocational experiences of persons with spinal cord injury.
      and having the opportunity to talk about and get to know themselves better.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Devisch I.
      • Vanderstraeten G.
      The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home.

      Keeping hope

      A positive adaptation was to recalibrate perspective and to focus on life satisfaction.
      • Day M.
      The role of intial physical activity experiences in promoting posttraumatic growth in Paralympic athletes with an acquired disability.
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      • Van de Velde D.
      • Bracke P.
      • Van Hove G.
      • Josephsson S.
      • Vanderstraeten G.
      How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
      Participants made deliberate choices to stay positive,
      • Munce S.E.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.
      • Duggan C.
      • Wilson C.
      • DiPonio L.
      • Trumpower B.
      • Meade M.A.
      Resilience and happiness after spinal cord injury: a qualitative study.
      • Molton I.R.
      • Yorkston K.M.
      Growing older with a physical disability: a special application of the successful aging paradigm.
      to stay healthy,
      • Munce S.E.P.
      • Webster F.
      • Fehlings M.G.
      • Straus S.E.
      • Jang E.
      • Jaglal S.B.
      Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
      to deepen and strengthen their relationships with others,
      • Duggan C.
      • Wilson C.
      • DiPonio L.
      • Trumpower B.
      • Meade M.A.
      Resilience and happiness after spinal cord injury: a qualitative study.
      • Pearcey T.E.
      • Yoshida K.K.
      • Renwick R.M.
      Personal relationships after a spinal cord injury.
      • Sand A.
      • Karlberg I.
      • Kreuter M.
      Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.
      to find joy in life and work,
      • Fadyl J.
      • McPherson K.
      Understanding decisions about work after spinal cord injury.
      to notice nature, to “get in touch” with their spiritual self,
      • Duggan C.
      • Wilson C.
      • DiPonio L.
      • Trumpower B.
      • Meade M.A.
      Resilience and happiness after spinal cord injury: a qualitative study.
      (p612),
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      and to appreciate the “luxury” of having time for thinking
      • Hammell K.W.
      Quality of life among people with high spinal cord injury living in the community.
      (p612) and having time alone.
      • Verdonck M.
      • Nolan M.
      • Chard G.
      Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
      The multifaceted nature of these choices, illustrates that achievement of personal growth is not limited to making choices to be more physically active,
      • Day M.
      The role of intial physical activity experiences in promoting posttraumatic growth in Paralympic athletes with an acquired disability.
      but can also be attributable to things like attending college, moving to a “more accessible apartment,” establishing new relationships, and acting o